Our last Visit to the Mind Institute

Here are a few pictures from our last visit to the Mind Institute. We actually went up twice on a Wednesday and a Thursday. The first day we did several assessments related to a new study using computer software to improve working memory. Holly had such bad attention skills she barely got through all the assessments, and although it would be totally awesome for her to participate in the program, with the theory that an increase in working memory will improve attention and impulsively we have thus far not been very successful. She has to play the game for 15 minutes every day. Mommy is having trouble working it into our daily routine, especially since most days we aren't home until 7:00 PM and she is really tired by then, and on the days we did try and play Holly has a really hard time playing for the full 15ish minutes. She has to complete three of the "games" each time.

On the second day we did the EEG and we did the Stanford Binet IQ test which was pretty amazing. She did this assessment totally by herself, it was the first time. We were able to watch through the two way mirror and she actually was in the room at least an hour. Though she would ask for Mommy quite a bit she was easily redirected and was able to complete the entire test. Her scores were good and we were super happy with her. it was a fun visit.

Dr. Hagerman recommended we continue on the Minocycline, her ANA Levels are fine and we did some additional blood draws. So we will go back again either 5 weeks after finishing the protocol for the Working Memory Pilot or in about 6 months to follow up on her meds.

The Saga Continues

Here are some really fun pictures of Holly and Chloe playing. Rather then talking about them, I am going to throw myself pity party number 2, and continue the ongoing saga of Holly being sick. So last update Holly had the eye thing and the double whammy ear infection. She was feeling better and bouncing off the walls on Saturday, and we went to a late afternoon pot luck play date which was a lot of fun. On Sunday we just ran errands and hung out at home, we went to Ross and the supermarket, and she was having a fine day. That evening she was getting a little obsessed with asking for a bath.

It started at around 7:00 and she kept asking, signing, going to the door. I wasn't planning on giving her a bath, but finally gave in and told her after dinner. By that time, around 9:00 she was busting at the seams. She tried to bring the chair into the room, she tried to learn how to open a round door knob by hanging on it and using her weight to get it to turn, she was emphatic. So it was off to the bath. At this point, we just though she was being persistent. Her bath was uneventful, but she was sleepy and in bed by 9:45, not typical. I headed to bed at 2:00 and Joel told me she had been tossing and turning all night, she had trouble falling asleep and at this point she was whimpering and fussing again. We gave her a yogurt juice and tried to get her to fall back asleep, she wasn't awake, but something was wrong.

I finally gave her my cell phone to watch a video in hopes that it would calm her and I noticed she was doing something funny with her foot. She didn't want it under the cover and she was pulling it away when I touched it but she was grabbing at it too. Her toe nails were a little rough, and I thought maybe she somehow hurt herself. I didn't want to completely disrupt her and turn all the lights on so Joel got a flash light. Just before this, I was trying to change her diaper, and she kept fussing every time I tried, and I didn't understand why.


So that's when I saw it, her foot was all red and splotchy, and we discovered she had some type of rash. We starting looking all over her body and she ended up having it on both feet on the tops and her ankles, and then on the tops of her hand, a little on her arm and a few very small spots on her belly and back. By this time I was freaking out and the lights were on so we could see what was going on. Joel decided to give her some Benedryl in a bottle and Holly got the idea in her head that she wanted another bath, I think this had something to do with me taking her top off to see where the rash was. I was on the Internet and in my baby books trying to figure out what it was. I was able to rule out most scary things, and the description matched hives, or allergic reaction, not that I could think of what she might be allergic too, but it said warm water would ease the itching, so I gave in and gave her another bath, yes it was 4:00 AM.


By 5:00 she was back in bed and had a bottle, which she drank, but she didn't go to sleep until around 6:00 AM. The Benedryl has the ability to make you drowsy or wired, and I guess in this case it was wired, and she had herself a 4 hour mommy and Daddy Middle of the Night Play Date. We called and cancelled Katie for the morning and all slept in until about 11:00. When we woke up I called the advice nurse. The rash was gone, I saw no evidence of it, but they insisted that I come in and get her checked out so we did.

She did amazingly well at the Doctor's office, instead of screaming the whole time, she only whimpered when they took her temperature, (99.7) but stayed still and then immediately started playing. She was intent on playing with the instrument that they look into your ears with and even tried to put it into her own ear. The doctor came in and took a look and one of her ear infections was healed, but she still had one, in the other ear. And then we looked and found a spot on the top of her hand and a little spot on her arm. So the Doctor asked me a few questions and decided that Holly is most likely allergic to the antibiotics (Amoxicillian) She gave us a prescription for something different that she needed to take for the next 7 days.

This new medication can't be taken with Formula or Milk (within 2 hours), due to the iron, but the Yogurt Juice is Ok. Also the Fomulary comes flavored but they filled it generic which didn't and I could not add any flavoring just in case it was a reaction to the dye or the flavoring. We were at Walgreens almost 45 minutes, that was not fun. She was running around alike a loose chicken from being too cooped up, but I didn;t want to make a trip home and back so I chased and we waited. So we get home and I have to deal with the cleaner coming over and Holly ebing so hyper that she is trying to dump out every toy that Tanta Kat just cleaned and pulled up off the floor for the cleaner.

I am working on getting her a dose of Benedryl and her new Antibiotic since we skipped the mornign dose per Joel's instinct and then the nurse's direction. I am trying to get her to settle in bed and then notice that the entire side of her face in covered in a rash and her hand and arm. I start to freak out again, but remind myself that it has been 10 hours since her last Benedryl and it is only supposed to last 6 hours.

The doctor also told me the rash could last 24-48 hours. So to continue the Benedryl until Tuesday evening and if she has a reaction on Wednesday then she is allergic to the new anti-biotic, which is a distant cousin to the Amoxicillian. I am so not excited about this new development, it would be bad if she is indeed allergic, especially since she is ear infection prone, it needs to be confirmed by a blood test, but the doctor said to wait until we have another reason to draw blood and for the time being avoid Amoxicillian. I was also surprised that she had already been taking it for 4 days, and this was like her 5th ear infection, so she has had it in the past, but the Doctor said it usually takes a few days to react, and that sometimes you grow into the allergy.

Now I am wondering if this could have anything to do with the fact that she was on the Minocyclin, which is a type of antibiotic, could it have created some type of allergy because of the exposure? I don't know, I just hope she isn't allergic to "penicillin" products. So in the end, she never did go down for that nap I was talking about earlier, but she wasn't "that" grumpy. She insisted on another bath tonight and was in bed by 9:30. She did really good for being awake over 10 hours strait. She had a good dinner tonight too, we tried one of those Gerber Graduate Dinners my mom got us over Christmas, 30 seconds in the microwave and she had Mac and Cheese and Veggies, she ate maybe 3/4th of it. She later also ate a 1/2 container of Garden Veggies and picked off my plate eating Fettuccine. Poor baby is such a trooper.

I mostly gave her the bath because she had a bit of diaper rash from being constipated, four difficult poops today and she was red and hurty, the bath helped that and the itching I am sure, Which Joel surmised must be why she was so insistant on the bath the night before. The splotches were just starting to reappear before bed. She had cheese, I hate to deny her when she asks so nice, so for lunch she got yogurt mixed with prunes. Anyways, enough with all that, I will sure be back here whining some more if the Saga continues, no eye drops tonight, Daddy and I aren't good at it, but I think I will give her one more dose in the morning with Tanta Kat's help. The doc said the eyes looked good. Lets hope tonight when I go to bed she will stay asleep, I don't know if I can take another night of sleeping only from 6am-11am. Remember - I am still sick, cough and soar throat :-( I also send well wishes to Katherine, Chloe's mom who is sick too and cancelled our playdate today. it worked out for us in the end, trying to stay home and rest, but we missed them.

Fragile X Friday: Folic Acid

Our Story….



Back in August when Holly was 6 months old we visited the UC Davis MIND Institute and saw Dr. Randi Hagerman. This would have been our third visit and the completion of the Minocycline one month study. We discussed what our options were for moving forward, next steps after the completion of the Minocycline. It was recommended that we wait 1-2 months before doing anything just to make sure there was no skill regression after stopping the Minocycline, and then begin a High Dose Folic Acid treatment. At the time we were seeing Dr. Hagerman under her Research Grant, and she was not able to do any prescribing, but provided me the documentation I would need to have my Pediatrician write the prescription.

The dosage is High, compared to other protocols my pediatrician was used to, and it was not easy to get a liquid preparation, we ended up having to go to Children’s Hospital and the only liquid form they had was the fluid used for IV Administration, it can in several small little IV glass jars and needles that were used to poke the jar and get the liquid out. Insurance did not cover an injectable, and it was not inexpensive, and well to be honest the administration was rather strange and intimidating.

At the time I was quitting my job and we were changing to inferior insurance, and with the reduction in income I wasn’t sure I wanted to buy all of the syringes and IV Vials every month, so we ended up putting of the treatment.

Then I spoke with Sarah over at Love & Survival, and found out Quinn had taken Folic Acid. It was only for a month, and they stopped, but she told me they were able to get a liquid bottle from Elephant Pharmacy that was a fluid not unlike Baby Tylenol and was very easy to administer. Her dosage for a much older and larger boy was much smaller then that recommended for Holly so we again were encouraged and decided to wait yet again, to make sure that Dr. Hagerman Really wanted the high dosage.



Then I read a post from Umma over at Basically FX explaining that Monkey had been on Folic Acid for 4 months and she was very happy with the results. She advised that she was told it takes at least 3-4 months to see a response. So I was glad I had waited, because I would have stopped after 1 month and no response.

Armed with this new information we went for another visit to UC Davis and saw Dr. Hagerman again. Our pediatrician came with us to get a tour of the center, meet Louise and Randi in person, and get all the information she could.

We discussed the new dosage protocol, as Holly was much bigger now, and Dr. Hagerman advised that her Pharmacy will mix up a solution and it was a 3 month supply for only about 20$ She said that I would need to go to a compounding pharmacy locally to refill, but they could call her pharmacy for the recipe. This was encouraging, and so finally 6 months after the fact we finally started.

Folic Acid was much easier to administer compared to the Minocycline as it could be taken with Milk or Formula. It is required that Holly take a supplement with B6, so we are also now giving her a Multivitamin with iron, Vitamin D, and B6 among a few other good things. I give this to her every day in a 6 ounce bottle of Formula right before her morning nap, and it has been about 2 weeks so far.

So I guess in about 10-14 more weeks you will get an update from me on whether or not we think that the Folic Acid has made a difference. From what I have read it is supposed to help with attention and hyperactivity. Holly is a very active girl, she does jump from one thing to another, perhaps it is her environment, I give her so much to play with it is easy to get distracted and bounce around, but she has a stimulated activity and at times she is able to focus on a single toy and play, so maybe this will help.


I am not sure how it works either, it is one of those things that is like, it can’t really hurt you so why not try it and see if it helps, and “maybe” a Fragile X brain doesn’t know how to use the Folic Acid it has, or it has too little, so more helps, but there is no hard and fast proof. But you know what, I am all for try it, and see if it helps. So let’s see.

Here is the technical information below on Folic Acid that might help inform you on the details.

The Research:

Folic Acid

Folic acid was the first medication reported to be beneficial for individuals with FXS (Lejeune 1982). When added to tissue culture media, folate will decrease cytogenetic expression of the fragile site (Jacky 1996). However, its mechanism of action in the central nervous system seems to be unrelated to its cytogenetic effect. In the CNS folate is involved with methylation and hydroxylation, and both reactions are important in neurotransmitter synthesis and metabolism (Greenblatt et al. 1994). Folate is concentrated in the synaptic regions of CNS neurons (McClain et al. 1975). Levine et al. (1981) speculated that exogenous folate may accelerate dopamine synthesis in nigrostriatal neurons through effects on tyrosine hydroxylase. Preliminary reports from Lejeune (1982) and others (Harpey 1982; Lacassie et al. 1984; Lejeune et al. 1984) anecdotally demonstrated improvement in behavior and development in males with FXS treated with folic acid. Subsequent controlled studies showed mixed results, with some reporting no benefit from folic acid (Rosenblatt et al. 1985; Brown et al. 1986; Froster-Iskenius et al. 1986; Madison et al. 1986; Fisch et al. 1988), whereas others demonstrated improvement with folic acid treatment (Carpenter et al. 1983; Brown et al. 1984; Gustavson et al. 1985; Gillberg et al. 1986; Hagerman et al. 1986; for review see Aman and Kern 1990; Turk 1992; and Greenblatt et al. 1994).

Folic Acid: Response

Clearly, not all patients with FXS respond to folic acid, but a significant number of prepubertal boys with FXS are reported by their families to be less hyperactive and to have a better attention span on folate. The cognitive improvements in young boys with FXS reported by Hagerman et al. (1986) seem to be the result of improvement in attention span and concentration, which is consistent with the hypothesized effect on dopamine synthesis (Levine et al. 1981). The effect of folic acid is similar to the response noted with stimulant medication, although the latter usually causes a more dramatic improvement in attention. A rare patient will become more hyperactive on folate, and an occasional adult with FXS will have more outbursts on folate. It is, therefore, not recommended for adult patients, who are less frequently plagued by hyperactivity.

Improvements in speech, language, and motor coordination are also occasionally reported by parents when their children are taking folic acid (Hagerman et al. 1986; Turk 1992). The effectiveness of folic acid has been difficult to document in controlled studies; if a child responds to folate, however, parents usually insist on using it. As many parents are adamant about its effectiveness, perhaps future studies should focus on identifying the subgroup of children with FXS who respond. There is no evidence for a metabolic defect in folate metabolism in FXS (Brondum-Nielsen et al. 1983; Wang and Erbe 1984). There is one report of a child with FXS who deteriorated behaviorally and developmentally after treatment with trimethoprim, an antibiotic that interferes with the metabolism of folic acid (Hecht and Glover 1983). Therefore, caution should be used in treating patients with FXS with drugs that lower folate levels, including phenytoin.

Folic Acid: Side Effects

Folate has been tolerated without significant side effects in dosages as high as 250 mg and 1,000 mg/day (Zettner et al. 1981; Brown et al. 1986). However, Hunter et al. (1970) reported malaise, sleep problems, irritability, and an increased activity level when folate was given to normal, healthy volunteers. Folate has been reported to exacerbate the frequency of seizures in epilepsy (Reynolds 1967), but we have not experienced this problem in patients with FXS and seizures. Folate treatment should be avoided, however, in patients with poorly controlled seizures. Folate may occasionally cause loose stools and can prolong diarrhea in children recovering from gastroenteritis. If diarrhea occurs, the dose of folate should be lowered or discontinued until the diarrhea resolves. We reported vitamin B6 deficiency in males with FXS taking 10 mg of folic acid per day (Hagerman et al. 1986). To avoid this problem, patients should take daily a multiple vitamin with B6 while on folic acid therapy. Folate can also interfere with zinc absorption in the intestine, and serum zinc levels should therefore be monitored at least once a year (Milne et al. 1984).

Folic Acid: Liquid Preparation

Folic acid is manufactured only in 1-mg tablets in the United States. A liquid preparation of 5 mg/ml is more convenient and less expensive than the tablet form. Most patients who respond will demonstrate improvement on a dose of 10-50 mg/day. Many pharmacies will prepare the liquid preparation after a special request. Pharmacies can obtain folic acid powder U.S.P. through Tanabe U.S.A., Inc., 7930 Conroy Ct., San Diego, California 92111 (1-619-571-8410) or Mike Jones at Gallipot (1-800-423-6967). The following formula can be used to mix the folic acid solution to a dilution of 5 mg/ml (provided by Rob Rodgers, Pharm.D., at The Children's Hospital in Denver, Colo.): 10 g folic acid, 2,000 ml H2O (sterile), 15 ml NaOH 20%--add by titration until mixture clarifies in solution. Folic acid solution is sensitive to heat and photodegradation, and it must be refrigerated and protected from light in a covered or brown bottle. A syringe can be used to measure a typical dose of 5 mg or 1 ml twice a day. As folic acid is relatively tasteless, it can be squirted directly in the mouth or added to juice. The dose is usually given twice a day to avoid stomach irritation or diarrhea, which occasionally occurs.

Folic Acid: Medical Follow-up

The medical follow-up of patients treated with high-dose folic acid includes a periodic physical and neurologic examination and at least annual blood work including a complete blood count (CBC): serum glutamic-oxaloacetic transaminase (SGOT); blood urea nitrogen (BUN); creatinine; urine analysis; and serum levels of zinc, vitamin B6, and folate. A trial of folic acid therapy should last at least three months because improvements in behavior or attention may not begin until the second month. If folate is helpful, it should be continued, and it can be used together with stimulant medication. At least once every one to two years, the folic acid can be discontinued to assess whether it remains effective. There is some evidence to suggest a mild withdrawal effect in a limited number of patients, characterized by mood lability lasting one to two weeks. This is not uncommon in megavitamin therapy, and it has been described in pyridoxine and ascorbic acid therapy (American Psychiatric Association 1973; Gualtieri et al. 1987).

http://www.nfxf.org/html/folate.htm

http://www.fragilex.org/html/liquid.htm

This article is not intended to give medical advice for individual cases. Any change in medical treatment should be done in consultation with appropriate medical personnel. This article is written for medical professionals. Some of the terms will be unfamiliar to those who are not trained in medical fields.*This article is from the chapter on treatment in the 3rd edition of Fragile X Syndrome: Diagnosis, Treatment, and Research edited by Randi Jenssen Hagerman, M.D. and Paul Hagerman, M.D., Ph.D., to be published May 2002. It is included with permission from The Johns Hopkins University Press. References to other chapters refer to chapters in the book which are not included as part of this website.The complete 3rd edition of Fragile X Syndrome: Diagnosis, Treatment, and Research can be ordered from the National Fragile X Foundation by calling 1-800-688-8765 or from The Johns Hopkins University Press at 1-800-537-5487.

http://www.ucdmc.ucdavis.edu/mindinstitute/ourteam/faculty_staff/rhagerman.html

Holly & Minocycline @ UC Davis Mind

http://www.flickr.com/photos/vczdavis/2917330565/
Originally uploaded by vczdavis

Holly was the first baby to take Minocycline. She began on 7-17-08 and ended on 8-19-08. Many have been interested in the recent research on this and the trial they are launching. If you read the August Archives of this blog, you will see my journal during the Minocycline trial. Another Mother Asked me some questions which I will post and answer here:

QUESTIONS:

I had a couple of questions about the medication, and if you're comfortable with me asking, was it the minocycline that you were using? Was the trial for a month only, and how would the progress be measured? Was your daughter hitting the regular developmental measurements before this drug trial, or were there very noticable delays?

Forgive me for being so inquisitive, but I am just so eager for this medication to be available for the next phase of trials. Our son would benefit so much from having some medication that would improve his memory/synapses.

I guess all of us on the listserve are in the same boat, just praying for a cure that would set our kids free to be fuller participants in life.

Thanks

ANSWERS:

Holly is my first baby, so to be honest, if I had not already known she had fragile x I may not have known she was delayed. She is however receiving early intervention services, and according to the reports, on the 6 categories they monitor, she is on target for social, about 2 weeks delayed in Self Help, about 1 month in cognitive, 6 weeks in fine & Gross Motor, and 2 months in Speech.

That said, she does move forward and make progress, but does not hit the miles stones right on time. She tends to learn in bursts, and may fall very far behind, 6-9 weeks, then suddenly catch up, as if there was one single skill she was stuck with and she finally got it. Things like finding her feet, or chewing on them, reaching and grasping toys are delayed. She did just learn to sit on her own, but she does not push up when on her belly or roll onto her belly. She also doesn't really babble, at almost 7 months, but today she said maba maba bababa so I will be posting that she in babbling. She isn't hitting two toys together or shaking/rattling things, but she can hold her own bottle, smiles watches you.

So again, her OT/PT/IDS know she is delayed and work with her weekly, and there are some things I notice other babies doing that she does not, but as a first time mom, because she does learn new things weekly, I may never had known.



Now onto how they test it all.....

Since the drug trial (minocycline) that we did with Dr. Hagerman was sorta a trial run to help develop a study and not part of an official study, it might be different for you. But we used two things to test it. The first was the Mullins assessment, which is a diagnostic test where they play with her, give her different objects, see where her skills are, like will she pull a cloth or string to get to a toy, if you put the toy under the blanket does she know it is there, does she transfer the toy from one hand to another. They did this before the 5 week trial and then again after.

The second item is an eye tracking test, actually 7 of them, where she watches short videos and the computer analyzes where she is looking, does she look at the face, if you play music then show a picture on the left, then right, then left, will she anticipate the correct side when the music is played again, can she see the vibrations of black
and white lines in 4 boxes and notice which one is a different pattern, those types of things. Again they did this before and after.

Also direct observation by Dr. Hagerman, and the journal I kept of her progress and my observations. In Holly's case I noticed an increase in attention, concentration, and focus, I noticed her verbal skills seemed to increase. But here is the catch...

Was this because of the minocycline? Was it because of her therapy? Was it normal growth and development from 4-5 months of age, we don't know the answer to this. The lab analyzes the eye tracking data and sees a big improvement, but until they have a control group of normally developing non fragile x babies to compare to, they won't know if her improvement is typical, or a typical, or where she was in comparison to other children, normally developing, or with fragile x, on the medication, or off of it. So really there needs to be data collected from three groups, and all of it looked at.

That said, there are really no side affects, (except during development, it can cause your adult teeth to come in grey) so we felt like there could be no harm in taking this. She was young and at an age when her synapse connections are forming, so the thought was that they would form "correctly" or at least have a better chance if taking it.

The reason we did one month (it was supposed to be 4 weeks, but we added a 5th because the first week was a smaller dose and she spit or puked most of it out), is because the mouse trial was one month, and eight months later, positive results were still shown in the mouse. After the trial ended there was no loss of skill or regression that we could tell, and its hard to say, but I do not think her gain of new skill has slowed at all, so I think the positive effects are still there, but again, there are many factors contributing to her development. Holly was the first Fragile X patient to take Minocycline, so it was all in development, and theories, and trial and error.

It is possible she might take another course of the medication, especially I think if her delays increase or her development slows, to see if it has an effect, and when she turns 10 months, she will do another eye tracking test to see how she has progressed, over 5 more months.

I hope that helps. I think I will post this responce to my blog in case other's have these same Questions.

Upside Down

Upside Down
Originally uploaded by vczdavis

Here is an article about the Trial medication Holly was on.

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UCR Researchers Propose Minocycline as a Promising Drug for Patients with Fragile X Syndrome
Study leader Iryna Ethell awarded FRAXA Breakthrough Award for 2008
(October 3, 2008)

Print Quality Image: Right click image and select "Save Target As." UC Riverside research team involved in the Fragile-X project with minocycline. First row (left to right): Iryna Ethell, Tina Bilousova; second row (L to R): Jennifer Aye, Douglas Ethell, Lorraine Dansie, Jonathan Charles (Michelle Ngo, not shown). Iryna Ethell is holding the Breakthrough Award of the Year awarded to her by The FRAXA Research Foundation. Photo credit: Ethell lab, UC Riverside.

RIVERSIDE, Calif. – A UC Riverside-led team of biomedical scientists has found that a readily available drug called minocycline, used widely to treat acne and skin infections, can be used to treat Fragile X syndrome, the most common inherited cause of mental impairment and the most common cause of autism.

The study's findings have already impacted future therapies, with the approval of a new clinical trial in Toronto , Canada , that will test minocycline in patients with Fragile X.

Neurons in the brain communicate with each other at specialized contact sites called synapses, with many of these synapses occurring on small mushroom-shaped structures called dendritic spines.

During early development dendritic spines have immature finger-like shapes. But learning stabilizes the synapses and dendritic spines take on a mature mushroom shape, which make them more efficient.

The brains of patients with Fragile X syndrome have an overabundance of immature dendritic spines.

In their report, the researchers, led by Iryna Ethell and Douglas Ethell, faculty members in UCR's Division of Biomedical Sciences, describe how dendritic spine development in mice with Fragile X is delayed by enzymes called matrix metalloproteinases (MMPs), which are involved in normal brain development and physiological processes. They report that high levels of certain MMPs keep the synapses immature and inefficient.

But minocycline, they found, reduces these MMP levels in the mice, allowing the synapses to mature and make more efficient contacts between neurons in the brain. The outcome: corrected brain abnormalities in dendritic spines, reduced anxiety and improved cognitive function.

Study results appear online, ahead of print, in the Journal of Medical Genetics.

In their experiments, the Ethells found that young Fragile X mice treated with minocycline showed an increase of dendritic spine maturation in the hippocampus, a brain area that is critical for learning and memory. Besides less anxiety, minocycline-treated mice showed better exploration skills as compared to untreated mice.

The Ethells are enthusiastic about how their discovery already is leading to a clinical trial.

"Clinical studies often quickly follow such basic science because once there is a solid understanding of how problems arise, it is much easier to come up with solutions," said Iryna Ethell, an associate professor of biomedical sciences.

The study was funded by a grant from the FRAXA Research Foundation. FRAXA was founded in 1994 by three parents of children with Fragile X to support scientific research aimed at finding a treatment and a cure for Fragile X.

Dr. Michael Tranfaglia, FRAXA's chief scientific officer, said of the UCR researchers, "This group has done something unique and incredibly valuable: They have identified an off-the-shelf treatment for Fragile X through their basic research. By bringing their unique perspective to Fragile X research, they have helped us to understand why neurons are malformed in this disorder, and more importantly, how we can treat it.

"We were so impressed with their work that we just awarded Dr. Iryna Ethell the FRAXA Breakthrough Award for 2008. This is easily the most important scientific breakthrough in the Fragile X field in many years."

According to Dr. Carl Paribello, president of Fragile X Research Foundation of Canada and the director of the clinical trial (scheduled for early 2009) at Surrey Place Centre Fragile X Clinic in Toronto, Canada, the UCR-led study "will go a long way towards dispelling the idea that mental impairment cannot be treated."

"The work could lead to the first treatment that actually targets the underlying defect in Fragile X syndrome and not just the symptoms," Dr. Paribello said.

UCR's Douglas Ethell, an assistant professor of biomedical sciences, noted that effective therapies for Fragile X syndrome are few and far between. "This is a good time for identifying highly effective therapeutic strategies that might work in Fragile X patients," he said. "We are excited that our research has the potential to affect many lives."

Fragile X affects 1 in 4000 males and 1 in 6000 females of all races and ethnic groups. About 1 in 259 women carry Fragile X and could pass it to their children. About 1 in 800 men carry Fragile X; their daughters will also be carriers.

Minocycline belongs to a group of antibiotics that has been used in people for more than fifty years to treat Lyme disease, acne, and other skin infections.

Minocycline may have beneficial effects in other disorders where higher-than-normal brain levels of MMP-9 are found. It is currently under study for treating rheumatoid arthritis, multiple sclerosis (MS), Parkinson's disease, and several other neurodegenerative conditions.

"In the future, new compounds that more specifically target MMP-9 can be developed and tested," Douglas Ethell said.

Next in their research, the Ethells and their colleagues plan to refine the therapeutic strategy in Fragile X mice to determine the optimal age, if any, to administer minocycline. They will also explore other MMP inhibitors that may be more effective than minocycline.

"We will investigate whether a combination of MMP inhibitors with other drugs, such as fenobam, can help mature the synapses in Fragile X mice," Iryna Ethell said.

The Ethells were joined in the research by UCR's Tina Bilousova, Lorraine Dansie, Michelle Ngo, Jennifer Aye, Jonathan R. Charles, all of whom are in the Division of Biomedical Sciences and Neuroscience Program.

UCR's Office of Technology Commercialization has applied for a patent on the discovery by the Ethells and their collaborators, with an interest in finding partners to accelerate development of treatments for Fragile X syndrome and other forms of mental retardation and autism.

Owwie - blood tests hurt - but I'm a brave girl!

Owwie - blood tests hurt - but I'm a brave girl!
Originally uploaded by vczdavis

Thursday, 8/21

So it has been a few days since I have kept up on the Journal, since we stopped the Minocycline treatment. It has actually been a bit of a rough few days, as I am trying to get a head start on transitioning Holly into Daycare. Tuesday we went to Davis, and Holly saw Dr. Hagerman first off, I think this made her a little tired, so by the time she got to the last eye tracking video she was rather fussy, and over tired and needed a nap, so I don;t think she did as well on that one. Next time we visit, I will ask that she does the assessment stuff first. She ended up napping while we answered the vineland questionnaire, then we drove to a different lab to finish off the Mullins Assessment.

On the way home I was able to talk Joel into going and seeing the Mummy 3 movie at the baby brigade, and Holly was such a good girl. This cheered me up. Right before leaving Davis, we did a blood draw. She was only able to give 2 vials of blood, so she will need to do another on the next visit. She cried when the needle went in, and cried because she was restrained, and she cried when the needle was moved around to get the blood to flow, but in general, it was not as bad as the screen with the earrings, and other then having to hold her down for about 3 minutes she didn't get too frantic and when it was done she was happy and playful again, and it was much better then vaccinations, which the misery lasts for days after.

On Wednesday we saw Sally, and holly is gaining some new skills, she is holding up her trunk, when Sally holds her waist and puts light pressure on her front legs, she is in a complete and steady sitting position, and this she reports is great, and should be practiced so she can learn to balance, also when she is on her tummy if Sally shifts her weight, she extends one side, and crunches the other bringing her leg up, which is the precursor movements to crawling. Sally was very excited about this progress. We played on a cute Bouncy horse, and the ball, and did some other stretches. Afterwards she was to daycare, for 2.5 hours. She would not let any of the other teachers hold her, they tried and after a moment she would see me and cry, one tried for several minutes walking with her and trying to sooth her but to no avail. So I stayed and played, and she at least got to see the room, see the teacher and get exposed, so it won;t be a completely new place.

On Thursday they gave me a call and said that one of the children in another room was exposed to viral meningitis, and they were required to report this to me. I was stopping by the pediatricians office to get paperwork anyways, and they didn't seem to worried although I was, and said that I should keep an eye out for fever and rash. We went to the mommy's group this morning, and met Kyle and another little Indian girl with a very unique name that I can't remember whom was adopted. We were practicing Holly's sitting, and she was reaching far out in front of her to get a toy and she made a face plant into the floor. There was a loud bump and she immediately screamed. There was a little bump on her head above her eye, but it wasn't bulged out, it was just a red mark. She calmed down within a few minutes but fell asleep. I was of course worried about concussion, but everyone told me it was not that bad, and not to worry. Since she was 90 minutes overdue for her nap, I let her sleep. I asked the on call nurse about this also, and she said to watch for vomiting, but she looked fine. She woke up about 30 minutes later as if nothing had happened.

I then took her back to daycare, I handed her to miss Mary with her lutchka, loopy toy, and blanket and she didn't cry when I was setting up her diapers and bottles so I left without even saying goodbye, I didn't want to give her a reason to get upset. I went to a movie, Sisterhood of the traveling pants. I checked my cell phone every 5 minutes for the first hour, then every 10-15 for the last hour, making sure they didn't call me and watching the clock. I did enjoy the movie, but was worried about her. When I returned, at first she cried a tiny bit, but then I went around to the other side of her crib and she reached for me to pick her up. I did so, and she put her hands on my cheeks and tried to eat/kiss my noise, then smiled and laughed at me. I asked how she was, and her blanket was soaked, they said she had a rough time, and she spit up all her food. I am assuming this meant she had a fit, they were not overly communicative.

Her g-diaper was on backwards and very sloppy, and they said she had eaten, but her bottle was only short 50 cc's We staid and played another 45 minutes, I met several of the other parents, as there was a returning parent's orientation and they were showing up early and hanging out with us. Sasha and Chloe as 6 & 7 months, so just a bit older then her, and Naomi is 9 months. They all seemed happy and well cared for, but they don;t seem to have bonded with Holly yet, she was down in the crib, not being held, though not crying when i showed up. I don;t know who her teachers will be, what the routine is, ect. and they didn't write stuff down, so I am very super apprehensive about all this. New parent orientation is supposed to be next week Thursday at 4:00. The time and date has changed 4 times, so it all seems very disorganized and unreliable. I can't wait until she starts at aquatic park, this is going to be a nightmare.

We were so hot when we got home we put on the AC, took off our cloths, and ended up napping. Then we played till Daddy got home and Holly had a fun bath and massage. We played in the bath some with her rubber ducky. The water is not so deep, and i think I am going to talk Joel into giving her bathtub baths soon, so she can have deeper water to play in. We washed her hair and neck good, which was starting to get very sweaty, even though I have been cleaning it off every day. I sang her to sleep after reading her a story. Not before Daddy riled her up with his gwaaa ing, and making her crack up laughing.

Tomorrow I see Isenberg, get my return to work paperwork done, and go swimming. I am looking forward to the pool, it is SOOO hot. Next week Emeryville is closed for training, so I won't get to take Holly back until the 2nd. I am going to try to officially return to work early, so i can catch up from home on the last 6 months of email, and so i can spend some time with her on Tuesday the 2nd before I head in and so I can pick her up early.

I ordered her picture flashcards, which I am excited about. They will be arriving tomorrow. I also want to go back to Ikea and get her another fishy toy to take to daycare, and another loopy toy from Target, and maybe some toys to hang from her crib there.

Parachute Time

Parachute Time
Originally uploaded by vczdavis

Day 32 Monday 8/18

Today was a very busy day. Holly took a nap with daddy this morning, and when they woke up on his chair she was rested, changed and had a full belly, so she was ready to play. Joel reported that he made faces at her and she laughed and laughed at him. This was great as the last few days she has not been very cheerful with him.

Instead of her normal nap around 10:30 we dropped Joel off to work and went to a trail Gymboree session. While it probably wasn't as good as a session geared for her age group, we had great fun. There was another mom there with 9 week old Sarah, and several moms with toddlers from 14 months to maybe 4 I think. They had these very large foam barrels and we put it on its side and put Holly on her Belly and rolled it back and forth rocking it, she stayed like this for a very long time in the center. Then we made room for Sarah to join us, but this was at an angel, so she started to turn over. We laid on it backwards also which stretched out her neck and back. We also slid down the slides on our belly's and had more tummy time on the wedges.

Holly liked looking at Sarah who was also very social, and the two smiled and Holly kept reaching for her face. The little kids loved holly, as they all have dolls at home, and she is like a little doll, so they all wanted to hold her hand and pet her head. She was happy to oblige, and in return got to hold there hands and touch there faces. There were these large stacked donuts, and i put holly in the middle of them, standing, leaning over the side. She stood up for a few minutes then would plop down onto the mat, since she was inside of the donut she would be sitting when she "fell" rather then going all the way to her back, and she liked this. They also had these wedges that looked like the top 3rd of an orange, that holly stood up against, sorta like tummy time but mostly standing. later they had circle time with songs around a large parachute. They drummed on one which she liked, and on another waved the parachute up and down, she grabbed the edge of it and held on. Then they blew bubbles which she tried to grab, and she listened to the songs. She stayed awake and alert the entire time, and then at 12:15 passed out on the way home.

When she woke we watched a little baby Einstein, but she wasn't very interested in the Baby Noah Episode, it was animals, and not as interested as the more animated characters and puppets in the other episodes. We read a story and then had to go and visit her new Daycare. It is actually the center she will begin in January, Aquatic Park. She was quiet and playful, and sat in her car seat for about 15 minutes playing with her fish when we arrived, then she wanted out and played on my lap with her loopy toy. We then got to go into the baby room and meet the teacher and some of the other kids, she was right at home and ready to grab and mouth the toys. I am very happy about this daycare and wish she were starting this one right away. In January they have a 1 week transition period where you attend with the child each day and leave for a certain number of hours while they transition, I think it will be great. This program only has 4 "baby's which goes to about 14 months, and another 4 at 14-24 months.

We went home to meet Katie for a session but it was cancelled. This was good, as Holly had not had a nap for about 3 hours and was very tired again She took a short nap, and was refreshed but rather fussy, so we had a fun baby massage. This was a long massage, and she had a good deal of naked baby time. She liked this a lot, and since she hadn't eaten in almost 4 hours, I made her 6 ounces of food. She drank 2.5 but then 20 minutes later had another 2.5.

She played with Daddy when he got home and was cheerful to see him, she has a new game where she wants to eat his glasses, and she takes them off his face with two hands. She has been almost sitting on her own, she can not get to sitting, but she can stay seated for maybe a minute and she is starting to fall forward which I am told is good, This I believe is because she is playing with her feet so much.

Also, over the last few days, Joel thinks she has been singing, we do have music playing quite often, especially in the car, and she is very verbal, he says that her babbles sound like they are going in the pattern or rhythm of the song, and it sounds like she is singing along. Who knows if she is, but its very cute.

Tonight she last ate at 8:30 and I gave her a 25 dose of Minocycline with 4 ml of apple juice and 3 pinches of sugar at midnight. She was starting to wake up while I was mixing the medicine, and I gave her the pacifier and she fell back asleep, she was sorta awake a few minutes later for the medicine, but drank it, and then with the pacifier fell back asleep again. its only been 30 minutes, so I hope she stays asleep another 1-2 hours at least before I feed her again.

Tomorrow we drive up to UC Davis, and complete the second Eye Tracking test.

Moo Cow

Moo Cow
Originally uploaded by vczdavis

Day 31 Sunday 8/17

Holly has been quite amusing today. Mom went out this morning for a massage and she played with daddy. They watched baby Einstein, read books, played ocean time, and balanced on Holly's Ball. Joel said she was fussy, and grumpy but not hysterical. When I walked through the door, they came into the living room and when she saw me she made the biggest smile I had ever seen and started to laugh she was so happy, I have never had such a reception, she was so happy to see me.

We played in the afternoon, had some tummy time. Holly has a bouncy Ball, and it is about the height of her shoulders, she can stand and lean against it, or when I roll it she is balancing on her belly, if I put her on it backwards, then she can stretch her head and shoulders back. We played with this some also. I read her a few books, more of the touchy feely ones which she liked. She seems to have 3 teeth coming in now, a second bottom one and maybe a top one, so her teething was pretty bad today.

In the late afternoon we had to go run errands, and when I put Holly in her car seat, she had just eaten, and been changed and was about ready for a nap, she was again being a jokester. I would lean my head in towards her and she would start to laugh and laugh, she is just learning how to laugh, so sometimes the line between a laugh and a cry is close, both are a release of emotion, but she was happy. no matter what I did everything I did seemed to crack her up. It was adorable, and we took a short video of it. She fell asleep on the drive to best buy, and while we were in the store woke up. She was happy and played quietly. We walked over to babies are us, and she just looked around. Once back in the car she was fussy, and hungry, but was ok once we got home and fed her.

She has been getting more grumpy the later it gets, and fell asleep pretty early tonight. She last ate around 7:30 and I gave her a 25 dose of Minocycline at around 11:00 in 4 ml of apple juice and 3 pinches of sugar. She woke up again around 12:45 and had a 4 ounce bottle and is now fast asleep.

I was talking to my mom about Holly's "Panic Attack" and my mom does not think it is panic or anxiety attacks but "hysteria" uncontrollable emotions. she said that when she was little, and even a teenager, and her mother as well, both had fits of hysteria. When something did not go there way, my mom would cry so hard she would be shaking and make herself sick, and wrapped up in a ball shacking. My grandmother was more violet with her outbursts and would throw things. So my mom thinks her fits sound more like uncontrollable release of her emotions and not anxiety or panic. Its so funny that the Fragile X doesn't come from my mother, as there are so many signs that would point to her side of the family, but it doesn't.

Rhino

Rhino
Originally uploaded by vczdavis

Day 30 Saturday 8/16

This morning, mommy slept in. Holly was again pretty fussy, but had her moments, more whining and whimpering, not real tears. She watched Baby Einstein, First Moves, which she liked and played in Ocean Time. Later she had some tummy time, watched Baby Einstein Language Nursery, which mildly distracted her from her fussyness. Joel and I kept passing her back and forth all day, she would cry when he held her, and stop as soon as I took her. She was over tired and I rocked her to sleep for several short naps. I read her 5 books, which she paid attention to. One was a texture book which she reached out and felt while I was reading it. Later Joel read her 4 books, and she was actually happy at that point.

She was again teething all day, happy most of the time when she had her frozen teether. Surprisingly the cold doesn't hurt her hand while she held it into her mouth. She wasn't very playful, and was peeing a lot. However I did see a glimmer of her normal self in the afternoon, after one of the diaper changes I was putting a new outfit on her and blowing on her chest and belly and she was laughing hard and touching my face, getting my nose and mouth and cheek and she was in a good mood, but it was short lived. We had the Olympics on in the back ground, but she didn't even watch that,

She basically watched mommy the entire day. She was happier if I held her, and whimpering with daddy, and watching me, her eyes said, why aren't you holding me mommy so I took her back much of the time. Last night was heart breaking, and I don't know how I will go back to work if this is what happens when I leave her in day care. We received the Hanen infant communication book, and will start working on it. I have flipped through it, and already do many of the activities listed, but will try to be more methodical about it moving forward.

Holly slept from about 6-10 she woke up in a much better mood, she was smiley and seemed rested. She was hungry and played quietly after eating and fell asleep in about 15 minutes. I gave her a 25 dose of Minocycline at 1:15 in 4ml of Apple Juice with 3 pinches of Sugar. She has been moving around a lot in her sleep lately, last night we had to move the monitor camera in her crib because she was reaching for it and trying to chew on it. I have not really been swaddling her in her sleep for the past few weeks either. She seems to be sleeping ok with out it. I do have a large size swaddler that I may pull out if the teething gets too bad, as the swaddling seems to help. She does whimper in her sleep and chew on her lips.

Smart Cookie

Smart Cookie
Originally uploaded by vczdavis

Day 29 Friday 8/15

This morning Holly had her session with Katie, and she was teething, so she was very oral, and would not do any of her stretches, or work without being able to chew on something and have something in her mouth. She did a lot of reaching, passing from left to right hand, and when eating her shoulders were back and relaxed so she was in a good position. She also did quite a bit of altered tummy time, with great back strengthening positions holding herself up and not getting too aggravated. She was rather sleepy today. We went to swim class which she enjoyed but she was not as animated as she usually is.

When we got home from swimming Holly had a wonderful turn taking session with mommy, where she would chatter I would respond and then she would continue, presumably telling me all about what she thought of swim class. She has done this in a limited bases before, but this particular time we went back and forth about 15 times over twenty minutes, it was the longest conversation she has had yet.

In the evening we had some stories and then she got very upset. Mommy was taking a break from watching Holly trying to catch up on her notations, emails, journal, and also talking with Josephine. Holly spent almost all her time with mommy over the last two weeks and weekend, and she was missing mommy because I took a break, she would cry when Daddy held her, and was not really cheering up. I think it was because she was teething, but she was working herself up, into what may have been something of a panic attack. Joel had not seen this before and he was very distressed, wondering if the medicine had caused it, and if she has ever done thing before the medicine. She did it the time I was stuck in San Francisco which was a few days after she started the medication, but I also think she has done it before. She starts to get frantic and she freaks out crying so much she starts to choke on her breaths and she basically threw up her entire meal. I was on the phone ordering Chinese food when it was happening, not realizing she was in a frenzy yet, and thought it was regular crying, which I was trying to ignore, and allow Joel to sooth, since I am trying to get her used to me not being there since we are starting daycare in 2 weeks. But her entire outfit was soaked in food, as well as it was on her hair face neck hands. I grabbed her from Joel when I realized how back she was, she almost started to calm right away, I then stripped her and myself down and went into the shower. The warm water holding her tight and cleaning her off, shampooing her hair, and then wrapping her into a blanket.

This happened around 7:00, she had eaten around 6:30 She fell asleep in the towels, and I put her into the swing. She stayed asleep until I moved her into bed at 3:00 AM, at which time she drank 130 cc of breast milk. I gave her the 25 dose of Minocycline at around 11:30 with 4ml of Apple Juice and a pinch of Sugar. We think she was fussy not only because she was teething, but she had been trying to poopie all day, and had not gone for 2 days, and wasn't going. She ended up with a poopie at 8am Saturday Morning. I have talked about this behavior in my mother's group, and they have told me I should let Joel sooth and calm her, but also that there babies do have these frantic crying spells that make them spit up there food, but it is hard for me to believe, and perhaps I do not describe it as drastic as it is. I can;t tell however if it is a panic attack.

My sister has had panic/anxiety attacks, and they are similar, I chatted with her about this episode. My Sister indicated that breathing, rocking, and swaddling helps her overcome them and the attacks are far worse then whatever may have set them off. I am not sure if this is normal baby behavior, or a female fragile X "tantrum" anxiety attack. Holly seems to have a very High tolerance and rarely gets overstimulated anymore, this was not the same, it was more like she was uncomfortable, and mommy wasn't fixing it (I obviously can't if its teething) and she just gets more and more fussy, until something just pushes her over the edge and she explodes. I am going to ask the pediatrician next week if I should have given her Tylenol, in case it was teething, its hard for me to tell if that is indeed whats wrong, or some type of numbing gel, but she didn't seem very bitey, so I don't know.

Its a Crab!

Its a Crab!
Originally uploaded by vczdavis

Day 28 Thursday 8/14

This morning we went for another swim, we had a lot of fun. More kids at the pool to play with, and she was talkative, and actually kicked a few times. We also went to the expo again, same as above. In the late afternoon we were hanging out in the Art Studio, and met Theo a 9 month old. He was so happy to meet Holly, and crawled up to her, they both reached out towards the other's face and touched cheeks. They then locked hands and were petting each other. Holly was so excited to be able to touch him without me pulling her hand away. She watched him crawl, and they were both standing up and looking at everything together. Also at the Disney booth a woman gave holly a 3 eyed alien from Toy Story "al" he vibrates and talks when you pinch his hand. Holly didn't know what to make of him. Once she was surprised once she laughed, and another time it made her cry, based on her mood and how tired she was. We left to drive home at 6:30, Holly was pretty fussy, and I finally sang her to sleep. We didn't get home until 1:00 at which time she ate, as she was hungry from the drive. So I gave her the Minocycline at 3:00 with 4 ml of Apple Juice and 3 pinches of sugar.

Today would be the end of her 4 week Trial, if it were not for the extension.

Holly and Mickey

Holly and Mickey
Originally uploaded by vczdavis

Day 27 Wednesday 8/13

Today I decided to give her a baby massage with sunscreen and she really liked this. It also made me happy. When we went to the pool, there was a 14 month old, a 2, 4, and 6 year old and she would reach out to the other kids and try and play with them. She was very social, I let the 3 year old hang onto her crab toy and we pushed her around together and she liked holding her hand.,

Later we went to the expo there were hundreds of people everywhere, and they all smiled waved and looked at her. She was very social, and did not get overwhelmed with all the interaction. In the expo, it was like the art museum, there was noise, color, moving objects, people, and things to look at in every direction. She did eventually get a bit overwhelmed, but not upset at all, she simply took a nap in her stroller and then when she woke was ready for more. She didn't like to stay in her stroller, so much of the time I was carrying her so she could really look around. There was an art exhibit, and we went and looked at the pieces and she had a favorite that made her laugh and smile whenever we went by.

After the expo we went to Lucian's hotel, there were more fountains in the lobby for her to look at and play with. Since we went home late, Holly woke up at 1:00 so we fed her, and gave her the minocycline at 2:30 with 4ml of apple juice, and 2 pinches of sugar.

I've Got you!

I've Got you!
Originally uploaded by vczdavis

Day 26 Tuesday 8/12

Holly was very playful this morning, we did our stretches, and she was standing and bouncing on her legs. We played music and danced. She was very cranky after her afternoon nap, but then later cheered up when we went swimming. There were other kids in the pool that she was very entertained by, she would watch them jump in and out of the pool. We had a floating crab that she liked to sit in and I pulled her around and this was also fun. She did not like getting sun screen put on. At the poolside she tried to play with Lucian, she would reach out to him and try and touch his cheek and hand, but he is still so little, I was holding her back. They did lock eyes, and she really liked looking at him. Later we walked around the hotel and there were lots of fountains, and holly tried to reach out and touch the water. They would jump like the fountains at the Bellagio and she would be surprised and then look and anticipate the next set of water. Holly ate at 8:15 and I gave her the minocycline at 11:30 with 4 ml of apple juice and 3 pinches of sugar.

Pillow Party

Pillow Party
Originally uploaded by vczdavis

Day 25 Monday 8/11

Holly is officially 5 months old today. We slept as much as we could this morning, and it was a low key day. Then headed to the convention center. Where we registered and went to a talk. Holly was a bit fussy but when I walked her around. We played and she was very social, smiling at all the other attendees who would stop by and say hello. We gave her the Minocycline at 11:40 with 4ml of Apple Juice and 2 pinches of Sugar. Her previous meal was at 9:30.

Dancing!

Dancing!
Originally uploaded by vczdavis

Day 24 Sunday 8/10

This Morning Holly played with daddy. She was very smiley and energetic. In the afternoon, we read books and did lots of stretches and tummy time. She played in ocean time, and watched the Olympics. I had to pack for LA so she spent a lot of time playing on her own, she sat in daddy;s chair with her toys and watched me pack, and later played in her crib while I packed stuff from her room, and watched her mobile.

This evening she was very fussy, and I think she has a second tooth about to break skin. She had lots of fun bouncing, and we invented a new game, where I would bounce her on my knee and then make a face and she would giggle and laugh. She was very climby, and did tummy time and sitting time and rolling time on me all afternoon. She is also much more expressive these days, she is making all kinds of new sounds and cooing. She is making a haaaa haaa like sound and a ahh goo and a purring type noise. Its hard to describe them all.

We played with several of her soft blocks, and rattles and she would hold them, look at them and bring them to her mouth. Ohhh, and our new pacifier game. I hold the pacifier in my mouth by the handle, and she is standing on my lap, then she comes in and grabs it with two hands and puts it into her mouth. She is then so please with herself she laughs and it falls and we do it again.

She last ate at 9:30 and I gave her 25 dose of Minocycline at 12:30 in 4 ml of Apple Juice and 3 pinches of Sugar. She ate again around 2:00 as we are getting ready to leave for LA.

Tonight at 3:00 am we are leaving to drive to LA after Holly's Night feeding. Since she often gets very fussy after long sessions in her car seat, we thought it best to try and drive while she is asleep. She will not be getting her regular sessions next week, She has a make Up on Friday, and Saturday when we return, with her PT/OT Also, Since I can not bring all of her toys, music, and books, she will have a very different week. I think she will get a lot of different kinds of stimulus, and lots of time in the pool. I think this upset of her schedule is also good, as she will be starting Daycare in about 3 weeks, and life will be different then, so she has to learn to be adaptable. I have my fingers crossed that things will go well.

King of the Jungle

King of the Jungle
Originally uploaded by vczdavis

Day 23 Saturday 8/9

Holly was great today. We ran errands all afternoon and she was happy and playful in her car seat. She played in the chair for a long time on her own, and in ocean time. At the baby store we read several stories and she was very social and smiling. We played upside down baby and stretched. We played bouncy games, and reaching games. We watched Swimming and Gymnastics, and had a quiet day.

She ate at 9:00 and at 1:00 I gave her a 25 dose of minocycline with 4 ml apple juice and 2 pinches of sugar. She has been sleeping well tonight, and I think her tooth is hurting her less, and she is learning not to bite her own fingers. Today she was reaching for her pacifier which was out of reach, and it is attached to a pink string. She pulled the string which brought it closer and then picked up the pacifier by its red rim. She has been putting it into her mouth often, although she doesn't always get good aim, sometimes she chews on the side, but sometimes she is focused, uses two hands and puts it directly into her mouth.

Now What do I do with Them?

Now What do I do with Them?
Originally uploaded by vczdavis

Day 22 Friday 8/8

This morning Holly had a session with Katie her OT/IDS. She did tummy time balance on her Ball, did an exercise where she squeezes her arms then stretches, which makes her looser, and practiced reaching. Katie and I agree that Holly's tone is not much better.

Today holly read stories, sang songs, and played. We went to swim class in the afternoon. She has been fussy and very chewy, and we noticed that she has her first tooth breaking through the skin, it is pretty sharp and I think she has bitten herself a few times using her fingers as a teething ring.

She had been very concentration full, in her play and has reached to get toys. In the evening we watched the Olympic Opening Ceremony and she really enjoyed all the colors. In the late afternoon we were driving and she was very frantic and grumpy and she cried so much she made herself throw-up It is so hard to take when she does that and I can;t calm her because I am driving. once I was able to pull over and take her out of her car seat she calmed down right away, but she was frantic in the seat.

She also actually had 2 poopie diapers tonight, which could have contributed to her fussyness.

She had her last meal at 8:30 and I gave her a dose of 25 Minocycline with 4ml Apple Juice and 3 pinches of Sugar at 11:30. She drank it down. She wasn't sleeping well, she kept waking up whimpering but immediately fell asleep once I gave her the dropped pacifier.

My Feets!

My Feets!
Originally uploaded by vczdavis

Day 21 Thursday 8/7

Well today was a very very long day. This morning at 10:30 we went to a new Mother's group for 6-12 month olds. Holly was a little young, but the babies in the 0-6 month group were all like 4-8 weeks old, and the facilitator thought we were ready. There were two babies 6 weeks older then holly, a little boy and a little girl. The girl was sitting and crawling, walking (holding mom's hands) and rolling, the boy was not really doing any of these, he was sorta sitting, but not well. It was great to compare how holly is doing, even though I know your not supposed to do this, but i got a chance to see other babies in action. Holly can almost roll onto her stomach, but she has no desire too, she does in fact walk when i hold her hands, and she sits up, but still pushes back, rather then falls forward, so doesn't quite get that yet. In a char or leaning she sits fine. it was fun to see how they play and interact with toys, and I think that holly is right on target. Serina the little girl crawled over to us, and reached out to holly and holly reached back and took her hand, and they looked at each other and smiled. it was so amazing to watch. Holly was certainly watching and absorbing everything she saw. She was playing with her feet some more also.

The we went to a place called Tumble and Tea, a Play Cafe, where I met tow other mom's with 6 month olds. Another Boy and Girl, and the same again, the boy wasn't rolling or crawling, he was just starting to sit, and the girl wasn't crawling, but rolling onto her belly pushing up and sliding and rotating, so she was certainly on her way. I see holly doing some of the same moves, but she doesn't like those arms, I can see she needs to be looser to really get there, and the little girl would slide to her side when sitting, but could do it a bit. Her and Holly also played and holly watched her intently. The play area has rubber mats and inclines, and I had holly on her belly on the incline looking over to the little girl, Laural, and she stayed there for like ten minutes watching her and on her belly and pushing up, then she rolled of her belly and got grumpy. We also read a long Big Kid Book about sleepovers and she was very attentive, she loves to be read to. This is great!

I did call Hilary earlier this week, but there was no answer and no voicemail on the phone I called, Perhaps she was out of town, and I know she is busy, I will try to touch bases again soon, but perhaps wait until after the wedding and honeymoon. I don't think that holly's tone has really changed much on the Minocycline, though I try to give her several massages a week, and we do daily stretching. On the play mat incline we did some more upside down baby stretches, with her head extended looking at me backwards, this made her laugh as she knew it was me, but I didn't look right, she kept trying to right herself. Normally when she is upside down she doesn't see me, so she stays like that.

Later we went toy shopping and I got a few more teethers, and some toys that make music and sound when you rattle or press them. One is her octopus friend from ocean time, and each arm is a color and it says the name of the color when you press it. In the store she kept laughing and playing with it.

I also am ordering a set of 350 picture cards, I am very excited about these. Stage one does matching, where there are two of each card on plain white backgrounds. Stage 2 has 5 or 6 of each thing in a natural setting, so like apple, on a tree, in a bowl, ect. I hope to get these in about a week, and they should be fun.

I also ordered the Hanen Infant book, like 3 weeks ago, but it has not come yet.

Once we got home, Holly danced, played with all her new toys, and was very talkative, told her daddy all about her day. I think she is a little shy, but not really. When playing she is more of an observer, watcher, and will interact with you, but not make the first move, and she is usually more quiet. But then at home she is all smiles and talkative. She will smile at the babies and other moms when they smile at her, and she reaches for them or takes toys from them, but she is also a wait and see kind of girl. I guess I will know more once she is crawling, and see how she does. There were some older kids who came and played with Holly, like 3 years old, they seem to all love babies, and she is happy to play with and interact with theses miniature people.

Today She fell asleep on my lap and I had to go pay my tab and I let one of the other mothers hold her while I went to pay and she woke up and started crying because it wasn't her mommy, but a strange lady, so she definitely needs to get to know people, but she recognizes faces she has seen before, like our regular friends, and even some of the moms and babies from swim class, so she has warmed up and will be more talkative there.

In two weeks I am taking her to try out a gymboree class, but heard I should join the YMCA and that they have a warm pool and kindergym, that is better and more affordable. Next week we will be in LA, so things will be crazy, and off her regular routine, but it should be ok. Holly didn't eat much today, I think it is because she is teething.

She had a full bottle at 6:30 then at 8:30 only drank 1 ounce. Then fell asleep around 9:30. I gave her her 25 dose of Minocycline with 4ml of Apple Juice and 3 pinches of sugar at 11:30. She did not have a poopie diaper today, but has been very very gassy, and i think that also made her super cranky. I am surprised the sugar isn't making her go more.