Fragile X Friday: Folic Acid

"I didn't do it!"

As promised I wanted to do an update on Holly's progress with Folic Acid. She began taking it just after her birthday and I posted an introduction to it and her usage on March 20th. She has taken it pretty consistently since then. I mentioned some early developmental observations in April that can be found here.

Before I begin to reflect on her development I will talk a little about the medication itself. We originally filled a 3 month prescription at UC Davis Pharmacy that cost us only 20$ this was without using insurance. After about 3 months the liquid solution begins to lose potency and eventually goes bad, so you can't really get more then a 3 months supply at a time.

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.

Holly only takes 1 ml 1X a day. When taking Folic Acid, it needs to be taken in combination with a B6, B12, and perhaps Zinc. There have been some studies showing a B6 Deficiency when taking a high dose of Foliate, and when taking a high dose, the Foliate can mask a B12 deficiency. So a multi vitamin is recommended. When we first started the Folic Acid it was easy to find a liquid Multi Vitamin for infants that had these three vitamins in it. Our first hurdle was running out of the vitamins and no longer being able to find it in Liquid form, it seemed suddenly all the multi-vitamins were children's chewables, or instead a D supplement that didn't include the B Vitamins.

During our first 3 month period Holly went about 2 weeks without the supplemental vitamin, while we were searching for a replacement. The second hurdle we faced was getting a refill after the first 3 months. We originally intended to go to Elephant Pharmacy, but they recently closed down and that wasn't an option. So we instead went to a little compounding pharmacy called Abbott's. This was where I got my Domperidone when breast feeding. Anyway, they said they could transfer our prescription and make the medication (after Walgreen's, Longs, and Safeway declined) but the cost was 70$

So my choice was to drive up to UC Davis, 3 hour round trip, gas, time, inconvenience, or pay 3.5 times the cost of what I got the medication for the first time. Abbott's doesn't take insurance, so it was simply a cash payment. In another 3 months or so we will be making another trip to UC Davis, so we can do another refill at that time, and revisit the dosage (as it is based on weight)

So the question is, do we think it's making enough of a difference to continue giving this to Holly every day. Right now we put a dropper full of vitamins and 1 of Folic Acid in her second bottle, usually taken before her nap, she doesn't even notice it. Also, as she begins to ween herself off the bottle, how will we continue giving these to her? The cheek method immediately makes her throw up.. But I digress.. you of course want to hear my thoughts on her development.

Well.. Before her birthday she had an assessment by 2 Speech Therapists and a Feeding Therapist. Her Speech Therapist evaluation put her at a 6 month level, showing a 6 month delay. 8 weeks later (while taking Folic Acid) we start to receive services, and the Speech Therapist does agree there is a delay, but sees significant improvements. She babbles using a variety of sounds interchanged, and a conservative estimate is at least 50 words of receptive understanding, she also has begun to learn a few signs. We started signing with her when she was 6 months old, she never made any attempts to make the signs before. Now, we can prompt her with a wrist tap and she will sign "open" when she wants us to open a toy and play with us. She has also signed milk a few times, and eat, and I think sleep.

Some of our speech therapy goals include verbal imitation, such as repeating back sounds she can make like "Ba Ba" or "Ma Ga" she will have a back and forth conversation with you, but she doesn't repeat the sounds you make. Another goal is to make a few new sounds such as T and C. It is surmised that with further tongue "exercise" she can begin to make "back mouth" sounds. She gets this exercise by eating more sophisticated foods.

That's where the feeding therapist comes in. While Holly still has gagging issues, the Feeding Therapist felt as if she had transformed during the 8 weeks since she did the evaluation. She says the lateral tongue movement is increasing and she is chewing more, and she has even eaten bits of meat now. Next we will be working on mixed textures which is more related to her sensory issues.

Some other things, her focus and intention.. One might say she is a little hyper or ADDish but I think she has a lot of focus for a task she wants to do. She will now sit and try and figure something out and she is learning and mimicking activities. She puts toys away when told, and initiates play and games. We recently did "This Little Piggy Went To Market" and she will take my hand and put it on her foot to do it again. She will bring a bag of blocks to Joel to get him to open them, and "tantrum" when we don't play, and with a prompt ask that we open them with a sign, even though her intention is already clear. She is beginning to stack blocks, which she can do, except that her movements lack fluidity due to her high tone. She is shape sorting in an emerging way. Before she would give up after 1-2 seconds, now she will twist and turn the piece to get it in (She never used to do that0. She hasn't learned Square is Square, but if the right shape is near the right hole, she will turn and manipulate it until it goes through. On her pop up animal toy she has learned all of the levers, including the turning one which is advance, and the up/down, and side to side in both directions.

She also is investigation. With intention. She will take all of the pasta out of the drawer, place it in a bag, carry that around for a while, then put it back. She will get the granola bars out and put them into her plastic bins, and hide them around the house, very intentionally. When she recently learned to drum, she was very curious about using the mallet on a number of different surfaces, first the drum, then a plastic container, but what does it sound like on the piano, and the carpet, and her house, and the chair, and the table. And then when she is done, she puts the mallet back where it belongs int he container.

She has begun to feed mommy and daddy and her therapist observed her feeding a doll. She will take two puffs, eat one and place one on the table for later. Remember where it was and come back for it. Just this week, she is beginning to put the spoon inside the empty yogurt container and then into her mouth, and imitate "feeding" She very distinctively tells me know, and either understands the verbal question I am asking or the visual Que, Such as do you want milk, juice, yogurt, are you hungry. She will shake her head for one but then open her mouth for another, actually answering the questions and communicating what she wants.

She is fascinated with trying to learn how things work. We have a ball pit, which she loves, and one of her favorite games is throwing the balls out. She likes to see them bounce. She has other balls too, and she has begun to drop them, to watch them bounce and roll, but then she has other "roundish" shaped toys, and she drops them too.. Does this one roll, does this one bounce, what if I do it on the rug, what if i do it on the wood floor, what if I do it in the kitchen.. and on and on her investigation goes.

When she needs a break and wants to watch Baby Einstein she hands me the remotes. When she is hungry she has begun to go to the refrigerator or high chair to let us know its time to eat. She listens when I say edge, or yucky, or even if I subtly shake my head no, she will most of the time put down the thing she wants to stick in her mouth, though, sometimes her impulse is stronger, but she certainly knows, by the mischievous look on her face that she isn't supposed to be doing that. She will walk into another room, that she isn't supposed to be in, and wait for me to look and see her go in, with a little snicker before running off. Sometimes if she really wants my attention she will turn my face to look at her. At the park she runs to the swing when she wants to swing and hold her arms up so we can put her in. The list goes on and on and is endless..

I know Folic Acid has been recommended for a plethora of behavioral, mood type issues, and I really haven't seen any of those with Holly yet. Maybe this is helping to keep them at bay, maybe they will show up when she is 4, maybe they aren't one of her "spectrum" issues. I do know that I can push her. She has issues, she has sensory things, like (sadly) she has recently started to cry when a group of people sing "Happy Birthday" Since we have been going to so many parties lately it is a bit of an issue, not sure what it is, overload, everyone doing it at once? We are int he room full of people and conversation and loud noises and she is fine. Then as soon as everyone sings together, she gets upset, makes the face and cries. She also doesn't like to be Dirty, that is relative for a baby, she gets pretty dirty, but she likes me to take sand and dirt off her hands and recently she freaked when she got paint on her hands. Is it sensory, or a control thing, she wasn't the one putting the paint on her hands, and she tantrums when she wants to be in control and isn't. is this a Fragile X thing, a baby Thing, a I'm just like Mommy thing, who knows.

The thing is, she is my only child. Many of our friends are 3-6 months older or younger then her. Since she is so mobile, and many are just learning to crawl or walk, she seems advance. But then she doesn't clap, or wave. She will take hold of my two hands and clap them together or take hold of my finger and move it to point, but is only just barely pointing herself, and that is at a picture in a book, not an object int he room, she doesn't yet know to follow a point, and while she does have joint attention, she doesn't always follow a gaze and a point when I want her to turn to look at something.. I see even the much younger kids doing some of these things.. Just recently a friend with a just 1 year old told me they counted her son;s words and he had 30 expressive. So I know there are delays, but often I don't notice them, because she holds her own, and i don;t expect her to be as sophisticated as the older kids, and in some ways the younger ones aren't keeping up, so other parent's don't notice.


For example, she will climb the stairs, sit on the platform, wait her turn and go down the slide. There are 18 month olds not really doing that, but then, she can;t wave bye bye... Yet I digress again.. The point of this is Folic Acid, and my point is she is Holly, I have no way of knowing if this is the normal progression of development for a Now (OMG) 15 month old, and if her progress is moving ahead at a steady pace, or if she is making leaps due to the folic acid, or perhaps it is a result of her therapies. What I can say is that It does seem like she has been making some jumps lately in understanding and imaginative play, and exploration, whether this is when it would have happened, or if the medication pushed it along allowing it to happen with such great leaps and bounds, I can;t say, but I know this, Folic Acid isn't hurting her, and if there is any chance it is contributing the the amazing development I see daily, then it is worth her continuing on the medications. There is no downside, not as far as I can see.


Now if you are looking for a magic pill to lull your child out of stagnation, I can't say this is the answer, I don't know, and my understanding is that every child responds differently anyways. So I know perhaps it is a bit of a cop out to say, I just don't know, but what I do know is it was worth 70$ to keep giving it to her another 3 months, because what if it is making a difference, why take that risk, why not try everything that could possibly help her just a little bit. So for now at least, she will continue with the Folic Acid.

"I was just cleaning up Daddy's mess!"