Friday, November 13, 2009

Fragile X Friday: Part 2 - Observations of Holly after 1 Month of Sertraline

So in this post you will see pictures from two play dates at Chloe's while Tanta Kat was still visiting, I think the pictures will tell there own story, you don't need my description. What I will write about is our observations of Holly over the last month since she has begun to take the sertraline.

I will start with Joel's observations and thoughts and then my own, we decided to write these independently as not to cloud each others perception, so there may be some overlap. These are taken from the progress report we are writing up to send to back to Dr. Hagerman. It is nice to have a lot of positive things to say about Holly's development.

To me, there's been a big difference. She's able to focus on things a lot longer, and when something is a little frustrating she doesn't just run off or get mad. The shape puzzles are a great example, before this she was interested in the puzzles but wouldn't do more than bang the pieces on the puzzle, now she can do the whole puzzle unassisted (with some encouragement, but hands-off, I don't have to touch the pieces). It feels like with the puzzles she's made months of progress in a few weeks. She was always pretty good at the rings and buckets, and now she's mastered them.

Her receptive language has really taken off, too. It was clear that she knew a few words before but now she's understanding whole sentences, like "bring the bucket to mama" or "go to door and we'll go out!" Also, it could be me imagining this, but it seems like she's really interested in learning what things are called, sometimes I will point at or pick up things and name them, like "book", "shelf", "chair", etc.. and she pays very close attention and concentrates.

She's not speaking yet, other than a few words that she could say before, but she's being more specific about it, she'll say "ga ga" for "dada" when she sees me after work, "Muh" for "mama", "bubbles" for bubbles (she could say this one since July), and "Ba ba" for bottle but she enunciates it carefully now. She says "go!" when she's eager to go out or if the car is stopped at a light and she want it to move again. She's also just starting to try and say other things, I think, sometimes saying "buh" for blue or "eee" for "Toodie" (a toy), or "eh" for "red", but not very consistently. When she does this, Vicki and I try to always praise her and repeat the word.

She's also begun imitating us a lot more. Not as much or as complicated as other kids I've seen, but it's pretty fun already. One morning when I sat in my chair with my coffee, she pulled her little chair opposite me and sat down with a toy teacup. He therapists have also commented (with some amazement, and without us prompting them) on her progress, before it was very difficult to get her to sit down and focus on an activity, now they've been able to keep her attention for an entire session.

She's still very easily distracted and hyper, and will run around from activity to activity. For example in a music class, all the other kids sat in front of their parents and watched, while Holly kept squirming out of my grasp to run around the room... but that's OK, group attention is a new concept for her, and new she can focus on an activity if she is encouraged to, and she often couldn't before.

I haven't noticed any negative side effects. She's been a little more tantrumy and defiant lately, but that seems in line with normal development and she was already on that trajectory before, the setraline didn't seem to affect that one way or another. The first week or so we started it, there were a few times when I was feeding her I noticed her staring off into space with kind of a glazed look which I thought was unusual, but she hasn't done this recently and generally, her personality seems as ebullient, active and cheerful as before. I haven't noticed much effect on her anxiety either way, but than again Vicki is more often with her in new situations where she might become anxious, and can probably provide more insight about this.

I am concerned with how we are going to handle this in the future. Ideally, I'd like this to be a boost to get her over the hump of learning to speak, and then wean her off the medicine and let her develop her own techniques of coping with the anxiety and short attention span, so that she doesn't feel that she is dependent on a medication to function in the world. I would like, ultimately, for it to be her choice if she wants to take a medication or not, and I'd really like for her to feel as if the medication is something that helps but she can be ok and accepted without it, even if it makes life harder, rather than something she needs.

Obviously, that kind of thing is a long way off but I do want to try going off the medication every so often so we can compare, and to give her practice dealing with her feelings and challenges focusing. I wouldn't do this if it created any undue hardship, and I realize that she may require medication to function within our rather bizarrely rigid and structured educational system, but ultimately I want her to be able to make the choice herself.

And this is Vicki: What have I noticed since Holly has started the Sertraline. I think she is much more specific in her needs and wants and her requests. She asks for things and has been learning routines, she will get her book with pictures, turn to the page she wants, point to it give me it. She seems to also be understanding much more when I talk to her. If I can not do something right away I will tell her, after mommy finishing getting dressed we will go out, or as soon as mommy finishing cleaning the glass I will get you a snack.

She still has the patience of a toddler, but she doesn't have a meltdown because she isn't getting what she wants this second, I also think because she understands what I am saying she realizes she will get it momentarily and isn't frustrated and thinking she must continue to tell me over and over what she wants because I obviously could not of understood her if I am not doing it right now.

I think she is having a receptive language explosion. In the past month she has learned to pint to her ears, nose, and belly button when asked where they are, she gets so excited about the belly button that she runs to both mom and then dad and points to ours too. I feel like she wants to know what things are called and even though she can't say them yet, she is filing the information away for later when she can.

I also think she has gotten more sophisticated in her TV watching. before it was the colors, the creatures the singing, now she is following the story line and acting out what is going on, she is trying to sing along with the songs in her own unique babble and trying to dance with them too. She has learned to distinguish things like marching, and tries to do big steps little steps.

I think she follows directions much better and anticipates things. I just have to start to sing the Clean up song and it is a queue to her to clean up, when in music class, or the library, or at home, she will run around picking up all the instruments and put them away, or put the balls int he ball pit, or the blocks in the container.

She follows directions and helps mommy with the laundry and dishes. I was putting away dishes and we had several spatula, I showed her what drawer one went into and handed it to her and she reached on her tippy toes and dropped it in, ran back to the dish washer and I gave her another and another and she put them all away, then she took a spoon out of the tray and ran to the spoon drawer, which I hadn't shown her, but she saw me put a spoon in earlier.

Then I handed her some dirty spoons and bowls and she put them in. She also later imitated me with her play kitchen and gathered up all of her play spoons, put them into the plastic holder and into her play "dishwasher" On another day she dumped out all the diapers and pants from two of her bins and even carried a pile of cloths into the living room (I was distracted talking to one of the therapists) I simply handed her the bin and said Holly what a mess you have made, its time to clean up and put the cloths back in. She put them all in and put the bin on her shelf, then did the same for the diaper bin.

I think expressively she is also making strides, she is saying duck or quake more often when we see ducks on TV or in various flashcards, she is also going "ssssss" for the snack and for the "Squeak" that the mouse makes, she is say "ooouuu" for the "whoo" the owl makes and "ome" for home and phone" she also pats herself for mine and makes a "mmmm" sound. She has made up a new sign for "change" when she needs her diaper changed.

Also her babbling has changes, she is verbalizing all of the time now, non stop and it is much more like she is telling a story, where she is trying to imitate the tonal variations of speech. In therapy she said "ur pl" and took the purple item, she also said "bowl" and "blu" these are not consistent, but she is trying to talk, she will babble something to tell me what she wants, and while I can't understand it, she has a whole story to tell me. She even said "ur tl" for a turtle she saw on her wall.She has learned the names of her "Gabba" friends and when I ask her to bring me one of the characters she does, and she will get items for me that I ask for, or give them to Daddy or Put them in her room, or on the shelf.

She has been showing pride in her accomplishments. She was so proud that she learned how to climb up onto the entertainment center to "reach" into the TV. We have been teaching her No, and today she would start to climb and I would tell her no, and she would take her foot down and then clap for herself, I would say good girl for not climbing, then of course she would do it again, I would say "Holly, No" she would take her foot down again and clap. She did this several times. Then she went to try and climb onto the toy chest, just to see if the no climbing rule was specific to climbing or that item.

She has also amazed me with her puzzles, she would before get very frustrated and bang the pieces on top of the stop and they wouldn't go in and she would get up from the table and run off. Now she sits with me, puts the piece in and self corrects when it doesn't fit. We have a house Puzzle with shapes, circle, square, triangle., rectangle, and oval. She gets all of them in the right place, and all of the in correctly now on the first try, except the rectangle and oval. however after a few days of hand over hand help she has learned to slowly rotate the piece until it is lined up and slips in.

Another puzzle has 9 animals, all odd funny shapes, she can match all of the pieces to the right spot and a few like the skinny bird and symmetrical fish tank she gets in immediately, the others she works at try's, sometimes gets them in, other times takes my hand and puts it on hers to help her turn in to go in. After each piece goes in, she claps for herself and gets another. When she completes the puzzle she will ask for another one (never happened before) they are put away, so I get a new one, she has about 6 of them at varying difficulties, and we go through them all at least once if not twice before she loses interest. Sometimes she does the house one, the one she can do all by herself 4-5 times in a row, then will go and play.

She is showing more interest in listening to a story, and pointing at pictures in the book. She has this one that goes, Red Hat, yellow hat, blue hat Opps, and then has a picture of a turkey putting the item on incorrectly, there are several pages of ooops items. She has started to anticipate the oops and tries to say it. Last week jokingly one of her therapists said to me, "who is this child and what have you done with holly" after we completed an entire 90 minute therapy session where she stayed focused on every task for several minutes, only ran off 2-3 times, and would return when we called for her rather then getting so distracted we had to go and get her.

She has been showing interest in coloring, she is able to completely thread her set of beads, which previous she was too frustrated for, and in therapy after completing her beads we tried the therapists which are a much higher level of difficulty due to shape of beads and frayed edge of string, and she was able to do about 1/2 of the beads on her own, but persevered trying several times with the hard ones over and over without getting verbally frustrated, distracted, giving up, or running off, and then asked for help when she was having a hard time. She with minimal help completed the second set of beads too.

She has been doing a lot of imaginative play, she drinks tea and feed and gives tea to her "Gabba" friends, and feeds them with a spoon. Holly likes to hide in the cabinet and jump out and the other day she put "Brobee"into the cabinet and then would open and close it playing peek a boo with him. She pushes them around in her shopping cart while she piles in the play groceries, and the other day even took toodee's hand to let her play with my iPhone, so toodee could touch the screen and turn the pages of the Flash Cards.

She also misses and asks for her Tanta Kat who has now returned to Florida after an 8 week visit. She saw her keys one day and signed mine and then phone, which were the two words Tanta Kat was trying to teach her, and then today she brought me her "Holly" book with a picture of Tanta Kat, pointed at it and then ran to the back door (which is how you get to Tanta Kat's downstairs apartment) We then called Tanta Kat on the phone and when she heard her talking she signed mine again and tried to say it.

She met Tanta's Kat's cat before she left for Florida and was not
scared of it, in fact she was very interested in it and wanted to make
friends, the cat ont he other hand was afraid of her. We have not
been to the little farm, so i am not sure how her response to other
animals might have changed, but when we took her to the zoo, she was
very interested int he birds and monkeys and the turtles, I think
recognizing the large turtle is like the turtle at home and not afraid
of the animals at the petting zoo there.

Ohh and on the social front, while she has always been rather social, she has started to give hugs and kisses to her friends, sometimes upon suggestion, other times spontaneously, she has started to hug and cuddle her stuffed animals, and she hugs herself, another sign she made up whens he wants a hug from mommy or daddy she comes up to us hugging herself and we pick her up and give her some tight squeezes. I also think she is learning about ways to self regulate herself, often before bed when she starts getting over tired, hyper and "loopy" she will bring out the quilt lay it down and ask to be swung, something we learned in therapy about activating her vestibular (or is it proprioceptive) system by the swinging. It is amazing she requests it.

I am sure there are a hundred other things I am forgetting, I feel like she is learning new skills and new words every day, and though she isn't speaking them, she is understanding more, and trying to make the sounds of words much more, and babbling much more.

One reason I wanted to be sure to post this and share it with the bloggy world out there, is when we got home from UC Davis, after agreeing to start Holly on Sertraline in the office with Dr. hagerman I had reservations, particularly after reading the pharmacological information, specifically about indications that it can cause deporession in children under a ceratin age and could potentially have adverse side affects. I was nervous, unsure if it would have the wanted result, hadn;t yet talked to my own pediatrician, who is supportive but conservative, and so I searched the Fragile X Website for documentation of the results, and the Archives of the list serves for other parent's responces to the medication.

Ultimately I got mixed reviews, some saying it did nothing, some saying they too had amazing results, some saying that they wanted to not take a medical approach but a therapeutic one and didn't believe in the drugs, so i figured this is my two cents, my experience, and perhaps it will help another mother out there make her decision if faced with the same dilemma. I had not really read any reports of anything negative, and we have had no problems what so ever, so I hope this helps someone out there.

1 comment:

Anonymous said...

Hurrah! I'm so glad that you had the courage to try the medication, and that it's working so well. AND that you are so observant. If Holly did have adverse reactions you would know it! How exciting that language skills are starting to happen more and more! I can't wait to see her at Christmas, and hear it myself!
Love, Granny