Novemeber 2008 -- 13 months
We have decided to go with an oral B12 for right now. I am not opposed to the injections, but Ayden Jane is on some sort of developmental spurt of her own right now and I do not know how we would sort out what gains from what cause. For example: She is 14 months next week, but over the last 8 days has gone from 3-5 second independent stand with a very ungraceful landing to standing a min. plus and completely grading her return to a seat or the floor. She is even spontaneously doing so when playing at a small table... She is rapidly learning signs and has suddenly discovered generalizing them. She is saying a couple of words as well. After this plateaus (as we all know it will) we may look into B-12 shots.
I will say that I gave her the oral B12 over the last 3 days. Starting the first day her volume has gone through the roof. She has always been capable of being loud once in a while, but now she just yells for the fun of being loud. My husband works nights, but has never before been woken by Ayden Jane unless it was crying from a fall... He thought it was great the first couple of times she woke him just yelling for fun. Now he does not find it so endearing.
December 2008 -- 14 months
Sorry it has taken so long to update, but here goes. I waited out the week and a half not giving Ayden Jane the B12. It was a long wait for me because as the days went by she became quieter and less active. I wanted the objective input of our PT so despite my 13 year old son's objective input, "How come Ayden Jane was so loud and funny last week and now she's a veg head?" I waited. Long story short, my PT was on board and saw her Sat. so she could get a good 'feel' for Ayden Jane. I started AJ back on the B12 and during PT today I asked the therapist what was her objective opinion about the B12. Her answer, "never, never, never take it away again. In fact if you do I may have to report you to DSS." (yes, she has a good sense of humor) Here is the best part. As we were nearly done, Ayden Jane took her first independent step! I do not know what this means for others, but I am convinced that for Ayden Jane B12 is a must. Now, if I can just get her to stay off the hearth and out of the fireplace!
The B12 has just given her an extra boost. She now plays hard, sleeps hard and can do things quickly. I used to be able to sort of watch her think. Look at the ball, I want the ball, I could reach for the ball, gather my energy... She could and would do it, but now it is more like--Hey, ball, and she is after it. It is fun, but 3 times today a slipped into another room (laundry,cleaning, bathroom...) When I came back just a moment later, I couldn't find her right away. She can get down the hall or into another room in no time! I will have to adjust!
Feb. 2009 16 months
The past month has been very interesting. We upped her GH from .2 daily to .4 daily. She has been on the higher dose GH with at least 1000 mcg daily of B12 for a month now. (as well as the other supplements) She has almost seemed like, hmmmm, 'the noise is too intense' sometimes. It is hard to put into words. She is noticing so much, can do so much with her body and is craving all the input she can get it is sometimes over whelming for her. For example: she craved texture and motion, she tried to communicate to where she would just scroll through all her signs when she was excited --dog, all done, please, ball, play... and babble all the way. She started walking, but became almost worse at it as she could not stay focused forward long enough to sustain as many steps. Yes, occasional temper tantrums came along with it, but nothing outside the scope of a normal 16month old. I debated backing off with the B12, but decided to give it more time. Now I think I see her beginning to 'organize' it all, like she can control her new super powers better. Suddenly, today we can consistently use b's and m's and p's on demand along with d's. Over the past few days is walking with more confidence and less diving to hands and knees for speed. She is getting her point across without as much frustration. (expressive speech does seem to be our biggest delay. I do not know what we would do without signs.) It is hard to explain and, as always, I wonder if I am over analyzing. Our pediatrician says she looks great, our PT is surprised every week with how AJ 'feels' and says her only complaint is that it is hard to stay one step ahead of Ayden Jane.
August 30, 2009 23 months
We have found tremendous benefits with the b12, but we also have seen a cycle of things almost being too much for Ayden Jane to handle when we increased the dose. She works through this and on the other side new skills break through. The difficult times are shorter and less in intensity now, but still there. I am not sure that makes sense, so the best I can do is use an example.
Ayden Jane started the b12 around 12-13 months. (a bit of stop and start...) At 15 months she was walking 5 or so independent steps at a time. We increased the dose and she actually regressed and did not take but a couple of independent steps before stumbling, tripping or falling. What I began to see, however, was that she was so distracted noticing all the other things in the room, babbling... that she was not concentrating on the steps like she did previously. It was like the world was coming at her so fast and loud, that she could not process it all. She became a whirl wind of destruction as she played with toys for seconds a piece and had to touch everything. We worked on sensory integration and held tight. As she adjusted to the increase, the improved energy and other benefits stayed and she became able to use the new powers for good.
We went through a similar period around 21 months. She became wild woman once again. After chatting with our PT (she is AMAZING) we put some back up plans in place to help meet her sensory integration needs, but allowed Ayden Jane a bit of time to see if she could work it out on her own. Sure enough 2 weeks later she stopped the sensory seeking and discovered a funny sort of jumping, running(or at least a very cute wobbly imitation of running) and began finally replacing some of her signs with words. Her balance and ability to climb also greatly improved. It is not measurable, but she just became rock steady in her movement.
What does it mean? I have no clue other than I hope that b12 in pws is studied so that the guess work as to who it will help, how to best use it and how to get the benefits with the least disruption or struggle. I feel incredibly blessed that Ayden Jane has responded so well to the oral b12. I wonder if as she gets older and is in a different stage of pws if she will need to go with injections. For that matter I wonder if there are benefits to gain now, but we have decided to hold off for now. Thanks for all the updates. It is fascinating to see the variety of response and a stunning reminder of just how complicated this crazy pws is.
July 2009 21 months
Janet, I do not have answers for you, but was wondering if you could share 1) what brand b-12 you are using 2) how much of each did you start with 3) what time of day did you give it 4) did you mix it?
I will try to answer without too much wandering in my thought.
1. We use pure encapsulations for the methyl form and blue bonnet for the cyano form. Both are liquids and the blue bonnet also has folic acid in it.
2. I started at 200 mcg. last oct/nov.
3. We started mornings I think, then went to morning and night. Now I split it morning, midday and night. I give her approx. 750 of each morning and midday. Then 1000 methyl at night. The process of raising it has been a balancing act of pushing it up a bit then enjoying the great effects and dealing with the 'side effects'. For AJ the problems were maintaining her weight (keeping it on that is) especially when she was 13 to 19 months. Also, she would struggle a bit with what seemed like just more input coming in than one little body could handle. We saw this in several ways. Tornado activity. Pulling everything down/into everything. Balance and coordination (and climbing ability) improved, but trying to do everything too fast so falling a lot. Loving texture to an odd point. Ex. sit and rub dirt/sand all over. Clenching every muscle. Overly emotional. I loved the improved energy, balance and attempts to communicate so we kept the B12 and found ways to deal with/solve the system overload.
4. I do not mix, just give her a bit of each.
As for why I use a bit of each, I find the cyano gives her bursts of energy but can make her edgy. It could just be the folic acid in it that makes her edgy, but I have not really looked for a different liquid. The methyl form seems to improve more or less over all. With it we sleep well, language is much improved, focus is better... Logical thought tells you why we stick with straight methyl at night.
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