Glasses and Labs

I have been slack lately so I am going to try to post a lot more regularly.  First up, eyes.  Bad news is we lost Ayden Jane's glasses.  Well, actually, I lost AJ's glasses.  She is great about giving them to me or putting them in a safe place... when she takes them off.  I am pretty sure she handed them to me but I have NO CLUE where they are.

Good news is when we went to see the eye doctor today it looks like her eyes have not changed since last Sept. when we had them checked.  I don't know that it makes any sense that the events of last winter effected her eyes, but last summer when her tone was still low and the scoliosis popped up was when I started to notice the right eye occasionally wandering in.  It was time to have the eyes checked anyway so off we went.  It was the start of glasses so of course I will always wonder the connection.  In the end, I guess it doesn't matter.  What does matter is that she needs glasses for close up work like writing and reading so I have to get those new glasses!  Since the first pair came compliments of medicaid and we won't be eligible for another pair from them until next Sept. I have a bit of shopping around to do tomorrow, prescription in hand.

Next up, lab work tomorrow.  I was supposed to be headed for Dr. Miller's sibling study in April, but it is just not happening.  Probably more like July.  The last trip to our local endocrinologist  in February we decided to just wait 'til what we thought was the upcoming trip in April to do labs.  Since we are not going we need to check IGF-1.  We bumped gh twice since our last blood work.  I am really hoping we will be able to increase yet again as she is still under dosed if you go with weight based dosing.  I have seen such an improvement in tone and energy and body composition.  She has shoulders and tone!

I asked Dr. Miller if there was anything she wanted me to check while I was at it.  She wants a blood count.  I was a bit unsure what exactly she was looking for so I, of course, asked.  It is to check on her B-12 and iron supplementation and if there are signs of anemia.  Since we supplement quite heavily with B-12 my next question was what if she is still low?  Answer:  B-12 injections...  That would not thrill me, but it would not be the end of the world either.  Shots would be maybe every 2 weeks.  So why would a person still be anemic when taking loads of B-12 and iron?  In a word?  Absorption.  There seems to be an impaired absorption of a lot of nutrients in PWS and I would guess that B-12 might be at the top of that list.  I know many who see a big improvement from oral supplementation and there are others who see improvement only with injections.

B-12

I need to review supplements that we are using with Ayden Jane.  First up, thanks to some rigorous discussion on a pws page on facebook is B-12.  The first go around with using B-12 to supplement in PWS came along when Ayden Jane was just turning 1.  I researched what I could and even checked with her pediatrician for safety.  Basically, he said he was positive it could not hurt her but he did not really see how it could help.  All I needed to know was that it was safe so I tried it.

The response was nothing short of amazing.  The big kids wanted to get her a t-shirt that said B-12 baby.  That story is somewhat written up in old posts.  What applies now is that B-12 helped her energy, nervous system, response time, volume (if loud is helpful), sleep....  It requires both forms of B-12, methylcobalamin and cyanocobalamin.  It also requires support from the other b vitamins, although not is mega doses.

Over the past 4 1/2 years of giving Ayden Jane B-12 we have raised the dose quite high and I often wonder if we will one day need to go to B-12 injections.  It would totally be worth it to have a shot once a month or every few weeks because with B-12 Ayden Jane functions as a typical 5 year old.  With out it .... not so much.  Sleep is disrupted, she is slow and tired and frustrated and cannot concentrate.

Iron is the flip side of this.  I had sort of inadvertently backed of from the iron while I was trying to get Ayden Jane's gut working well.  Since iron can definitely slow down the process I had backed off.  Some other conversation on the PWS pages reminded me I needed to push it a bit more.  It also has similar effects of the B-12 and I know that the 2 work closely together so that is not odd.

Yesterday was an example of the super powers that the B-12/iron combo have for Ayden Jane.  She slept wonderfully the night before.  She woke up going 1000 mph.  She skipped back and forth, from room to room.  Paced gleefully as she talked....  Even her teacher commented when I picked her up how funny and full of energy she was.  She played all afternoon at home and then Daddy took her to horses.  He had her for a total of 3 hours including horses, dog washing (at AJ's insistence) and a quick shopping trip.  All Gary had to say was that it was only 3 hours and he was exhausted.  Ayden Jane went wide open until we finally got her to be still and quiet in bed for a few min.  (around 8:30).

I love it!  We have her IEP tomorrow and I can honestly say that days like today make me confident that the IEP really is just to have support in place in case she needs it.  But she likely won't!! :)

Labs

We have the results of Ayden Jane's most recent labs.  Things are still not right on the inside.  Her IGF-1 is just not coming down so we reduced her gh dose for now.  Other things indicate that the inflammation is taking it's good old time going away.  Other interesting thing is that her creatinine was low.  I stopped supplementing with creatine during the illness thinking that it would help with some of the fluid balance issues and because it can be tough on the kidneys...

Due to the recent accidental experiment with B-12 and the discovery that dosages definitely need to be readressed I am on a supplement mission.  With the help and guidance of Ayden Jane's endocrinologists I plan to revisit our supplements and maximize their use.  I have already increased the B-12 and started to add back in the creatine.

Next up comes D-Ribose.  Back when AJ was about 18 months and scrawny, even a bump in gh did not help her put on an ounce of muscle mass.  Not until I added the combo of creatine and ribose.  I thought I saw some good benefits from ribose, but it was challenging to manage the drops in blood sugar it can cause.  Ayden Jane's blood sugar was tough to keep up as it was...  She is much more stable in that category now so I am thinking it is time to give it a go again.  It has been ordered and is on it's way

Consensus so far?  Teachers report a great day at school.  Ayden Jane is LOUD and hilarious.  Only problem I had today was I had trouble understanding her a few times because she is talking so fast!  Food? No issues. Liquid?  Voluntarily drinking fluids... asked for and drained a full bottle of propel zero.

I'll keep you posted!

More B-12 and Spring Break

Spring Break was a great week!  It was like a 3 part vacation with family coming in the first weekend over Easter, some beach, playground and spring cleaning time in the middle and then Kayla bringing 4 friends from Clemson in on the last weekend!

Ayden Jane and I tried to clean up a bit and play a lot mid week.  I got her back on the B-12 and it has been awesome!  She is much more her typical self with behavior.  I even bumped her dose and bit we had this bizarre thing at the playground.  She has tried for a loooonnnggg time to walk along the edging of the play equipment on the playground.  It is a low, black plastic wall to keep the mulch in.  She likes to try to walk on it like a balance beam, but has not been very successful.  Last week she popped up on it and started walking foot over foot a long way and was just rock steady.  It was so strange!  Just a week earlier when we were there she could no where near come close to that!

Kayla a company were great to have around.  They are really nice girls and they were so great to Mckenna and Ayden Jane.  Mckenna tagged along to the beach and Habenero's and where ever.  She played Mario Cart with them and they never felt like she was a bother.  Ayden Jane was thrilled she always had someone to talk to!  AJ went swimming a bit, but it is still cold.  She is still determined to get in and ride waves as soon as we get there.  After 20 or 30 minutes in the ocean she wants to get out and warm up but so far the breeze at the beach has made warming up impossible!  The kid literally turns purple and requires a hot shower to get warm again.  (I know, bad parenting... but I take her home to the hot shower!)

B-12

So, here is part of an email I sent to Ayden Jane's endocrinologist.

Okay, so we have mentioned supplements and I told you that some of them had dramatic effects when young but I wonder sometimes if they make a difference now.

B-12 --  My, oh my, oh my!  Here is the scoop.  I give Ayden Jane 2 doses of B-12.  One contains 1000 mcg of cyanocobalamin, B-6 and Folic Acid.  It is a chewable from Bluebonnet.  The other is 5000 straight methylcobalamin chewable from bluebonnet.  I ran out of the methyl form end of last week and didn't make it to the little health food store in town that sells them.  No worries... I went Monday and they were out of them because they were back ordered.  Hmmmm.  Next order coming in Friday... eh, I could just order online.

Monday AJ had a not so great day at school, but manageable.  At the playground during Mckenna's soccer practice she melted down over peanuts.  She could not plan past the one little road block... Then she chose to watch kids play way more than play.  Odd, but she is 4 I figured.

Tuesday at school, she decided to help herself to a snack of blueberry muffins!!! (They caught her one bite in)  She has had NO issue with eating a different snack and has turned down an option when offered. She proceeded to argue her case over these and to have melt downs over nothing and her teacher (who is AMAZING was really concerned!).  Horses went fine in the evening and then she was uncharacteristically difficult at Noah's game afterwards.  We just took her home early and she went to bed.

Wednesday she woke up great and I expected a great day at school.  Wow was I wrong!  When I picked her up, AJ had been asking for food, totally unstable emotionally and not able to solve a single problem for herself.  They actually had to remove her from the room and take her for a walk to calm her down.  She has never struggled anything like that. Next came PT.  I did not tell Jen because I wanted to see what would happen.  Finally, after about 45 min. 2 major falls and Jen getting concerned something serious was going on I told her of my suspicion that it was B-12 related.  She said that what she saw was AJ's motor planning and body awareness were way off.  Ayden Jane also had moments of staring into space sort of half here.

So, Wednesday after all this had transpired I had a chance to think about it all over the course of the past few days other notable things:

1) The past several days Ayden Jane was R E S T L E S S in her sleep at night.  She was talking, fell out of bed and was just generally all over the place in her sleep.

2) She was constantly attached to me.  And I mean touching, squeezing, banging into, climbing on, wrestling with... 

3) Argumentative.  And I mean more than usual :)

4) Falling a lot.

5) Completely unable to talk and do anything at the same time.

6) Fell asleep in the car on errands.  This is the kid that talked in the car on a trip to Richmond from bedtime to    10 pm because she just doesn't sleep in a car with a captive audience!!

So what is a Mom to do?  Drive to the not so near vitamin shoppe and see what I can find.  I found this: http://myessentialsource.com/?p=146

I gave Ayden Jane 2 Wed. late afternoon. She slept much better... Although did wake me up at one point to tell me Go Bears!  (Gary's a Chicago Bears fan)  Of course she was still sleeping, but she was in one place much longer with little thrashing about.

Then 2 Thursday morning.  Thursday at school the report was that she started to spiral down, but was able to catch herself and turn it around.  She skipped the nap Thurs. afternoon after school even with Easter party (and not food issues), and an OT eval.  She did great in the OT eval (Which means she did poorly enough to qualify), although fell off her chair 3 times... and a few other non AJ like things.

Bizzare!  But sooooo not giving up the B-12 EVER. 

B-12 posts from Holistic List

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.