Saturday, April 28, 2012

Supplement Update

Ayden Jane is still 'over firing'.  She is the quintessential bull in a china shop.  Energy and strength abound, however she spends her days running into things, spilling things, hugging HARD, laughing LOUD, talking NON stop, getting really dirty and sweaty.... you get the picture.

Somehow, although she is out of control, she has better balance and coordination.  Just she goes so fast sometimes...

I talked with her teacher at the end of the week and she said that Ayden Jane is wild and loud...  Basically, AJ gets crazy excited over tiny things and is pretty demanding of attention but her awesome teacher says she is just thrilled that AJ is so "full of life."  A great teacher calls it enthusiasm (other teachers might call it lack of self control!)  

We had PT and she saw pretty much the same thing.  Whoa!  Slow down....  

In the past, we have seen a 2 week time frame with Ayden Jane.  She would go through 'out of control' cycles for about 2 weeks and then great new skills would pop up.  I remember once it was jumping, other times it was verbal...  Sort of like some new connections are being made, but she just can't quite control them yet.

So, the decision is/was, dial it back a bit or give Ayden Jane time to work through it.  Her teacher is totally supportive and her PT says ride it out so that is what we are doing.

I feel a bit bruised and battered and like I need to peel her off me at times (deep input seeking much?) but I'm in.  We shall see what this week holds...

Oh, one really awesome piece is that Ayden Jane holds my hand.  I know that sounds like a little thing, but Ayden Jane has never really reached for my hand.  She has always yanked away when I reach for her hand.  Ever since she was tiny, it is just something that bothered her, so I only grabbed on when necessary and then it was with a death grip.  This past week, she has reached for my hand and held it, just to walk together... :)

Wednesday, April 25, 2012


Well, I have to say that the decisions I have to make regarding Ayden Jane are not nearly as hard as some of my friends with special needs kids.  School is awesome so no decisions to make there.  IEP is done and therapies in place.

As a bonus, Ayden Jane loves her 3 therapists!  Mrs. Jen (PT) has been a long time favorite.  She has been working with Ayden Jane since she was 5 months old.  Mrs. Rodgers is the school based ST and has had Ayden Jane for basically 2 school years.  We just added Mrs. Stella (OT) and Ayden Jane really likes her.  Oh, and I can't forget Mrs. Rona who runs the Hugs for Horses program where Ayden Jane rides weekly.  So, she has 4 'therapies' per week of about 45 min. to an hour.  That will be the set up for next school year.  We take a break through the summer from the school based therapies - ST and OT.  Definitely filing that time with swimming!

Supplements are a big source of stress and decisions making.  Well, not so much stress as just plain work.  I tend to over research (if that's real thing) so I understand the why's... of everything I give her.  That being said, her response to things is not at all predictable!  I feel like I spend my day analyzing everything she does when I am playing with the her supplements.  It is a bit exhausting trying to watch, take notes, decide what is significant...  Then I need to sort out what is helping with what... Should I go up slightly or down or are we good....  I would say that right now I am dealing with this with the B-12.  I think it is somewhat over done at the moment, but history tells me that sometimes it just takes her time to use new superpowers.  So, should I back off, or give her time?  Some days I change my opinion a hundred times!

The other thing Gary and I have decided is to make a follow up appointment with Dr. S.  She is an allergist/immunologist we saw a while back when AJ had the nasty infection.  I really liked her and since there is a primary care pediatrician group that shares the office with her, I am thinking it may be a good fit.  I just think that this crazy high eosinophil thing is a piece that indicates we will be fighting sinus stuff every year.  Not sure she can get to the bottom of it, but thinking that she will be more helpful in treating it...

Next up?  We are a part of 2 research studies.  One of them is expanding and requires time in Bethesda MD at the NIH.  How do we do 'all we can to help' without over doing.

Other little things like is it time to do scoliosis x-rays, eye checks...

At least she is back to energetic and quick and goofy and happy.  The rest I will work out over time.

Sunday, April 22, 2012


Well, I am keeping the supplements rolling.  Ayden Jane finished the school week well and her teachers feel she is doing great.  Mrs. J said that Ayden Jane is beginning to seek out friends to play with and doing a great job negotiating how to truly play games with her friends.  This is a big one for Ayden Jane.  I can't say that this was caused by the supplements because it could just be maturity kicking in, but it is apparently a very noticeable difference so I have to wonder.

It has truly been a crazy few days.  Noah turned 17 (more on that another night!) on Thurs. had soccer games Thurs. and Friday nights and the prom on Sat. night.  It was sort of a 3 day festival!  Ayden Jane stayed up ridiculously late on Thursday and Friday nights.  The fact that she was able to without 'crashing' is pretty amazing in itself.  Then Sat. and Sun it rained and rained and rained!  Uggg.  So, basically, it has just been a strange bunch of days so I have no real idea of how any of the supplements are 'working'.

I am also watching closely as we dropped Ayden Jane's gh dosage from 0.7 to 0.6.  Hoping to get her all straightened out soon so we can go back up, but for now this is what we have chosen to do.

Other big news?  We are fostering a puppy!  His name is Tucker and Ayden Jane LOVES him.  Here is a picture of how he greeted Gary on their first meeting.  Sadie who you see in the background is not so sure Tucker is a good idea!

Wednesday, April 18, 2012

So Far So Good

Well, I have increased Ayden Jane's supplements for a short while now. At this point the changes are that I am spreading out the dosage of B-12 into 2 doses.  The combination has added additional Folic Acid, B-6 and Biotin.  I think these are supporting the B-12 somehow.  (or just going back to spreading out the B-12 is helping)  I then added back the creatine.  After a few days of a little higher 'loading' dose, I have settled into a dose of 1/4 tsp. morning and 1/4 tsp. afternoon/evening.

So far, teachers report great days at school with Ayden Jane thinking quicker.

Today the ribose came and I gave her a dose of 1/4 tsp.  She did not have any issues with blood sugar drops so I will use the 1/4 tsp. twice daily (just like the creatine) and see how it goes!  I can honestly say I did not spread these things out well enough to give really definitive info on what helps what, but the results so far have been so much of a relief it is just hard to be patient.

Ayden Jane is thinking very quickly.  Mostly this creates hilarious things coming out of her mouth but sometimes it makes her hard to understand.  It is like her mind is suddenly faster and her mouth doesn't quite keep up.  It is the first time in a long time I have had to ask her to repeat things several times in a day.  I am guessing that it will even out.  If it doesn't I am okay with it because I love the fast thinking.

PT was postponed this week by Jen who needed to take care of her family.  I am excited to see what she thinks on Friday.  2 weeks ago, Ayden Jane was B-12 washed out and it was before I reintroduced creatine.  Jen was really worried about her and noticed definite decrease in motor planning and tone.  Since then we have 'walked the balance beam' and continually improved.

This video I took with my phone today.  Just figured all this lab/supplement/medical stuff gets boring so enjoy!

Monday, April 16, 2012


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!)

Thursday, April 12, 2012

Spring Break

I have been oh so slack about posting lately.  If I had to give a reason I guess it would be that there are too many things to talk about.  So, instead of trying to cover anything to update you on AJ, I am going to check in on the other 3.

Last weekend Kayla surprised us by getting a ride home for Easter.  It was a very short visit, but it was so fun to reconnect a bit.  Gary, Noah, Kayla and I stayed up very late on Friday night listening to stories and being entertained by Kayla and Noah catching up.  They really do miss each other and it will be great to see them head into the surf together this summer.  Ayden Jane attached herself to Kayla.  Everywhere we went she wanted to go in the same car as Kayla.  If Kayla sat down, Ayden Jane sat on her...  It was fun to see Kayla so surprised at some of the things Ayden Jane says.  When Kayla was home at Christmas, AJ was still fighting all the bacterial infection and just was not so much herself.  The verbal skills that popped out after she got better are soooo entertaining!

Kayla is finishing her freshman year at Clemson.  So strange to think that this time last year she was 'caving' and choosing to go to Clemson.  Now she would say it was the best decision ever!  She has thrived at college.  She is bringing some friends here this weekend to visit the beach.  It will be nice to meet a few people from her new life. She will head back to finish up and then will get to head to Florida and spend a few weeks doing 'student research' at UFL with Dr. Miller and some of her colleagues.  So cool.  Finally after that we will have her home for 3 months!

Noah is turning 17 soon.  He is working on where he wants to head to college... all that sort of stuff.  I think to some extent the end of his junior year is sort of like preparing for the storm.  His senior year will be filled with college applications, soccer and working.  Oh, and choosing where to spend the following four years and start his future!  He has had several colleges contact him regarding soccer, but not ones that he even had on his radar.  Merging what he wants in a major, finding a soccer program that he will fit well with and hopefully finding an affordable option will be challenging.

Mckenna is turning 11 in a month.  She will head into middle school age next fall and has lots of great kids for friends.  She is enjoying art and soccer and was invited by her music teacher to be a part of a program for music and drama.  She is brilliant and sensitive and truly just beginning to 'find' herself.

That's the wrap up around here.  I will try to be more interesting next time.

Saturday, April 7, 2012


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:

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.