Tuesday, July 24, 2012

Another Syd Update

It has been about 5 months since introducing the gluten/casein free diet to Sydney and about 4 months since initiating the Methyl B-12 injections and atarax for sleep every night. I thought it was time for an update.

-Sydney is talking SO much more than ever before.  She still struggles with new people and is VERY shy in the beginning, BUT, she is opening up faster to people.  Just last week she started a speech summer camp (CAMP W.I.L.L.D. at University of West Georgia) and within 2 days, her teacher/aid told me that she is amazed at how much she is already speaking to her.  She barely would put a word together for her during the initial evaluation, so this was great!  She also is conversing a lot more at home. She likes to teach Macey what to say and how to do things for example: "Macey, did you hear me? You have to tell baby to go to sleep", or "Macey, today I went on the slide.  I can't go up the slide, I have to go down a slide.  Can you go down a slide?" She learns by teaching her sister.  It is such an incredible thing to see.  Sydney still struggles to use pronouns, and she gets stuck on sentence structure sometimes, but you can see that she is thinking and trying to piece it all together (which is far from her old drugged up self).  Because of this, a few people (including her behavioralist and Aunt Ali) have turned me to auditory processing disorders.  We will have her tested in the fall for this.

-Sydney's memory is showing improvement.  She has mentioned her old school a few times and some of her old friends.  When I converse with her she can get a few sentences in where as before she would get one maybe two. I know that she is able to speak better but she is clearly thinking more and remembering more about her day. For example:
Me: Sydney what did you do today at school?
Sydney: Sydney went to a new school today.
Me:What did you do at school?
Sydney: I went down slides and I do letters.
Me:  Do you like your teacher Hailey?
Sydney:  Yes, Sydney likes my teacher. She gave me a sticker. See mommy, see!?(As she holds out her hand)

-She is opening up a lot faster to strangers: Aside from her Camp W.I.L.L.D. experience, Sydney was in swim lessons for the last two weeks and she didn't hesitate at all to jump into the pool with two very perfect strangers.  She loved it and loved them within minutes.  She was beaming:

-She sleeps!  Sydney rarely ever wakes up at night anymore.  I KNOW RIGHT!!??  It is a miracle!  We have come to find out that the ONLY times that she wakes up now is when she has a food slip..usually gluten.  Isn't that amazing?  This has happened time and time again but recently we had another experience: Just this last Tuesday night Syd was up all night. Cameron and I couldn't find the culprit and so we just thought that maybe she just had an off night.  Come to find out, this morning while driving her to school I found her snack in her backpack, which meant that they had forgotten to give her her snack on Tues and they gave her goldfish for snack instead.  Ugh I was so MAD! (What if she had a sever allergy and needed an epi pen or something?  SO unprofessional!).  Anyhow, I was pleased to find more evidence of my sleep/gluten theory.  I am telling you, it is crazy how much food affects this kid, especially her sleep!

Due to this gluten issue, we are starting to believe that Sydney might have Celiac Disease.  We want to test for it but she must be on a gluten diet for 2 months at least.  Isn't that awful? I don't think we can test her just yet...I am not ready to see all of the regression that will occur, not to mention the lack of sleep that will once again happen.  I can't go back there!  So for now we will have to be even more strict with the "hidden ingredients" in foods.  The risk is just too great if she does have gluten.

-Sydney's Sensory issues have nearly disappeared.  She no longer NEEDS to sleep with her "soft snowman blankie".  In fact she never even asks for it.  She no longer throws massive temper tantrums in the morning to get dressed...not even when dealing with her socks! (Whoa, just typing this takes me back to those crazy mornings...whoah they were intense!  It could take her up to an hour to calm her down.  Now if she does get upset it can usually quickly be resolved.)  She doesn't need to sleep on the carpet anymore. She doesn't shield her eyes at the TV in the mornings because it is too bright. She does swim a lot, and has a corn filled pool (in our living room) to play with.  But those are pretty much the only things that she uses or needs now (which isn't really different from any other kid!)

-Sydney's "stimming" (her spinning) has nearly stopped also!  She rarely spins now, and if she does it is one or two times while dancing to music.

-I took Sydney back to her behavioralist (Dr. Miller) a few weeks ago and he said without question, "yeah, it seems as though she just needs time to develop.  I don't think she belongs on the spectrum"  He went on to say that again, that only time will tell us everything and at the rate that she is changing, and the ways in which those changes are occurring she does not fit the conventional autism diagnosis.  Isn't this great news!?  Every now and again I will see things that shout out "spectrum" such as her gibberish, her grunting when she is really happy, or her slow response when you talk to her (almost as though she doesn't hear anything), but for the most part, she is doing so well and I just have to pray and hope that those things are just part of her slower development. I believe with every part of me that she will recover from whatever caused all of this whether it be from the epilepy itself, the hardcore meds, autism, Gluten intolerance, or anything else.  I know that she will be a functioning beautiful woman.  And I am loving every moment of watching her learn and discover new things.

-We took Sydney to Six Flags for the first time yesterday.  This normally would have seemed like an insane thing to do.  A young, maybe autistic child at a place with a lot of people and long lines? But she was amazing, and that just goes to show how far she has come in the last 6 months.  She didn't have one melt down the entire day!  At one point she said, "I wanna go home mommy" but that was because we had just been on two big rides (none of which she was allowed to ride).  She was so patient and so adorable!  If you ask her about the roller coaster ride she will tell you, " I screamed, I was silly".  She screamed when she heard other people screaming, but it wasn't out of fear, it was for laughs. It was so dang cute!  I got it on video:

-This is gross I know, but just for my records I want to note that Sydney also has had normal bowel movements for the first time ever.  I just accepted that she would be constipated forever, but now she has the "S" shape that Oprah always talked about.  She is finally healthy!

-The black dark circles under her eyes are not there anymore! She looks so healthy!

-She rarely throws tantrums, and when she does they are age appropriate.  She generally can come out of them in a timely manner.  IF however she has had gluten/casein then her crying and whining on that day and the day after are in full force and there is no telling how long it will last.

CONCLUSION:  I am not going to pretend that I know why these things have changed, but I do truly believe that they have a lot to do with all the the interventions that we have introduced. I wish I could pinpoint one and tell you what changed it all the most, but I can't.  Her ability to sleep I think has changed her life and given her the ability to learn and focus better. The diet has made her healthier and reduced the pain that was going on inside her little body. Because of that healing and other scientific factors that I can't explain, her brain can function properly...finally. The Methyl B-12 I believe has really helped with her language too.  So really, it is a combination of things that have helped Sydney to get to where she is today.  Yes she has been in therapy, and yes she has been in school, but it has been 4-5 months and these changes are too great to credit to just those interventions.  She is well on her way!

2 comments:

Katie H. said...

This is just absolutely incredible. The effects of gluten are fascinating to me...there is a lot more out there to discover about it and you guys are living proof of that! Thanks so much for your awesome email...I don't know that I ever responded! HELLO! Lame of me! But I have saved all my gluten-free emails in a folder on my computer for reference. It really isn't as bad as I thought it would be, just more expensive (Pamela's flour, which is great, is like $18 out here) but it has pushed me to start cooking more, eating out less, and being more aware of what I eat. Can't wait to continue following Syd's progress!

coco said...

Bbbrrriiitttnnneeeyyyy- You are so right; her progress has been unreal! I mean from mid-April when I came out there for spring break to my 5 week summer with you guys, it has been a huge difference! I give all the credit to you and Cameron, her teachers, doctors and all your prayers. He is really blessing your family. Thanks for letting me be a part of sweet Sydney's life (Mace and D aren't so bad either!)