Triplet Princes and a Princess

Triplet Princes and a Princess

Our journey to hearing with Cormac while living our life with triplet boys and a baby girl.

Sunday, January 20, 2013

A New Calleigh?

Where do I start?  Many of you know already Calleigh has never been an easy kid.  She is loving and sweet and adorable but mostly on her terms.  She has some sensory issues and was also prone to tantrums.  I know, what three year old girl doesn't have them, right??  But to me  they seemed different.  A bit more frequent and a bit over the top.  You also never knew what was going set her off.  Bright lights or too loud music at a store in the mall, an uninvited touch by someone when she wasn't expected.  It was hard to predict.  I know some people might say she is a "brat".  I knew this wasn't the case.  I felt something else was going on.  It's not for lack of trying to figure it out.  I still say to this day some times I still feel like we are treating a lot of symptoms but not finding the main cause of her various unrelated medical issues.  A link has never been found between her medical conditions by an doctor or geneticist.

So why am I telling you all this?  A friend (THANK YOU JENNIFER ROOT) of mine shared an article on Facebook called The Gluten Made Her Do It.  When I read this article I could totally sympathize with this Mom.  While Calleigh is no where as severe as the child in this article I could relate.  It sounded like Calleigh.  I decided it was worth a shot to try eliminating Gluten from her diet for 30 days and see what happens.  I couldn't hurt, right?  She had her last Gluten on Saturday January 5th. 

On Monday January 7th Calleigh woke up and went to school.  She didn't freak out or melt down at the door.  She didn't almost vomit from crying at the door.  She was agreeable and went to school happy pretty much for the first time since school has started in September.  That day her teacher said she had an OK day.  Fast forward and she went into school Tuesday, Wednesday and Thursday HAPPY.  Yep, no crying.  No hysteria.  No looking back.  Each day her teacher said she had a "great" day.  Friday she was a little upset going into school but nothing compared to normal.  I realized later she had eaten gluten Thursday evening without me realizing it.  We are still new to this whole gluten  thing and they sneak it in EVERYWHERE. 

It has been like a magical transformation.  She is like a new kid.  She seems so much more pleasant.  She has been over the top affectionate.  Kissing and hugging like crazy.  She gave her teacher's aide a kiss on the cheek during class.  She doesn't have a melt down when you try and change her diaper.  She enjoys her bath.  It seems she is suddenly the child we always knew was in there but only got small glimples of in the past 3 1/2 years.    This is a kid who I didn't want to take shopping because for fear she would melt down and just scream the entire time.  It was actually starting to impact how much I did with her.  It sounds horrible but to take her with me when I was alone with the other kids could just be too much.  I hated I felt that way but it was the truth.  It's not something I talked about too much but it was my reality. 

I have been almost testing her the last few days.  I picked her up from school on Friday and before I got the boys I took her to Loft (shopping, her worst nightmare).  She went right into the store.  She said Hello to the lady working there.  She walked around smiling and laughing.  She was talking to the manequins.  I don't think she ever noticed them before because she would normally be too upset.  She never cried. She never got upset.  She played Peek a Boo with me in the racks of clothes.  She accidently hugged a stranger's legs and starting laughing when she realized it wasn't me.   It's usually not worth taking her because I can't get anything accomplished.  This was a whole new experience.  I even took her to another store after and she was the same way.

I also read this article about Gluten Ataxia.  The list of symptoms are frightening close to Calleigh's unexplained symptoms.  We have been trying to figure out her balance, growth, clumsiness for so long.  Could this be it?  Could we be on to something?  I don't know for sure but we plan on continuing Gluten free.  The balance issues won't resolve over night.  It's not clear if it goes away but they said you might see changes in six months to a year.  I need to figure out what doctor to take her to get the information needed.  I am praying if this is the cause of her issues we are not too late and we will see changes in the next six months to a year. 

She hasn't really noticed the change in her diet.  We are not all going gluten free but small changes in everything are simple.  We used gluten free bread crumbs for meatballs and no one noticed a difference not even Frank. (I don't eat it so I couldn't tell you.)  Pasta is the biggest issue but I found spaghetti made of corn and she loved it and it seems almost the same as regular spaghetti.  I think the hardest part is convenience items and snacks.  No more grabbing things on the go.  I need to know what is in everything. 

I don't understand why none of her doctors have thought of gluten.  This is a child who is seen by six specialists every 4 months.  She sees her pediatrician every six months just to keep track.  Not one of them ever suggested it to me.  Her pediatrician is awesome, trust me.  He comes highly recommended and has seen all my kids since they were born.   I somehow feel like I have failed her in some way.  I feel like I should have tried it sooner.  I cannot tell you how many hours I have spend researching possible syndromes she might have or not.  Gluten NEVER came up in all these years.  I am so thankful my friend, Jennifer, posted this article on her page.  Can I say for sure it is the Gluten??  That's a big NO but just the changes in her sensory issues make it worth all the hassle. 

Stay tuned....we just might be on to something. :)

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