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Aiyana's IEP today

Posted by on May. 26, 2010 at 8:20 PM
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She is doing decently academically but is still having social/aggression/staying on task issues. She will still be able to get special help next year, and we have to decide if it's best to keep her in Kindergarten another year or not.


The nurse gave us more information about the carnitine deficiency. Apparently it is a muscle disorder (slowly progressive) that interferes with the processing of fats for energy. It can cause muscle weakness and in severe cases fatigue, vomiting, growth retardation, low weight and brain function abnormalities. So it looks like the carnitine deficiency is behind the issues she is having. I guess it is similar to muscular dystrophy in that if untreated the symptoms get worse over time.


by on May. 26, 2010 at 8:20 PM
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peasntatersmom
by Leslie on Jun. 3, 2010 at 11:12 AM

 Hi!  :)

Thanks for posting the update.  Have you made a decision about Kindergarten?  That can be a tough one for sure, but I know you will make the right choice for her. 

Is the carnitine deficiency something that can be treated??  Please let us know how she is doing..

*HUGS*

Ravnmyst
by on Jun. 3, 2010 at 4:02 PM

We're going to be keeping her another year in Kindergarten, give her a chance to catch up socially and also in her size. She has been on carnitine since they found she had low levels of carnitine (which apparently is not the same as the primary carntine deficiency that the school nurse gave us information on), which really made DH mad at the doctors.. they give no explanation of the difference between just having low carnitine and carnitine deficiency. And from what we read, carnitine deficiency would explain all of her issues. bad some answers from all of her doctors would be nice, but seems to be a rare thing.

peasntatersmom
by Leslie on Jun. 4, 2010 at 12:15 PM

 Sry, I know it can be tough dealing with doctors and nurses at times.  My son took something called L-Carnitine along with one of his seizure meds at one time (I believe it was the Depakote, but would have to look through his home file to be sure). 

Is that the same thing that she is on now?

Ravnmyst
by on Jun. 4, 2010 at 9:04 PM

She's on levocarnitine, which looks like it's the same thing as L-carnitine. I'd lean towards her having the primary carnitine deficiency myself, given it explains her slow growth, behavior and development problems and everything else. Of course the doctor that found the low carnitine hasn't called us back to clarify what is going on...

peasntatersmom
by Leslie on Jun. 6, 2010 at 10:27 AM

 Yes you would think that the doctors would lean towards that also..I wonder why they aren't?

You may have to call them back yourself (after giving them a reasonable time period to call you).  Sometimes you have to be a little aggressive to get some answers!

Please continue to update!!

Ravnmyst
by on Jun. 6, 2010 at 10:38 AM

Yea, we're probably going to call them again. We're still needing to decide if we want her to have the test to see how much growth hormone she's producing as the test requires fasting and people with primary carnitine deficiency (if that is what she has) can have major issues when fasting...

 

I'll be keeping you all updated on what we know.

Ravnmyst
by on Jul. 1, 2010 at 10:48 AM

So Aiyana's growth hormone test results came back as normal so the endocrinologist is going to follow up with her growth in 6 months. We have an appointment with the geneticist on the 6th so hopefully we can find out what the difference between primary carnitine deficiency and low carnitine levels is.

On a lighter side, here are a few pictures of their week with their grandparents


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