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new here, taking it day by day.

Posted by on Jan. 15, 2012 at 8:23 PM
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So....short version: I told doctors about my suspecions over Sophia's developmental delays when she was 6 months old. Basically they kept telling me not to worry.

She started having seizures a week ago. She is 13 months old now. Just learned to sit, and grab. Still can not crawl, get into sitting position on her own, pull herself up, hates being on her stomach, won't hold her bottle or put food in her mouth, can't match words to objects i.e ball, shoe, etc. If you stand her up and hold her, her knees just buckle after a few seconds. And a bunch of other things. After an MRI (we rushed her to hospital after first seizure) they told us her brain is growing slower than normal, but otherwise looked good. They don't know why yet.

They've done a lot of blood work, and all has come back normal so far.

She is currently in hospital (this is the 4th night) because she had an allergic reaction to the first medication they put her on a week ago for seizures, and basically said it was easier for us if they keep her in while they fine tune her medication. She also has a terrible cold and fever. Head to toe rash. My DH is staying the night with her tonight alone, because I caught a cold too and it's better if I'm not there right now.

Anyways, I'm having a hard time with this. No one can tell me why she is developmentally behind, or why she is having seizures. I know it could be a long road to a diagnosis, but it's hard. The pediatric neurologist said she is about 5-7 months developmentally, depending on what she's doing. She's also roughly the size of a two year old.

However, she is very happy. Always smiling and laughing. The medications she is on right now make her extremely tired, plus her cold, so she isn't her normal self, but we know that will pass.


by on Jan. 15, 2012 at 8:23 PM
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Replies (1-6):
MomOfManyWords
by on Jan. 15, 2012 at 8:30 PM
I hope you can get answers. My daughter started having seizures at that age, too. She's 29 months old now & we're still trying to figure out what's going on.
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newmommy-again
by Member on Jan. 16, 2012 at 2:25 PM

Have either of them been tested for mitochromial diseases or Niemann Pick (all 3 types)?  or Batten disease?  unfortunately all of these are quite rare, but quicker diagnosis can provide better treatment

nscr24x17x3
by Member on Jan. 17, 2012 at 5:10 PM

my daughter will be 3 in less then two weeks and she also has seizures. they don't know why she has them. she is also developmentally behind. She is the size of a 7 months old at almost three. the only diagnosis they have for her as of now is FTT  (Failure to Thrive) and severe acid reflux.

Mipsy
by Member on Jan. 28, 2012 at 2:03 PM
Her developmental delays can be a result of her seizures. My son has epilepsy and it caused his regressions and delays. As for his cause of epilepsy, don't know. He has multiple systems affected so we are looking into mitochondrial diseases but many never have a reason as to why they have seizures.
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lifetimelove
by Group Owner on Feb. 11, 2012 at 5:41 PM
Ask about the lactate and private levels in her labs. And I would also ask about looking into mitochondrial disorders. Sounds very similar to my daughter at that age and she has pyryvate dehydrogenase complex deficiency. Mito disorders present similarly as well.
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Mipsy
by Member on Feb. 11, 2012 at 9:52 PM
I was gonna ask you if they looked at Mito for your daughter. They are checking my sons pyruvate levels and some others for Mito.

Quoting lifetimelove:

Ask about the lactate and private levels in her labs. And I would also ask about looking into mitochondrial disorders. Sounds very similar to my daughter at that age and she has pyryvate dehydrogenase complex deficiency. Mito disorders present similarly as well.
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