Special Needs

my baby girl is about to be 1 and is still have a 4-5 month mark...

my daughter will be 1 on the 28th :) i cant wait! but shes still so tiny and so behind. she doesnt have a diagnosis yet but shes seeing a geneticist in april and has ot once a week and she saw her neurologist and had an mri of her brain and he said it looks great and completely normal, although that is wonderful news were back at square one and still dont know whats wrong....and shes going to shriners hospital this week so hopefully we can get some answers and tools to help her.

she isnt crawling and wont bear weight on her legs at all and she just recently started smiling and shes very small and wont gain weight. she was 6 months old before she started holding her head up, and she acts very lazy like she wont hold her arms out to be picked up and she never cries when she wants anything or needs anything, its always up to me to keep track of time to know when she needs to eat or sleep and she sleeps a lot, still like a newborn almost. its frustrating sometimes. 

 im new to this site and wanted to share what im going thru with my daughter. my 4 year old son doesnt have any problems other than adhd but im not medicated until hes older if he needs it.

Re: my baby girl is about to be 1 and is still have a 4-5 month mark...

  • Welcome to the board!  There are a lot of great people on this board with a lot of great information, so don't be afraid to ask a question.
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  • no she hasnt yet. the soonest the geneticist could get her in was april and thats in dallas, we live in shreveport la and the only geneticist here was worse lol so were waiting on that. hopefully they can give us some answers 

     

    imageChoicesMom:

    Welcome Smile

    Has she had any genetic testing done yet? I hope you get some answers soon!

  • I would get a disk made of the MRI images and have them looked at again by a pediatric radiologist while you are at Shriner's. You might as well get a second opinion......

    Another thing to maybe think about is a possible metabolic disorder, especially if she seems to be sleeping so much. Maybe she is not getting enough energy from her food somehow? 

    Since it is a haul to shriner's maybe you ask the genticist what other sorts of avenues he/she may investigate so you could set up those appointments then too..... endocrinologist may be an option....

    WAY 2 Cool 4 School


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  • duh...shriners should read Dallas.....ipad's totally suck for editing once you have posted.....
    WAY 2 Cool 4 School


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  • My son is in a similar situation. He does bear weight on his legs, but he still can't sit up or push up with his arms. We just had an MRI, but no results yet. We see a geneticist in January.

    Like someone else said my developmental pediatrician thought it might be metabolic or mitochondrial too.

    Have you seen a developmental pediatrician? Also I would see about trying to add PT to your early intervention.


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  • imagepreggersINschool25:
    We see a geneticist in January. Like someone else said my developmental pediatrician thought it might be metabolic or mitochondrial too.

    I am new here too. But I have a mitochondrial/metabolic disorder myself; I hope you can get some answers. My appt is in January and I think I am just going to bring DD with. Neither of my parents had issues - just carriers. Thinking the same could be with DD - she can walk but has regressed (like I did at her age due to fat intake increase) along with other core issues and posturing habits. There is a wide range of conditions/severity with mito and a lot of info to take in - but they have come really far and now have therapies to help these kids be the best they can be!

    Welcome and good luck next month! 

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