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Old 06-19-2009, 10:17 PM   #1
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Anyone have a kiddo like mine?

We are at a loss... no official diagnosis. We have to be missing something here. If anyone can help PLEASE give me ideas!
My Brooke is 2 1/2 she has a siezure disorder and intention tremors, she is speech, fine & gross motor delay. She has low muscle tone all over her body.
As an infant she had severe reflux to the point of failure to thrive and had surgery and a feeding tube, we just got her Mickey out in Novermber. She has poor cordination, Sensory processing disorder- avoidance. She has made leaps and bounds the last year in therapy,but she keeps falling behind. Lots of food allergies too.There is something we must be missing...... Any other kiddos sound like this?

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Old 06-19-2009, 10:39 PM   #2
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Re: Anyone have a kiddo like mine?

I have a daughter that has sensory processing disorder but is sensory seeking...She also had low muscle tone and has acid reflux (I think she has grown out of it though)...She too is delayed with fine and gross motor skills too! The speech part of the delay is because of her low muscle tone and the walking delay is because the the sensory seeking disorder. My daughter has never had a feeding tube, but she has also never lost weight except for about 6 ounces right after she was born. She has been given the FTT label because she does weigh a lot...She does gain, just slowly!

Do they know why she is falling behind? Does she have PT/OT and speech therapy? Have you done any testing to see if there are any underlying issues (I.E., hearing tests, etc.)? Has she seen a developmental pediatrician? If not, I would request it! They test for anything and everything (neurological, etc.) My daughter is going to be seeing one next month.

Just know that everything will get better...If you have any questions, let me know!
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Old 07-08-2009, 03:48 PM   #3
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Re: Anyone have a kiddo like mine?

Have you looked into metabolic disorders (ENBS, carnitine profile, urine organic acids, etc are all tests for them)? The southern states don't newborn screen for all of them, so she might have only been tested for a few. Most can cause seizures, low muscle tone, etc. Some of the rarer disorders have no simple screening test.

My daughter has a metabolic disorder and unrelated food allergies.
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Old 07-18-2009, 10:06 AM   #4
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Re: Anyone have a kiddo like mine?

my dd has low muscle tone, global delay, has seizures, she also has sensory issues, and we do not have a dx yet either. She was 14 lbs at 13 mths old and i was told she was FTT, but we did not do a feeding tube. we chose to do high calorie thickened liquids. she is now almost 4, and is near a normal waight. Our daughters sound alot alike.
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Old 07-18-2009, 09:16 PM   #5
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Re: Anyone have a kiddo like mine?

The low muscle tone can cause the reflux issues, but probably not that severe. Has she had an MRI of her brain/brain stem area? That is the area of the body that deals with coordination ect.
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Old 07-19-2009, 01:56 PM   #6
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Re: Anyone have a kiddo like mine?

fragile x is what comes to mind for me.

Last edited by BeckyP; 07-19-2009 at 01:58 PM.
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Old 07-21-2009, 10:56 PM   #7
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Re: Anyone have a kiddo like mine?

A lot of seizures can cause some of those symptoms. What do the doctors say?
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Old 07-23-2009, 11:25 AM   #8
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Re: Anyone have a kiddo like mine?

My dd had a MRI in Dec that showed that her Cerebellum is getting smaller. So they are testing her for Genetic disorders. the ones for the most common causes have been normal
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Old 07-23-2009, 12:32 PM   #9
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Re: Anyone have a kiddo like mine?

Quote:
Originally Posted by kaydonette View Post
My dd had a MRI in Dec that showed that her Cerebellum is getting smaller. So they are testing her for Genetic disorders. the ones for the most common causes have been normal

Bless your heart!!! HUGS MOMMA!!
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