I have a special need baby with no diagnosis .. Help me .. What to do next????

Caro - posted on 01/01/2014 ( 3 moms have responded )

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My name is Caro , I am a young mother with my first child with lots of problems ... He is 14 months old with severe hypotonia axiale and hypertonia in arms and legs .. He was born at term 2.4 kg by c section for breech position and it was low risk pregnancy with no problems .. After his birth at 6 months I noticed he could not hold head or play with hands etc.. He went in so many tests mri, lumbar puncture, DNA , cgh array tests all r normal .. Doctors don't have any answer for my baby .. I am just devastated .. I don't know what to do next pls help me

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Amy - posted on 01/03/2014

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Look up Syndromes Without A Name they help families with children who are undiagnosed.

Caro - posted on 01/01/2014

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Thx for ur advice .. I live in London normally as my parents lives in Belgium .. i needed support and help so i have done all the tests here in Brussels after 3 months observation of baby in hospital (heard Belgium got best medical hospitals and proffessors) .. doctors saying they might try Levadopa and mestinon some medication for neuro junctions prob ..I think doctors scared and talking around ( i think doctors gave up ) and they delaying without giving right date of trial sooo frustrating.. As his getting bigger .. if these medications works so Y delaying ???

Anne - posted on 01/01/2014

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do not give up. take him to as many specialists as possible. journal EVERYTHING he does and cannot do. keep a binder with all of the medical records. Be meticulous. Know that as time goes on and different milestones are met or not met the doctors will have more to go by as far as diagnosis. Until then work with him as much as possible both mentally and physically. YOU are his biggest advocate and WILL find out what is wrong. Are you in the US?

-anne

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