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Forum: Children with Special Needs


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May 27th, 2009, 07:20 PM
Ditzzy's Avatar Stupid Lamb;)
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We've gotten some new ladies recently, so can we do a check-in and maybe list what diagnosis(s) your children have? I know some of you have several different ones, while others have extremely rare conditions.


Ava has Laryngomalacia, Tracheomalacia, Cerebral Palsy (Ataxia and Hypotonia), and various anomalies that effect many different parts of her airway and skeletal system. Seizures are also an issue. It's believed that Ava has a syndrome or "something bigger" going on.

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May 27th, 2009, 07:32 PM
docsmomma's Avatar Platinum Supermommy
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Joey has Langerhans Cell Histiocytosis (LCH) with involvement of the ears, lungs, liver, skin, and a "mediastinal LCH mass".

There is some belief Joey has Pulmonary Fibrosis as a result of the LCH. Its too soon for a diagnosis of that yet though.

Melanie has a speech delay caused by fluid build up in her ears. No reason for the fluid build up but this is resolving.
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May 27th, 2009, 07:44 PM
stacyp's Avatar Mommy to Andrew & Luke
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Luke has Trisomy 21 (Down syndrome), laryngomalacia, he had 3 heart defects repaired 9/08, hearing loss corrected with tubes

Thanks Yvonne (Jaidynsmum) for my beautiful siggy!

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May 28th, 2009, 07:41 AM
iamkc's Avatar Platinum Supermommy
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Milo has Russell-Silver Syndrome, an extremely rare form of dwarfism (primordial dwarfism). He has several issues related to that, and a few that may just be related to his birth/prenatal care (I had it, but the people were idiots where I was!). He has many GI problems (has had a Nissen fundoplication and g-tube placed, is constipated always). He is growth hormone deficient, which is actually rare for RSS kids-they usually have all the proper amount, they just don't respond to it. He has various breathing/sleep issues-central apnea (they think awake and asleep), obstructive apnea, bronchopulmonary dysplasia (BPD, maybe because of his size, maybe because of an early RSV infection), something else they're trying to diagnose (seems like cystic fibrosis, but pulmo doesn't think so). His pituitary gland seems to cause quite a few of the problems. Hypotonia (technically classified as CP right now, but most likely not CP). Hypoglycemic. Cross-over asymmetry. And more. I just feel badly going on...the syndrome accounts for some diagnoses, but others seem to be separate. Milo also has torticollis (which seems to be getting better) and plagiocephaly with possible craniosynostosis.

Kannon has reflux, had severe obstructive sleep apnea, and maybe something else going on. We thought that surgery corrected the sleep apnea, but maybe not. He's on Zantac for reflux.

Last edited by iamkc; May 28th, 2009 at 09:05 PM. Reason: Adding as I remember
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May 28th, 2009, 10:35 AM
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Jess, the question was asked, you should never feel bad for answering.


Von Willebrand Disease- moderate for him, blood clotting disorder
Anxiety Disorder
and what appears to just be poor hand strength

Static Encephalopathy
Severe Reflux
Severe Articulation Disorder
Childhood Apraxia of Speech
most of this is caused by his lack of white brain matter in areas all over the brain. also he has excess brain fluid.

There are other things that are going on, but they are not really diagnosis' so we just continue to wait things out and keep therapy going and do rechecks every 6 months or so

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