C.O.A.C.H syndrome

iVillage Member
Registered: 03-20-2007
C.O.A.C.H syndrome
8
Tue, 03-20-2007 - 6:40pm

I have a son that was diagnosed with coach syndrome when he was 3 months old. I am a first time mom and he is now 1 yr.1/2. My story is long and complicated needless to say with everything he needs I know it sounds stupid but I have no insurance and no medicaid etc... He has had two surgeries for his cleft lip/palate, he has a bard button for feeding and has had PETubes put in his ears for hearing he also has coloboma on both eyes and a detached retina on his left eye as well.

I am writing because I am tired and frustrated and hoping for some help and advice. You are probably wondering why we don't have any insurance when I got preggers with him It was all of a sudden and even though we wanted a child we thought that we would have time to sign up for insurance with our job. That didn't happen after my son was born I only actually knew he was going to be born with a cleft by the 8th month. Anyway, well I should put before he was born i bought or put a house under my name for my parents. The after my son was born the hospital put us on the medically needy program, soon i quit my job just to be able to get him medicaid he came home for a month with 1/2 liter oxygen and an apnea monitor. After a month he was admitted into TCH with pneumonia he stayed in the hospital for 3 months. They helped us get the mediciad he needed and we thought he would be taken care of. He was for a year and then this Jan. home care calls me saying that they can no longer come for his therapies because his medicaid is cut off. Thankfully his therapist got him into a charity and that is the only way they are able to keep coming. We applied for CHIPs and at first it seemded that we were going to get it we have been calling just the other day they told us we could start making appointments by next week now we called back to see how many Dr.'s they had let know that we could take him to see. Well they tell us that they have put us under investigation because I have my parents house under my name and apparently my husband makes too much. I know that's what it seems like, but it's not, with out help how will my son eat? (feeding supplies) I just don't understand how he can be denied medical care and his needs. I am sorry I am sure I probably am not even making sense. I just want my son to get what he needs.

Sorry to waste time.

Avatar for bahama_mama_llama
iVillage Member
Registered: 04-22-2003
In reply to: vcalmc
Tue, 03-27-2007 - 8:05am
Definately look into those waivers Dawn gave you!!!

Stefanie

 

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iVillage Member
Registered: 03-25-2003
In reply to: vcalmc
Mon, 03-26-2007 - 10:33pm

This is what I found about Medicaid Waivers in Texas: http://www.pascenter.org/state_based_stats/medicaid_waivers_info.php?state=texas

I hope this helps!

Dawn

iVillage Member
Registered: 03-20-2007
In reply to: vcalmc
Mon, 03-26-2007 - 5:57pm

Hi-

Thank you all for your support and help, I haven't heard of a Medicaid waiver before.
I live in Texas, and my son doesn't have seizures but he does have a feeding tube. Medicaid has denied us twice and CHIPs just turned us down. We even tried to get him SSI but no luck there either.

Thank you again,
Virginia

iVillage Member
Registered: 03-24-2003
In reply to: vcalmc
Sat, 03-24-2007 - 8:36pm

Welcome Virginia!

Maria :)                


Avatar for bahama_mama_llama
iVillage Member
Registered: 04-22-2003
In reply to: vcalmc
Fri, 03-23-2007 - 10:35pm

Does your son have any medical issues (like seizures, feeding tube, still on O2, etc...)

Stefanie

 

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iVillage Member
Registered: 03-25-2003
In reply to: vcalmc
Wed, 03-21-2007 - 11:55pm
Thank you so much for all of that information. I am a "vision geek" and I am always looking for new information to add to my repertoire. I really appreciate your taking the time to educate me. :):):)
iVillage Member
Registered: 03-20-2007
In reply to: vcalmc
Wed, 03-21-2007 - 3:31pm

Thank you for the inquiry, it is really rare and alot of people say it might be like CHARGE and in the spectrum of Joubert syndrome. Me and my husband had signed up to be in a genetic study about the syndrome however with all of my other sons' Dr.'s appointments that just got put on the back burner. I am sorry to sound so depressed, I do need to vent I don't have alot of friends and I am starting to feel like an idiot when I start to cry in front of my son's therapist. I know everyone has hard times it just gets to me, everything, sometimes, I guess. I think I actually ran my friends off simply because I wouldn't call them on the phone I tell them I don't want them to hear me crying. Thank again for just replying.

Virginia

Summary
COACH is an acronym referring to an association of anomalies that includes cerebellar vermis hypo- or aplasia, oligophrenia, early onset congenital ataxia, optic nerve or chorio-retinal coloboma and hepatic fibrosis that starts in the first few months of life. It has been described in less than ten patients so far. A peculiar face (hypertelorism, mid-face hypoplasia, shallow orbits, alobular pinnae) and moderately delayed psychomotor development were also reported. Progressive renal insufficiency with fibrocystic changes may appear during the first year of life. The occurrence of multiple affected patients in single sibships, and the fact that parents were described as healthy in all reported cases, indicate that this condition is inherited as an autosomal recessive trait, but no specific molecular defect as been identified. This syndrome appears to be a separate entity from Joubert syndrome as none of the reported patients displayed hyperpnea or abnormal movements of the eyes and tongue. Life expectancy depends mainly on the severity of the hepatic and renal manifestations. *Author: Orphanet (May 2004)*.

Clinical signs

Ataxia/incoordination
Autosomal recessive inheritance
Cerebellum agenesis/hypoplasia
Flat supraorbital ridges
Hepatic fibrosis
Hypertelorism
Mental retardation(mild)
Nystagmus
Short midface
Small/hypoplastic ear lobe
Everted lower lip
Prognathism
Ptosis
Renal failure
Encephalocele/exencephaly
Postaxial polydactyly
Update : 18/03/2007

iVillage Member
Registered: 03-25-2003
In reply to: vcalmc
Tue, 03-20-2007 - 10:53pm

Welcome to the board.

Please, please never feel bad if you need a place to vent. I am not a mom, but I am a teacher. I have had several moms in my classroom who had kids with a lot of medical needs (I taught students who were deaf-blind). It can be tiring and frustrating. I had three moms apply for the medicaid waiver at the same time. The poorest student didn't qualify, another student waited and waited, and another student received it right away. All I could do was shake my head... Sometimes "the system" doesn't make any sense and I think that folks around here can identify with that.

I have not heard of C.O.A.C.H. What do the letters stand for? It sounds similar to CHARGE, but...

I hope that things get better soon!

Dawn