HD alone or with other disorders?

Hirschsprung's Disease
#1

Our son is 6 weeks old and doing well with his ostomy. I have been doing alot of reading and have found that many times HD is a single disease that is associated with other problems such as down syndrome or congenital heart disease or some other form of mental retardation.

I know this is probably sensitive, but we are all in the same boat together.

My question is this.
How many people have children with just HD or with HD along with other health issues?

If there were multiple issues, how did you go about getting them disagnosed?

Our son is doing well with the ostomy for HD, but if there are mental or physical issues that we should be looking for, I would like to get them diagnosed as early as possible.

Early diagnosis provides the best oportunity to adapt to the physical and mental needs of our children.

#2

I was concerned about the same issues- I posted a link the other day listing syndromes associated with HD. It is long but well worth the read. It gave me some peace of mind about my son. Maybe it can help you know what to be look for. I think you will have to copy and paste it into your browser.

Good luck with everything.

#4

Hi

my son is nearly 7 months old, he has HD and Congenital Central Hypoventilation Syndrome -he doesn’t breath sufficiently when he sleeps, milder cases than Joshua’s can only be diagnosed if on a sats monitor. I’m sure your child was on one during and after the op, so he prob ok.

As far as i know josh has no other conditions
----- Original Message -----
From: njcowboy
To: gruddell@tiscali.co.uk
Sent: Saturday, June 21, 2008 2:33 PM
Subject: [hirschsprungs] HD alone or with other disorders?

#5

Alasdair has only HD. When we were in the hospital waiting for his pull-thru and after, the doctors did a whole work up on him because they wanted to be sure he didn’t have any of the other medical issues that are commonly found with HD. He had a brain MRI and they did muscle/reflex tests, hearing tests, etc and he passed all with flying colors!

#6

muddle,
Our son was apenic after the surgery, but the surgeon was not concerned and blamed it on the anesthesia.

He had a tube for the first night, then was moved to a nose canula the next day and then off of it completely on the 3rd day.

I feel very blessed that his condition, albiet rare, is treatable and survivable.

Thanks for those who replied.

#7

My son has other disabilities other than HD but I feel they are not related to the HD and related to birth trama. He was diagnosed with his development delays years before the HD diagnosis. He is very mild CP which has mainly affected his speech and sensory. He showed many signs of developmental delays when he was young not meeting his milestones like walking,crawling etc… I contacted our local early intervention for an eval and sure enough he was delayed. One thing thank goodness is that he has never been delayed mentally. With a few years of OT and PT he has caught up on many of his delays and the only area of delay or problem is speech. The only other conditions he has which have have no idea if they are linked to HD is two autoimmune disorders- alopecia areata (hair loss) and possily celiac (gluten/wheat intollerent).
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Janel

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"Very little is needed to make life happy. It is all within yourself, your way of thinking."~Marcus Aurelius
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— On Sat, 6/21/08, njcowboy hirschsprungs-cpt9555@lists.careplace.com wrote:

From: njcowboy hirschsprungs-cpt9555@lists.careplace.com
Subject: [hirschsprungs] HD alone or with other disorders?
To: ajberchielli@yahoo.com
Date: Saturday, June 21, 2008, 6:33 AM

#8

We also have seizures too…very mild abence seizures.
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Janel

— On Sat, 6/21/08, Tysmom hirschsprungs-cpt9555@lists.careplace.com wrote:

From: Tysmom hirschsprungs-cpt9555@lists.careplace.com
Subject: Re: [hirschsprungs] HD alone or with other disorders?
To: ajberchielli@yahoo.com
Date: Saturday, June 21, 2008, 5:21 PM

#9

thinking about what?

njcowboy wrote:

#10

I have wondered the same thing, my 1st born is HD only and my 2nd is still so little so I believe there is time to discover new problems, but as of now he is great in every other way.

I keep watching to see if he seems “slow” but I don’t know what I really would be looking for, I have not talk to the pedi yet, but I guess I should at the next appt. right now he seems to be hitting all milestones and is bright eyed and curious, I am hoping that I would notice something if there was a mental probloem. He does have a smaller than average head, but the pedi did not say anything about it and I like he is on the small side of normal, not too small.

#11

I too had the fear of something else being wrong, my son is a little delayed on the large motor skills his doctors said it’s just from being in the hospital and having all the tummy issues his muscles in his back are weaker. He has a PT that comes once a week to our home and is now crawling, he will be a year old on 7/6/08 so he is still a little behind but he is improving. When he had his surgery I beat around the bush asking if they were sure nothing else was wrong the surgeon said no he is fine, that I was researching too much on line. I told him that we as parents have to do our own research because teh doctors fail to give us all the information.

#12

I had the exact same concerns when Anuj was diagnosed with TCHD and I started reading on the net. The hospital did all of the tests to make sure that there were no other health issues. Not that these tests are sureity of future issues (I for one was concerned for quite sometime that Anuj also had cystic fibrosis).

He is 15 months now and has no issues whatsoever that I or any of the doctors are concerned about. Hopefully it stays like that.

#13

My daughter was diagnosed with HD at 5 days old and had a colostomy at 7 days. She is 8 weeks old now and is doing great. We had a little scare with cystic fibrosis, but we found out (sweat test) she is only a carry of CF. Her pedi says she looks great and at this time we have no other concerns.