My son has Total colonic HD so it is alot like the long segment. He is 2 in 1 week. He is doign really well. He had a pull thru on 4/3/07. I hope I can answer any questions that you may have.'
Crystal
My son also had a total colectomy. He is 5 and a half now. He had his pull thru in 2004. He is a “normal” healthy active 5 yr old. He is medication free except for an herbal over the counter he takes every day. I would love to help in any way i can. Just let me know. We had a long road, but I promise there is a light at the end of the tunnel. Chrystal
-----Original Message-----
From: callison hirschsprungs-cpt7183@lists.careplace.com
Sent: Dec 18, 2007 7:05 PM
To: rcsnell@peoplepc.com
Subject: [hirschsprungs] long segment
Chrystal,
I would love to know what your son takes eveyday. Does he take the herb to
thicken his stool? How is he doing with potty training?
I guess I feel like I have constant questions because I feel so unsure of
the future.
Thanks, Crystal
----- Original Message -----
From: “Chrystal” hirschsprungs-cpt7183@lists.careplace.com
To: f.allison@myactv.net
Sent: Wednesday, December 19, 2007 10:01 PM
Subject: Re: [hirschsprungs] long segment
My son was born on 5/12/2008 and had ileostomy surgery on 5/16/2008 which ended up being TCHD.
We go to see the surgeon in a couple of days for a checkup and to see what our next step is.
Hi
I have a 5 month old baby boy with Long segment Hirschsprungs, currently doing really well, weighing 17lb11oz. He is drinking 4 (6-7oz) bottles a day, and get a continuous feed over night (500-700mls) to make up the quanitity for that day. We will have to start thinking about solids in a months time, scares the life out of me, any advice?
We waited to start solids until our son was just over 7 months old (we would have waited longer, but we are having issues with poor weight gain). He’s healthy and all, just skinny. I personally think it’s genetics, but the docs just want to be sure it’s not HD related. Anyway, we started slowly with the foods and stick to a high fiber diet including yogurt. We buy the Fiber One yogurt, that stuff is amazing! Anyway, we started that stuff a couple of months ago. We started with oatmeal to see how it went and when nothing went wrong we just kept on with it. Good luck!!
My son has Long Segment HD and seems to be doing great (fingers crossed!). He changes weekly, sometimes he decides that he is not interested in the bottle, while other days he takes all of the bottle but gets finicky with his jar food. I’m not sure why, but last check up he was at 50% for weight and 85% for height. My surgeon and pediatrician both reccomended yogurt. I give him Yobaby brand yogurt with his cereal and he loves it!!! We have many dirty diapers a day, I may change 2 diapers a day that don’t have any poo, but it has gone up from one, so thats pretty good. I would love to hear more about your little ones.
Hi there,
I had Long segment as a child. I am 24 now and still suffer with a few problems. I constantly have loose stools and suffer with a lot of flatulence. Do any bodies children suffer from similar symptoms? In addition does any body have any remedies or medications they use for their child to help with these problems. I know a lady above respnded saying she gave her child herbal medicine. i wonder what this was for.
thanks, and any help would be gratefully appreciated.
Jon
congrats on birth of your little one!!
Is this your first baby?
This is our second.
Our 4 year old has no signs of HD nor did anyone on either side of our family history.
My son is five months old and we’re having trouble starting him on baby food. He had to have surgery in February because his stoma prolapsed. Any time we start him on food his stoma starts coming out again. He doesn’t eat bottles that well so I am worried about him not getting enough nutrients. Any suggestions?
i haven’t started Joshua on solids yet, (they recommend 6 months in UK) so next week i start. But he has an NG tube down, so what ever milk he doesn’t take i top him up thru it. Also at night he gets 700 mls over 10 hours of the night. Maybe you could ask about starting him on night feeds, i know Joshua doesn’t wake thru the night as he is not hungry, and he tolerates the feeding no bother and at just under 6 months old he weighs 20lb6oz. let me know how you get on,
I just got a chance to read about your son’s surgery for ileostomy for TCHD. Please let me know if you have any questions. TCHD is different than even long segment because of difficulty absorbing. My son did not do well until we started him on Elecare and a salt substitute post his ileostomy. I would love to help you in any way and be a resource for you. I remember how hard the first year was. He is 2 1/2 and doing well. It does get better but it is a long journey. Please let me know if you just want to talk. Crystal
callison,
Can you send me an email at jason@venatores.com
I have some questions for you.
Yes, the TCHD presents some problems with absorbtion of water, but it is nothing that can not be controlled.
Thanks
’
Hello everyone,
My son has TCHD too. He is now 14 months old. Had an ileostomy on the second day after his birth and pull-through in 3 months.
He has been on Elecare all along (it killed me to not be able to breast feed him. The good part was I got to to donate tons of milk to the milk bank :-)).
He has transitioned to whole milk since last week and we are seeing changes to his pooping pattern. Not sure if it is related. He is also eating most solids that we make at home. I started his solids very late though almost around 8 months.
If anybody wants to talk or have questions to a slightly more experienced mom, feel free to email.
Anuj’s mom
Anujsmom,
Glad to here your child is doing well.
I would love to email you some questions.
We are just starting off with this process and as you know it can be very mind boggling.
My email is jason@venatores.com
Hi,
My son has TCHD just had an ileostomy and our surgeon believes that the pull through should happen by age 2 or 3 right before potty training.When did your son start the formula? My son is still in the hospital, they have him on TPN and just started pedialyte, they want to see if he can digest and then move on to formula. Any information would be very useful
Themis’s mom
----- Original Message ----
From: anujsmom hirschsprungs-cpt7183@lists.careplace.com
To: nancydrew642@sbcglobal.net
Sent: Monday, June 16, 2008 3:38:32 PM
Subject: Re: [hirschsprungs] long segment
denden.
How old is your son? What hospital are you at?
Our son is 5 weeks and is doing well with the ileostomy. It was quite a shock to us and we are still learning the ins and outs of the stoma, but it is not the end of the world.
The doc won’t put a time frame on the final surgery, he wants to do it in a couple of steps, but he was hinting at close to potty training age to try and avoid horrible diaper rash.
If you want to share stories, email me at jason@venatores.com
Best of luck to you and the little guy.
our little guy is 4 weeks just had the ileostomy . They are starting to feed him pedialyte to see how that goes and then start formula. Is that what happened with you? i’m concerned that they are doing the right thing as far as his nutrition goes.
denden,
Send me an email and we can discuss off-line.
Our son was diagnosed very quickly (2 days old) and the ostomy was done at 4 days old.
Our son has been on breast milk and regular formula since he was sent home 7 days post-op. They almost had to put a nutrient tube down his nose to supplement his milk intake, but he came around and was taking the right amount of milk at each feeding.
Without the colon, dehydration is a concern so I am sure the electrolites in the pedialite is there to help replenish his body.
I am assuming that he has not eaten well since he was born as well as not pooping much.