Hirschsprung's Disease Member Introductions

Hirschsprung's Disease
#124

I can completely understand what you went through. OUr son too was all swol=
len from the fluid going into him. He was so swollen that when we drove up =
to say goodbye to him i didnt recognize him because he was so swollen. Our =
son had candida, a certain staph infection and a couple more that i forgot =
already. He was so infectious that we had to wear gowns and gloves in order=
to see him. so i t was horrible to to even be able to touch skin to skin w=
hen we had to say goodbye. our doctors kept telling us there was nothing th=
ey could do either. we even had them take him to surgery to see if they cou=
ld take out the rest of the intestines that didnt work to begin with, but w=
hen they went in he would bleed so much that they had to stop. it was a ris=
k we had to take because we couldnt just sit there and watch him die in bed=
and not do something to try and help. then us and the doctors came up with=
the idea of stopping antibiotics all together. theory behind that
was that the body makes its own immune fighting things and what if the ant=
iobiotics were killing off his bodies and thats why he wasnt able to fight =
the infections. so we stopped them and sure enough he got better.=20
did your husband or anyone in either family have hd when they were born? my=
husband had it when he was born which is how our son inherited it. but we =
also found out that not only did he have hd but he has a mutated ret gene w=
hich was passed on to our son logan. so when i got pregnant again we were a=
ble to do an amniocentisis test to see if the baby had the gene too. he doe=
snt though which put his chance of having hd down even more. i would define=
lty try and have another baby. from our experience, having our other son wa=
s the best thing that could’ve happened at least for me. knowing that we ha=
d another boy that was healthy was so great. he is 9 months now and i still=
look at him everyday and get tears in my eyes because it is just so great =
to be able to have him and know that nothing is wrong with him. i know this=
may sound awful but if we lose our son i would wish that we would’ve lost =
him when he was young like your son. only because after almost two
years of knowing him and trying to do everything possible to keep him livi=
ng would be too much. in january he had a small intestine and part of a lar=
ge intestine transplant. over the next few days they saw that his stoma was=
turning green so they decided to go in and saw that the organs were dieing=
… if they hadnt have gone in when they did we might have lost him then. he =
is now healing up and will be relisted. sorry i keep rambling but like i sa=
id before i think you are the first person that would know to a degree what=
we are going through.=20
jackie

— On Fri, 3/13/09, ihave1angel <hirschsprungs-fft-2273@lists.fireflyhealt=
h.org> wrote:

From: ihave1angel hirschsprungs-fft-2273@lists.fireflyhealth.org
Subject: Re: [hirschsprungs] Hirschsprung’s Disease Member Introductions
To: nascarmom48@yahoo.com
Date: Friday, March 13, 2009, 8:17 AM

#125

Welcome Jo! I am also Jo :slight_smile:

I have a 19 month old with HD and our second little boy is on the way due 2/8. Welcome to the group! I’m sure you will have some great insight for us.

Jo

#127

You haven’t said anything that has upset me! I’m out of town staying with my parents for the week, and just haven’t really had much time to be on the computer! I’m so sorry to hear about Logan! I truly hope everything works out and they can get around the technical stuff and get him on the list for a transplant! I will pray for him and for your family! Please keep me posted on how he is and how you are!

#128

Hi all. I am a new member to this group and am excited to share information on our kids with HD. My name is Jessica Guthrie, I am 31 and live in Everett, WA with my husband and my 3 kids, the youngest of which has SSHD. Alasdair is currently almost 8 months old, has had his pull-through surgery and is doing great. I look forward to meeting some of you. Alasdair’s HD story and a link to his website that took us through the first 3 weeks of his life is under My Story in my profile if you’re interested.

jessica

#129

Hi, I am Mom to an 8 month old beautiful baby boy with HD. My little guy had his pull through almost two months ago, and I would like to talk with other parents about what comes now and in the future for him.

#130

I am Lorraine, mum to James (3yrs) and Ben(16 weeks) - Ben was diagnosed with HD at 4 days old. His pull-through is scheduled for 9th Aug (only 2 weeks away - I am getting very nervous). I joined this group to talk and share experiences with people who have children with HD. We are in the UK.

#131

I’m sorry if i said anything in the last email to make you upset.

I hope everything is going well with you. we just got a call the other day that logans liver numbers are high all of a sudden. so they took some blood to look at it to se if he can be relisted right away for a transplant. they said that if he has too many antibodies in the blood that he might not be able to be listed. if the results are that then they might be able to get around it somehow but they wont know yet.

If he cant be relisted then we will lose him at some point. he is only on tpn. he cant have any formula through his g tube and has never had anything by mouth. i guess at any time losing him will be just as difficult then any other time.

#132

My name is Chrystal. My son Zachary was born with HD. He has had 11 surgeries, and is now 5 years old. He is doing so well right now that I thought I would love to talk to other parents who have HD kids and maybe encourage them to hang in there. I had such a hard time when he was smaller, and I believe most of the fear was of the unknown. I hope to help others deal with those fears.

#133

Hi I am Melissa from CT and my son Michael was born with short seg. HD 12/12/05. He has had 3 cases of entrocolitis, 2 in the last 3 months.

#134

Hi everyone! I am a 29 mom of a 15 week old baby girl with HD. Lily was born five weeks early and had poor eating and stooling. Within three days both stopped and we spent two weeks on three different hospitals but the last one found the disease with a biopsy and performed surgery the next day when she was two weeks old. Since then she was admitted with entrocolitis at 8 weeks old for a week and we have performed dilations and washouts at home daily since then. She just had her first of three surgeries to break though the scar tissue. Apparently she is in the 20 percent who have extreme scar tissue due to poor blood circulation at the surgery site. So from my little experience it seems like a moving target…

#135

Hi all! I am a mom that has lost a child to HD… I guess I’m just looking for other families that have dealt with this horrible disease, and to see if any have had more children and if they were healthy… It’s only been 3 months since my son passed away, and i’m not looking for pity, I’m looking for hope… Hope that maybe my husband and I might possibly have a healthy child if we try again…

#136

Hello my name is Jo i am 27 i live in edinburgh, i have 3 daughters 2 of which have hirschsprung’s disease my oldest daughter Holly who is 7 tomorrow and my youngest daughter Brooke who is 16months. My middle daughter Katie is 4 with no HD. Would love to chat to anyone who may have advice or tips with regards to hirschsprung’s disease. I am also a member on the Hirschsprung’s disease group with yahoo and have found the parents and careers on the sire great as i have found there advice and stories very helpful with regards to the situation i am in with my own daughters. It is just so good to speak with parents who understand what and everyday is like when u have children with this condition. Feel free to ask any questions

Thanks for you time and patience

Jo (Edinburgh, Scotland)

#137
Hello,
My name is Svetlana and I am from Bulgaria.
I am the mom of a 5 year old boy with Hirschsprung's.
He has problems with excoriation of his bottom, and poos 5-6 times a day.
Please tell us what this program is "bowel management"!
What exactly is it? In my country no one can help this problem?
How are you, how аrе your childrens doing?
I hope to write to share experiences.
Greetings and thanks
Svetlana

#138

Hi all, My name is Nicole Murphy and I can relate to what you are all going through! My son was born in 2003 with HD and after many frustrating bouts with enterocolitis, he had to have his pull-through redone at 5 months. Fed up with not knowing what to do, I reasearched the disease and ended up writing a book on the topic. I thought I would share what I had learned with other parents. It is finally published and is called Hirschsprung’s Disease - Solving the Puzzle. I think you will find it invaluable when caring for your child. Thanks for listening! Nicole

#139

Caleb had total colonic HD. His doctors originally thought he just had jaundice so that was what they focused on… He was readmitted to the hospital when he was 5 days old, then transported by ambulance the next day to Bethesda National Naval Medical Center. That night they did all sorts of tests and x-rays and ultrasounds. The following morning they diagnosed him. That afternoon he had his first surgery for the ostomy. He was already so sick by this point that the surgery caused more damage… His intestines swelled up that the next morning they needed to reopen his incision and pull out his intestines to let the swelling go down. The few days that followed he became sicker and sicker… After the first surgery they put him on the oscilator like your son… He couldn’t even breathe on his own… I can’t think of the name of the infections he had, but his blood was highly acidic and his kidneys and liver started to fail! He didn’t pee at all the last 3 days of his life. On November 11th, Caleb’s doctors sat my husband and I down and said that there was nothing more they can do for him, and that he is going to keep getting worse and continue to suffer! His body was so puffy and swollen from all the fluids going into him that no matter how much pain medication they gave him, it didn’t work! That night, Caleb died peacefully in my arms… He was only 11 days old! I’m sure this is all scattered and all, but if you have any other questions feel free to ask!

Originally my husband and I agreed to not have any more children, but I so badly want a sibling for our oldest son! Caleb was our second child, and it was so hard to explain to our 3 year old about everything that happened!

#140

I am so sorry to hear about your loss. I guess the only hope I can offer you is that many children with HD go on to lead normal healthy lives.

Even if you do have a another child with HD it is possible they would have their surgery and be fine. Yes, in some cases, parents have more than one HD baby.

Shortly after my son’s diagnosis I said I’d never have any more biological children but I have since changed my mind. There is a research study by John’s Hopkins that gives detailed information of your chances of having another HD baby.

I’ll try to find the link and pass it along. If you ever feel like sharing I’d like to hear about the circumstances leading to the loss of your child. I can’t even imagine how you must feel. I pray that God blesses you with peace.

Jo

#141

I am wondering what US or SS means. Could someone clarify that???
My surgeon was very vague with details other than saying he will lead a very normal life (which so far is not what I am seeing between the 40 poops a day and the intense diaper rash).
Thanks!

#142

Hi Janel

Thank you for you reply I would like to see your videos and picture before it happens as the doctors do make it sound scary I don’t know what they are like where you come from but in Cardiff Wales they don’t explain in what I call plain english. I have looked it up on net and read quite a bit but haven’t seen any pictures. Thank the lord for this website will update you after his op.

MAUREEN

#143

MY dd is 13 months an in the process of testing for HD she has a few symptoms like severe constipation ( every 14 days) and not eating much food. She should have a biopsy soon. I will be glad to get her healthy and pooping again.

#144

hi I am grandmother to Conor 14mths in hospital with HD having colostomy on thursday I am from uk and was looking for support on the net when I came across this website and am glad there are so many kind people who can answer a lot of questions. I have learnt a lot reading the forums tonight and will come back when I need advice. Maureen