Hirschsprung's Disease

Raul

Thank you very much for getting in touch, Hirschsprung's Disease has now been added.   It will look a bit empty until we can research the condition and add some content, but please do feel free to add anything that you have about the condition.

The Hirshsprung's Disease forum can be found here

The Hirschsprung's Disease Information centre page can be found here

It has also been added as a condition in the recommend a specialist section, the areas of interest section for all those that register on the site and in the videos section.

If there is anything else you'd like to see added just let us know.

Thanks again

parentsown.co.uk

Hi Raul,

Were you at the Great Ormond Street Gastro Study Day yesterday?

Kitty

Hi Kitty

I was at the Study Day yesterday which I thought was a very good event and very kind of the staff to give up their time to help the parents.

And you?

Raul

Thank you so much. Hopefully other parents will find this useful too.

Hi

Yes i was there aswell and they mentioned Hirschsprungs which is why I wondered if you might have been there too. It sounds a very difficult illness. How old is your child? Does he or she seea  consultant at GOSH gastro dept?

I found it so helpful too and learnt a lot - although in some ways I had lots more questions after than I did before I went.

Kitty

Hi Kitty

My daughter is almost 4 years old.

Soon after birth she had an ileostomy.

At 9 months she had a pull through procedure to connect the functioning part of her bowel to her anus.

When she was 1 year and 3 months she had her ileostomy reversed.

However since then she has not obtained full control of her bowel movements and she normally has diarrhea.

She is now fortunatley under the care of Dr Nikhil Thapar at GOSH.

Does your child have a gastro problem?

Raul

Hi Raul

Sounds like she, and you, have been through a lot in 4 years. Sorry to hear she is still having problems with her bowel.  Dr Thapar seems fantastic, I really enjoyed hearing him speak.

Yes i have 2 boys with gut problems. They are now 7 and 4 (almost 5) and my 4 year old is just starting school which is a bit stressful. My boys are thought to have EGID (eosinophilic disorders) so are on medicines and a special diet. My eldest manages fairly well and only has relatively mild flare ups now but my youngest son is very hit and miss. Over the summer months he seems to stabilise but during Autumn he seems to go back to daily and nightly stomach pain, joint pain, diarrhoea or constipation or both, passing mucus etc.  Illnesses make it worse so I think thats why this time of year kicks it all off. He had a particular difficult winter last year so i'm nervous what this one will bring. He also has feeding problems related to his pain so its a struggle to get him to eat. He drinks Neocate LCP to supplement his food intake.

Does your daughter need a special diet or medication to help with her bowels?

Did you see on Cath's blog that she was sat next to you at the study day?

Hope you have a good week,

Kitty

Hi Kitty

I am sorry to hear that your two boys have EGID, it sounds like a difficult condition to treat with the symptoms being so varied.

Natalie was on SMA High Energy until 2 years old and is now on Peptamen Junior (500ml a day).  We also encourage her to eat as much as possible but her apetite varies. When she is ill her apetite goes and she loses quite a lot of weight. Fortunately she does not have any specific allergies. We tend to give her a white diet (rice, pasta, white meats and fish) to slow down her digestion which has worked well for us.

We have also used immodium (lomperamide) to slow her stomach down, but this sometimes causes her to have constipation. Indeed we once needed to have impacted faeces surgically removed from her colon.

Take care,

Raul

Hiya

My eldest was on Peptamen Junior for a while too. It really helped him gain weight. Now both my boys have Neocate.  We have the same appetite problems, but they just don't want to eat when they arent' feeling great. My youngest has a really small range of foods he'll eat and I do worry about it.

So sorry to hear she needed surgery for impaction, what a worry for you all.

Do you find doctors and schools locally are supportive? We have found that a lof of families with gut problems don't feel they get enough support and we've certainly struggled at times.

Kitty

Hi Kitty

Our friends are very sympathetic but only other parents who are going through similar circumstances truly understand, hence I am on this site!

Doctors and consultants seem to be focussed on treatment (surgery, medicine and diet), but it is with how to provide the best care at home that other parents can help by sharing their experiences and suggestions.

I sometimes forget how rare Hirschsprungs is.  We have even seen gastro consultants in A&E who have never seen a case before.

Raul

Hi Raul

I really agree about the difficult bit is how best to give care at home and deal with schools and daily obsticles. One of the biggest problems we've had is that the boys look 'normal' and we have had problems getting people to listen to us e.g schools. You often can't 'see' gut problems and 'see' their discomfort. Also, getting support with their feeding problems has been, and still is, a battle.  there aren't any charities or organisations that seem to help with this side of things so we hope parentsown can.

I have to say I hadn't heard of Hirschsprungs and have done a bit of a read up on it since you posted.... but then i hadn't hear of eosinophilic disorders till my kids were diagnosed with it either! Just shows how little people know about gut disorders and it would be great if we can increase awareness!  Hopefully people will read your blog and learn more about the illness.

its great you have supportive friends, what a difference that can make.

Where abouts in the country are your family? We are in Berkshire.

Kitty

Hi Raul

I am sorry to hear of the issues your daughter has with HD, it sounds similar to our own experience, especially as my son is the same age. I don't know if it would help you to read about our experience but have a look at http://chrisrandon.com/Hirschsprungs.php for all our ups and downs!

I think it is really the fact that every HD case is unique and there is no standard approach to treatment that makes things so difficult. Because the gut is so important to everday life the condition can come to dominate everything at times. However, we have tried our hardest to keep life as normal as possible for Alan and for me this is the the key to staying (relatively) sane.

We have some difficult decisions to make at the moment and whilst we are very pleased with the care Alan gets from his consultant surgeon, I was interested to see that your daughter is cared for by a gastroenterologist. We are looking for a second opinion and wondered if you might be able to tell me a bit about how the consultant approaches things and what his preferred treatments are. I hope you don't mind me asking.

Best wishes to you and your daughter,

Katrina

Hi Katrina

I just read your story on your website. You have been through so much! Your little boy sounds very brave.

When is your baby due?

Kitty

Hi Kitty

thanks for your reply and for reading our story. We wrote it really to make sense of what we had been through and decided to share it in case it could help others. Yes, Alan is amazing, it never fails to astound me how well he copes with things. My baby is due any day now, so we are looking forward to new adventures!

My best wishes to you and your family,

Katrina

Hiya

How exciting for you all! I am sure Alan will make a lovely big brother. 

I think blogging can help - i blog about our experiences as an outlet but also in the hope that someone else will read it and feel they aren't on their own and so they'll know that others are going through similar experiences.

I think gut problems are quite unique, there is a lack of research and support for families. It took us 4 years to get a proper diagnosis and in that time we had lots of incorrect diagnoses and a lot of heartache. I feel the delay in getting a diagnosis is the reason why they both developed food aversions - being in pain, vomiting etc for all those years would be enough to put anyone off eating.  The difficulty now is that we are struggling to get help for the food aversion for our youngest son.

Sorry I'm rambing and have gone from saying something positive to being negative!

Ok back to being positive - good luck with baby no.2!

Kxxx

Hi Katrina

It was fascinating to read your history of Alan's ups and downs and repeated bouts of enterocolitis.

Natalie has suffered from constant diarrhea but we have to be careful when giving her loperamide because this can quickly block her up, it is a very fine balance between the two.  She also has little control over her bowel movements, although she has managed to do three poos on the loo. At the moment she is only pooing during the night which causes her a lot of distress.

I was interested to read that Alan has been seen by a clinical psychologist.  We thought Natalie was too young for this, but maybe we should give this a try.  The whole business of going to the loo may be associated with pain so this could help.

Natalie is currently on a white food diet with Peptamen Junior milk supplement and vitamins, how about Alan? Our objective is to slow her gut down due to malabsorption.

Natalie is being seen by Nikhil Thapar at GOS.  He has not been able to provide a miracle cure, because the stomach is incredubly complicated and there is only limited knowledge about how it works, but it is at least comforting because none of Natalie's symptoms surprise him, because he has seen so many cases before.

Best wishes,

Raul