In Memory of Molly Pearce-Eaker

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In Memory of Molly Pearce-Eaker photo 167996_1832173002330_2067786_n_zpsb71e934b.jpgFrans Candles

It is with a heavy heart that I write this post. Molly was a Hirschprung’s Disease sufferer, just like Noo, who suffered from numerous organ failures in the last few months of her short life.

Molly grew her angel wings at 1:11am on Tuesday. She is now pain free, scar free, central line free, virus free , medication free and free of this horrible disease. Our thoughts and prayers are with her family and friends during this difficult time.

Rest in Peace Molly ♄


Noo’s Appointment with Prof Peter Beale

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This morning Noo had his followup appointment with Prof Peter Beale. We discussed his ER visit. It was a productive appointment. He said to not do the daily washouts and the ER doctor had suggested.

He is concerned that Noo is still showing signs of enterocolitis at his age (he is 10.5), he should have outgrown that by now.

We have decided on the following treatment for the next three weeks:
1. Imodium tablets, 1 tablet 3 times a day. This is to help firm up his stools.
2. Nexium, 1 sachet/tablet in the mornings. This is to eliminate the acidity in his stools.
3. Flagyl antibiotic. 200mg tablet in the mornings (after meal) for the next 3 weeks to fight off the enterocolitis infection.

I need to monitor his stools according to the Bristol Stool chart (see bottom of page). Hopefully they firm up.

He also said that we need to expect that he will have bowel obstructions from time to time. He seemed happy that they don’t occur often and that this had been his first obstruction in a very long time. I can’t remember the last time we took him to the ER due to an obstruction, it was before Koko was born. That is definitely a good sign.

We have another appointment with Prof Peter Beale on 7 November. I’ll update again after that appointment.

I am very happy that he does not need to go into theatre again for a dilatation and polyp removal.


Read about our Hirschsprungs disease journey HERE

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Trip to the ER thanks to Hirschprung’s Disease

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On Tuesday, 25 Sept, Noo spent most of the day complaining about a sever stomach ache that got progressively worse during the day. He was unable to pass any gas or stool and none of the usualy remedies helped. I eventually called his surgeon, Professor Peter Beale, to find out what we should do. He suggested we go to Morningside Mediclinic emergency room and have him looked at.

This picture was taken while we were waiting for Dr Shembe for his consultation. He was in allot of pain, but trying to be brave. The pain was so bad that it hurt to sit. It was awful watching him go through it.

He had a blockage at the end of the small intestine where it was connected to the pouch Prof “built” for him when he had his pull through operation 9.5 years ago. His sphincter was also constricted. The x-rays showed that he had a gas bubble the size of my fist in the upper left side, just below the rib cage which was causing the intense pain because it couldn’t move down. Fortunately the washout (ie enema) was successful and we were discharged 5.5 hours after arriving at the hospital. We got home just after 2am. He has had no further discomfort or pain since 🙂

After the washout. The relief on his face is evident.

The ER was extremely busy that night. There were 2 heart attack victims, one as young as 14 and an old man who was gravely ill. It took them quite a while to discharge Noo after he had his washout. Here are a few photos of us waiting to go home.

Our cubicle, we were incredibly bored by 1am, LOL

Turning round and round on the little stool next to the bed. I was surprised that he didn’t unscrew it, LOL

At the suggestion of the ER doctor, we started doing daily washouts. He screams every time saying that it burns him, so we have stopped them until we see Prof Beale. We have an appointment on 10 October, we are going to discuss treatment and possible surgery. I will post an update as soon as I can.

This diagram was recently brought to my attention by a fellow HD mother. I had never heard of this chart before and after having a good look at it, I realised that Noo typically has type 7 stools, with the occasional type 6. I am going to discuss this with Prof Beale when we see him on the 10th.



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Learn more about Hirschprungs Disease HERE

Medical research project developing a new treatment for Hirschsprung’s disease

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This is fantastic news for sufferers of Hirschprungs Disease and their offspring and future treatment. Noo won’t be eligible for this treatment, however, his children may be.

Researcher: Richard Lindley, University of Liverpool

Fellowship: CORE/Royal College of Surgeons One Year Research Award

Grant Total: ÂŁ40,140 – Completed

This research is aimed at developing a new treatment for Hirschsprung’s disease. The researcher team planned to grow new nerve cells from the bowel of children with Hirschsprung’s disease and transplant them back into the child to improve the outcome of surgery.

Final Report

In Hirschsprung’s disease children are born with missing nerve cells from the final part of the bowel. This means that the bowel does not function properly and without surgery the condition can be life-threatening. Although it can be treated with surgery, the long-term results are often disappointing and 1 in 5 children with Hirschsprung’s disease will suffer from severe incontinence or need a colostomy. To improve this outcome, the research team intended to grow new nerve cells from the bowel of children with Hirschsprung’s disease and discover if transplanting them back into the child would improve the outcome of surgery.

The research showed that it is possible to isolate cells (called progenitor cells) which can then be grown in the laboratory. They also demonstrated that the cells are capable of forming new nerve cells (neurons) and the cells which support them, called glial cells. The progenitor cells are grown as collections of cells called neurospheres, which contain both the progenitor cells and also neurons and glia.
These progenitor cells can be found in the bowel of normal children and also in children with Hirschsprung’s disease.
The research team then showed, using animal models, that it is possible to transplant the neurospheres, and after transplantation neurons and glia move out of the neurosphere and produce a new network of nerves.

In order to investigate whether the transplanted nerve cells have an effect on the contractions of the bowel, the research team developed a system that uses a video camera and computer program to analyse the movement of the bowel. Initial results from these experiments suggest that the transplanted bowel behaves in a similar fashion to bowel that has developed normally.

It is hoped that eventually, this work will result in a treatment for Hirschspung’s disease based on transplantation of these progenitor cells.


Specialist Appointment Update

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We had a very good chat to his surgeon and we discovered that Noo has entercolitis again. Its a sever viral infection in the lining of the intestine. He has been put on Flagyl antibiotics for the next 30 days as well as Imodium syrup to firm up his chronic watery stool (sorry TMI) due to the fact that he had a total collectomy (they removed his entire colon) when he was 19 days old. The doctor says that the incontinence is most probably caused by the entercolitis and that the Flagyl should clear it up. We are due to go back on July 8th.

Regarding the cecostomy, Noo isn’t a suitable candidate because he has no colon. I’m glad I chatted to him about it though. At least I know we are doing everything possible to give Noo the quality of life he deserves.

Thank you to everyone for all your thoughts and prayers today.

Specialist Appointment

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Noo has an appointment with his specialist/surgeon on Wednesday next week. I’m going to discuss the possibility of Noo having a cecostomy put in to help eradicate, or at least minimize, his incontenance. I’m not looking forward to this appointment at all, Noo is terrified of this man as he has to have an internal (anal exam) every time we are there 🙁 Its a very painful experience for him. I won’t be telling him about this appointment until we leave the house that afternoon. No point in traumatizing the poor child until the last possible moment.

Please keep us in your thoughts and prayers