HealingWell
Search Close Search
☰

5 Year Old Daughter with Ulcerative Colitis - Help please?

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/15/2008 12:16 PM (GMT 0)

My 5 year old was diagnosed with what they think is Ulcerative Colitis last year. She had been ill since Nov 2006, lots of toilet visits a day with bloody stools. We had her at our GP every week as she was losing weight and was physically deterioting in front of our eyes. We still got nowhere except sent home with medication to harden her stools. We were also told that she probably had a tummy bug which may last 4 weeks.

 We took her private in Jan 07 and food intolerances were ruled out (other than her nut allergy) - dairy, wheat etc. Gradually she got worse.

On the day of her 4th Birthday she became violently ill and we rushed her to A&E. The doctors were stunned at how bad a condition she was in. She was severely dehydrated and in a bad way. Tests were done and they confirmed she had picked up rotavirus.

However, the consultant told us that he also suspected something more sinister in the background. This was after we explained the history to him.

After a blood transfusion and lots of medication (she was in hospital for 4 weeks) a barium then an endoscope was carried out and biopsies taken from her. They confirmed that they suspected UC but could not be sure as she was really badly inflamed and had to stop the procedure.

She was released on hospital and put on pred, they also put her on Aizaphripone which made her sick and when we done our own research we took her off it.

We have had her on herbal medicine from a herbalist we seen privately and also homeopathic medicine 

They done another Endoscope in Aug 07 which was a shambles as the prep medicine never worked - although we told the nurse 5 times in the morning that she had not been to the toilet 

Since Sept 07 she was been in good health until May 08 (only on Sulfasalazine) when the symptoms returned. She has been on the highest dose of pred (30mg) for 25 days and there has been no change. She got her bloods done yesterday which have shown all the indicators are high.

They have said that in their opinion and for her quality of life she now has to go on 6MP (mercapturine)

 They also want to do another Endoscope in 3 weeks.

My wife and I are worried sick about 6mp and the risks and I just wondered if anyone has any similar experiences or advice?

 

Thanks

B

Posted 7/15/2008 12:34 PM (GMT 0)
Hi and Welcome. I am so sorry your daughter is suffering so much. There is a website that is dedicated to parents of children w/ IBD
(either UC or Chrons). It is www.dragonpack.com. They may be able to better help you w/ treatment options for children. We do have
several members that have children w/ UC. Hopefully they will post as well.
Posted 7/15/2008 12:36 PM (GMT 0)
Hi Tab and thanks for your reply

Funnily enough I registered on that this morning - just waiting for an e-mail so I can post

thanks again

Barry

Posted 7/17/2008 5:11 PM (GMT 0)
I'm thinking of you guys - how awful. Good luck. And I'm glad you found us.
Posted 7/17/2008 10:47 PM (GMT 0)
Hi I'm so sorry to hear about your daughter and what's she's going through. I've been through it with my 2 yr old son. Are they doing an Endoscopy or Colonoscopy? Endo is where they go down the esophagus and colon is through the rectum there is a big difference in what they find. If she is inflammed so much from the Endo it could be Crohn's cause that can effect the esophagus. There is also blood work that they can do. My son has had an ESR and CRP drawn that can help pin point. i hope they find an answer for your poor girl

Posted 7/18/2008 2:40 PM (GMT 0)
My heart breaks for you and your daughter. One thing I wanted to write about (since I am a teacher), is that if she is going to go to school this year that you tell the teachers, nurse, staff etc. every detail about her condition. They have to let her go to the bathroom whenever she wants. I had a student with intestine problems this year and I could relate because of my recent diagnosis. Anyhow, I could always tell by the look on his face when he felt bad. I also talked to the mom frequently on the phone. So, when your daughter does go to school, keep that in mind. You may even want to talk to the principal each year and request the teacher you think would be the best suited. It's hard enough to deal with this, a good teacher can make life much better. If at times it is so bad, the school district should provide a teacher to come to your house or hospital and teach her for a while. Take Care, and don't give up! Bellski
Posted 7/18/2008 2:55 PM (GMT 0)
Hi Rocal - she has had both done twice. Next time (3 weeks) will be her third. Her most recent bloods were done on Mon, 2 inflamation markers are on the up, platlets are high and haemaglobin is low - all the usual signs.

How is your son doing just now if you dont mind me asking?
Posted 7/18/2008 3:00 PM (GMT 0)
Hi bellski - we have spoke with the teacher and the principal and they are fully aware of jennys condition. we have asked that she have a seat close to the door because when she has to go, she really has to go.

We just hope that we can get her well enough to start school. You will know yourself that those first days are important for creating relationships with other kids. Its not the school work that concerns me, she is a really bright little girl! Just want her to have the best possible start and not feel alienated

You sound like the kind of teacher that would be ideal for Jenny!
Posted 7/18/2008 7:51 PM (GMT 0)
I"m sorry to read about another child with this disease. I have two kiddos with UC, although they are both older than yours (16 & 9). My son is on Imuran (azathioprine) and my daughter is on the 6MP and I understand your concerns. I had a hard time coming to terms with giving my children these med. I cried for days. Both have been on them for about a year and have been in remission since (with prednisone initially until the aza/6mp could kick in).

It'll be great when you get approved for dragonpack as there is so much support for parents there (HW is great, too).

Again, sorry to hear of your daughter's dx!
Posted 7/18/2008 9:16 PM (GMT 0)
Hi cooktowers

  Right now he is only on Probiotics he had a horrible reaction just a couple weeks ago to the sulfasalyzine so the Dr is waiting and seeing how he does with the Probotics. Right now I feel like I'm holding my breath waiting for his next flare up. It's been 3 weeks that he's been on it and he seems to be doing well, but 2 days ago he started with the mucus in his stool and it's starting to get that sulfur smell to it. He's also been saying "tummy hurt" so I'm nervous that it's starting he get a flare up at least every 6 weeks it seems. Last one was really bad and long I never saw him that bad. I do alot of praying and alot of research to see how I can help him. I'm thankful I found this sight I don't have to many people I can talk to let alone that they understand. My mother means well but she thinks it's a quick fix with his diet, my sons father is in denial and refuses to talk about it. I have friends I talk to but they don't really understand because they look at my son and he looks happy and healthy for the most part 

Posted 7/18/2008 9:17 PM (GMT 0)
Can anyone tell me what 6mp is that I see people are on?

Posted 7/19/2008 1:49 AM (GMT 0)
Rocal,

"Mercaptopurine (also called 6-Mercaptopurine, 6-MP or its brand name Purinethol) is an immunosuppressive drug used to treat leukemia. It is also used for pediatric non-Hodgkin's lymphoma, polycythemia vera, psoriatic arthritis, and inflammatory bowel disease (such as Crohn's Disease and ulcerative colitis)."

My daughter takes it to help keep her in remission. She tolerates it very well. My son doesn't tolerate it well at all - low white counts and liver distress so he takes a similar drug called Imuran (azathioprine). Both drugs are kind of scary in that there is a chance that they can cause cancer, but my doctor said that it is uncertain if it is the drug or the autoimmune disease that makes one more vulnerable to cancer. Both drugs have been around for quite awhile.
✚ New Topic ✚ Reply