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[elliesmum]

Hi,

Thought I would introduce myself

My name is Donna and I am 31. I am a mum of 3 (2 girls and a boy)

In september 2012, my then 7 year old daughter became very poorly. She was having diarrhoea 12 times a day. I took her to A&E and they sent her home. 2 days later I took her to the GP, they said virus, a few days later I took her back to the GP who did bloods and a stool sample. The following day she wasn't getting any better so I took her to a different hospital, and the paediatrician refused to see her as she was waiting for test results from the GP that she had done the day before. We came home, and I was made to feel I was wasting everyones time, but I just knew this wasn't a virus.

My little girl collapsed, she was rushed to the a&e of the first hospital. The triage nurse asked me had i given her any paracetamol. I hadn't and told her no, she asked me why had i not, in a way that made me think that, had I have done she would be fine. I saw the doctor in the A&E and they admitted her, she had dehydration. She had lost almost a stone in 2 weeks. She was put on IV fluids, and constantly had bloods taken. They showed something was going on but it wasn't infection and it wasn't bacterial. A week later she was transferred by ambulance to the children's hospital.

Three days later she was taken into theatre and when I went to recovery to bring her back to the ward, I was greeted by a hysterical little girl complete with NG Tube. The consultant came out complete with photographs and told me our daughter had 'Severe Crohns Disease' and in one magnified area she had 15 ulcers just there. She had it from her mouth to her bottom.

She was put on the modulen feed, but a week or so later, she was no better, so they removed the tube, stopped the feed and started her on prednisolone. Result! ..well, we thought it was. Yes she gained weight, but her symptoms stopped rapidly. She was on a high dose for a month, then they reduced the dose down slowly. As soon as they did she was in flare up. The consultant said she had become steroid dependent and she had to be weaned off as safely as possible as quickly as possible, and she was unable to have them again.

She then started Infliximab, 0, 2, 4 then 8 weeks. Trouble was, before the 8 weeks she was in flare up, so this has now been brought forward to 4 weeks.

She had infliximab and 2 days later was in agony. We saw the consultant and he has put her on modulen via ng tube again.

So as it stands, she is on :-

Azathioprine (daily)
Omeprazole (daily)
Modulen (daily via ng tube)
Infliximab (4 weekly)

BUT over the past few weeks she has become increasingly pained and in now she has the green, mucous diaorrhoae.

I don't know what to do. Its breaking my heart to see her like this :'(

She is 8 years old, on Friday she turns 9.

I know Crohn's is different for everyone, but has anyone had something similar to this, and if so, what helped? 14 months she hasn't been well.

I am praying that in her lifetime at least, there will be a cure for this awful disease

 

[Holly95]

Hi elliesmum, I'm so sorry you and your little girl are having to go through this, it is absolutely terrible and I can't begin to imagine how you and her and the rest of the family are feeling right now with the severity of everything.

I have just been weaned off Prednisone and all my symptoms have come back, but I am only on Pentasa, and at 18 I am struggling to come to terms with everything that is going on in my own case, but reading your post almost bought me to tears, I have a 9yo sister, and can't imagine what would happen if she were to be having the same problems as your daughter.
Unfortunately since I am only extremely new to this disease myself I can't offer any help to you or your daughter, I sincerely hope that you find a way to manage the severity of her Crohns disease, and that she is able to find a medication regime that leaves her comfortable and able to function as a nearly 9yo should.

When do you next see the consultant who deals with your daughter? Since she is in so much pain with the green mucousy Diarrhea, I would call him and arrange another appointment ASAP.

I really wish I could offer some advice for you and your little girl, but I can't, though I will say this from child-to-mother point of view.
Even though times are so hard for you both right now and I know it is breaking your heart as a mother to see your daughter like this, please don't forget about yourself. Take care of yourself just as much as you take care of your daughter, otherwise you may end up the same as my mum has at the moment, my mum has been so stressed not only with my Crohns but with other bad issues surrounding our family, that she has become extremely stressed and has been diagnosed with chronic fatigue syndrome, she has become very sour towards her own family, me included, and has become somewhat of a raging beast (for lack of a more polite term). So please find some time to relax, I know it is hard, but even if it is a 10 minute read of a book or a nice peaceful shower, please take care of yourself also.

 

[my little penguin]

How long has she been on remicade?
I know for some it takes a while (3-4 infusions).
DS had to have a higher dose every 6 weeks at age 8.
It took about 8 weeks to see an improvement .
Which was over a year from dx .

 

[kimmidwife]

Donna,
Welcome to our forum. I am sorry you had to find us but glad you did. I am sending lots of hugs to you and your daughter. Crohn's is not easy and each child seems to experience it differently. We had a very rough time with the meds as well. My daughter is currently on something called low dose naltrexone which has helped her greatly. It is an alternative use for the medication so a lot of doctors won't prescribe it but it is something to look into.
As my little penguin said sometimes remicade takes time to kick in. Hope things turn around quickly for her!

 

[polly13]

Hi and welcome I am so sorry your little girl is so unwell. For us the infliximab gave some relief but once we moved t 8 weeks symptoms were back at the end of about 3-4 weeks, so we went to 4 weekly but for Lucy infliximab didn't work long term but while it worked it worked well.
Lucy is almost 3 years post diagnosis at this stage and it is difficult when they are trying to get the meds right, Lucy is now on humira and methotrexate and things are looking good. Hang in there, something will work. Hugs

 

[CrohnsKidMom]

Welcome to the forum, elliesmum, but I'm sorry for all you've been through. My son was dx'd last March at the age of 8. He was put on Prednisone, which was supposed to be for 3 months, including the taper. It ended up being a total of 5 months, as he was was intolerant to the Imuran he was put on for maintenance and we had to switch to Methotrexate injections. The GI didn't want to stop the Prednisone until we had a maintenance med working. He is doing well now. I hope you see some good things happen in you daughter's condition soon. Take care of you and your little one.

 

[Farmwife]

Hi and welcome.
I'm so sorry your girl is suffering so. Have they checked her for C. diff? If she's had a stool test lately I'm sure they've checked her.
Were you given proper instruction on how to give the PPI (omep.)? I asked because some docs never tell people when or how to take them.
Sorry not much to add.

HUGS

 

[Malgrave]

Hi and welcome to the forum! I am so sorry for your daughter's suffering.
Sometimes it takes time to find a medicine that helps. In my son's case we still haven't found it. He has been sick for 4.5 years now. Rectal bleeding for 2 years now . But luckily you have found the right place, you will find a lot of useful information and advice here.

My son was on Modulen (EEN) for 6 weeks but it didn't help at all. The problem of Modulen is that it contains casein (milk protein) and the current doctors of my son don't recommend Modulen because of that. Maybe you could ask Neocate Junior which is amino acid based. It hasn't brought remission for my son but at least he is tolerating it and he grows again!

 

[Sascot]

Sorry to hear about your daughter. My son did 8 weeks of Modulen which helped, but he was only mild disease. I really hope the find something to help her soon.

 

[Brian'sMom]

Hi, Welcome to the forum...and I'm so sorry! I was going to ask if they checked for C diff also. Saw that Farmwife already asked. C Diff; (Clostridium difficile is actual name) can make you feel pretty bad.