Help needed

[dizzymissdee]

Hi

My 8 year old daughter was diagnosed with severe crohns disease in september last year.

She currently takes azathioprine and prednisolone, but is starting infliximab infusion tomorrow.

Some days her energy is so low she constantly coplains of being tired and having no energy to walk, so much so, I have to sometimes push her round in a wheelchair.

She looks dreadful.

Is this a common thing for people suffering from Crohns disease? Can it affect her joints/bones in the way she describes?

She had a colonoscopy and endoscopy, and it was abandoned due to safety reasons, as he said it was so bad she was bleeding immediately on contact and she could have died if he had gone further. he said she has it all throught her body from her mouth to anus, something i didn't even know was possible. He said removing her colon is not an option becuase she still has it in her stomach etc. He also notes she has deep longitudal ulcers.

Any help? I would hate to think i am missing something else that could be going on?

Thanks In Advance

Donna

 

[Tesscorm]

Donna, I'm so sorry to hear about the problems your daughter is having. There's nothing harder, as a parent, to see their child in pain and not be able to take it away!

There are many kids here on infliximab and it has done wonders for them - I hope your daughter has the same positive reaction!!

Fatigue and joint pain are very often present when crohns is active. Hopefully, both will subside once her crohns inflammation is under control.

As malabsorption is also very common with crohns, your daughter may be low in vitamins/minerals. Has her doctor checked for these? Please have a look through the Diet, Supplements subforum, as well, there's a current thread in this section (Parents of kids with IBD) entitled Multi-vitamins that is discussing vitamin/mineral deficiencies. There is also info in the Forum Wiki. Having a deficiency could very well be contributing to her fatigue.

Also, look through the info for Enteral Nutrition (under the treatment section and there is another thread under the parents section, under diets called Kids on EN) - Enteral Nutrition as a supplement can provide your daughter with the nutrition she needs and the formulas are usually in an easily digestible form.

I'm glad you've found this forum... you'll find lots of info, advice and support here!! I'm sure there will be other parents along to offer their advice and welcome you!

Good luck at the infusion tomorrow!

:ghug:

 

[Jmrogers4]

Welcome to the forum dizzymissdee, sorry you had to find us but there is a fantastic group of parents who have saved my sanity dealing with everything having a child with IBD entails.
Tesscorm gave you some great information and I can only echo it. We have not had any experience with infliximab but I know there has been some great experiences with it. My sons CD is also from top to bottom. We are currently doing EN supplements to help with growth and weight gain, and are seeing some great results after only a week so it is definitely something to look into.
Hope the infliximab does the trick and she gets her energy back and starts feeling better.

 

[Jenn]

Welcome and sorry to hear about your daughter. That sounds like complications of IBD to me and I hope the infliximab brings her round. My son responded within the first few days. Keep us posted!

 

[Sascot]

Hi and welcome to the forum. So sorry to hear how bad your daughter is. I agree that Infliximab seems to be one of the most effective treatments for more severe disease from what I've read. I hope it starts to work quickly for her.
I would also encourage the use of EN to help give the medicines the best chance of healing. My son did the 8 weeks exclusive EN (Modulen) via an NG tube since he couldn't stand the taste of it. It really does work well and can be done at the same time as all her other medications.
Good luck with the latest treatment.

 

[Devynnsmom]

I'm so sorry to hear your daughter is so unwell ((((hugs))))) My daughter is 11 and yes, she has had a LOT of joint pain, and feeling like she has no energy. I bought a wheel chair because she had such a hard time walking at times. We have not had to use it once since I bought it! We had borrowed one before that, and it was so gross I had to cover it up before I would sit her in it.
I hope your doctors can figure out a way to make your daughter feel better real soon.

 

[Niks]

Hi

So sorry to hear that your little girl is so poorly.

Am glad you have a diagnosis now and hopefully she can get the right medication to get her on track to feeling much better.

You have come to the right place!! There are some amazing, caring and very knowlegdable people on here to support you. You are not alone xx

:ghug::ghug::ghug::ghug::ghug:

 

[my little penguin]

Hugs
Ds was dx at age 7 with disease from mouth to anus.
We tried 6-mp and mtx -it wasn't enough.
He started remicade in aug if last year. It took three infusions.
Then a switch went off.
Joint pain gone
Fatigue gone
Stomach pain nausea vomting gone
Blood /rectal pain all gone
He no longer naps at school
He is back in sports.
Outside of infusions you would not know he has crohn's most days.

Hope it works well for you

 

[Farmwife]

Hi and welcome.
My 4 years old worst symptoms are tiredness and joint pains.
Sorry no real advice just support.

HUGS

 

[jmckinley]

So sorry that your daughter is having such a hard time. I really hope the remicade works wonders for her.

My son's Crohns was mouth to anus also at initial DX. I, like you, had no idea that was possible. He also has occasional joint pain and is pale, and when ill, has dark circles under his eyes. I don't think our kids can take too many vitamins. They absorb so little. Do try the EN. It lets the gut rest so it can heal, provides calories and vitamins that they can absorb. Also consider a good multivitamin. I add extra B vitamins to Ryan's day for the tiredness and pale skin color.

Good luck tomorrow with the infusion. Keep us posted.

 

[CarolinAlaska]

I'm sorry your little one is so sick. I hope the infusion goes well tomorrow and that she turns around quickly. Did she never respond to the prednisolone?