Desperate to help my diagnosed baby sister

[JuJuMesleh]

Hello everyone,

I'm seeking information regarding my 8 year old sister. She was diagnosed last year with Crohns disease. She was placed on 6mp and steroids, significantly gained weight only to find that 6 months later, she developed Ulcers and was only getting worse with the medication she was on. The doctors suggested Remicade, which we refused due to the cancer risks it provided and the procedure itself was a bit drastic. It was decided to take her back to Michigan, our hometown, to legally treat her with medical marijuana. She has been doing better than we imagined since, which was 3-4 months ago.

This past week, she has just been diagnosed with asthma, and bronchitis. My poor baby is just going through so much and I'm at a loss. I've assisted in guiding her up until this point, I just don't know what to do. I want to make her better. If anybody has any suggestions or is experienced, please share with me. I'm seeking any and all information possible. I greatly appreciate it in advance.

She has been in dance school, used to love doing gymnastics, she loves to read and play, and nowadays, she can't handle full days in school, she hasn't been able to attend her dance classes consistently, but she stays on top of her reading. I worry for her future despite trying to be the best influence I can be to her. She's just not the same and I can't help but notice and stay worried for her.

She tells me I'm her role model but at this point, I feel so helpless. I appreciate any help.....

 

[my little penguin]

I can say the risk of cancer from remicade is very very low.

by the numbers

risk of dying
in a car 1 in 250.
risk of drowning 1 in 1000

risk of getting t-call lymphoma ( cancer) without any drugs-just average person on the street 2 in 10,000.

risk of t-cell lymphoma(cancer) taking remicade and 6-mp together
4 in 10,000.

It is all about risks.
Remicade really helped my son.
yes its drastic but so is under-treated crohn's.

I can say it help him feel normal again and do all the things small kids should be doing.

good luck

 

[If*]

Hello, take a look at EN. It might be a possibility for her. You can find some info here; http://www.crohnsforum.com/forumdisplay.php?f=161

Prayers and peace.

 

[David]

Hi there and welcome to the community. I'm so sorry to hear about your little sister. That's heartbreaking and my prayers go out to you and your entire family.

In addition to the medical marijuana, what medications is she on?

How are you administering the medical marijuana? Smoke? Edibles? Vaporizing?

All my best to you and your sister.

 

[Devynnsmom]

I'm so sorry to hear your sister is not well. I don't know enough about Remicade, but there are a few parents on here with children who are on it. (((hugs))) its so hard watching these kids go through IBD.

 

[Sascot]

I agree that it's scary thinking about these medications, but sometimes we have to just hope that the benefits outweigh the side effects.
If you are still really reluctant to go onto the stronger meds, the EN (enteral nutrition) is a good way to let the body get a rest and help heal the ulcers. My son did 8 weeks of the liquid diet (Modulen) through a NG tube in his nose as he hated the taste. However some children are happy enough to drink it.
After 8 weeks all his stomach pain has disappeared and he had alot more energy. I may be completely wrong, but I would think the medical marijuana would have just been managing symptoms, not actually healing or preventing them. It took me about 8 months of soul searching to eventually let my son have the 6mp and only after he had to have surgery for a huge abscess caused by a fistula. I do wonder if I had started meds sooner, if that could have been avoided.
Good luck, hope she feels better soon.

 

[Emma A]

hey, sorry to hear your little sis is not feeling to good, i was diagnosed with Crohns last year Feb 2012 and i was just 23 years old, and i know its a horrible thing to go through especially when its your younger sister and this probably the only thing you cant help her with or protect her from.
just a little fyi, i went docs last week and i was having a bad flare up with crohns and the first thing he wanted to do was put me on steroids, im on pentasa 4000mg a day and refused, i know its basically making you feel better but your still gonna be in pain when you stop taking them. i went to a dietician in Dublin straight after because i was so confused sick and honestly in a lot of pain, she suggested a FODMAP Diet, its not a diet to lose weight or anything, its basically to eliminate all dairy & wheat products and going with gluten and dairy free products. im not gonna lie im on it a week and its really making me feel better, of course ill keep taking pentasa but my cramps are going away everyday, ive so much energy and i can actually sleep again and not worrying about how im going to feel tomorrow every time i go to bed or will my clothes fit with my tummy bloating as if there was an elephant inside me! i am a wedding co ordinator and can work full time, drive my cars, and can still dance(not to good at the dancing though but that was before crohns). i really would suggest a different diet, i have a huge list i can send on to you which will explain everything about it. look its worth a try, you said she not well so what have you to lose.

i really hope she feels better and hope you are too, my boyfriend and family have been affected by my crohns and having a great family support around me really helped me feel better, sometimes a hug really works too

Emma

 

[CrohnsKidMom]

Welcome to the forum! I'm so sorry to hear about your little sister. My 8 yr old was dx'd in March and was on Prednisone, and now methotrexate for maintenance. Sorry, I don't have experience with Remicade, but I know there are many on this forum who have. Hang in there. I hope your sister is feeling much better soon.

 

[Dutch941]

Welcome JUJU ....so sorry to hear about your sister. I too was facing the decision to put my son on remicade. I know how scary it can be....I was nervous enough approving 6 MP. We were fortunately able to avoid Remicade, (for now) but I agree with above posters that you should thoroughly investigate it as an option before letting a potential minor risk get in the way of something that may alleviate her troubles. Now that my family is in the UC club...I am learning I already know people who suffer from the same issues. Some are already on Remicade and swear by it.
Best of luck with your decisions....I so hope you get her dancing again and soon!
You have stumbled upon a sight filled with people who have been through this at every level. I strongly believe I would have had a mental breakdown if not for the guidance and support of the people here.
Don