12 YO Niece Diagnosed, Treatment Not Working

[harrleequinn]

My 12 year old niece was diagnosed with pediatric Crohns 4 weeks ago. She is still not in remission and is in the hospital for her 2nd stay. She has had blood transfusions both times and low blood pressure, platelet counts, white blood cell counts. After her initial stay, the doctors gave her a bunch of meds to take, to which I don't remember their names. She still had pain, fatigue, loss of appetite and all the symptoms as before. The doctors told her she could go home and eat all the crappy food she wanted. I didn't think that this sounded like good advice as I thought bowel rest was what was needed to control the inflammation. I don't know what to ask the doctors when they come in. We are all at a loss as this is so new to all of us. Any help and suggestions are greatly welcomed.

 

[crohnsinct]

So sorry to hear about your niece and what a hard time she is having of it. My daughter is also 12 (yikes almost 13) and was dx'ed in February after being hospitalized with severe malnutrition, blood transfusions, TPN you name it. .

I honestly have never heard of anyone who was brought into remission within 4 weeks (unless by surgery) so while it is gut wrenching watching her suffer I would think it would be too soon to think remission. However, I would have hoped the meds they gave her would have brought some relief but this disease is so highly individualized it sometimes takes a while for them to find the right meds and doses etc.

Crap food...well that is half right according to our experience. Our daughter was told all white refined foods, white bread, white rice, fruit loops and frosted flakes cereal etc. Unfortuantely the healthy stuff requires the GI tract to work too hard so crap it is. That said, I would not have said all the crap you want...certainly not greasy fried garbage food!

My daughter was put on Prednisone and Remicade right away...after we weaned her off steroids it was apparent the Remicade wasn't working all the way. The doc suggested adding Methotrexate but I asked about exclusive enteral nutrition and that is what we went with. This is where the kids eat no food for at least 6 weeks and get all of their nutrition for a formula. So see you weren't that off on your bowel rest comment. They are allowed water and a few here have been allowed clear broth, noodles etc but my daughter was only allowed to chew a piece of gum a day. You can drink the formula in the form of shakes or have the formula delivered through a naso gastric tube. This trearment is the first line of defense in many countries but not usually here in the US. It is as successful at reducing inflammation as steroids and even better at mucosal healing. The extra added benefit is all the good nutrition the kids get and their added weight.

If you are interested, there are a few threads about EN. You may want to start with the Parents of Kids on EN thread here on the parents forum. There are also threads on the Treatment forum.

When you get a chance post where her disease is located and the meds tried etc and I am sure someone on here will be able to offer a lot more guidance.

Hang in there...the first few months are a blur and a lot to get used to but it does get better!

 

[Tesscorm]

I'm sorry to hear about your niece, it's heartbreaking and frustrating to watch them suffer and be helpless to help! :ymad: But, I'm glad you've found your way here; you'll find lots of informative, helpful and supportive members and parents.

I second all that Crohnsinct said above. Everyone responds differently to treatments and it can sometimes take a while to find the right med or combination.

Please do inquire about EN - it has no side effects, comparable success as steroids, provides nutrition, allows bowel rest and has anti-inflammatory and healing properties.

I've attached two links for you for more EN info:

http://www.crohnsforum.com/showthread.php?t=36345

http://www.crohnsforum.com/forumdisplay.php?f=161

Good luck! :ghug:

 

[Clash]

No advice to add as you have already gotten great advice from Crohnsinct and Tesscorm but just wanted to say welcome and to let you know this forum is a wonderful community with alot of experienced, caring and compassionate members, so don't hesitate to voice concerns, ask questions or just vent!:ysmile:

Hope they are able to get your niece on her way to remission real soon!:heart:

 

[Sascot]

Just wanted to wish your neice well! Definately worth asking about the EN - my son had it exclusively for 8 weeks before moving onto normal food slowly again. It got rid of all his tummy pain and allowed him a few months without any issues. He had it through the NG tube as he couldn't stand the taste of the drinks, but he managed really well and it was worth it. Good luck

 

[dannysmom]

Hi and welcome. Is your niece seeing doctors at CHOP? I believe they have a good reputation and may not be too far for you.

 

[DustyKat]

Hi harrleequin and :welcome:

I am so very sorry to hear about your niece, , what a difficult and heartbreaking time for you all.

You have been given fab advice and I have nothing to add except to say that I do believe your best bet at this point is EEN (Exclusive Enteral Nutrition) to hopefully help kick start her into remission along with meds.

Good luck hun, my thoughts are with you...:hug:

Dusty. xxx