New diagnosis

[Adele]

Hi everyone, my 13 year old daughter has just been diagnosed with Crohns...she has been ill since January this year, lots of visits to the GP who wasn't very helpful...Saw a different GP who was very good, caring and understanding. She was very worried about my daughter's 8lb weight loss in 4 weeks, finally got us referred to a paediatric consultant...had xrays, barium MRI scan, blood tests, ultrasound etc...finally had endoscopy last week...Crohns confirmed, we're all a bit shocked to say the least. She had to have a 5 day stay in hospital, is on a polymeric diet of fortisip, 7 a day with no food at all...her consultant insists on 8 weeks although the literature states 6??? Also on Pentasa, she is doing well, just finished her first full week but has to try it back at school yet next week, which I'm dreading for her. We go on holiday in 6 weeks so need to try to sort out taking all those drinks with us, I've emailed the airline but am still waiting for a reply. Anyone else done the diet? If so how were you when you finished it and started eating food again please??

Adele

 

[Trysha]

Hello Adele
Welcome to the forum.
Good news that your daughter has been properly diagnosed and is receiving good treatment and care,
Sorry I cannot answer you questions but there will be other froum members who will no doubt be along to offer you advice and experiences.
You may find it helpful to log in to the British crohn's site, the address escapes me for the moment.It looks as if they can be very helpful when I have viewed it previously.
There is also a subforum for parents on this site which you may find helpful.
Hugs
Trysha

 

[Trysha]

Hi Adele
Here is the address:
www.nacc.org.uk

 

[Keepingfaith]

Welcome to the forum!

I'm glad she is doing good with eneteral nutrition & Pentasa. Most people don't feel great with their first medication. There is a subforum for parents of kids with IBD & their are a great bunch of people! I'm 16 & have Crohn's as well so if she ever wants to message me-or you-feel free! I love talking to others on here that are teens.

A lot of kids on this forum, as well as adults do Enteral Nutrition(what she's doing with the fortisips) to obtain remissionstay in remission. Usually after the initial 6 weeks, you slowly add back foods and stay on a 'maintenace dose' of drinking those drinks. Probably a few a day. Most kids on the forum use a feeding tube though & they do it so they won't have to drink it. After the 6 weeks, they usually leave in the NG tube only at night or for a few days a week or every night. How long you want to continue doing EN is up to your daughter & her GI.

This forum is great & you'll receive a ton of support!

 

[David]

Hi Adele and welcome. In case you didn't see it, the "Parents of Kids with IBD" section that Trysha referred to can be found here. It is full of absolutely amazing parents for you to connect with. And there is a thread dedicated to "Kids on enteral nutrition" so be sure to check that out.

We're here for you!

 

[paccio6]

Hi everyone, my 13 year old daughter has just been diagnosed with Crohns...she has been ill since January this year, lots of visits to the GP who wasn't very helpful...Saw a different GP who was very good, caring and understanding. She was very worried about my daughter's 8lb weight loss in 4 weeks, finally got us referred to a paediatric consultant...had xrays, barium MRI scan, blood tests, ultrasound etc...finally had endoscopy last week...Crohns confirmed, we're all a bit shocked to say the least. She had to have a 5 day stay in hospital, is on a polymeric diet of fortisip, 7 a day with no food at all...her consultant insists on 8 weeks although the literature states 6??? Also on Pentasa, she is doing well, just finished her first full week but has to try it back at school yet next week, which I'm dreading for her. We go on holiday in 6 weeks so need to try to sort out taking all those drinks with us, I've emailed the airline but am still waiting for a reply. Anyone else done the diet? If so how were you when you finished it and started eating food again please??



Adele

Hi Adele. I just joined this forum on a whim and would like to help whoever I can from my experience. My 9 year-old daughter was diagnosed with severe crohn's disease at the age of 6. After 3 hospital stays within the first six months, we finally found the answer we were looking for. My daughter has been symptom free for almost the entire time since, over 2.5 years now and takes NO medication, only a few all-natural supplements.

The answer came from a Naturopathic Doctor (ND) who performed allergy testing on my daughter and found her to be highly, highly allergic to gluten. She takes a vitamin daily, a powdered acidopholis/bifodis, calcium, vitamin B and another supplement that I can't think of. The ND who saved my daughter from Remicade is Dr. Jon Dunn, ND here in California. His website is DrJonDunn.com

I hope you find the cause of your daughter's symptoms without the use of medication like we found for our daughter. I hope this information helps you. Take care and one last thing is that I'm a Man U fan, not Man City, just so you know.

 

[Adele]

Thank you all for the advice, I will definitely look around the forums at the pages you suggested. We are taking it one day at a time...thanks again...Paccio, I am a City fan...League winners...lol :ylol2: