Hello! My nice is 4 yo and she was diagnosed with Crohn. She is in a hospital in Romania but her situation is not improving! She was in Salofalk (Mesalazinum) for 2-3 months and now we are looking for a clinic in Ireland or UK wich treats very young kids. If you can give me any suggestion will be very much appreciated! Thank you and wish you all a very good health!
-
Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.
My nice is 4 yo and was diagnosed with Crohn
- Thread starter Zen2013
- Start date
So sorry to hear that, Zen. The five steps you need to take are:
First, immediately get her Vitamin D level tested. It should be in the 50-100 ng/nl range.
Second, read this string about Vitamin D & Crohns:
http://www.crohnsforum.com/showthread.php?p=601007#post601007
Third, buy the book, "The Vitamin D Solution," by Michael Holick and read it cover to cover.
Fourth, talk to her GI about her Vitamin D level; and
Lastly, give her daily doses of Vitamin D3 and Folic Acid as soon as possible!
Continue to closely monitor her Vitamin D levels. Please keep me posted on her progress.
She will get better!
Lisa
First, immediately get her Vitamin D level tested. It should be in the 50-100 ng/nl range.
Second, read this string about Vitamin D & Crohns:
http://www.crohnsforum.com/showthread.php?p=601007#post601007
Third, buy the book, "The Vitamin D Solution," by Michael Holick and read it cover to cover.
Fourth, talk to her GI about her Vitamin D level; and
Lastly, give her daily doses of Vitamin D3 and Folic Acid as soon as possible!
Continue to closely monitor her Vitamin D levels. Please keep me posted on her progress.
She will get better!
Lisa
Paging polly13.
She has a very young daughter in Ireland who has just been diagnosed with crohns. She is their youngest case there. I will send her a pm and let her know your situation.
I hope you can find your niece some excellent medical care. The younger cases are always a bit more challenging. (((((hugs))))))
She has a very young daughter in Ireland who has just been diagnosed with crohns. She is their youngest case there. I will send her a pm and let her know your situation.
I hope you can find your niece some excellent medical care. The younger cases are always a bit more challenging. (((((hugs))))))
Angrybird
Moderator
- Location
- Hertfordshire
Hello and welcome to the forum.
I am sorry to hear about your niece, it is always tough when the diagnosis comes at such a young age. My understanding of Salofalk is that it can also been known as Mesalazine which is actually approved for the treatment of Ulcerative Colitis and doesn't seem to have a great success rate for the folks here who have Crohn's. What symptoms does she get? Due to her age I am hesitant to say that steroids are the only way to go so one alternative to look into would be enteral nutrition, this has been shown to do well with settling the tum in children and it doesn't have the side effects that you can get with the meds. If steroids do become something she needs then do make sure she is also put on a calcium supplement whilst taking them to help protect her bones. I think you should also have a look at our parents forum as the mums and dads here are wonderful and will also have some great advice and support to give you: http://www.crohnsforum.com/forumdisplay.php?f=49.
Please keep us updated on how things go.
AB
xx
I am sorry to hear about your niece, it is always tough when the diagnosis comes at such a young age. My understanding of Salofalk is that it can also been known as Mesalazine which is actually approved for the treatment of Ulcerative Colitis and doesn't seem to have a great success rate for the folks here who have Crohn's. What symptoms does she get? Due to her age I am hesitant to say that steroids are the only way to go so one alternative to look into would be enteral nutrition, this has been shown to do well with settling the tum in children and it doesn't have the side effects that you can get with the meds. If steroids do become something she needs then do make sure she is also put on a calcium supplement whilst taking them to help protect her bones. I think you should also have a look at our parents forum as the mums and dads here are wonderful and will also have some great advice and support to give you: http://www.crohnsforum.com/forumdisplay.php?f=49.
Please keep us updated on how things go.
AB
xx
Thank you! In Nov2012 after a colonoscopy her GI said is UV! They gave her Salofalk and it didnt work for her! They tried a 3 days dose of cortison and it stoped the bleading at the poo! It continued with Salofalk ang after 2 weeks she got worse - having 9 poos with blood per day! Now the doc is saying to put her back on cortison for a longer period, to stop the bleeding! What is that enteral nutrition about?
Exclusive Entreal nutrition or EEN is all their nutritional needs would be supplied through a liquid or formula, it has been proven in some cases to do the same thing that a steroid like prednisone would do. Control/get inflammation under control.
Usually this would be done for 6-8 weeks initially you can find more information here http://www.crohnsforum.com/showthread.php?t=23607. There are several different formulas available and I'm not sure what is available where she lives. They can be done either by drinking or giving through an NG tube - paging farmwife. Her daughter is 4 and is on EEN.
Welcome to the forum and I see Johnny's mom already paged Polly.
Usually this would be done for 6-8 weeks initially you can find more information here http://www.crohnsforum.com/showthread.php?t=23607. There are several different formulas available and I'm not sure what is available where she lives. They can be done either by drinking or giving through an NG tube - paging farmwife. Her daughter is 4 and is on EEN.
Welcome to the forum and I see Johnny's mom already paged Polly.
My Grace is on EEN like was said. It's been a live saver for my girl. She just had a growth spurt. She's now in the 13th percentile for height. I'm so happy.
I'm not sure your sister can get these special shake. These shakes are complete meal replacements. The provide all and extra vitamins that kids with IBD are missing. Let me know if you have more questions.
I'm not sure your sister can get these special shake. These shakes are complete meal replacements. The provide all and extra vitamins that kids with IBD are missing. Let me know if you have more questions.
hugs - sorry to hear about your niece
Second or third the EEN-
Modulen would be available - I think ??? and maybe E028 splash
if ASA didnt work maybe they can move her up to Imuran or AZA?
Second or third the EEN-
Modulen would be available - I think ??? and maybe E028 splash
if ASA didnt work maybe they can move her up to Imuran or AZA?
- Location
- Tipperary, Ireland
Zen I am only seeing your thread now haven't been on a while - Lucy is under the care of our ladies hospital for sick children Crumlin it is the only GI centre in Ireland. It is excellent please pm me if you need anything
Zen - How is your niece doing now? I hope and pray she is doing better.
Lisa
Lisa
Hi Polly! Thanks for ur reply! I have been contacted the Crumlin Children Hospital in Dublin and I have sent all the medical documents and reports we have by now! we r now waiting for a reply from them and an appointment! After the last results, the GI in bucharest said is ulcerative colitis and not Crohn! we'll see. we are looking now also for a nutrition scheme for UC.
Hi zen so sorry to hear about your niece.
My daughter is nearly 4 and has just been
Diagnoised with crohns.
Lucy is also on EN via NG tube this is her 8th
Week and like farmwife said its a life saver
Hugs
My daughter is nearly 4 and has just been
Diagnoised with crohns.
Lucy is also on EN via NG tube this is her 8th
Week and like farmwife said its a life saver
Hugs
Best wishes
- Location
- Tipperary, Ireland
Zen that's great that you are in touch with Crumlin again if need anything let me know