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Introduction - Daughter diagnosed

crohnsinct

Well-known member
So glad to have found you all. My 12 year old daughter was recently diagnosed with severe Crohn's. Our road was not as long and complicated as most. It was quietly moving along until bam January it hit hard and she was hospitalized. Low iron from the blood loss (bleeding and diarhrea bad for two weeks), dehydrated and needing iv nutrition. Our ped was sure it was Crohn's and referred us right away to a ped G.I. who admitted her and started her on blood transfusions, iv nutrition, fluids and prednisone. Once the colonoscopy and endoscopy confirmed the Crohns and how severe it was (large intestine only) she was started on Remicaid. During the 6 days in the hospital so many signs over the past two years pointed to Crohn's, lower than normal energy, no weight gain, mood swings, bits of blood in stool, delayed puberty etc. But have to say little belly pain...then and still. Lots of mommy guilt.

Anyway, she has had two infusions and is coming up on her 8th week and having her third on Thursday. Last Monday was first day off prednisone. Bleeding has just started again (very little like at the beginning). I am figuring it is because of stopping prednisone and maybe because it is time for next infusion???

Not really sure what the future holds. I hate meds but in hospital we were told we had no choice. Do kids ever come off Remicaid? Maybe stretch it out longer than 8 weeks? As much as I hate the meds, it is so nice to have my daughter back to her normal self. She is a competitive athlete in more than one sport and is finally seeing things come back together. Has also gained 10 pounds but maybe that is from prednisone? Am I delusional to think that as long as she stays on Remicaid all will be O.K.?

Thanks for reading.
 

crohnsinct

Well-known member
O.K. oops meant Remicade...also taking D3 2000 iu's a day, 30mg Prevacid, calcium and multi vitamin with iron.

One quesstion...if diagnosed with severe Crohn's does that just mean that flare was severe or does it mean you always will have "severe" Crohn's?
 

DustyKat

Super Moderator
Hi crohnsinct and :welcome:

I'm so sorry to hear about your daughter...:hug:...I understand what a difficult and heartbreaking time this is for you. I also know about the 20/20 vision in hindsight and doesn't that lend itself to making you feel even more guilty, if that is possible! :eek2:

The bleeding may well be what you have suggested, a combination of those two things. It is hard when you are in the acute situation you are in, you don't have time to think, ask or research. You depend on those around you to give you sound and safe advice and there is nothing wrong with that Mum and they haven't steered you in the wrong direction. Sure, there are many paths to choose and I don't believe any are wrong, they are just different. I know you hate the thought of your daughter being on Remicade but it is working so at this point I wouldn't change anything. The most important thing at this point is the restoring of your daughter's health and that is what you are doing. I don't know of that they stretch Remicade out longer than 8 weeks, they certainly shorten it up though if required. I think most people stay on Remicade whilst ever it is available to them and working. Of course people do make a personal decision to cease using it.

As time moves on and your daughter has time and health on her side read, read and keep reading. Look into Enteral Nutrition, Low Dose Naltrexone and Diet and please pop by the Parent's Forum cause we would love to see you there. :)

This disease is so very individual in its presentation and its response to treatment. Some people suffer with pain and some don't, some have bleeding and some don't, some have diarrhoea and yet others have constipation, some respond to one med and others don't. Some of this has to do with the location of the disease, severity and complications. I don't believe that once the disease is classified as severe that it stays that way. My daughter had severe Crohn's that required emergency surgery but she was undiagnosed at the time. She had that surgery nearly 6 years ago and has been in remission since that time. My son was diagnosed with mild to very mild Crohn's but it only took one deep ulcer to cause a fistula and abscess and then surgery for him also. Crohn's is a chronic disease but not necessarily a progressive one and I think once diagnosed and treatment (including diet and fitness) and monitoring commenced for many people it doesn't mean a life of severe disease. For some it can be very difficult to control but for most it is not. It is a fluid disease so over a lifetime you may go from mild to severe and back again many times or only once.

Good luck to you and your girl Mum. Oh and no you aren't delusional in thinking that all will be okay because it very well may be!

Dusty.xxx
 
Location
Canada
Hi Crohnsinct,

Welcome to the forum. Sorry to hear your daughter was so ill but I am very glad to hear that she is improving so quickly. I am fairly new to the forum as well, my 10 year old son was diagnosed with Crohn's at the beginning of February and we are still struggling to find the right treatment to induce remission. I don't have any experience with which to answer your questions but I am sure others who can answer them will be around shortly. There is a parents of kids with IBD section that you may want to repost this thread to as more of the parents are likely to see it there.

The one thing I do have experience with is the mommy guilt. If I look back I can now see that my son had symptoms for at least the past year, probably longer. The symptoms always seemed to have more simple causes and Crohn's was just not on my radar. I can think back to a number of times that I wouldn't let him leave school, or other various activities, when he said he felt terrible because I didn't think there was anything wrong. It seemed impossible that this seemingly healthy kid should feel terrible for no reason. Little did I know there was something serious brewing under the surface. Oh how I wish there was a crystal ball so that we could operate in the here and now with hindsight, it would make things a lot easier.

Anyhow I just wanted to say hi and welcome to the forum. There a lots of parents on here that have experience in many areas and they are so great to "talk" to. Hope to see you around in the threads.
 

crohnsinct

Well-known member
DustyCat : Thanks so much for the welcome and your insight. I am very interested in the nutritional aspect of this disease and now that my daughter is comfortable and doing well will start researching that. You mention posting on the parents forum. Shall I repost my introduction?

Twiggy: Wow! Your son was just diagnosed in February and you have 34 posts?! I'm impressed. My head just stopped spinning and I am just now emerging from my Crohn's fog. Thanks for the welcome and I pray for the best for all our little Crohnnies.
 

DustyKat

Super Moderator
Since the responses you have had so far are from parent's I will copy all the post's to the Parent's Forum for you. :)

Done. :)
 

Angrybird

Moderator
Location
Hertfordshire
Hello, I just wanted to pop in and say welcome to the forum :bigwave: I am not a parent of a crohnie but do have it myself and I personally think that mentally the disease is easier on the 'sufferer' than the people around us, especially the mummies. My mum still cried last year when I was told I had to have an op. She explained that even though I am nearly 27 and have a hubby to look after me I am still her baby.

It is great you have decided to join us as there is a wealth of information and support here so do have a good look around.

Best wishes and hugs

xxx
 
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