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crohnsinct

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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.
 
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?
 
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
 
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.
 
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.
 
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. :)
 
I am also new to this site and it has been so helpful. I felt so alone not having anyone to talk to or anyone that understood what we deal with on a daily basis. I hope she starts to improve. I don't have any knowledge on Remicade but do on NG-tube feedings. Welcome from Sue and Chloe
 
Welcome Chronsinct! You will be second-guessing every decision you make for her but like Dusty suggests, if she's doing well why change? My son has been on Humira for nearing a year and was on 6mp over a year before that. They are all scary but he has lived a virtually normal childhood since his treatments began and I would not want to risk going back to the dark days!!
 
WELCOME, :rosette2: do read up on Enteral Nutrition, see my other posts on it and Tesscorm's, and read the thread on it, please!
It was a lifesaver literally for Violet, I'd do it even if I had to pay the ridiculous sum it costs each month for formula. Would not be without it, period. Malabsorption is rampant in peds IBD pts and that is unacceptable to me.

As far as guilt...oh yes, that I am familiar with.
Violet's came on very suddenly, but I do cry now when I recall how I got mad at her for not eating, took her first to a psychologist thinking she had developed an eating disorder, she was so weak at the psychologist's office she was falling asleep in the waiting room, was literally starving to death slowly and here I was getting MAD at her and trying to force her to drink Pediasure...before seeing The Saint, her GI, (while seeking dx at the ped and ped/hem-onc) she was put on Reglan by the ped, then started severe stomach pains, rapid heartbeat, sleeping all the time, freezing cold, cachexia...she was dying. And I still feel sick when I think that went on for a month until she landed at the GI. Total weight loss, 19lbs in seven weeks, from 78 to 59lbs.

She started formula feeds and four months later was 99lbs, NO DRUGS.
Now she is 63in and 134lbs, a big healthy looking ox.
I still can't look at photos of her from that time in 2008.

So it does get better, V's case was dramatic and she recovered FAST, but it stays with us mothers, never leaves. The worry, that is.
 
Hi Welcome to the Group! Sorry you have to be here but glad you found us! We all definitely understand the Mommy guilt, I too felt bad that I never realized my daughter was as sick as she was until she got diagnosed. (of course I can blame it on postpartum fog she basically got sick the week before her little sister was born). We were lucky in that she got diagnosed reasonably quickly. Keep us posted on how your daughter is doing. I too highly recommend taking a look at the enteral nutrition and LDN threads.
 
Hmm. Starving to death. Sounds like my girl. Competitive swimmer. Times were slow for over a year. Kept mentioning weight to ped and was assured that I was small so she would be...she is a traithlete so probably just burns through the calories...don't worry about times are you a hyper competitive swim mom? Took her in for dizziness...just drink more...The day before I took her to ped I saw her on pool deck and thought, "that can't be my daughter" She was emaciated (sp?). Brought her in to ped suspecting eating disorder. Who knew she would be swimming in a meet Sunday and in hospital on parenternal nutrition, blood transfusions etc on Tuesday? So fast.

Now I am a little freaked out. Just realized in my original post I said it had almost been 8 weeks since last infusion. I WAS WRONG! It has only been 3 1/2 weeks. Trying to stay calm and blame the prednisone taper. Maybe they can put her back on a bit of prednisone? I can't imagine shortening the remicade infusions to every 3? Things were going so well but I guess that is how this thing is...two steps forward 1 (sometimes more) back.

Want to bring up enteral (sp?) nutrition with doc but a little scared right now. Method of delivery? Tube? Can she swim? She has had to give up so much already. We do mission work and were planning trip to developing country. She can't go with supressed immune system...can't get shots..not to mention doc doesn't want her that far away from good hospital. He let her swim in her championships because he felt so bad...she was climbing the walls and getting so depressed. She did great. Bested 5 out of 6 times.

I left a message for the nurse about bleeding. Can't wait for them to call tomorrow so I can get guidance, answers etc...this reminds me of those long lonely hospital nights:(
 
Many of the kids on Enteral place the NG tube each night before bed and remove it upon awakening in the morning. This is how V and Tesscorm's son do it. V did have the tube indwelling for the first three mos, her GI encouraged her to start removing/inserting, he said he had several IBD pts who did it and many w/CF who did.

We thought that would be a HUGE DEAL and it WASN'T.
It takes literally ten seconds to insert, she drinks through a straw while inserting to keep the epiglottis closed and doesn't gag nor cough at all.
Her doc said in UK, Japan and Canada this is FIRST LINE treatment for all peds pts, and that the reason it isn't that way in the States isn't because they don't realize it works, but because culturally Americans are more resistant to it and just want pills.

It has anti-inflammatory properties as well as the obvious nutritive benefit, many med journal articles out on this aspect of it.
The guaranteed nutrition is the selling point for me. So many IBD kids are undersized and have growth retardation/delayed development due to malabsorption even when they eat a lot. That was something I was not going to allow. I saw them when Violet went to IBD sleepaway camp, and she was the healthiest looking one on her cabin, and the only one on EN.

V avoided drugs for three years via this method and remained in the 50% height 75% weight after regaining the huge weight loss and growth arresting that had happened that summer. Doc has always said her BMI is "perfect". I cannot argue with success. :biggrin:
 
Imaboveitall: Thanks so much for your posts. I ran over to the Enternal Nutrition posts and it sounds great. Especially for my girl. She is 12 and never got to 70 pounds. At her sickest she was 60 pounds. She is pretty tall too. They want her at 95. They want her to eat 2400 calories. It is almost impossible to eat healthy and eat that much in a day...especially on this crappy low residue diet. I will definitely bring it up at next appointment but this doc jumped so quickly to Remicade I am afraid I won't get too far. Keep your fingers crossed!
 
That makes me sad, age 12 and 70lbs is way too skinny, God love her and you too :kiss:
V was on 3000cals at first until she regained the losses. She's now on 1200cals plus whatever she eats all day which is usually a ton.
If her doc isn't into it you may have difficulty. And formula makes a difference, Pediasure made her worse (pain), she had to use a med grade formula that is peptide based for digestibility.
I hope Tess shall see this thread and share her Stephen's story as well.

Also tube size. V uses an infant size tube, not much bigger than a piece of cooked spaghetti in diameter. Makes a big difference in comfort of insertion. V says she cannot feel it in the throat at all once inserted.

Even if she does it just for a few months until she gets where she should be weight wise; V was so pleased with her figure development after looking like a rail for so long that she wasn't about to give it up. None of her friends have to know, if she does it at bedtime and removes in the morning.
 
That's my point, it is HARMLESS and cannot hurt, only help.
That's why I don't get why so many are resistant to it. When I spoke to mothers at that camp for IBDers, all were kind of horrified at the idea of the tube. It was like barely masked disgust. :stinks:

V's doc says almost no one wants to do it in USA, though it is expected treatment abroad.
I like the knowledge and comfort of knowing her nutritional needs are met regardless of her disease activity.
I guess I am traumatized after her nearly starving to death, actually, I know I am. I have PTSD from it. :shifty:
 
Well heard back from G.I. today. We are putting her back on Prednisone and will talk more at her infusion on Thursday.
 
Hi Crohnsinct,

Not sure how but, seems I've completely missed your posts! :( I'm so sorry about your daughter, it's just horrible to be given a diagnosis like this for your child! Certainly hasn't been so long since my son was diagnosed that I've forgotten the heartbreak, anxiety, guilt, etc., etc. - not sure you ever forget those initial moments, days! But, as your daughter improves and you learn more, it truly does get easier. :)

As for the EN, this has pretty much been my son's only treatment (except a week of Flagyl and ongoing Nexium, an antacid). As mentioned above, he inserts the tube each evening and removes it in the morning. He has had no problem with this at all. While he was in the hospital, the nurse worked with him 3-4 times on learning to do it, after that he did it on his own. We never had any issues at home and, if I recall correctly, I think he was very comfortable with the insertion within a week or so. The sensation of the tube in his throat only bothered him for a few days, then I think he just became accustomed to it. And, it's never caused him any nasal or throat irritations.

Socially, although he doesn't use it during the day, he's always been very comfortable with his diagnosis and most of his friends know about the tube. Whenever they sleep over, he has no problem inserting the tube with an audience :lol: and his friends have only shown curiosity. However, they are a bit older than your daughter... 17 years old.

As far as weight gain, my son was approx. 147 lbs before getting sick and then lost approx. 20 lbs before diagnosis. Once he started on EN, he gained 10+ pounds fairly quickly (over six weeks??? during the 'exclusive' period) but then, once he started eating all foods again, gained anothe 20 lbs and stabilized there.

His first six weeks were 'exclusive' to formula only (no foods). At that time, he was ingesting 3000 cal. After the 6 weeks, his formula has been cut to 1/2 dose, 5 nights per week (1500 cal x 5 nights) - this is what he continues with now.

I agree with Julie, V's mom, I think it's a great treatment! While not perfect (I'm sure my son would like to NOT bother with any of it:(), it is fairly convenient (being overnight), he can choose his two nights 'off' and, being a picky eater, gives him the nutrition he needs. And, as far as I know, there are no conflicts if EN is used in conjunction with medications???

I hope this helps :) And I sure hope your daughter is feeling better soon!

:ghug:
 
Isn't it funny the swimming was the tip off that something was wrong. Times started getting slower over a year ago. I kept asking coaches what they thought the reason was. They treated me like a pesky parent questioning their coaching skills. We switched team for summer Long Course season. The new coach said for the effort she was putting in and how good her technique was there was no explanation for how slow and tired she looked in the water. He told me she was complaining of muscle cramps, dizziness etc and that he was concerned about dehydration. He really helped escalate our concerns at the pediatricians office. We couldn't believe that she was swimming in a three day meet over the weekend and in the hospital on iv nutrition and blood transfusions Tuesday!
 
Tesscorm: Thanks so much. I really do think that we should investigate EN further. Even if we use it in conjunction with the Remicade for now and turn to exclusively EN down the road. I just don't see how my daughter is going to gain the kind of weight they are looking for without it. Even if she could manage to eat the number of calories they want her to, she starts spring track next week and will continue her swim practices (2 hours a day 5 days a week)...she will burn it all off anyway! I mentioned it to my ped who is a godsend and she said she thinks it is worth investigating further. She said she will do research and help me bring the topic up with the G.I.. Great having her in my corner! I don't think the GI will dismiss a doc as readily as a mommy.
 
Actually, activity level is certainly a consideration, even with EN. Although Stephen gained the initial 10+ lbs quickly (at the beginning of the 6 wk period) he stabilized there for a while... the dietitian agreed that the EN treatment dose did not take into account his activity level. At that time, he had two PE classes (2+ hours) each day, plus played on a competitive ball hockey team and his spring/summer ice hockey team. She did 'suggest' he try to slow down a bit but didn't want to increase his calorie intake beyond 3000 calories unless he started 'losing' weight again. If that were to happen, then they would consider a stronger 'suggestion' to lower his activity level and/or increase calorie intake.

But, his GI was happy with the initial gain and reduction of other symptoms and, once Stephen began to reintro all other foods, he again quickly gained more weight.
 
Hi, sorry your daughter is struggling! As mentioned in a post - in Scotland anyway - my son was put straight onto the EN for 8 weeks as soon as he was diagnosed.
People keep worrying about whether their kids will "want to do it". We were given no choice. My son was told he had to do the 8 week liquid diet - if he couldn't drink the Modulen he HAD to get the NG tube and have it that way. It was never an option to not do the liquid diet.
So far so good with his stomach symptoms - he has been great since finishing the Modulen. Hoping it continues well.
Good luck!!!
 
My daughter swimming times also got slower a year ago. In November she was doing 8 x 2hr sessions per week. Sarah dropped 12kgs in a 8 week period and had to stop swimmings completely. She has just started back with 2 one hour sessions per week. We knew she had anemia but we did not it was considered severe.
 
Sascot, EXACTLY, V's doc said in other countries it is standard and no choice given.
V had no choice either, she was too sick and starving to argue, but I wouldn't have given her an option either had she objected.
 
Here too... steroids were vaguely mentioned but all conversation really centred on EN. It certainly wasn't presented as if Stephen had much of a choice which I think really helped his mindset in learning and adjusting.
 
O.K. so we are back on prednisone:stinks: and I had a chance to police the poop and not only is there blood but it has gotten much more loose. So my new worry is this: Does this mean the Remicade can't work without the support of Prednisone or something else? Was it the prednisone all along that stopped the blood and the loose stools and is the Remicade not working at all? I remember right after the colonoscopy in the hospital, when the doc had us in a consult room telling us she had crohn's, it was severe, and he was suggesting Remicade (not too much to absorb in 15 minutes huh?) that if the Remicade alone didn't work they would add one of the drugs that starts with "a"...another scary one I am sure...I think it is the one that when added with Remicade doubles one of the cancer risks.

I have spent the day reading about risks and am feeling a bit more comfortable 6 out of 10,000...but am thinking if he tells me the Remicade doesn't seem to be working alone and we need to support it I will ask about LDN or EN...this actually may be a blessing in disguise.

Probably just too soon but I seem to like my cart before the horse.

Going in for third infusion tomorrow and will let y'all know what happens.
 
It's so hard to tell...we always used a wait and see approach...after a particularly bad week after her infusion we drew a HACA level and found that she had developed antibodies. She had been on Remi for a few months at this point (I think 5).
We also used EN with an indwelling ng tube...it helped quiet her symptoms as long as she didn't eat anything else (although her diet was *not* restricted). It helped us to stop the weight loss and get control of her nausea (she wasn't eating much to begin with but her appetitie improved after being on EN for a while). Good luck!! So many difficult decisions...
 
No exp w/either pred or Remicade but I can say Violet got fast and dramatic improvement in lactoferrin level (her doc's fave test and the one he's using to assess Humira response) after loading doses of Humira; I just took in the next specimen and we'll see if they remain low.
Of course she FEELS no better so...:shifty: but I think she has other issues soon to be revealed (I hope).

Prob not much help with that info, just sharing that I am right there in the boat with you...worrying, obsessing, and understanding. :hug:
 
Julie, you've seen no improvement with V at all? Was hoping you had begun to see something...

Remind me.. when is the Guru apptmt? This week or next?
 
Aw Tess, thanks for asking about The Winner...see my new thread and you'll get what I mean...:rof: (Laughing to keep from crying...wasn't that a Shirley Maclaine book...?)
 
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imaboveitall: I am so sorry your your daughter still feels bad and praying that you get some answers soon. If it helps any, I truly get strength from you parents who have been down such a long and winding road and who are still here to tell the story. You are awesome parents and inspire me!

My daughter went for third infusion yesterday. All went well...she just gets super tired afterward.

The bleeding and loose stools stopped as soon as we reintroduced the Prednisone.

She is up to 75 pounds now...15 pounds up from her admit weight...and grew in height too...almost 5 feet

Anyway, they took blood and the doc's nurse popped in and said they will call today to give me the new Prednisone taper. Said that sometimes Remicade takes a little longer to work on its own and to not abandon it yet. Also tightened up the Remi schedule. We go back in 7 weeks instead of 8. Oh and also said to very slowly get off the low residue diet...she brought a granola bar to school today!

We were supposed to take a vacation in April to make up for the missed mission trip to South America. Kids still want to go out of the country but that will be two weeks before next infusion and right around full taper so I think I want to stick closer to home. It is all still a little new for me right now...I think I also suffer from PTSD.
 
THANKS Cinct. If her case just made SENSE, I'd be SO much more calm about it.
I'm glad your girl is gaining height, that's an EXCELLENT indicator that she is improving. Pred weight gain is different from lean body mass accrual, so not as reliable as an indicator of improvement when on pred. I'm actually starting to wonder if V should do a bit of pred until the Humira "kicks in" so to speak...I took it for Bell's palsy last spring and I felt so great on it I tried to convince the doc to keep me on it longer...:D
 
Hey crohnsinct,

It is wonderful to hear that your daughter continues to do well on the Remicade. :)

The other drug they would have been talking about is Azathioprine (Imuran). I think the main thing to remember is there are no wrong decisions here when it comes to treatments. Unfortunately for some the milder alternatives just don't work and as much as we hate the thought of the stronger drugs and their potential side effects the effects of untreated or under treated acute and chronic inflammation can be just as damaging and dangerous.

Dusty. xxx
 
Thanks DustyKat and I totally agree and am down with the risks these days. After how sick she got, untreated disease isn't an option.

Now, not to be a total attention hog but....She started back on Prednisone Monday and by Wednesday and Thursday no blood and firmer stool. Yay! Wednesday at infusion they took blood and said when results came back they would call with new Prednisone taper schedule and that we could slowly start to transition off low residue diet.

Nutritionist said add back 1 veggie, 1 fruit and 1 whole grain. After a week we could add one more serving of each. Well we added just one whole grain yesterday...a granola bar.

Well as of this a.m. no call on taper (guess lab was taking longer) but loose stool and blood! No pains (and she skipped her Prevacid that day).

I called and posted them. I asked if they thought the blood and loose stool was caused by the granola bar. They say probably not but lay off for the weekend and stay on Prednisone original dose and we will talk Monday about taper.

So now waiting and wondering...So annoying when my crystal ball doesn't work!
 
Personally I would lay off what the nutritionist said and go back to the low residue diet until her bowel is healed.

The bleed and loose stool may have had nothing to do with the Granola bar but since she is back on Pred she obviously has issues with inflammation and I don't see how grains and fibre are going to be kind to an already raw and inflamed bowel. Ouch. :(

Good luck! I hope things settle again for daughter and soon! :hug:

Dusty. xxx
 
Oh, and if they are worried the nutrition side of things then I think it is far kinder for her bowel if she supplements with liquid nutrition, not sure what brands you have in the US, Boost? Ensure?

Dusty. :)
 
UGH! I think the move off low res was my fault...add that to the list of things to feel guilty about. I just happened to ask the infusion nurse when the kids move off low res and at what point we should be considering it..she wrote page to doc and doc responded we could start but very slowly.

In hindsight...duh...what was I thinking? Inflammation and bleeding do not equal moving off low res. :duh:

Oh and you can add to that the fact that I was responsible for snack at youth group last night and brought popcorn...habit. She was good though and remembered and packed herself something but I did see her sneak two or three pieces of popcorn...BAD MOMMY. :nonono:
 
Yikes! Don't beat yourself up about that Mum! :hug:

I'm not good at many things but boy don't I excel at guilt! :lol: I think we all do, especially because it involves our kids. It's not hard to feel guilty when it affects some one else. We've all been there hun and in my case more than once, hell I've done it so many times that now my coping mechanism is to shrug my shoulders and tell myself shit happens. :shifty: Doesn't work every time though. :wink:

Dusty. xxx
 
Hi there,
it is nice to find you as well. My daughter Caroline was diagnosed at 6yrs old in 2008. Same kind of thing as yours.. nothing really wrong then Wham.. deathly ill. I would love to tell you that once she is on Remicade all will be well; and it may be! One of our friends has a son who was diagnosed with Crohns at 15 and started on Remicade every 4 weeks. He is now at college and doing fine. If he misses a dose of Remicade then he has issues. My understanding is once you are on it, you don't usually get off unless you become resistant, etc. Then you move to another med. There are SOOO many ways that this horrid disease presents, no one has the same experience.
I hope you have the easiest road possible, and she takes back off in the direction that God intended for her. My daughter loves sports as well, and there are so many benefits to that. You may want to look at diet as there are some ideas that Gluten can cause issues for people with Crohns. The journey can be a long one, but all of us are here to talk if you need to..
God Bless!
 
Hi, ehs...another sudden onset case...wow. V's was too.

Cinct, have you considered EN? Esp if food is affecting her, it may really give her relief.
V always ate anything and no adverse effect, (after getting better on EN I mean) but for the first month on EN hardly ate at all.
If my "pushing" EN is annoying just tell me to shut up :duh: I know I'm like a religious zealot about it.
 
"Religious zealot" LMAO! Hard not to be when something helped your daughter so much. I am very interested in it. My ped is looking into it to help me approach the GI doc with it. She feels he may be more accepting of it if she is in my corner. Plus we are so new to all this and her condition was so bad she feels if we play nice now when things calm down the GI may be more accomodating.

The problem isn't actually absorbing nutrition as she has grown in inches and they say that isn't prednisone. The problem is getting her to stop bleeding which I understand is inflammation and EN can help with that too...right? If he suggests Imuran to support the Remicade the first words out of my mouth will be EN.

Either way, once she really starts back to track and swim practices and comes off prednisone they will see she is going to need something to help her get that weight on and keep it on.

In the meanwhile we stay in the IV league and swallow the yucky prednisone and wait and watch the toilet. Never knew my anticipation of my child's bm would be so great! She doesn't always tell me how things are so I have to catch her in the act and request to see it. She slept over a friend's house last night and all I could think was "oh great now I won't get to see her poop in the morning" So glad to have you guys around cuz my friend's here think I have lost it.
 
Yep, linear growth is a good sign for sure. Pred can actually stunt growth, certainly doesn't promote it per se though of course cytokines that result from inflammation can also stunt/delay it. Hard to know which is doing what. :stinks:

Yes, EN DOES for sure have anti-inflammatory/anti-cytokinergic effect. Now V never bled so I cannot speak to that from a personal place, but I know it "blunts" (V's GI's word) systemic effect of cytokines,TNF and others.


Awesome the the ped is on your side; glad I didn't grate nerves with my proseletyzing (sp?). :)
 
Seriously? Now this diease is just messing with me. Loose bloddy stools and now nothing for over 48 hours. Unbelievable! If you though I was watching the toilet before....Guess maybe this is a good sign?
 
Still nothing! Checked in as promised with doc..they said we can start a VERY slow taper and call back Friday. They aren't worried so I won't worry:shifty:
 
V often goes 48hr without pooping, that in itself isn't worrisome.
Yes, obsessing on poo is a helluva thing, isn't it?
HUGS from a fellow obsessor about everything, not just poo :sun:
 

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