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Clash

Clash

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Apr 26, 2012
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I posted in your story discussion the other day but realized this is probably a more appropriate place. I have read through many posts since my 15 year old son's diagnosis in March. He has been in an active flare-up since Aug. 2011. We've been on Pred. for five weeks with no improvement according to last weeks ct scan. We are waiting for Ins to authorize Remicade and hope to start next week.
I was wondering about a couple of things. First, throughout all of the testing my son has not had elevated SED rates or CRP rates even though the colonoscopy showed severe inflammation in his ileum. Has anyone else had this experience.
I am now well accquainted with the horrible side effects of steroids...WOW is all I can say about that so far. But what should we expect/look for when they start the taper, as far as side effects and such.
Oh and any tips on how to combat the insomnia side effect of Pred? It seems to be a vicious circle. He can't sleep but an hour or two for 4 or 5 days then his body just crashes and the joint pain escalates. This has resulted in 1 to 2 absences a week depending where in the cycle we are. He is already on a modified schedule due to fatigue and pain. I just want to make it through these last 4 weeks and hope the Remicade comes through for us.
All advice/info welcome. This forum has been a life saver!
 
Hi Clash and welcome! Sorry to hear about your son. Mine was just recently diagnosed with Crohn's too so I'm still in the shock and awe phase.

No advice on the pred. My son was only on 40mg for a little over a week and we've been tapering off....3 more days to go. We had some moodiness and it seemed to make him run a little hotter but no sleep issues. I'm sure someone will come along with more advice on that.

I too will be SO glad when school is over. He had perfect attendance last year but since December has missed due to doctor appointments and not feeling well. It will be nice not to have that pressure!!

Our next step is Remicade, as well. Hope it works for both our boys!
 
Oh, I fogot to mention that my son's inflammation markers are within the normal ranges even though he's a swollen mess inside. In fact, when you look at his labs they don't look all that bad. It's an added frustration and makes it more difficult to treat the disease when you can't rely on those numbers.
 
Thanks for the welcome and the reply! This has definitely been a whirlwind. My only experience with Crohns before this was my husband's/C's stepfather's niece. And hers is a really severe case.
I was certain they would put C on the pred and it would take care of the inflammation, it floored me when they said it wasn't working!! C is at 40mg a day too and we hope to start the taper next week, or at least that is what the doctor mentioned. He said Chase is getting all the horrible side effects and none of the benefit.
I've never looked forward to the end of school so much in my life!! I really hope the remicade allows our boys to go into next year without all the pressures being sick and can just enjoy(as much as anyone enjoys homework/tests!) being a student!
 
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Oh just saw your other reply, thank you so much. It is so aggravating, I mean his intial bloodwork low HBG, HCT and really low ferritin, but otherwise normal, the HBG and HCT has come up but the ferritin still remains low and now WBC count elevated but still normal rates on inflammation markers. So when he had a severe bout with pain and vomiting and we went to ER until they did ct scan they kept stating they didn't think he was in a flare-up because he was on pred and his inflammation markers were normal. Discharge nurse gave me a stomach flu info sheet but prescription called for Lorcet and zofran...she said we don't generally give pain meds for stomach flu...Ummm that would be because this isn't stomach flu...ugghhh.
 
:welcome: Clash!

Welcome to the forum. Sorry to hear about all you have been going through. My son is 10 and was diagnosed with Crohn's in early February. We also have bloodwork that comes back looking normal but his symptoms are terrible! We are just now being sent for a fecal calprotectin test, just a stool sample, and I'm told that this can be a more accurate measure of inflammation in the intestine. Given that this test is only just now being offered to us I'm thinking it is not always a commonly offered test. It will be interesting to see what it shows.

My son was on 40 mg of pred for 5 weeks and we have been tapering by 5 mg per week. He is now down to 5mg and will be off it in 5 days. He too experienced many horrible side effects. At 40 mg he had terrible insomnia. We just rode it out by letting him watch movies on the ipad in bed. Not an ideal solution but it was better than him lying awake thinking about things. He also experienced joint pain, mood swings, horrible night sweats and an inability to concentrate (especially to read). Poor kid got all of these side effects and the pred didn't put him into remission! I think it did stabilize him but it certainly didn't induce remission.

The taper has not been that bad. We have been doing exclusive EN, switched to this when it was clear pred wasn't working, the whole time he has been tapering so I am not sure if this has had an effect on things. The pred side effects I listed above went away quite quickly as we tapered. Now we are just left with the moon face which he doesn't care about but I will be happy to see disappear. As we have tapered his symptoms have not particularly gotten worse which is a good thing I guess, the EN hasn't made them better either though...

My son has also missed a tremendous amount of school. He has been unable to go for more than 2 - 3 hours a day since the end of January. I have had major stress about him missing school but I have recently been able to let that go. I now don't care about school I just want him better. We are bringing work home and keeping him caught up as best as we can but until we get him feeling better school is just going to have to take a back seat.

We are also likely headed for Remicade...

I am glad you joined the forum and I hope to see you around in the threads.
 
Thanks for the welcome! I was also wondering about growth rate failure? The GP on yearly physicals never seemed to be concerned with Chase being small. The GI was suprised because of the heights of his father, me and older sister. The Peds GI said he would do a bone age test but that Chase's flare up had to be cleared up and him not on meds to get any substanial benefit from nutrient, vitamin, diet changes. I came home and looked on a growth chart and if I'm reading it correctly Chase is right at or below 5% on both weight and height! Yikes that seems a little frightening but not sure how to approach the docs about this since they have seen him and aren't jumping about it.
 
Okay I am slow..my last post was in response to izzi'smom but Oh My goodness your son's experience with pred mirrors C's. I have felt awful about movies after midnight and on really bad nights xbox when I see there is no hope of sleep coming soon! I tried taking everything and just having it quiet and dark to no avail, then reading, radio nothing puts him there. He will say Mom I'm not the least bit sleepy I know you think if I'm not active sleep will come but I try that and my mind just jumps from subject to subject but no sleep. I feel so bad for him. He said the other day he just wish he could feel sleepy and sleep not tired and sleep because it is not the same. Breaks my heart.
Thanks for all the info, and I hope that Remicade is the right drug for your son and puts him into to remission!!
 
Clash said:
The Peds GI said he would do a bone age test but that Chase's flare up had to be cleared up and him not on meds to get any substanial benefit from nutrient, vitamin, diet changes. I came home and looked on a growth chart and if I'm reading it correctly Chase is right at or below 5% on both weight and height! Yikes that seems a little frightening but not sure how to approach the docs about this since they have seen him and aren't jumping about it.
Click to expand...

Have a look at the enteral nutrition treatment. I think it is a great treatment. Even if it doesn't get them into remission it still gets great nutrition into them in a form that is easier to digest and there are no side effects. If you are doing it just for nutrition I don't imagine there is a need to do it exclusively either. My son has been on it for the last 5 weeks exclusively to try to get him into remission. We haven't got remission but we do have him back to his pre-Crohn's weight! He gets the formula via an NG tube overnight and then just has clear fluids during the day. He has found the NG tube no problem at all, it literally takes him 13 seconds to insert it and he doesn't even gag or cough!!! Not eating has been a challenge but he has managed ok. He is really looking forward to some noodles next week when he can begin eating again!

From what I hear this treatment is not as common in the US as it is here in Canada. This was the first treatment mentioned to us at diagnosis but we opted to go with Prednisone instead as it just seemed too hard. Looking back with hind sight we wish we had gone straight to EN, even my son thinks that and he is the one not eating!!!!
 
So he only uses the NG tube at night? I've researched this a bit and I am intrigued by its benefits, C isn't thrilled about it but at 15.5 years old he is 5'3 and 100lb actually 95 before we started pred. and I just feel he needs some type of supplementation. I have been kicking myself for not pushing the issue at his yearly physicals but at the time he wasn't showing any symptoms of disease, although the GI thinks he's had this for years. When he was in Elem. school he would vomit after lunch every day in 3rd grade. No complaints just vomiting I took him to the pediatrician and she thought he was being served lunch to early which made little sense to me but after about a month it subsided. I thought lactose intolerance but he was having dairy at other times and not experiencing problems, I know wonder daily what if I had pushed harder. Ughhh. Thanks for your advice!
 
Wow...my spelling and grammar mistakes are glaring...my apologies it was a late night night with C and I'm a little fuzzy brained today!!
 
:welcome: Clash!
My daughter was just dx earlier this week. We are still waiting on blood work to come back. She just started on Pred yesterday.
My son was on Pred for 9 months (due to allergies) and the only side effects he had were moodiness (holy mood swings Batman was a constant phrase in our house) and his appetite soared.

I would ask the GI about melatonin. I've heard good results with that. But, of course, you have to be very cautious about medication interactions.
 
Clash said:
Wow...my spelling and grammar mistakes are glaring...my apologies it was a late night night with C and I'm a little fuzzy brained today!!
Click to expand...
I've been forgetting people's names I've known for YEARS due to my lack of sleep. :duh:
 
Thanks, Lilmamma! I understand the Holy mood swings Batman...for sure!! At 15, you have your normal teenage angst and now it seems we've added gasoline to the fire!! Hope the pred works for your daughter!!
 
Just wanted to say hi - sorry your son is struggling. I have no knowledge of pred as my son has only had the EN liquid diet (Modulen seems first choice here). He had to have the NG tube in all the time and went to high school with it in - no one teased him and he seemed ok about it. We just did normal "meal times" during the day with the last one around 9.30pm, so no experience of the pumps that alot of the other kids seem to use. We are starting on Aza this week which is nervewracking!
 
Hi to you to Sascot! Yeah, I feel a little lost about it all right now. I am going to push for the vitamin testing and what should be done about his growth. I'm wondering would there be any harm in giving him an Boost type drink until I get a more definitive plan in action? I'm not familiar with Aza? I know all the risks(however small they may be) with some of these Crohns meds can be quite frightening. When they first said Remicade, right off the bat..5 mins after diagnosis, it really freaked me out. I spent the next week researching every study I could find! Is Aza only on your side of the pond or on this side too? I've pred. 6mp, azithroprine(sp?), Imuran, Remi, Humira. I know these med decisions are hard I pray Remi improves C's QOL. Sending good thoughts your way for the new med!
 
Hi Clash and :welcome:

I'm so sorry to hear about your boy...:hug:

One of mine has been on Pred but he didn't have any side effects to it! Unusual I know but then it didn't work for him either...:eek2: C has all his dose in the morning doesn't he?
Unfortunately many can attest to having kids whizzing around at all hours of the day and night!

EN is certainly something to give serious consideration to. As has been suggested, it may not achieve a state of remission but failing that it can certainly stabilise someone's condition by resting the bowel and providing adequate nutrition. There would be no harm in providing oral nutrition now. Many do use NG tubes but others do use it exclusively via the oral route.

Where is your son's Crohn's located?
Have a browse through this article in the wiki about vitamins and minerals and make a list of what you think may need testing. Ensure they continue to monitor his Ferritin and Vit D and definitely add Folate and Vit B12 to the list.
It is not uncommon to read on the forum of people have normal inflammatory markers when disease is raging away. My daughter was one of those people.

Azathioprine is the generic of the brand Imuran. Good luck hun and welcome aboard!

Dusty. xxx
 
DustyKat, thanks so much for the greetings and welcome. My's sons ileum is where the flare-up is the doc said 18cm. Funny thing though there was this small carpet burn looking place on the entrance back into the colon and GI said that could be Crohns too and could eventually get worse. I mean in contrast to the pics of the ileum which showed this thickening lumpy/bumpy mess the colon was a smooth and pristine excepting that one little spot. I think that is when it really hit me, in recovery, when the GI handed us that photo. He said C is really sick and we need to start treatment right away and handed me that pic. My heart just fell.
I am going to peruse the links you sent!Yay, a homework assignment! Anyone else feel like student in law school with all the research they are doing? Haha Wish I had researched this much in college!!
So how long was your son on pred? Our GI said he wanted C off the steroids as soon as possible since they weren't seeing a benefit and was going to schedule the tapering to start with the first Remi dose which he felt would be the following week but that was 2 weeks ago. I'm just ready for the tapering to start.
Any suggestions on which Boost type drink to use until the next dr. appt?
 
Heya Clash :bigwave:
YES to the benefits of formula feeds. My Violet dx at age ten has been on them since dx nearly FOUR years ago, never exclusive, always via NG tube which she places herself at bedtime and removes in the a.m. There's a gal on here, Tess, whose teen boy Stephen is also on them long term, she will likely step in here and give you some info too.

Here are V's stats to sell you on the idea:
Before dx: 55in 78lb
At dx after seven weeks of illness: 55in 59lb (this is life threatening weight loss)
Four months after starting formula feeds: 57.5in 99lb
Current, 3y 7mo later : 63.5in 138lbs

Her disease is also confined to TI. Formula feeds are known to work best on ileal disease.

Her bloods are always normal/near normal, highest her CRP has ever been was 2 and that was at dx near death.
Fecal inflammation marker is always elevated BUT also doesn't align with her outward symptoms.

She used NO DRUGS at all for the first three years and was symptom FREE.
She began symptoms (fatigue mostly) in Oct 2011. Only PRED has worked to help her but she also has dysautonomia and I suspect pred corrects some of her issues associated with that. She feels excellent on it, sleeps well, no appetite increase, no moodswings, but she is a weird case all around.

Hope this helps!
 
Wow those are great improvements in growth! My husband said he is going to pick up a variety of flavors today and we are going to try all of them out. I'm going to bring up all the benefits I've found at the next GI appt. Fingers crossed for seeing him next week but really feeling that may not be the case.
Noticed today that C has this huge bruise on the bend of his arm. We were at ER Friday before last and the tech was really digging around for the vein. C was white knuckling it but we thought it was odd her having to dig for a vein as usually he is a needle's dream.

I noticed you said V does her EN at night, I am assuming it doesn't interfer with her getting sleep? And noticing the brand is that prescription? And if so, why that paticular one?
Chase is on 40mg of pred right now 20mg morning/20mg after supper he was taking it all in the morning to begin with but GI switched it and also added Ferrex that is on top of nexium and levsin.
Thanks for your post, info and welcome!
 
Hi Clash,

My son was diagnosed in May 2011. He has just turned 13.

We had a hell of a time trying to get him off prednisone. Three times I tried and everytime he got to 15 mg his symptoms would all reappear, starting with diarreah, abdominal pain and fevers.

He was not on prednisone at the time he started Remicade in February, but after his first dose his symptoms began to gradually disappear. A week or two after his final loading dose, he started to feel well again like his old self.

Hopefully if your taper is timed with his starting Remicade, you will not have any trouble tapering off.

I hope Remicade works for your son as well as it worked form mine.
 
Thank you so much willsmom. I am really hoping he doesn't have issues with the tapering and that the Remi is what puts him into remission. It eases my mind to hear stories like your sons and his experience so far with Remi. I know it has to feel good to have him getting back to his old self again!!
 
Right on, willsmom.

Clash, the type of formula she's on is peptide based, meaning, very "broken down" and therefore max digestibility/absorption.
She was started on regular Pediasure and it made her GI symptoms worse; she simply could not break it down at dx, her gastric motility was so impaired, though the only disease was lower down.
(Yes, this makes no sense. Welcome to my personal hell :voodoo:)

However, after 30 days or so, she began to eat any and everything and does.
She has ZERO GI sx to this day. That's more common with ileal disease as opposed to cases with colonic involvement.

Nope, doesn't bother her sleep, she has one of the best pumps out there, the Enteralite Infinity and it is almost silent.

Her doc is a big proponent of formula as adjunctive therapy as these kids almost always have some degree of malabsorption even when they are consuming enough food.
The stress relief of knowing that no matter how little she may eat on any given day (which is rare as she eats a ton), she'll still get her cals and nutrients that night. Compromised nutrition isn't something her doc nor I are willing to entertain, not when she was nearly starved to death at dx.

Tess's boy is also DRUG FREE; in some cases the feeds are enough to maintain them as they have anticytokinergic effect as well as nutritive.
 
Welcome aboard, sorry to hear about your son. No experience with Pred but Remicade worked great for my son while it lasted.
 
Ooooh, im above it all, I am so using your statement of "these kids almost always having some degree of malabsorption" as the starting point of my convo with doc about diet, nutrition, vitamin testing and finish up with some selection of "my peace of mind" that you also mentioned!! Thanks so much for your advice. C is 15 and a half 5' 3" and before pred he was 94 lbs he has gained weight with the pred now I think he is 100.
 
Thanks Jenn, we really are hoping that Remi is the drug that works for him. So glad it is working for your son!
 
Weight gain w/pred is not true lean body mass accrual; it's a lot of water and fat so don't be misled.
His doc is likely well aware of the benefits of EN; it's not a weird or alternative tx, like naltrexone, it's widely used abroad.
V's doc said the reason it's not more commonly prescribed in USA isn't because they don't know it is efficacious, but because Americans won't comply. Kids resist the idea and parents don't enforce.
V was not given a choice in the matter and was too sick to argue then anyway.

If you saw a photo of her at dx and one four months later that'd convince you to try it. It's the ONLY treatment with ZERO adverse effect.
 
:hug: and welcome.

My little one is on Peptamen Jr. We did formula only for 9 weeks.
OUR GI was surprised we wanted to do it but was on board.
Ds does not use a tube - he drank all of his orally. He is on half dose now so he drinks about 3 boxes a day.
Ours is prescription but you can order it on your own from nestle nutrition in the US.

http://www.nestlenutritionstore.com...er?rank=7&v1=rank&asc=1&catpath=pediatric.2.2

WE use our Durable medical clause in our insurance and it's all paid for.
so the script comes in handy.

Your GI can give you samples or nestle will send you some to try.

Abbott also makes their versions as well
http://www.abbottstore.com/child-nu...bklist=icat,4,shop,childnutr,pediasurepeptide
 
imaboveitall, I'm glad you said that about the steroids because even though there has been weight gain I've said all along it doesn't really look like solid weight gain more of a swollen look.
 
one more thing we did regular Boost kids in the beginning before we knew about crohn's it helped some but soon lots its ability to "keep" his weight up as his disease got worse since it wasn't broken down.
elementals only use the first part of the small intestine so absorption is easier.
 
It is a swollen type look on pred, pred causes fluid retention which is prob why it helps V so much, as it expands her blood volume and aids her dysauto thereby.
Excellent advice from MLP and if your boy can drink it, awesome! If he hates the taste, you have the tube as a backup.

In other countries EN is used before pred is offered, this was the case with Tess's boy. That was the line that The Saint (V's doc) used to sell us; he said it has the same efficacy as pred. I was so anti-drug I was all over it.
 
Hi Clash,

Welcome to the forum... I see you met lots of the really helpful and supportive parents here! :)

As has been mentioned, my son's only treatment, thus far, has been enteral nutrition. He was diagnosed last May (at 16) and EN was the treatment offered to us. Steroids were mentioned but vaguely and definitely as a treatment they did not prefer. As we knew nothing about Crohns and the treatment was to be started less than 24 hours later after diagnosis, we did not question it nor had any time to research.

I am so glad this was offered to us! :D He had lost approx. 20 lbs prior to diagnosis and was at 127 lbs. He did six weeks of formula only, gained approx. 10+ lbs. and then, once food was reintroduced, reached 160 lbs within the next six weeks. He has been at 155-160 lbs since then. He ingests his formula overnight, thru NG tube. He learned to insert the tube very quickly and it takes only a few seconds to do. Initially, at full dose, the formula took 10 hours to ingest - this was a bit inconvenient with regards to schedule but could be worked around and was only for six weeks. Now, at half dose, it takes 4-5 hours, easily done while sleeping. It doesn't interfere with his sleep (although, once in a while, he complains about the pump's noise - I need to get him Violet's silent 'Ferrari' model ;) )

His only medication is an antacid (nexium); the formula provides him with tons of nutrition and zero side effects.

Is he in remission??? Who knows! :yrolleyes: His latest results showed improvement in HGB (finally reaching normal levels), a very slight lowering of his CRP (19.5 to 17) but a rising Sed Rate (4 - 22). Ultrasounds and MREs (in the fall) continue to show some inflammation but smaller/fewer areas. BUT, he has very few symptoms, feels great and has lots of energy.

With or without other treatments/medications, it will provide your son with nutrition and may help reduce inflammation.

I also think it's something that should be discussed with your son's GI - really, there doesn't seem to be anything to lose! :)

Good luck! I hope something, remicade or EN, are able to get your son feeling well soon! :ghug:
 
Tess, thanks so much for all that info! This forum is great, I've been so overwhelmed by all the info that has been thrown at me from doctors. But it's just info, quanity not quality, now I'm overwhelmed by all the support and that feeling of free falling without any net is starting to subside. I know this emotional rollercoaster may be a lifetime ride but knowing there are others that can fully understand the highs and lows(even though I wouldn't wish this trip on anyone) makes the journey a little easier to travel. Thanks guys!!
 
New to forum, wondering if I should go to er...need advice

Hi, I am new to the forum. I was diagnosed with crohn's in 96. Had a resection in 96, and have been through periods of remission and flares. I have been on everything under the sun (meds). I currently have not been on any meds for close to 4 years. For the past two weeks I have been in agony. This has been one of the worst flares since I was first diagnosed. No blood/vomiting, but the stomach aches I am frequently getting are so intense, I am literally doubled over in pain and feel like the wind has been knocked out of me. I have lost weight, cannot digest anything, and feel extremly weak. I am a stay at home mom to my 21 month old, and worry about all of the inconveinces it will cause if i head to the er. I know it sounds ridiculous, and I need to make my health a priority. I currently do not have insurance, and am in the process of getting it. I can feel that something is for sure going on with my cd. I also worry that if I needed to be admitted, would they even do so considering I have no insurance? Thank you
 
jblai03 I'm also new to the forum. I am so sorry to hear you are suffering. Your health is the most important thing and from my perspective if you feel that an ER visit is in order then I would go. They have to treat you at the ER and because you can't know exactly what is going on inside your digestive tract I think it would be best to have it checked out. I don't know the ins and outs of hospital admissions as it pertains to insurance but I'm sure someone on the forum will be by with some suggestions on that. Welcome to the forum and I hope that you get the help that you need!
 
Hi,

I'm so sorry you're feeling so badly. While you do need to make your healthy a priority, it's certainly not silly to worry about your child and how things will run at home. Certainly a valid worry for any mom! Is it possible to alleviate your concerns by arranging for some help from family or friends?

I don't have any advice re the insurance issue.

Also, you may want to create your own thread and re-post your comments/question in the General IBD Discussion forum or in the My Story forum - you may receive even more responses there from members. There is also another forum, Parents with IBD (this one is Parents of kids with IBD ;) ), who may be able to offer support/suggestions regarding their experiences.

Good luck, hope you're feeling better soon! :ghug:
 
Hi clash...
late to the proverbial party (I am participating in "screen free" week with my kids, which means cheating only when they are not around ;))
BUT shocked to hear that your doc recommends no supplementation until Crohn's is under control and pt is drug free...I am going to guestimate that the majority of Crohn's patients do NOT fit these guidelines and that any bit of supplementation, regardless of the absorption rate, has the possibility of helping.
We also did Peptamen jr via ng for a month...it helped! It was also nice not to have to fight dd to eat for an entire month :)
 

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