My 10 yr old wss just diagnosed last wk :(

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nani0126

nani0126

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Apr 20, 2014
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my son was just diagnosed last week..I feel he is worse now than before being diagnosed with all the medications.... he is a little ..he weighs 54pds..hes on 10 pentasa daily, 4 prednisones, 6 zins, prilosec, viactid, vit k, d and k. Also 8 pediasures a day. He says all the meds hurt his stomach and hates the pediasure drinks. When do the meds begin to work? Or is this pain something usual with crohns. It breaks my heart seeing him suffer. W h en do I say lets try something else? I dont understand how this works? Ive cleaned out fridge and bought everything gluten, dairy, soy free. GI doc said remicade and 6m..something is next. Is this a normal next step? This is very new to me..literally diagnosed 1 week ago. Any advice?
 
Pentasa isn't a very strong medication, though prednisone usually works pretty fast to help with inflammation...

His GI was probably recommending Remicade and 6mp. This is a pretty normal combination to be put on. I've been on Remicade, and I've been on an immunosuppressant similar to 6mp. If you have any questions, please feel free to ask!

It may also be that the pediasure is upsetting his stomach. I found when I was sick that supplement drinks seemed to cause me pain.
 
Welcome nani0126,
My son was 10 at diagnosis and will be 15 in just a couple of months.
Is he drinking regular pediasure like you can buy at the store or the Pediasure Peptide? When my son was flaring and on EEN the regular Pediasure would give him stomach aches but the Peptide were fine the proteins in it are further broken down and easier to digest.
My son was about 4 pounds heavier at diagnosis and I remember looking at him and thinking how tiny he looked.
My son is on Remicade right now, he started in January and it has been a miracle drug for us. He was on Imuran (a sister drug to 6MP) for many years and it controlled most of his symptoms and allowed him to live fairly symptom free. He biggest issue was once he got up to 77lbs most likely due to the prednisone and getting most of the inflammation under control nothing happened for about 3 years. He was 4'11", he did not gain weight and only grew an inch in that time (most likely due to mild simmering inflammation in the intestine). We were able to get him up to 90 pounds a year ago due to him drinking Pediasure Peptides for 8 weeks he also grew another inch and was now 5'1". Since starting the remicade he is now 105 pounds and 5'3" and continues to grow.
Many kids are on or have done a combo of Imuran/6MP/Methotrexate along with the remicade to great success.
The drugs are scary and it's never an easy decision but when they are working and you have your child back and they are happy, healthy, growing and doing all the things they want to, you just want the meds to work forever.
There is a steep learning curve at first but there are many wonderful people on here who are great resources and provide a ton of support that I would be hard pressed to find anywhere else.
Please have a poke around the Parents of Kids with IBD section there is a ton of information, don't hesitate to ask specific questions chances are somebody has had experience with it.
I'm sorry you had to join our "exclusive club" but please keep us posted.
 
Thanks For the info jacqui...do u have him on a certain diet now that hes doing better...like gluten dairy free products? I even heard a diet called the paleo diet is successful. Can he ever eat normal..I was told to see what foods work for him but being gluten free dairy free really helps so I did a huge New way of shopping.
 
I do not have him on a certain diet we try to the clean eating (no processed foods, as close to nature/natural). I've tried SCD, Paleo for us I just could not get enough calories into him of things that were legal, although some have had some success with it. We stuck with gluten free for a long time, it really seemed to help at first but when we added gluten back in there was no change so while not totally gluten free he doesn't eat a whole lot of it.
Jack really eats pretty normal for a teenage boy, he goes out with his friends and has pizza, goes to McDonalds (though not often). Generally at home I try and keep to the clean eating so he is probably 75-80% of the time.
Keep a food diary and make not of things that bother him. Add one thing back at a time and see how he does. Unfortunately there is no one size fits all with this, what bothers someone as no effect on someone else. The only things that is a big no for us is Popcorn and I think a lot of others will tell you the same thing. No Popcorn, seeds or nuts. Personally we never do popcorn, we don't worry about seeds on rasberries, strawberries, etc but he does not do sunflower seeds, etc. Nuts he does eat in small amounts and chews the heck out of them. He loves fresh cinnamon roasted almonds so he will have a handful every once in a while.
I think that while diet can not cure the disease (unfortunately nothing can right now), it wont bring on a flare (although it can make things worse if you are in one) eating a healthy diet just helps there overall health.
Do you know where his Crohn's is located? Many CD kids are deficient in Vitamin D, B12, Magnesium, Zinc especially if the crohn's is located in the terminal ileum. Also if there is inflammation it can interfere with absorption. It may be a good idea to get his vitamin levels checked as well.
Meds can take some time to become fully effective 6MP 3-6 months and generally are started shortly after or alongside prednisone the idea being that by the time you wean off the prednisone the 6MP has had a chance to take over.
Remicade can work pretty quickly for my son it was with the first loading dose, other have taken until they have gotten through all three loading doses. You have the first dose and then go 2 weeks later for second and 4 weeks from that dose for third loading dose and then it is generally every 6-8 weeks for infusion.
I hope he is feeling better today and the Pred is working to bring inflammation down. When do you go back to the GI?
 
I was diagnosed myself when I was 10 and immediately had a flare as soon as we were told I had Crohn's. I was put on pentasa and prednisolone and lots of vitamin/ mineral tablets. Is it definitely the meds giving him a sore stomach? stomach pain is the main symptom of crohns, it can be a constant pain during a flare up or come as 'attack episodes'. I know its miserable but as an adult at 24 now, I definitely coped better with crohn's at it's worst when I was a child than I do now.
Usually after diagnosis, pentasa is given as its one of the lower-risk drugs with mild side effects then if this isn't successful you are moved onto the next treatment. remicade would be started usually during a flare up or in patients with persistent crohn's, it is a higher-risk drug in terms of side effects but can work wonders for many people. it was the only drug that ever worked for me, and I was on it for 6 years.
I'm sure this is all is just very daunting for you at this stage, I think my mum struggled with things more than i did, please ask away, anything you need to know, I'm glad you found this forum!

take care. Hannah x
 
He goes back on wed. I have limited his pediasure now cuz I notice he throws up more when he drinks it. I wonder how that is going to effective because he is supposed to drink eight a day now hes at 1-2. Hes feeling better today but had a rough night. Said he stomach really hurt and even had blood on toilet paper after bowel. That freaked me out so I called gi and they said its ok..if it continues to call back. Also having insurance issues. Giving me trouble with paying for remicade..I can see I have a long road ahead of me I just hope it gets better for my son and since everyone symptoms are different I am struggling to find at treatment that will help my son begin to feel better....I know this is just the beginningbut this sucks just want to see him back to normal at least a little bit
 
Thanks hannah...good to hear information from someone who began at my son's age and who can give me input to what he's going thru.... at times think I am suffering more than him because he always tells me to leave him alone lol...I just miss my happy playful kid...and it sucks that he is more miserable now after diagnosis then before he was even diagnosed
 
Look into Remistart it is a program by the makers of remicade to help with the cost of remicade and there is no income requirements.
Is he drinking regular Pediasure (from the store)? If so look into a semi-elemental formula we used Pediasure Peptide but another one is Pepatem Jr. they are further broken down and easier to digest. My son had the same issues with regular Pediasure, Ensure, Boost etc. but did fine on the Peptide and was able to drink 8 a day.
Many kids use an NG tube to get the formula in. Some leave it in around the clock and others put in each night run the pump at night get all the formula in and remove the tube in the morning. Takes away the nagging about drinking, getting enough etc.
 
more ??

Thanks...how does the ng tube work? sounds painful...also where do I buy the peptide or does the insurance cover it I cannot find. . it in any store
 
Last edited:
No, I think for some it's odd feeling the first day. Tagging Twiggy930 Tesscorm, supportiveMom
Twiggy's son I believe was 10 at the time and able to put in and out all by himself within seconds. SupportiveMom's daughter just started a few days ago.
There is a youtube video of a young girl showing how it's done. She is absolutely amazing. I think there are a few kids who will skype and show them how they do it as well.
Here's a link to the Enteral Nutrition thread in the parents of kid's with IBD section which may be helpful http://www.crohnsforum.com/showthread.php?t=22753
We did the oral route but I think we have both decided if we have to do it again that he will do the NG route instead of me nagging and trying to schedule the drinks in order to get enough in.
 
No you can't buy it in the store and insurance depends...
Ours covered it after deductible we had a bit of a fight as most cover if it is given through an NG tube (ours would have covered at 100% in that case, but since he was drinking it they covered 80% until our deductible was met then 100%). For insurance purposes you need a prescription for it and Jack was prescribed it under failure to thrive as it sounds like your son is the same case and you need to receive through a durable medical equipment place(DME).
You can order it online without a Rx through Amazon or through the abbott store here http://www.crohnsforum.com/showthread.php?t=22753. Your GI most likely has samples ask we were given a bunch to try to see what flavors he liked and also which ones he tolerated the best.
 
EN is certainly worth looking into! Using EN as a treatment to induce remission usually means going 6-8 weeks without food, the liquid formula only. After the exclusive (formula only) period, EN can be used as a supplement, as Jacque has said, to continue to ensure he receives the necessary nutrition.

My son was older than yours when he stared with the NG tube (almost 17), however, after a couple of sessions with the nurse instructing him, he found it fairly easy to do. Within a week, it was taking only seconds for him to insert. He did not find it painful but did find the sensation of 'something' in his throat bothersome for the first few days.

If you decide to try this, be sure to request a 6-FR tube size - hospitals will sometimes use larger tubes but these are more difficult to insert. Another option is to leave the tube in... the actual NG tube can stay inserted (but disconnected to the pump/formula) so that he doesn't have to insert and remove the tube daily.

:ghug:
 
My understanding is there are a couple types of tubes out there. The one my daughter just got in last week does not come in & out. It stays in and needs to be changed every 28 days. She had a bit of a hard time at first getting it in with the doctor, but managed well. She could not manage it orally. We tried and she couldn't stick to it as her sole source of nutrition.

The NG tube, Kangaroo Pump, Tubing and Peptamin Jr. were all covered either by government health insurance (OHIP hiere in Ontario) or a special government program for the Peptamen Jr. It is her ONLY source of nutrition and that is why it is covered. We did not need to use our insurance for any of it. Keep in mind I am in Canada, so health care coverage is completely different in the US.

There are a few moms that do NG tubes in the states & I believe they do the other tube that comes in & out. I think it is trickier to get insurance to cover it when the tube comes in & out, but I am not sure.

We can buy Peptamen Jr. in certain specialty medical stores here. It is $14.95 each. I know because the hospital ran out for D over the easter weekend & they sent me to a store downtown to pick it up. My 13 yr old needs 5 a day so it would get very expensive if it wasn't covered. Like Jack, Dani is marked as failure to thrive which with that & the listing of multiple treatments not responding is what OHIP wanted to fully cover it. I would bet if we had to go through insurance we would have to have the same.

Though I think this treatment is going to do wonders for Dani, it is not for the faint at heart or someone with a very active life. We are only on day 2 being home (came home from the hospital yesterday!) and we are having a hard time scheduling it with daily life. I am sure we will get into a routine, but right now this is exhausting, even with home care nurses coming in. I hope to find a routine soon.

What is this about night time feeding? I was told at the hospital I need to do this while she is awake (or semi awake) and she needs to be at an elevated state. Can I do this when she sleeps? If so that would be WAY easier!! It would only be me lacking sleep.
 
I think Tesscorm's son, imaboveitall's daughter, farmwife's daughter, Twiggy's son all did/do night feedings. I think they put something under the mattress to get elevation.
 
I am going crazy trying to fit 5 feedings in and school and my work schedule I am already going mad! If I can do it at night it would cut me a break, just will lose a bit of sleep
 
Stephen has always done it overnight - during the day, he was allowed clear fluids (broth, popsicles, freezies, jello, etc.). He would insert the tube immediately before bed, the formula would run for approx 5 hours, while he slept and he would remove the tube in the morning.

The 'timing' was slightly different between exclusive and supplemental because of the difference in dosage. So, when on exclusive, he did need to insert the tube and start the formula a couple of hours before bed because he had to ingest 2000 ml overnight (usually at 250 ml/hr, which works out to 8 hours). But, when he was on supplemental only, his dosage was 1000 ml, so easily done in 4-5 hours.

As far as elevation, S did have some heartburn when he had the tube inserted. The cause seemed to be because the tube keeps a 'flap' slightly open between your stomach and esophagus, so a bit of stomach fluid/acid can escape. I think, off and on, S slept with one or two extra pillows but, you could also try to lift the head of the mattress to give some elevation.
 
My son does EN using an ng tube. He started 6 weeks ago. He uses a size 6FR with stylet. He could leave his tube in if he so chose but he puts his in every evening and takes it out every morning

He is on EN for failure to thrive. He was underweight, 111lbs 5 weeks ago when we started EN. He is now 132lbs. At the time of starting EN, we also found out that the remicade(along with methotrexate) that he was on was not keeping his CD from progressing so we also dropped remicade and are waiting to decide our next med. He doesn't do exclusive EN but 90/10%, meaning 90% of his nutritional intake is the formula by ng tube and then 10% food. He hooks to a pump for his feeding and the pump runs through the night while he sleeps. He had some trouble with the tube in the beginning but the great parents here recommended the tube with a guide wire and since he hasn't looked back. It takes him less than a minute to insert the tube. The video jmrogers4 mentioned is a great video to get an idea of how it works.

Insurance covers the formula, pump, tubes etc. We paid 200$ the first month but nothing since, it was some type of deductible. Every thing comes through a durable medical equipment company and is shipped to our house monthly.

His remicade treatments were every 6 weeks at a high dose, he has now gone 7 weeks without the remicade so we are keeping our fingers crossed CD won't rear it's ugly head. He has remained on the methotrexate but switched from oral dose to the weekly shot. So far so good, he is 3 shots in and has no problem giving them to himself.
 
Im glad lots of u have found treatments that work for your kids..leavrs me hope..sorry for this question if it seems dumb but again im a newby...what is EN and methotrexate...is that the 6mp thing...going crazy with all these names? Also my son is throwing up what I believe is stomach acid..kinda green...he says it burns ..is this normal in the beginning ?or should I be concerned?
 
Methotrexate and 6mp are both kinds of immunosuppressants. Imuran is one too. :) They're considered maintenance drugs that slow the immune system, which helps prevent future flare-ups with Crohn's.

EN stands for enteral nutrition.
 
EN is enteral nutrition or EEN exclusive enteral nutrition. (the formula drinks either as most of his intake or as exclusive entake). Methotrexate is another drug used to treat Crohn's disease. It falls into a similar category as Imuran (Azathioprine) and 6MP.
I would put a call into the GI about the throwing up. Make sure you are keeping him hydrated. We've never experienced that. sorry
 
to back up what jmrogers said about the nasal gastric feeding tube. I also had this for a year when I was 12 as I struggled to drink my drinks. I was on the complete liquid diet where I stopped all food and just drank these drinks to give my bowels a must needed rest and since I had no appetite anyway it wasn't too bad. having the nasal tube inserted took the pressure off knowing I had to drink the drinks. it goes up the nose and down the throat into the stomach, sounds painful but its not, it isn't pleasant but it takes seconds to insert. I had the option of leaving it in or having my mum trained to put it for overnight feeding and removing in the morning. my school and school friends were very understanding so I left mine in.
as for the throwing up, when i'm having a flare and my stomach hurts it can get quite intense it spasms and I always throw up stomach acid, he may need to go on an anti sickness tablet or something even for heartburn, it is another crohn's symptom unfortunately.
big hugs to you, he will get better soon! flare ups do change your personality, they make you want to isolate yourself. you're doing everything right and being very pro-active, it can be a while until you find what works for him but you'll get there!
 
Is he throwing up bile? It usually yellow or green. We have always gone to the ER when my children have been bring bile and had liquids given by IV.
 
My son was also diagnosed at the age of 10 and did EEN (exclusive enteral nutrition) via a NG tube for 6 weeks shortly after he was diagnosed. He found inserting the tube (size 6 Fr with the guide wire removed prior to insertion) easy and not painful at all. He would insert the tube before bedtime and the pump would run most of the night and he would take the tube out every morning. He learned how to insert the tube by having a single 1 hour session with the GI nurses. Within about 5 days he could insert it in about 12 seconds flat (he made me time him once) with no help from anyone. It really was amazingly easy. I don't remember elevating his bed or giving him extra pillows, I think he just slept flat like normal.
 
Twiggy was he nauseous? The only reluctance I have is because of D's nausea. She vomited with the ng tube already. Want to avoid it as much as possible.
 
nani0126,
I'm sorry you and your son are going through this. My daughter was recently diagnosed with Crohn's on March 6. My GI wants to start my eight year old on Remicade and she has already started Purinethol( 6MP, Imuran type drug.) My husband and I are taking Emily for a second opinion. It's not that I think my current doc is right or wrong on treatment approach I just want a second opinion as I am the one that has to live with this BIG decision. This is a great forum for gathering data. I've learned so much here.

I also order Pediasure Peptide 1.5 from Amazon. My daughter drinks four a day and gained four pounds in two weeks. She prefers the taste of these over the ones brought at any local grocery store/pharmacy. A case of 24 runs about $50 +. I've never tried asking my insurance about paying. My understanding is most insurance wants it done via tube to cover costs.

I hope your son's pains go away soon. My Emily prays nightly for all her fellow Crohnies.

~j
 
I have a huge question parents my son was just diagnosed and I have him on lots of medication and he seems better already now I was proved for Remicade wondering if I should still have him do it or continue the diet he's on And medication? I just don't want to go straight to Remicade so early but is this something I should do even though he's feeling better
 

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