Teenage Son with Crohns

[sruberti]

Hi,
My son was diagnosed with Crohns when he was 10.He was very sick and wasn't responding to very well to his medicines. He was put on Remicade and stayed on it for about 4 years with great success. The crohns was 100% under control and his results from his scopes were perfect. We made the decision to come off the Remicade and he stayed on Pentasa. Long story short, 2 years later his crohns is back in full force. We tried to put him back on Remicade but his body rejected it, he had a reaction and couldn't breath and had chest pains.I was in shock since it worked so well for him as a little boy. They said we were going to try Humira next. I don't know much about this drug so any information would be greatly appreciated. I am so worried about my son.

 

[Jenn]

Welcome to the board sruberti and sorry to hear about your son. Remicade stopped working for my son short of a year, but it was amazing while it did work. He's been on Humira for a couple of months now and it's working well. I don't really like the injection, but it's quick and easier than going to the lab for the 4-hour infusion. It's a painful one, we ice up beforehand and use a syringe over the epipen. The loading doses were the worst, you do 4x your maintenance dose, then 2x, then start maintenance. I hope it works for your son too! <hugs>

 

[izzi'smom]

I am glad to hear that REmi worked so well for so long...but I have heard that once you are off of it for a while it cannot be reintroduced.
My daughter and I are both on Humira; it isn't helping her (but neither did Remi). She hasn't had any problems, other than the injection (it burns...it helps to ice well and inject super slowly).
The rates for improvement are pretty high (I think around 40%) and even better for kids for whom Remi worked initially...best of luck!

 

[sruberti]

Hi Jenn, Mom to Mom....wouldn't you take the crohns from them if you could. I would say that to my son all the time when he was small. I heard that the first dose was painful. I was wondering which way to go pen vs syringe. We are waiting for the hospital to call now ,,,they are waiting on the insurance company to approve it...they need to hurry up. I just want him to stop feeling so sick. He is taking meds for nausea right now just so he can get thru school. Thanks so much for your post..I never have anyone to talk to that understands

 

[sruberti]

Angie, Did your daughter just not respond to the Remicade or did she have a allergic type reaction? It seems more and more kids are getting this. When Justin (my son) was diagnosed I had never heard of it. I am going to try and get him on this forum....maybe he can connect with someone his own age that understands what its like to have to grow up with crohns and ways to deal with different situations

 

[Mom2oneboy]

Welcome the the forum! Sorry you had to come here but I think you will find lots of info and support. My son is 10 and just diagnosed in Feb. this year. Our doctor has mentioned Remicade and if we have to go that route I sure hope it works for my son as well as it did for yours. Good luck with the Humira. I hope it helps him quickly. It's so very hard to see our kids not feel 100%. It rips my heart out. (((Hugs)))) to you both.

 

[sruberti]

Shelley, Thanks for the welcome. I just found this forum today and its just what I needed today. Sometimes I feel like nobody 100% gets what we go thru with our kids.

 

[Sascot]

Sorry to hear your son isn't well. I have no advice on meds as we are just starting out on that path. Just wanted to wish you luck getting him into remission again.

 

[sruberti]

Sascot thank you, I hope you have luck also....fingers will be crossed!

 

[Twiggy930]

:welcome:

Just wanted to stop by and say welcome to the forum. I am sorry to hear that your son is not feeling well. It is so hard to watch our kids be sick and have no clear path to make them better. I hope the Humira works well for your son. I am glad to hear that he had success with Remi for awhile, my son (10 years old) is currently not doing very well and they are beginning to talk about trying Remicade. Again, welcome to the forum and see you around in the threads!

 

[sruberti]

Twiggy930,
My son did wonderful on remicade when he was 10. It was a miracle drug for him. I will always remember one of first treatment he received and we were on our way home from the hospital and I had to stop for gas. He jumped out of the truck and wanted me to watch how fast he could run! He felt so good, I cried that night driving home I was so happy. Had I known then it was hard to go back on after leaving it , I would of never stopped his treatments. But....looking forward. I have receieved great info from others that have had success with other drugs. Hope we have luck in the next few weeks

 

[Twiggy930]

Ahhhh that made me cry. That gives me so much hope. THANK YOU!

I hope the Humira works the same way for him.

 

[sruberti]

Me too....I will keep you posted.

 

[LittlebitsMommy]

Welcome to the forum. I really dont have any advice because I am still learning my son was dx in Feb of this year.

 

[sruberti]

Thanks, I wish you and your son lots of luck.

 

[imaboveitall]

Hi, sruberti, nice to "meet" you :hug:
My Violet was also age 10 when dx, she is now 14.
She uses formula feeds as treatment , there's a great gal on here, Tess, whose 17 y/o boy is also on them, I hope she shall see this thread and offer some info too.
The feeds were Violet's first and for three years ONLY treatment and she was quite well on them gained insane amts of weight and had zero GI symptoms.
She used NO DRUGS that entire time.
Her disease is confined to the TI and this treatment is known to work best on small bowel disease, less well on other areas BUT the nutrition aspect is worth it for any pedi pt in my (and her doc's) opinion.

I can sense your emotions via your posts, I have been there and know it all to well, when they FEEL ill vs being ill but FEELING great, it is pure hell for us mothers. :hallo3:

with love :kiss:

 

[izzi'smom]

Angie, Did your daughter just not respond to the Remicade or did she have a allergic type reaction? It seems more and more kids are getting this. When Justin (my son) was diagnosed I had never heard of it. I am going to try and get him on this forum....maybe he can connect with someone his own age that understands what its like to have to grow up with crohns and ways to deal with different situations

No response. It takes a while to gauge because of the cyclic nature of the disease, but after being on it a number of months, increasing the dose and decreasing the time between doses, we made the determination that it wasn't effective. We tested her HACA and Remi levels...she was + for antibodies.

 

[sruberti]

No response. It takes a while to gauge because of the cyclic nature of the disease, but after being on it a number of months, increasing the dose and decreasing the time between doses, we made the determination that it wasn't effective. We tested her HACA and Remi levels...she was + for antibodies.

Oh, ok . I really need to get myself re-educated on everything. There has been some changes on treatment and so much more information out there now. I have kinda been on cruise control for a few years since he was in remission and now it's like trying to study for an exam at the last minute. I'm sure he feels the same way, he texted me last night from his girlfriends house and asked if he could try and eat what they were serving for dinner. He has honestly forgotten and is so afraid it's gonna hurt him after.

 

[Tesscorm]

Hi sruberti,

I'm sorry your son's remission has ended. It is so hard for us parents to know they aren't well. And must be frustrating for your son, to feel like he is 'starting over' again. :ymad: Your comment that your son txted to ask about a food sounds so familiar; when initially diagnosed, my son often did that too.

As Julie mentioned, my son's treatment has been Enteral Nutrition since May 2011. His only medication is an antacid. My son's crohns is primarily in his TI but tests have also shown on/off 'patches' in other areas. The first six weeks of his treatment were difficult - no food, formula only, overnight through NG tube but, his maintenance treatment has been the same formula at half dose, 5 nights per week, during the day he eats a regular diet.

He responded well, regained the weight he had lost prior to diagnosis plus some (approx. 30 lbs in all!), has tons of energy and almost no GI symptoms (every once in a while feels 'off' for a couple of days). EN hasn't eliminated ALL inflammation but seems to be keeping it under control and provides him with much of his nutrition (one less worry for me:thumleft.

Where is your son's crohns located? Perhaps you can ask your son's GI if enteral nutrition would be useful. It's not as commonly used in the US as it is in Europe and, I believe, even in Canada - hence, if your son's GI hasn't mentioned it, you may have to initiate the discussion.

Good luck!:thumleft:

 

[sruberti]

Thanks Tess,
Tis is the 3 rd mention of this Enternal Nutrition since joining. The doctors haven't mentioned anything as of yet. Is this something that is done when other meds are not working or is this alternative approach so your child isn't taking drugs that can have scary side effects? I do remember years ago we were thinking about that since he wasnt gaining any weight and then he started to. Not sure if it was the same stuff and i think it was just an added suppliment type thing. How wonderful that your son is only on a anacid. How did he handle the whole thing in the beginning? My son is definitely fighting me on certain things at the moment. Refuses to try different foods that are milder....he'll just refuse. Simple things like no milk try almond or soy milk instead...simple right? Mad about the whole thing and being 17 isn't helping. His biopsy report said some in large and they found disease in the beginning and end of his small...so they are thinking pretty much his entire small intestine is inflamed. Had a fistula that is being treated now. Does your son
use this forum also? I think it would be a god sent if Justin would try and
join....I'm gonna work on him.
Thanks Tess...I will keep in touch

 

[mum16]

Hi Sruberti
Welcome. I just joined the forum a couple of days ago, and yes it is great. My daughter was diagnosed a year ago through emergency operation, is now doing well on Pentasa / Imuran. I have had the same feelings as you all the way, your message made me cry all over again. My daughter was the same as your son with regards to food, now she is slightly better. I can't persuade her to go on any forums, I wish I could, because the two of them would have lots to talk about.

I am so sorry he is feeling worse again, and wish you all the best. I hope you hear from the hospital soon, those waits are the worst, you feel you want to go and kick in the door of the insurance companies...

Fingers crossed

 

[Tesscorm]

Studies have shown that EN has comparable success rates at inducing remission (in children, not sure about adults) as steroids; success at maintaining remission is not as high as with other treatments though. This was the treatment offered to us when my son was diagnosed, steroids were only briefly mentioned. So, with the nonexistent knowledge that we had at the time, we honestly didn't know that we even had any options. :blush: But, am very glad it was offered as it does seem to be working relatively well and with zero side effects!

The six weeks without food was difficult but manageable. He learned to insert the NG tube easily, comfortable with it within a week (takes seconds to do). The initial schedule of the feed was a bit annoying to him as we had to start by 9pm in order to finish in time for school but there were ways to work around the schedule when needed. Now, the feed runs only 5 nights/week, 4-5 hours/night (easily done while sleeping). He can choose his two nights 'off' the feed which accommodates sleepovers, etc.

So far, my son's handled it relatively well, however, his Crohns hasn't affected his day-to-day life to a huge extent. I can fully understand re asking them to make 'small' changes - I'm so thankful that his diet has not really had to change as this would have been a nightmare - he's so picky!! :lol: I've read on this site re the benefits of carrot juice, am trying to get him to drink JUST a quarter cup each day... so far, no luck! :ymad: (But, I am now drinking it for my own health! :lol2: Hopefully, setting a good example!) . He has made an effort to try to 'cut down' on the worse of the junk but certainly has not cut it out.

I know, at times, having crohns is a challenge for him... he wasn't well over the weekend and then, last night, was up at 1:30am because the 'sound' of the pump was bothering him, he was very frustrated and mad... and, I know that after one year, it wasn't suddenly just the sound of the pump... I so much wish I could take this from him but all I can do is try to alleviate as many of his challenges as I can (i.e., suggested he not run the feed last night, that I try to 'muffle' the sound with a towel, etc.). We've worked out a couple of things between us that, maybe, helps a bit... I promised him that I would stop regularly asking 'is everything ok' :blush: and he promised he would tell me if there were any GI changes. Also, when he was upset once, I was trying to coax him out of his frustration, etc. and he asked that I just 'let him be mad for a while', so now I just give him space/time to be frustrated, mad, etc....

I don't 'think' Stephen uses this forum, I have mentioned it to him, I know he's 'visited' for info but don't think he's joined (but I could be wrong ).

Good luck, I hope his treatment can commence soon on brings quick relief for Justin.

 

[sruberti]

Tess I laughed when you said you made a deal not to ask everyday is he ok......that's me lately. I ask him is he ok, before school, when he gets home from school, after dinner and before bed....I can't believe he hasn't tried to muzzle me yet. Lol My husband will say "leave him alone"....whatever. Ha
I'm gonna talk to his doctor very throughly next time we speak, I've been writing all my questions down. Thanks again

 

[sruberti]

Rikki, I only joined as of yesterday and I have met the most caring mothers here. I read the post send in reply and I find myself tearing up too. My son is also on pentasa and has for about 6 years. I'm gonna keep talking about the forum and maybe he will look at it when he is ready. Good luck to your daughter and you. I will keep my fingers crossednas well

Stacey

 

[Jenn]

SO hear you, would totally take on the disease for him if only I could. It's so hard to feel so helpless. It took awhile to get Humira going for us too, between insurance approving the "specialty" class of the drug and having to go through a mail order pharmacy, I was beside myself, anxious to get him feeling better. He should be able to learn to do the shots himself too, great way to feel some control. I have not yet been convinced that diet helps/harms yet, it's so individual and mysterious. The board is great, we all share the same concerns for our kids, more than my local friends can understand too.

 

[Tesscorm]

I only 'vaguely' talk about Stephen's illness with my friends, not a secret at all but, I know they won't really understand my worries so what's the point??? (Except for the friend whose daughter also has crohns.) They certainly care and sympathize that I'm worried about Stephen but, unless you are actually faced with the decisions, I don't think you can really appreciate the heartache of making them, or the worry of always waiting for the other shoe to drop! Because my friend's daughter was diagnosed two or three years ago, I can honestly see the difference in my ability to truly understand the worries then compared to now, when my own son has been diagnosed. It was never that I didn't care (!!), I just really couldn't appreciate the depth of the concerns. (Hope that made sense?? )

 

[DustyKat]

Hi sruberti and :welcome:

I am so sorry to hear about your son...:hug:

Unfortunately, in the US Enteral Nutrition is not widely used as a first line treatment but is very common in most other countries. As Tess has said in children it's success at inducing remission is comparable to Prednisone but remission is harder to maintain on that alone. Research also suggests that it is not as effective after its initial use. Having said that, although remission may not be achieved via EN it does have other benefits if used in conjunction with other conventional treatments. It rests the bowel and provides nutrition so likely can assist other treatments to achieve what they are mean't to...remission.

We haven't been down the biologics path but there are many success stories with Humira here and I so hope your boy becomes one of them! Bless him.

Good luck hun. I hope you stay around cause it is lovely to have you here. Welcome aboard!

Dusty. xxx

 

[DustyKat]

@Tesscorm, does Stephen use earplugs?

My kids used them in hospital and they are still using them now! :lol: They just use the foam type that easily mould into the ear...

Dusty. xxx

 

[Tesscorm]

Dusty - I was actually thinking about the earplugs this morning Am going to drop by a shop later and pick some up... Our pump is loaned to us from a medical supply organization, was thinking I will call them and see if there is a newer, quieter model available.

 

[imaboveitall]

Tess, ask if they can give you the Enteralite Infinity. Almost silent. :thumleft:

 

[my little penguin]

Just wanted to put out there- En can be consumed orally without a tube or pump.
DS was on peptamen jr EN for 9 weeks all oral.
He still drinks some everyday now with food.
ELemental drinks such as Peptamen/elecare/neocate so they only use the first so many inches of the small intestine.

HOpe you find relief soon.

We are looking into new drugs as well

 

[Tesscorm]

Julie - Thanks, I remembered that you've mentioned V's pump was almost silent.

Got the earplugs, we'll see how tonight goes!