New here and confused about meds

[griffin123]

Hello, I'm new here and need help.
My son got diagnosed with CD in January of this year right before he turned 13. His only symptom was failure to grow, he weighs 74 lbs and he's 4'6". He's never had the diarrhea or stomach pains.

His GI specialist put him on prednisone for about 8 weeks and we tried sulfasalazine but he was having diarrhea with it so she switched him to pentasa. I didn't start the pentasa right away and when he got off of prednisone he had a bad flare up, which was new to us because he never had those symptoms before, so the doc put him back on prednisone and we started the pentasa. Now he is on pentasa and iron pills and it seems like he's doing fine but we moved from Oregon to Idaho so we switched GI doctors and his new one took some blood work and his inflammation level is at 26 and his iron is still low after only being on the iron pills for a month. When we started this whole thing his inflammation level was at 28 so I feel it is going down but the GI doc doesn't think it's gone down enough. This doc wants to fight it aggressively unlike his old doc. He wants to start 6 MP which we started last Friday and in the meantime he wants to see if my son's insurance will cover Remicade and if it does he wants to start remicade and have him do it for a year to get the inflammation down and have him start growing at the age he needs to grow which is now.

I feel maybe we should just stick with the 6MP and wait 6 weeks and see how it does but the Doc doesn't want to wait 6 weeks and see, he just wants to start the remicade as soon as possible.

So I guess i'm just wanting some advice or information on what you parents have gone through with your children. I just feel since his only symptom is not growing that he's pushing the bigger meds too soon and something easier can be done.

Is there any parent on here where their child's only symptom was not growing and took these meds?

sorry this is long and probably all over the place but thanks for reading!

 

[Mehita]

Welcome to the Forum, griffin123. I'm sorry to hear your son has Crohn's. This is a great place to ask questions though and get support!

Do you know where the inflammation is exactly? Does he have fistulas or abscesses? Something to warrant jumping to Remicade? I assume scopes were done?

Some doctors do like to start with the big meds first, but personally, I don't care for that theory since these kiddos have their whole lives ahead of them and will likely need medical treatment of some sort for decades to come. Unless they really need it, why push it?

It sounds like you're uncomfortable with the idea as well. You are the expert on your child and if jumping to Remicade doesn't seem right to you, it might be worth a second opinion. It seems awfully aggressive to me...

Let us know his things go.

 

[griffin123]

Thanks Mehita for responding, I believe his inflammation is in his colon and he had the scopes done in January when they diagnosed him. I don't know if he has any abscesses or fistulas. His doctor is going to call me next week when he gets back from camp oasis and i'll ask him those questions. I have the paper work from his old doctor somewhere but we just moved and everything is still packed.

 

[Honey]

Hi there,
I spent a year trying other meds and Methotrexate injections, which I gave myself but they did not work for me. I had unwanted side effects eg vomitting, so I was on steroids for sometime. Budesonide helped and reduced the inflammation but I was told steroids only mask the problems,make you feel good but can not be used for a long time.
In short, I am now on 8 weekly Remicade infusions and pain free. I go into hospital for 4 hours for these. Remicade is only used when all else fails and when symptoms are serious. I hope this info helps and you find the best treatment for your son. It is a worrying time for you. I shed many a tear when meds did nothing but make me sick.I am doing well now. Once your doctor finds the best meds,I promise you it will be great! It takes time but remember to discuss all your concerns with your specialist. Ask questions, I do.
Let me know how he is doing. Best wishes.:welcome::getwell:

 

[CarolinAlaska]

Hi Griffin123,

My daughter's main symptoms were not growing and not going into puberty. She had, and still has, only mild GI symptoms. Usually when kids aren't growing, the problem is in the small bowel. I did a lot of research when my daughter first got diagnosed. I found that for kids who weren't growing there was a strong recommendation for EEN (exclusive enteral nutrition) which can bring the child to remission, AND help them grow. The child is given special formulas to drink, but most of them taste bad and only few can do it, so most children get an NG tube to feed them. The NG tube can be placed at night and feedings go overnight, and then the child just gets water during day, or they can be left in 24 hours. My daughter tried to drink the formula for 3 weeks, but the only one that she could manage was Ensure, and that didn't agree with her GI track, to she ended up doing the 24 hour NG tube for 5 weeks so she could have better formula. After she finished the exclusive portion of the plan, they let her start adding in other foods. She has done so well and is gaining so well (16 lbs up and 3 inches taller over 4-5 months) that she continues on the formula drinking a mixture of the Ensure together with the better tolerated formula (Peptamen Junior). She was started on 6MP in April and is doing very well and continues to gain. It isn't an easy road, but other than having to drink good nutritional drinks and/or having an NG tube, it's pretty easy with little side effects. My daughter was never hungry on EEN because it gives her everything she needs nutritionally. My GI doc has been amazed. I would definitely ask your new GI about this alternative.

By the way, is your son at Camp Oasis too? My daughter is in Seattle doing that one right now too.

PS. Be sure and have your doc order for his zinc to be checked. Low zinc decreases their appetite.

 

[my little penguin]

I could see the remicade since your child has growth issues- he is the same size as my DS who is 9.
6-mp is going to take 3-6 months before you will know if its working.
Given his age you may not have that much time.
I would ask the doc what would happen if you waited, what would he expect to happen if you were put on remicade and what would happen if you did nothing?
get copies of all biopsy results , scans,X-rays and blood tests as well as doctor's notes
these will help you understand and they are part of your child's medical record.

here is a paper on remicade and growth which may help.
Growth failure is a sign of moderate to serve disease.

http://onlinelibrary.wiley.com/doi/10.1002/ibd.20115/full
http://www.cincinnatichildrens.org/WorkArea/DownloadAsset.aspx?id=87937
http://journals.lww.com/jpgn/Abstract/2011/01000/Improvement_in_Growth_of_Children_With_Crohn.8.aspx

 

[CrohnsKidMom]

Welcome Griffin123! My 8 yr old son was dx'd in March. As you've read below, different docs tackle the disease in different ways. Our Gi recommended either NG feeding for 3 mths, or Prednisone for 3 mths. We went the Prednisone route. A maintenance med is usually started at the same time so it will be working when the Prednisone ends. Our GI said that Pentasa is mainly successful in colitis patients and did not recommend it for our son. We tried Imuran (a sister drug of 6 mp), but my son could not tolerate it. He is now on Methotrexate injections and, so far so good. 6mp/Imuran can take up to 3 mths to kick in, Methotrexate takes about 6wks. Our GI said Remicade is quick to take affect, but is more heavy duty and he prefers to reserve it in case we need it later. But he did say he has used it right away on some patients if he really feels it is really warranted. Hope this helps. Take care!

 

[ChampsMom]

Hi Griffin123,

Welcome to the forum - sorry to hear about your son's diagnoses.

My son was diagnosed right after he turned 13 - he was also small for his age (I think he was in the 20%), but had other symptoms (mainly what the doctor's and I thought was a case of the stomach flu that he couldn't get over - *wrong*!).

He was in the hospital for just shy of 6 weeks when first diagnosed. He was immediately put on prednisone and pentasa. Initial Pentasa dose was 1500 mgs/day but after a year his GI was concerned his inflammation markers were slightly elevated (maybe 2 points high) and wanted to start him on 6mp. I too was concerned about the higher meds and asked a lot of questions here. (My son had ulcers that were located ever where from his mouth, throat, stomach and small intestines and had inflammation in the colon near the terminal ileum). I asked if we could increase the Pentasa (as I had seen other people on higher dosage) and see if that helped. So it was increased to 3500 mgs/day - that was 2 years ago. Since then he has grown quite a bit (I think he's close to 5'10" now) and his weight is about 135 (now he's in the 50%).

Gather as much information as you can... take it all in and then gather your own bearings. It's a tough decision - there are many success stories (there is another thread you can read about success stories) and lots of Mums and Dads here that can "virtually" hold your hand through this.

God bless and warm wishes...

 

[DustyKat]

Hi griffin and :welcome:

I am so very sorry to hear about your boy. :ghug: As you have seen, there are other parent's here whose child's only outward symptom is failure the thrive.

With the 2 GI's who have had contact with you have been introduced to the two schools of thought when it comes to IBD. These two approaches apply to the long term maintenance of disease. The first is the older established way of thinking and that is what is called the Step Up approach. You start with the 5ASA's (like Pentasa), which you have and if that fails you move to the immunosuppressives like 6MP/Imuran/Methotrexate. If those class of drugs fail you move to the biologics, like Remicade.

The other approach is what your new GI is wanting to do and it is called the Top Down. Even though your son has for what is all intents and purposes appears to be what may be a mild case of Crohn's the fact that he is not growing is testament that he has chronic inflammation. The idea behind the Top Down approach is you hit the disease hard and fast and establish a deep and stable remission ASAP before any lasting damage is done i.e complications like perforation, obstruction, stricturing (scarring). So what they are trying to avoid is the damage that may be done whilst you are failing medications on the Step Up approach.

Now if you don't go with the Top Down approach your aim must be to get to remission ASAP and then maintain that with one of the immunosuppressives. The key is though that you need to get to remission first. That is achieved with either Prednisone or as has been suggested EEN (Exclusive Enteral Nutrition). Unfortunately EEN is not used anywhere near as widely in the US as it is in other countries but for Crohn's disease it can be as successful as steroids and has the added benefit of providing all the nutrition required with no side effects.
Bear in mind that it will take at least 3 months for Imuran/6MP to become fully therapeutic and for some people that cab stretch out to 6 months.

I wholeheartedly agree with reading, reading and reading some more and obtaining copies of all tests, imaging and letters. Ask questions of your doctors, other health professionals and us. Knowledge is power and with power comes the ability to be the best possible advocate you can for your son.

Good luck and welcome aboard!

Dusty. xxx

 

[Sascot]

Hi and welcome. Medications are so confusing, not helped by the fact that each GI seems to use them all differently. If you wanted to stay on the 6mp then as mentioned above - it may be worth considering the EN liquid diet.
My son did 8 weeks on the Modulen through a NG tube. He wore it to high school and I "fed" him at mealtimes and snack time through a bolus feeder. It is hard to do but really worth it as it certainly took all my son's symptoms away for a good few months. If your child could do the two together hopefully the EN would get symptoms to reduce quickly then the 6mp could have time to work. My son is on 6mp - we are 4 months into it and his tummy inflammation is almost back to "normal"

 

[Dexky]

Nothing to add to the great advice given! Just wanted to say welcome to the group. Good luck!

 

[Tesscorm]

Hi Griffin,

Always tough decisions to make!

My son was diagnosed in May 2011 (just before turning 17) and was put on exclusive EN for six weeks (he used the NG tube overnight, found it easy to insert and remove each day) and was allowed clear fluids (including broth, jello, etc.). This took him into clinical remission very quickly! Following the six weeks, he continued with enteral nutrition 'maintenance' (1/2 dose, 5 nights/wk). He responded very well - next to no symptoms, great weight gain, feeling/looking good, etc., however, tests including MREs continued to show inflammation was present.

At 18, was transferred to an adult GI. After testing (blood work, MRE and scopes), the new GI recommended remicade. His reasons were that continued inflammation would eventually lead to more serious complications and we may or may not have lots of warning of a worsening situation. He was very adamant that this was necessary and was very much how Dusty described - wanted to stop the inflammation immediately.

I was really uncomfortable with this approach and it took lots of research and questioning to move me along. Also, as my son was 18, I very much had to take his opinion/preference seriously - he wanted to avoid the risk of surgery and further complications and follow the GIs recommendations. So, he started remicade in February. Very tough for me as he looked great before starting?!?!? When you can't 'see' the problem, it's even harder to accept these meds. As of now, nothing has changed in my son... but, as he looked/felt good before, his outward symptoms won't show improvement (although labs have shown that his CRP dropped considerably and he is having another MRE in August).

While I'm still not convinced that it was ABSOLUTELY necessary, I certainly did want to avoid surgery and other complications and have read information/studies stating remicade has a higher success rate if used within the first two years of diagnosis and if used as the first med treatment. While the risks of remicade sound horrible, they are small and you need to look at them in perspective with all the other risks in day-to-day life.

My best advice is to do all the research you can (about both sides - treatment options and risks of undertreated crohns), ask lots of questions, get second opinions (if not from another GI, at least from a pediatrician/GP), get opinions/info re the GI specifically (experience, recommendations, etc.)... There is no right or wrong decision, without knowing what the future holds, I think the best you can do is reach the point where you have done all you can to make as informed a decision as possible. :ghug:

 

[awmom]

Hi Griffin,
My son was diagnosed when he was 14, and like your son, he was not growing well and was very anemic, but his GI symptoms were fairly mild. He was started on Entocort, then Pentasa. When that wasn't enough, he was given Prednisone, but like your son, his symptoms returned when he taperd off, and he still was not growing. He then was started on 6-mp and 4 weeks of liquid died and he finally grew a couple of inches! He stayed on the 6mp for a year but was unable to gain weight/grow and developed a stricture so was started on remicade. Stayed on that for a year but still no weight gain, low appetite, and minimal growth. Was taken for second opinions and they recommended surgery to remove the stricture which was done this March at age 17. I have to say that every time his meds were changed I questioned, cringed and cried, so I understand how very difficult it is to make these decisions.

His doctors took a bottom up approach (with which many kids have done well)and at the time I was comfortable with this, but in hindsight it may not have been the best for him and we might have avoided surgery with a different approach.

On the issue of iron supplementation I found that no matter how much iron my son was given, his anemia did not resolve until he was in remission (I had discontinued his supplements by then).

Like others have suggested, get copies of his bloodwork and pics of his colonoscopies, ask a lot of questions,and if necessary for your peace of mind, get a second opinion. I would want to know where the inflammation is, the extent, and how they plan to monitor him. This forum full of incredibly knowledgeable people will help you tremendously. I wish you the best of luck with these difficult choices and know that you are in good company. Keep us posted.