Biopsy results back.

[Worried mama]

Results are in and confirm Crohns throughout colon and terminal ileum ( if I spelled that correctly). Dr. Classified it as moderate to severe. Wants to talk Remicade combined with methaltrexate (I know I have that spelling incorrect). I'm worried about how strong these drugs are and the risk of lymphoma in young males.....and the fact that my son has serious needle phobia. Thoughts? Advice? Anything else I need to know?

 

[syzygy]

I'm sorry to hear about that. I'd recommend laying out your concerns and reservations to the doc. S/he should be able to lay out the various options available and the pros and cons of each. I was personally surprised at how responsive my GI was when I expressed similar concerns to her a few months ago.

I can tell you that when things look moderate-to-severe though, the current approach seems to be starting with the biologics, with the rationale of knocking out the inflammation before complications such as strictures or fistulae develop. I've heard it from my GI and repeatedly from Crohnies here that the risks of untreated inflammation (even when feeling OK) generally outweigh the risks from the meds.

At the same time, those lymphoma risks are scary to look at. I think there's some evidence about combination therapy (particularly with 6MP) being somewhat more risky than the monotherapy, so you might want to ask about that. I can related to needing to some real teeth-gnashing and kicking-and-screaming about that (having just made the decision to start Remi myself).

Regarding the needle phobia, it might be worth getting a referral to a psychologist who does cognitive-behavioral therapy. Specific phobias generally respond really well to treatment, which usually involves gradual exposure to the feared object combined with strategies for dealing with the anxiety.

 

[my little penguin]

Sorry to hear about the dx.
The risk of lymphoma is not restricted to young males any more .
Only increases risk to 6 in 10000 from a normal persons risk without Ibd of 2 in 10000.

Risk of dying for those under14.
In a car 1 in 250
Drowning 1 in 1000.
Etc

My point being we take risks everyday to improve quality of life
Just no one is pointing them out to us.
Add In Tylenol which is given to infants can cause death SJS syndrome and liver damage but no one points that out

Remicade plus Mtx is known to give kids the best chance at remission and change the disease course ( reduce risk of surgery ) when given early .

Buzz bee is a good option for infusions

 

[my little penguin]

Check all the papers out here for kiddie Ibd
http://www.crohnsforum.com/showthread.php?t=43002

 

[Sascot]

Sorry to hear that. Remicade seems a popular choice for GI's to choose to start with. I hope it works really well for him.

 

[CrohnsKidMom]

Sorry about the dx, it takes awhile to sink in and there is a lot to consider in the meantime. We do not have any experience with Remicade, but my son has been on methotrexate for over a yr now. He also also hates needles, and although it still causes him some anxiety, the needle is small and is administered with a subcutaneous injection, so just under the skin. I hope the Remi/MTX combo proves to be a magic potion for your son.

 

[SMSIRL]

The biologics and immune modulators do represent a small, but a non-negligible, increase in risk. However, for some, the risk of the illness itself justifies that risk. For example, long-term inflammation in the colon significantly increases the risk of colon cancer. This is more so when the disease has an extensive distribution in the colon.

It is always worthwhile working through a pro's and a con's list with your doctor given your son's current profile before coming to a conclusion as to what is right for him at this time.

It is also worthwhile considering over what duration is the risk of the medication maintained. For example, biologics have some scary side-effects, but the risk of cancers etc. reduce once they are stopped. Some drugs, such as drugs used for urinary retention need only be taken once to have a life-long associated risk [in this case damage to the iris]. Drugs such as Azathioprine and the like are purine analogues, and as such the increased cancer risk associated with them remains after they are stopped. This is evidenced by the on-going risk of skin cancers after termination. [Theoretically there should be a reduction in that risk overtime]

For my part, I operate on the following basis : I will only take the safest effective drug that is as or less risky than the risks of the current/foreseeable disease state, and if the risk of the drug only lasts for the duration for which it is used. Further, I will only use the drug until there is another safer drug to replace it.

Given that, I think it would be useful to get your doctor to clarify what s/he sees as the risks if the disease goes untreated, the risks of the proposed meds, and what alternatives are available with their relative risk and effectiveness profiles.

It is only by understanding the risks of the untreated disease, and those of any meds, can be at peace with our decision making.

Best of luck
S

 

[Maya142]

Sorry to hear about your son's diagnosis. More and more GI's are using the "top down" approach - using the "bigger" drugs first in an effort to get the disease under control quickly. This is a great presentation about the risks and benefits of drugs used for IBD: http://programs.rmei.com/CCFA139VL/

My daughter is on both Remicade and MTX. Initially, the decision to put her on biologics was very hard, but after seeing the difference they made to her quality of life, we have never looked back. I can honestly say that we've never regretted that decision for a second. Yes, the drugs are scary but the disease is much scarier. Researchers are also finding that the cancer risk is less than previously thought.

As for a needle phobia, the sad truth is most kids learn to deal with needles relatively quickly. Most Children's Hospitals have Child Life Specialists available who can help. There are also things you can use - Emla cream or Buzzy: http://buzzy4shots.com

Good luck and hang in there! The first few months are the most overwhelming.

 

[Mehita]

Sorry, worried mama, I forgot how old your son is? Just another thing to think about... you're going to want to try and get him in remission and inflammation under control before puberty starts so that his growth is optimal during that time.

My son has been on Remicade almost a year now and loves it. It gave him his life back. He also has fear of needles and the nurses use a j-tip on him to numb the vein area. Other kids use Emla creme. Might be worth asking about.

 

[Worried mama]

Sorry, worried mama, I forgot how old your son is? Just another thing to think about... you're going to want to try and get him in remission and inflammation under control before puberty starts so that his growth is optimal during that time.

My son has been on Remicade almost a year now and loves it. It gave him his life back. He also has fear of needles and the nurses use a j-tip on him to numb the vein area. Other kids use Emla creme. Might be worth asking about.

Thanks. My son is 12 and has just started puberty, but he has not grown in over 2 years....so yes, we need to get him on some medication soon so he can start to grow, we've already lost so much time.

 

[Worried mama]

Sorry to hear about your son's diagnosis. More and more GI's are using the "top down" approach - using the "bigger" drugs first in an effort to get the disease under control quickly. This is a great presentation about the risks and benefits of drugs used for IBD: http://programs.rmei.com/CCFA139VL/

My daughter is on both Remicade and MTX. Initially, the decision to put her on biologics was very hard, but after seeing the difference they made to her quality of life, we have never looked back. I can honestly say that we've never regretted that decision for a second. Yes, the drugs are scary but the disease is much scarier. Researchers are also finding that the cancer risk is less than previously thought.

As for a needle phobia, the sad truth is most kids learn to deal with needles relatively quickly. Most Children's Hospitals have Child Life Specialists available who can help. There are also things you can use - Emla cream or Buzzy: http://buzzy4shots.com

Good luck and hang in there! The first few months are the most overwhelming.

Thank you. Yes, the reality is that he will need to learn to deal with the needle, but it won't be east. He also has severe anxiety issues, so easier said than done, but I'm sure the nurses have experience with kids like him...and I'm not above bribing him!

 

[Maya142]

We've used bribery a number of times it certainly helps! The nurses really do tend to have a lot of experience with kids and are really wonderful with them.
The Methotrexate shot is a tiny tiny needle and not painful at all (according to my daughter, though I'm guessing she's much older than your son!).

 

[nikimazur]

I'm 26, diagnosed with Crohn's three years ago. I was terrified of biologics, and started with different class of drugs, and steroids. It wasn't until this past January that I gave into trying biologics, and I wish I had done it initially. Biologics have changed my life, and I feel so much better, and actually feel like I have fewer side effects. My disease is much more controlled. I know it can be scary at first, but the benefits significantly outweigh the risks.

 

[Desperatemom]

My daughter feared all meds for years and basically stopped taking them. After three years of pain increasing by the day, ended in hospital and now, all her fears are gone regarding possible risks. She has analyzed it the same way as My Little Penguin. No point in thinking any of these drugs will be the one that makes you a statistic cause there are so many dangers we face each day. She had her first Remicade infusion week and a half ago. Due for second on Friday. Weening off Predisone because it drives her nuts. Stated with joint pain right after Remicade treatment but at this point, she says she feels so much better with treatment that she will figure out how to prepare herself for joint pain after next Remicade. So don't focus too much on possible consequences. As far as needle phobia, my daughter had same problem when younger. She just tried not to look at it and eventually overcame the fear knowing it would be part of her overall life. Good luck and just hold his hand! Nurses can usually talk to patient and try to keep their focus off the needle part.

 

[Jmrogers4]

Thanks. My son is 12 and has just started puberty, but he has not grown in over 2 years....so yes, we need to get him on some medication soon so he can start to grow, we've already lost so much time.

Just to add my 2 cents to the fabulous advice you have already been given. We were in the same boat, my son was diagnosed with Crohn's at 10 and had several years of no to very little growth. We tried all the "milder" meds and combinations of along with various diets and remicade has been the only thing that has worked completely and allowed him to finally start growing and developing. He started in January, he is 15 now and still behind his peers, it's one of my I wish I would have... moments as we missed some prime growth/puberty years.
He is doing incredible now and generally forgets about his crohn's except for infusion days when he gets at least 1/2 day off of school and just relaxes and plays video games or watches movies.
Hydration before infusion and warm towels/heating pad to plump up veins. We did not do the shot form of methotrexate but took it orally (maybe it's an option for you as one less stick to deal with) although it has been said that there are less side effects and more effectiveness with the shot.