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I was just told my 11 year old son has Crohn's. And Doctor wants to start 6MP.

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Crohn's Disease
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Posted 2/26/2012 7:12 AM (GMT 0)
I am new to the board so I hope I am doing this right.  I know this is going to get really long so please bear with me.

My son has been having issues with his stomach forever. He actually had his first test on his tummy when he was 8 weeks old and we found out he had reflux. He has been through a couple colonoscopys, egds and ph probes. Not to mention ct scans and mri's & etc..

My son wants to act like nothing is wrong all the time but he has been in out and out of hospitals for years. He has been on medicine almost everyday of his life. He has a kidney disease called hypercalcuira, and also benign rolandic epilepsy. He gets allergy injections once a week and has severe nose bleeds. So having stomach issues adds to everything.

I have tried for years now to get something done about his tummy. I knew there was something not right but GI doctor always blew me off.. Now we have changed GI doctors after this last hospital stay.

I had to take my son to the ER on Valentines day because he was in so much pain. (He has a very high pain tolerace 4 years ago he rode his bike home from down the street with a broken ankle.) They did lab and urine cultures and said he had they thought a UTI because of blood in the urine. Uh no he doesnt. He always has blood in his urine. We were sent home. Ko started running a high fever during the night and by morning was throwing up and crying because he was in such pain. I called GI doctor and was told ER said it was UTI so now it was a Kidney issue I would have to call kidney doctor. I said I am looking at release papers from hospital and it says call GI in the morning. And this is what I am doing. Well we ended back up in the ER. Doctor that time said she thought it was GI issue. She ordered ultra sound of gall bladder and kidney. Ct scan with dye and contrast of kidney and gall bladder. Kidney looked good. But he had redness or something around appendix area. He was admitted into the hospital and did colonoscopy just a few hours later. Had to try and clean him out the best we could. Colonoscoy showed red streaks and abnormality where large and small intestines met and it was covered with puss. So byopsies were taken. Later that day they did an MRE with contrast which showed inflamation in a couple of different places.

 

After a few days in the hospital they were afraid he was also having seizures again. So he was sent to have MRI of brain and EEG of brain. A few minutes later they were rushing him back down to have MRI of brain with contrast to check his brain tissue. Yes I was scared to death. They thought he had a brain tumor on the right size but after this MRI said it was just a malformation on the right side that could have happened if he bumped his head when he was younger. All this time his  heartrate never came out of the low 50s. So an EKG was ordered and came back fine.

Ko was asked how he was feeling when he was in the hospital. He said I feel okay other than my stomach. HE was told well honey your stomach is why you are here. He said I know but my stomach has hurt all my life. I dont ever remember not having stomach pain. That just about broke my heart.

He stayed 8 days in the hospital. The last 5 he was gettin IV steroids and Pentasa. Doctor called Thursday and said they wanted to start him on 6MP. After all the reading and talking to a few people I am not real sure about letting him take this medicine. So any experience I would really like to hear about. I called doctor and told him I wasnt going to start this medicine until we met and I was able to ask all the questions I have and have them answered. SO we meet doctor Monday at 330.

Right now his meds are 3/250mg Pentasa 2 times a day, 20mg Prednisone 2 times a day, 5-325 Norco every 4 hours as needed, 40mg nexum 1 time a day, 1 culturelle a day, 10mg amitriptyline

Thanks for any info and just for listening to me. I am so afraid of starting him on the wrong thing and it being more harmful tham good

 

 

Posted 2/26/2012 11:49 AM (GMT 0)
So much going on at such an early age.
I really can't comment on what you have been through because I know nothing about kidney disease or epilepsy or the likes of.
Have you now got a firm diagnosis of crohn's? If you have then perhaps 6mp is the way to go. I guess other considerations would be if/how it interacts with any medication that are taken for any other medical issues.

You have probably been reading up the side affects of the drug and it certainly doesn't make for easy reading and they are pretty frightening. However, for the large part many people take 6MP/Azathioprine with little(or no side affects) and it keeps them in remission for many years. As long as blood tests are regularly undertaken then your son 'could be one that it works for.
I was fearful before my son went onto it but two years down the line I am actually grateful that he is on it and is leading a painfree life. It does take a few months before it is totally effective so it does need to be given a chance. If it doesn't work then other medications will need to be looked at. Incidently, many sufferers on these drugs appear to also take asacol or pentasa too(ds on pentasa) GI twicetried to take him off the pentasa because he said that he didn't need if he was on azathioprine, twice son relapsed and so remains on both medications. Singularly neither medication works for him but the combination of the two does.

Good luck to you both. it can be a difficult journey and steep learning curve but many do find drugs that work for them
Posted 2/26/2012 1:48 PM (GMT 0)
Hi:

My heart is breaking reading all that your son and you are going through.. My son who is 16 is taking 6mp for the past three weeks and so far so good. I can't say he is feeling better as it takes time I believe for it to work, but he is not feeling any worse and has no apparent side affects.

Like you I have read horrible things about 6mp and struggled with whether I should put him on 6mp or not. I know also that I can not let him untreated. After much research and questioning his GI up and down we decided to give it a try. Keeping up with his blood work is very important while on 6mp. Just like you I am new to the forum the replies that I have received have been very understanding and reassuring.

Keep in touch and let me know how you son is making out. Good Luck tomorrow.
Posted 2/26/2012 7:44 PM (GMT 0)
Littlebitsmommy,
I am so sorry to read about everything your son has gone through. I really do not know anything about his other conditions but I do (unfortunately) know too much about IBD. My daughter was dx very young with pan ulcerative colitis two and a half years ago. I have researched and done everything from giving her whipworms, to fecal transplants, to very strict diets of all sorts, to herbs from all over the world, to supplements galore, naltrexone etc. Nothing other than prednisone has worked for her and that is becoming less effective (and she has to get off of it regardless). Last year, out of desperation, though still extremely fearful, I agreed to put her on a drug very similar to 6mp called azathioprine. Unfortunately, she had an allergic reaction the next day and had to come off. Now, a year later, we are going to try 6mp itself with the small hope that it will put her into remission. Yes, I know all of the warnings and I've done everything to avoid using this drug on my child but there comes a time when we just have to hope it works. If it works for your son, it could bring him relief for the first time in his life. In the mean time, you could investigate other alternatives if you wanted and eventually wean him off. It is now fairly common for pediatric GIs to try to bring patients into endoscopic remission with drugs like 6mp and then wean them off after a few years.
Like the other posters, though, I would make sure your GI has checked all of the interactions with the other meds he's on. Sometimes I find GIs are so focused on getting the gut into remission they ignore the rest of the body. Maybe double check with a pharmacist to be sure. Good luck to you and your son. I hope you get some relief very soon.
Posted 2/27/2012 12:57 AM (GMT 0)
I have been through a very simmilar situation! I'm 15(So not too much older than your son) & have been seeing a GI doctor since I was 18 months & have had multiple colonoscopies till they finally caught me in a 'flare' & diagnosed me with Crohn's. I like to tough it out & not bother my family about my symptoms so I have little room to talk BUT you might want to start doing what my mom does. At every doctor's appointment I have whether it be with the Rhuematologist or GI doctor she says "Tell them how you feel or they won't know." Which is so true! Most Crohnies look normal on the outisde but can feel horriable on the inside!

The descision is ultimately your choice but if you trust the GI doctor & he has good credentials then I'd try it. I have been on biologics for some time now & I know my mom & dad are scared about them but when they see my progress they know it's right. I'm thankful they didn't deny me the options of biologics. My mom, like you, is a worrier. Which isn't neccesarily a bad thing! I'm glad she stays on top of things! She calls my doctors for every little infection I get while on the biologics and researches all the meds I'm taking. It's not bad to be overly cautious! Just ask the GI what his experiance has been with young kids using 6mp.

Welcome :)! I hope he gets better soon!
Posted 2/27/2012 1:58 PM (GMT 0)
So sorry your son (and you) have been through so much.

Unfortunately, if he's been diagnosed with CD, it must be treated. Pentasa/prednisone is a safe, quick way to help get the inflammation down and may put him into remission too. Those meds have been used for decades and their side effects are well-established.
Untreated CD can lead to obstructions, which often requires surgical intervention.

I think it's a good idea to try some diet changes, eliminating dairy, gluten, and high sugary and processed foods (at least until he is well again). Also, you might want to add a children's probiotic. Udo's makes a good one.

I find chamomile tea with honey soothing when my tummy is very upset.

Let us know how he does! Best wishes.
Posted 2/27/2012 2:34 PM (GMT 0)
Hello and welcome to the forum,i'm sorry to hear your son is going through so much and at such a young age. He sure does sound like a brave young boy, i hope you get to the bottom of things soon and wish both of you some peace with this, Slainte
Posted 2/27/2012 5:26 PM (GMT 0)

Thanks everyone. We go today to talk to the doctor and different medicines. We have been watching alot of what he eats. No fried foods, dairy, or raw fruits and veggies. He has started having alot of pain in his knees, ankles, and back. Is this normal? He gets tired very easily. Walking anywhere at all and he is tired and hurting.

Thanks everyone for the advise

Posted 2/27/2012 6:08 PM (GMT 0)
I had collagenous colitis, which is similar to Crohn's disease about a year ago. Hospitalized for one week. Doctor prescribed Cholestyramine for Oral Suspension USP. It helped very much. I still take that med. & have not had a single flare up.
Posted 2/27/2012 10:21 PM (GMT 0)
Chohn's sometimes can give you external manifestations like Arthritis. Sounds like he should see the Rhuematologist. My first symptom in my last flare was severe joint pain & now I know I have Juvenile Rhuematoid arthritis caused by the Crohn's.
Posted 2/28/2012 4:32 AM (GMT 0)
Well we went and met with the doctor today. We decided to go ahead and start Ko on 6mp. In one week we go and have blood work taken. I knew he had to be one meds but I am just worried about which ones to use. The doctor did say if this was his child he would put him on this medicine. We also had to go and talk with the allergy doctor to make sure he was still wanting to give him his allergy injections because that also brings down his immune system. Allergy doctor said it was fine to give him his shot but at any point if we wanted to stop them we could and start them back when we wanted. Me and DH decided that we do what him to continue his allergy shots. We know it brings down his immune system even more but he does so much better having them. We are afraid if we stop those all his allergies and asthma problems will return.
Dr said it will take about 4 weeks for 6mp to be in his system good. So as he weans off the steriods the 6mp will build in his system. HE said he would probably be on Pentasa forever.

Thanks for all the support and making me feel so welcome. It has been a really hard time.
Posted 2/28/2012 4:48 AM (GMT 0)
Pentasa is mild and generally works locally in the intestines. Don't be surprised if you see little white dots in his stool, that's normal with pentasa. Also, sometimes if it is excreted in urine, it can cause brown stains on the toilet (easily cleaned). Apparently, it has something to do with becoming oxidized. No big concern.

I hope he gets into remission quickly.
Posted 2/28/2012 8:53 AM (GMT 0)
We are so sorry about your son and anyone who has Crohn's. I have had Crohn's since 1992 and have had 5 resections resulting in my having less than 1/2 my intestines. I am sure you are aware that you should feed bland foods to your son, keep a food diary and see what he can tolerate and what he can't. I have been on 6MP for 7 years. 6MP is to aid the medications to absorb better and be more effective and to prevent cancer. I am sure you have been advised of this. However, I think you should discuss Remicade or Humira for your son. Getting him off of Predisone is extremely important as there are many side effects of Predisone, as I am sure your doctor has discussed with you. It is important that you get as informed as you possibly can so that you can be aware of potential problems and ask the correct questions. Your son and you have a long hard road but with knowledge and the right medicines you can have some quality life. Please, just be aware of the side effects of all the medications. I was on Remicade for 8 yrs until I became immune to it and now I have been on Humira for 7 yrs. I take too many medicines to list and I might add that I am now 45 yrs old. I have good days and bad days. But I have a deep faith and belief that I am here for a reason and that God is in control. May God bless you and give you better days.
Posted 2/28/2012 9:21 AM (GMT 0)
I might add that fatigue is a very difficult problem and not being able to plan further than the existing day. Also, people not comprehending what your son is experencing as well as you are going through is very hard. Explaning falls on deaf ears. I am sure that your son has difficulties with his friends and family understanding. There are times when he probably does not want to eat. Ask your doctor if he can take Ensure as a supplement. Even if he does not eat he will be getting nutrition and Gatoraid will help replace nutrients when he has diarreah. Again consult your doctor about this. Jello and yogart are excellent also. Beware of the diary, nuts, raw vegetables, fried foods, spices, and white grain breads. Pastas, rice, broiled meats, steamed vegetables (except for broccoli, cabbage, cauliflour, onions) whole wheat breads, and popsicles are better choices. Instead of real onions, my wife substitutes onion soup mix for the flavor. Just a few tips if you do not already know. Don't mean to sound like a know it all but this is experience talking.
Again, may God bless both of you and the rest of your family.
Posted 2/28/2012 9:35 AM (GMT 0)
Just as a word of caution. Diet is very individual to each and everyone. Some of the things Rawdeal lists my son is fine on
others he has been told to eat minimally and some he has been told to avoid altogether(like whole wheat breads etc)

Check with the GI and/or a dietician if you can.
A supplement food drink is also an excellent idea(many brands available)
Posted 2/28/2012 11:27 AM (GMT 0)
I just wanted to add, that 6mp and imuran can take up to 6 months to reach their effectiveness, so please don't give up on it if you don't see results right away.
Posted 2/29/2012 2:26 PM (GMT 0)
Sorry to hear about all of your son's health issues, especially this current one.  Do you have an official diagnosis of Crohn's from all the testing he has just been through? 

I have an 11 yr old daughter who was diagnosed 3 years ago. We also started with prednisone and pentasa.  She was good for about 3 months after weaning off the prednisone and then symptoms started to return. She then went on 6mp and still the pentasa. Altho she felt "not bad", the bloodwork (CRP especially) still showed inflammation and active disease, and a later scope proved that.  She is now on remicade and it has been wonderful for her.  Her bloodwork, other than a slightly elevated sed rate, is perfect now and life is back to normal (whatever normal really means...)  Her doctor has said that both 6mp and prednisone are higher risk meds than the remicade. It's definitely a commitment as remicade is an infusion that must be done once every 8 weeks for her, but worth it for her to live a good life so far. She hasn't missed one day of school due to crohn's since she started.  Doc also told us that studies have shown the effectiveness of remicade appears to be better and more long term in those who start it at a younger age.  Hope he's right!

Also, have you considered trying a time period of enteral nutrition to allow his intestines to heal?  This doesn't have to be a tube feeding option.  There are EEN formulas he can drink.  Look up one called EO28 Splash.  Also consider changing his diet to specific carbohydrate diet, or even low residue at least until you get this flare under control.

Fingers crossed for both of you.  Living with pain is awful.  Here's to better days - and you will have them.

 

Posted 3/1/2012 11:58 PM (GMT 0)
Thanks everyone. We got the okay for his kidney doctor today that he can start a multi vitamin as long as its not high doses. He says he still just aches mostly his shoulders and back of neck.

We did some of his class work outside today since it was so beautiful.
Posted 3/2/2012 1:23 AM (GMT 0)
Here is an article on glucosamine that might interest you. Of course check with all docs first.

http://www.crohns.net/Miva/education/articles/N_acetyl_Glucosamine.shtml

 

Posted 3/2/2012 11:12 PM (GMT 0)
Please look at www.health-science-spirit.com. Apparently auto-imune disease is caused by pleomorphic microbes. Baking soda used to kill intestinal fungus must be continued for 5 days due to 3-4 day life cycle of fungus.
Posted 3/3/2012 12:39 AM (GMT 0)

Okay sorry I feel like a real dummy. I  have tried to read so much over the last 2 weeks my eyes feel like they are going to fall out. My brain cant hold alot more   :( I tried reading the link and everything is just running together. I am getting so confused. Sorry but what does all that mean. Did I do something wrong? Do I need to be doing more or something different?

Thanks for all the help.

I am just so confused with everything and so much I dont understand.

Posted 3/3/2012 9:29 AM (GMT 0)
Littlebitsmommy-take a deep breath now ;) No seriously, stop reading for a while(not here I hasten to add.)
You are doing exactly what I did when ds ws dianosed, attempting to read any/everything related to IBD that you can get your hands on! Your brain can only retain so much at a time and will not cope with overloads resulting in meltdown and confusion.

Please, read the basics, absorb it and understand it, then maybe drugs commonly used, read and understand, then maybe sugical procedures or more obscure treatments(any order you like reall). Don't worry if it takes a year or even longer to get your head around it because what you will have learnt will be retained.

You haven't done anything wrong
Posted 3/3/2012 4:44 PM (GMT 0)
Hi Littlebitmommy: listen to Vixen she will give you such good advise, after talking to her last week and all the other people that replied to me, I have to say I did relax more than I have in the past 4 months. My son will be taking the 6mp for a month next Monday. His latest labs were good, platelets were a little elevated, his recent colonoscopy showed some ulcers so that is what they believe is causing the platelets to be elevated. I like you became totally overwhelmed with all the research that I did on the drugs that he has to take, and I understand for you that it gets to the point where you can't even absorb any more information. I still hate giving him the 6mp every night, I hope that I am doing the right thing I am sure that I will always have some doubt. Hope everything goes good for you and your son. Take care
Posted 3/4/2012 7:04 PM (GMT 0)
Sorry your son has been suffering so much.

How about trying LDN?

Do some research on LDN - low dose naltrexone, you can search this forum as they are several threads on this. I can tell you it works! Here's the Penn State research done by Dr. Jill Smith with LDN and Crohns Patients.
http://www.ncbi.nlm.nih.gov/pubmed/21380937

https://www.healingwell.com/community/default.aspx?f=38&m=2204683#m2222188, https://www.healingwell.com/community/default.aspx?f=38&m=2129791&p=1

Posted 3/6/2012 9:25 PM (GMT 0)
Hello Littlebitmommy - My son is 14 and will start remicade treatments for chrons shortly. I wanted to address the fatigue issue. Our GI insisted that we buy Boost nutritional drink right away, once he was diagnosed. He was so tired prior to drinking it. I know we have to be careful in how he is weened off the Pred., but he plays soccer and other sports and the Boost drink is a big help. And, believe me, I don't work for this organization and I'm not putting in a plug for them. I wish your son well. My heart goes out to you, especially if your son is as sweet as mine :-)
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