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My 12 year old daughter was diagnosed in Sept 2009. She has been on Pentasa (after 6 weeks Prednisone) feeling ok until recently. Bloodwork shows increasing inflammation and more anemia. Doctor talking about 6MP. I know lots of people and kids are on it, but I am a little freaked out. Can anyone tell me about their kids experience with it-any side effects? Does it work?

 Reply posted for allrob.

Well, you know, she was so sick and still inpatient in the hospital when she started it.  So, she had lots of complaints but hindsight being 20/20 - I think the complaints were the Crohn's because as she got better (and never stopped the 6MP), the complaints stopped.  If the med was making her sick, the complaints should have persisted. 

Is the nausea new with starting the med?

It is hard to say sometimes which it is - the disease or the med, when the symptoms and side effects are so similar.  I'm sorry I can't give you more insight on this one.......

Keep me posted.

Claire's Mom

 Reply posted for AZMOM.

Do you remember if Claire got any headaches or nausea when she first started the 6MP? Ariella has been complaining a little the last few days-I know it is a side effect but I hope it doesn't get worse...

 Reply posted for allrob.

You have a good memory.  :-) Yes, she was in the hospital last June and that is when she was diagnosed.  I hope things go well for you all!  If I have learned nothing else through this journey it is that not all paths are the same.  Your family is in our prayers.  Please keep us posted!

 Reply posted for AZMOM.

Thanks so much Claire's Mom. I appreciate your thoughts. I guess this is fairly new for you too-your daughter was diagnosed a year ago I think you said. Everyone sais the first year is the worst. It sounds like you are on a good path. Hope it continues....I will let you know what happens with us.

 Reply posted for allrob.

Try not to worry.  (This is the pot calling the kettle black because I worry about everything!)  It may just all go very smoothly!!  Our fingers are crossed for your family.  :-)

 Reply posted for johnsmom.

so sorry for this-it seemed like he was doing well the first couple of weeks on it.....now what will you do?

 Reply posted for allrob.

sorry i havent replied but it's been a bad few weeks.  forget what i said about 6mp we are done!!!!  slight things were happening like tired, weak, loss of appetite, then rashes and severe headaches, he is now on lockdown at home because his white blood cell count has dropped dangerously low.  i was concerned about this because of his reactions to other meds but doc seriously pushed for it  and insisted that because he reacted to one med doesnt mean he will to the 6mp.  all i can say is trust your instincts, i wish i had! please keep in mind every child is different and i am no doctor, just letting you know of our experience.

 Reply posted for allrob.

Claire's labs were checked monthly at first.  Now that she is in remission, they are checked every three months in conjunction with her office visit.  Hope that helps........

 Reply posted for johnsmom.

I have read about coconut oil. I have tried cooking with it a little but I don't really know what to do with it! Also, I tried giving her coconut macaroons-nothing happened..

 Reply posted for allrob.

He has been on many antibiotics as he seemed to do best on them.  Had a bad reaction to asacol.  Has been on entocort for last couple of years and really hasnt had any significant improvement on that.  There were a few other meds that he had reactions to in the beginning but i cant remember names off hand (would have to check my huge file i keep on him and it's been a couple of years!).  I posted something on here some time ago about information I was given about coconut oil.  Google coconut oil and crohn's and you will be very surprised at what you find.  In the first 2 months of cooking with coconut oil he gained six pounds.  It is expensive but I have no doubt that it helps.  Good Luck!

 Reply posted for johnsmom.

I am glad that so far he is handling it well. Just curious, what other medicines did he try over the past 4 years?

 Reply posted for allrob.

My son is 11 and was diagnosed 4 years ago.  After years of trying every med nothing was working for him.  I was so afraid of the 6mp from all that I had read but I was told by his doctor that she had to insist he go on it or ask me to find another doctor.  We reluctantly started it on May 10, and so far no side effects (he has had side effects to just about every med he has tried).  It is too soon yet to tell you if it is working but he seems to be handling it well.  I know how scary this is for you, I struggled with this decision for a long time.  I hope you find what works for her...good luck!

 Reply posted for allrob.

I have been dealing with this for 2 yrs with my 16 yr old daughter....it has been extremely hard. We have been through numerous medications and 28 hospital visits. Please feel free to contact me at ladyozer@aol.com. to talk if you would like to hear our experience. Lorrie

newly diagnosed daughter and 6mp

 My

20-year old (at the time) stepson was diagnosed with Ulcerative Colitis in

2007.  After months of different medical treatments, and little if any

relief, in August 2008, he was admitted to the hospital with what the doctors

described as being among the top 5% of worst cases they had ever seen.

 After 3 weeks in the hospital, and on the brink of death, the only two

options he was given by the doctors were Remicade or proctocolectomy (removal

of the colon and rectum).

 After being told repeatedly by doctors that

diet has no effect whatsoever on UC (a part of the digestive system,

nonetheless), my husband refused to accept that claim and finally found a way

to get his son healed without medication or surgery. This regimen has healed

thousands of Colitis and Crohn’s patients all over the world for 20 years! 

 We spent the next 2 weeks weaning my

step-son off of the medications and drips (he had to hide his medications at

times because the doctors refused to work with him in this regimen).  He followed

the proposed regimen of this system and at the end of those two weeks, he was

finally released from his 5-week stay in the hospital when his visits to the

bathroom went from 20 per day to 2 per day!!!!

 One week later, and on zero medications,

the results of his next rectal scope showed that his colon had completely

healed other than one polyp which showed a brand new surface coming up behind

it.

 Unfortunately,

my stepson has since come away from the diet because he does not like fruit and

vegetables.  He has

thus, unfortunately, had a number of hospital visits since, numerous temporary

relief medications and is presently awaiting the start of the Remicade regimen

in spite of the horrendous side effects. 

I wanted to

share this for those of you who are willing to make a wholesome change in your

lives in order to receive unfathomable rewards.

 Reply posted for dmstern8.

I am new to all this.My son is 20 and was diagnosed with UC.what is  6mp?

 Reply posted for mygirlrj.

Thank you for your thoughts-it is very hard not to feel guilt and to wonder what else we could/should be doing. But you said it well, we have to do the best we can as parents and let the doctors handle the medical stuff.

 Reply posted for allrob.

I completely understand. I couldn't and wouldn't want to  keep a strict control over what my children were eating either. They are a bit older and my daughter has read LWB for herself although she is healthy. Since I started eating low carb they have both gradually decreased the carbs they eat as well and hardly touch the extra rice, potatoes etc that I make for them. They prefer the extra vegetables that I now cook and, by choice (or because their blood sugar is very stable) rarely eat sugary snacks between meals.

Although changing to a strict diet really can help I think just reading the right information and being aware that there is an alternative route to help minimise reliance on strong drugs  makes a difference. It is also very easy to reduce omega 6 oils without much noticeable change in taste.

One of the first things my doctor told me on the day I was diagnosed was that colitis wasn't affected by diet. It took me five years of deteriorating health and the threat of surgery to start wondering if he was really right. My biggest regret is that no-one told me that it might be worthwhile looking for an alternative solution from the beginning, or where to look. See ecsmit's post on enteral nutrition. It is a well established  treatment for Crohns here in the UK although our doctors still don't know nearly enough about uc and diet.

Warm wishes to you and your daughter. I hope you find a successful solution soon.

 Reply posted for allrob.

I agree Allrob- it is far different when you are dealing with a child. They may be angry in general at this diagnosis and then you try to limit and control their diet It is too hard! You can only do what you can do- the most important thing is to get the inflammation and flare under control.

When inflammation is excessive no diet is going to take care of it quickly enough. As a Mom we do the best we can. I have had a very hard time with my 9 yr old and the amount of guilt we feel is excessive. I know I am doing the best that I can with her but we have medical prefessionals for a reason- they know hoe to help us in crisis.

Sure, do your research and play with diet to the extent possible but getting your daughter to a stable place so that she can be a noral 12 yr old is the most important thing!

 Reply posted for Lca.

I have done some reading on this-not those books particularly. And I am meeting with a nutritionist tomorrow. The problem is we are not talking about me-it's my 13 year old daughter. I cannot and do not want to completely control her eating. I do my best-make fish and try to use flaxseed. But I am somewhat limited with what I can do with her diet.

 Reply posted for allrob.

Yes, definitely, every patient is different!  This forum is great for ideas but you are right - what works for one child (or grownup) may not work for another.  Take care....

 Reply posted for allrob.

Before you try 6mp or stronger drugs read Life without Bread by Lutz and Allan and Breaking the Vicious Cycle by Elaine Gottschall.  I have used the SCD diet for 3 1/2 years and haven't needed anything stronger than Mezavant and a very occasional pred enema since I started. Before changing to a low carbohydrate, sugar-free diet I regularly needed steroids (up to 60mg) and had horrible side effects from 6mp and azathioprine.

I use a low carb diet with no refined or high omega 6 oils (just butter, animal fats and a little cold-pressed olive oil) and my health has improved enormously (uc). The right fats are very important. I am ever grateful that I reacted badly to the immune-suppressants because up to that point I believed everything my doctors told me while my health was deteriorating fast.

The two books offer very different perspectives on a  similar way of eating to improve health and they have certainly helped me get back to a normal life.

 Reply posted for AZMOM.

Thank you-it is good to know that the 6MP can work for some without causing too many side effects. I guess as we've all been told-every case is different. It is very tough as a parent to make these decisions. 

 Reply posted for allrob.

My daughter just turned 7.  She was 6 at diagnosis (June 2009) and has been on 6MP since diagnosis.  At one point we were doing a Pentasa, 6MP combination but she had some liver issues so we had to stop the Pentasa.  We were able to wean the prednisone and overall she has done very well.  None of the side effects you sometimes hear about - she hasn't had hair loss or nausea or any of that.

 Reply posted for dmstern8.

thanks for your input. I wish you luck with your son. I guess an important thing is making sure to have a good doctor who does good monitoring. 

 Reply posted for allrob.

My son is 15 years old diagnosed with UC.  He tried all medications to get this under control including 6mp. Becareful, some medications can cause pancreatits.  My son just spent 3 weeks in the hsopital because of an acutue pacreatitis attack and his UC problems.  If your daughter is still having problems and can't  get into remission, you may have to talk to your doctor about surgery.  My son is facing surgery and will soon have his entire colon and rectum removed.  There were no other options.  make sure you have a doctor you trust.

good luck

Derek's mom