3 year old with crohn's - medication problems - help needed

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Cowgirl NZ
New Member


Date Joined Mar 2008
Total Posts : 2
   Posted 3/30/2008 5:05 AM (GMT -7)   
I am the mother of a three year old, who was diagnosed with Crohn's one year ago. (after 14 months of symptoms). After an initial treatment of steroids, he was put onto pentasa, which appears to have worked well, with no major flare ups since.
However, a couple of weeks ago, whilst on holiday, he came down with a severe stomach flu, lots of vomiting, couldn't keep anything, including the pentasa, down for six days. And we haven't been able to get him to take the medication since - as he's developed a paranoia linking it to the vomiting.
Sure enough, a few days later, stomach pains and bloody diarrhea started. We headed home from holiday early, fearing the worst and anticipating more steroid treatment.
However, before getting home the symptoms cleared completely - no more pains, and stools even more 'normal' than whilst on pentasa. On the down side however, he's developed severe mood swings, paranoia and anxiety, and a ravenous appetite. All symptoms we've previously seen with steroids - but he's not on any yet!
This has made us wonder if we're seeing some kind of reaction to coming off the pentasa so suddenly??
As it's impossible to get a three year old to tell us what he's really feeling and thinking, I'm wondering if any adults have experienced similar effects after halting medication suddenly? And if so, what is this medication actually doing to him, emotionally? And since he seems to have come right without it, does he really need it??

We live in New Zealand, and my son is one of the youngest to be diagnosed in this country. To be honest, the doctors don't really seem to know how to treat him. It's hard to get straight answers.

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 3/30/2008 6:16 AM (GMT -7)   
First
Welcome to Healing Well
I am so sorry your poor lil guy has to deal with this ..
I really wish I could tell you IF it were the Pentasa .I honestly do not know..
I do know that you can get so MANY great answers from the ppl here that have had this Disease longer than I more experience with all the complications than I give you input
I really do FEEL and EMPATHIZE with you as a Mom knowing your son is so sick and you cannot do anything........BUT in the long run you are doing the best you can with what you have got ....
EDUCATE yourself ( i am positive you are already ) as much as possible .....read back on past threads go to resources and see if anything will help you
Pop in the search engine your ? and see if anything comes up
Geesh I feel so dang sorry I cannot help you more ..
The wknds are slow here usually BUT during the week I know you will get many responses ..there are so many great members here that have such knowledge and are so supportive and so helpful
I know they will post to you .........
PLEASE do not leave us
Stay with us and I KNOW you will get some answers you do need support right now
I am glad you found us here..Truly I am

God Bless you and your family

LYN
  DX With Crohns,Pyoderma Gangrenosum, Anxiety/ Panic and Other Disorders
 
Moderator @ Anxiety Panic..Alzheimer's..Co mod @ Crohns
 
   
 
                   
 


Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 3/30/2008 8:12 AM (GMT -7)   
A good resource for parents of kids with Crohn's is the Dragonpack IBD support forum. There are a number of parents there, some with very young children. In general one should always consult with a doctor before stopping any medication... have you discussed this yet with his doctors? The nature of Crohn's as a relapsing and remitting disease means that even if your son is OK now, he will probably flare again in the future. You should have a pediatric GI you trust, so that when he does flare again, you are prepared.

Since your son is an unusual case in NZ, I would recommend you try to consult with a doctor in Australia. There is probably more experience with pediatric Crohn's there. I know that in Australia enteral nutrition, which is a special liquid diet, is used for children with Crohn's. If the disease is present in the ileum (small intestine) it can be a primary therapy, or in conjuction with other medication. It also will help to improve growth if your son ever needs to go on steriods. I am an adult and currently am using EN as a primary therapy...it seems to work for me but I developed Crohn's as an adult and have a mild case. You will also find parents on the Dragonpack forum who use this with their children. It is simply a different way to receive nutrition so there are limited, if any, side-effects. I wish you the best of luck.


 


MaryS
Veteran Member


Date Joined Jan 2003
Total Posts : 1668
   Posted 3/30/2008 11:03 AM (GMT -7)   

The link to the Parents of IBDers Support Board is:  http://www.dragonpack.com/ibdsupport/parents/

A great Board for advice and support for Parents of young IBDers.


MaryS
Veteran Member


Date Joined Jan 2003
Total Posts : 1668
   Posted 3/30/2008 11:23 AM (GMT -7)   

Pentasa is a pretty mild IBD med.  Really have not heard or read of emotional effects on or off of it but not saying it can't happen as med reaction of each individual patient can be different.  Your Son is so young that anything is possible emotionally I would think after the Flu episode.  He has been through a lot already being diagnosed and having to deal with the dreaded steroids.  Very tough for someone that age to be able to process all that has and is happening to him.

Yes, some patient's symptoms can get better coming off of Pentasa, but for how long is again, different from patient to patient.

Can't say that Pentasa ever kept my Daughter's symptoms or flares in check.  Pentasa is more of a topical med that is supposed to help guard against colon cancer though.

There are Parents of young IBDers on the Board that I posted a link to that may be of help to you.


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 3/31/2008 6:32 AM (GMT -7)   
I'm so sorry to hear about your son. What a difficult situation you find yourself in. I have a 3 year old who is not sick and I know how difficult it is to get an accurate read on the things she says - my heart really goes out to you. I hope this does not anger you (don't want to be pushy or suggest a false "cure" ) - but have you considered a change in diet? I know that there are MANY, MANY parents of children with IBD who have had great success with the Specific Carbohydrate Diet. I, myself, have tried it with great success. I only offer it as a suggestion, not trying to be pushy. And I'm not trying to say that it can replace medication, but many many people have found that it "heals" their gut and they don't need meds. I have not gotten to that point, but... for what it's worth - your son is so little and there is certainly a place for medication in all of this, but if he's not responding well, then a dietary change is something you might find worth trying. I sincerely hope he improves and that you find whatever it is that is going to help him do well. Please keep us posted. He will be in my thoughts and prayers.

Stef

Cowgirl NZ
New Member


Date Joined Mar 2008
Total Posts : 2
   Posted 4/1/2008 10:47 AM (GMT -7)   
Thank you to everyone who responded for all the advice. I've been doing lots of reading on the dragonpack forum. It's a great resource. We saw Ranger's doctor again, and she recommended getting him back on pentasa asap. We did - but straight away the diarrhea and sore tummies started again. Of course we don't know weather that was a result of going back on the medication, or an inevitable result of being off it for a couple of weeks. It's so frustrating! Don't really know what to do.
Stef, I hadn't heard of the diet you mentioned, but I will definitely check it out. Can you recommend a website or book?

Thanks.

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 4/1/2008 1:27 PM (GMT -7)   
I agree with diet suggestion. Since he's hungry try starting the SCD or the Maker's Diet, or a combo of the two.

Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 4/1/2008 1:42 PM (GMT -7)   
The book is called, "Breaking the Vicious Cycle, Intestinal Health Through Diet" by Elaine Gottschall. It explains the Specific Carbohydrate Diet.  The basic premise is that people with IBD and other diseases cannot digest/absorb/process MULTIPLE-SUGAR moleculed foods. So, those are eliminated and only SINGLE-SUGAR moleculed foods are allowed. This allows the body to properly digest the food that is taken in.  When complex carbs (multiple sugared) are taken in, the gut can't digest it, they stay and ferment causing irritation, inflammation, illness.  Many people find that adhering to the diet with absolute strictness heals their gut. In fact, some people find that after doing the diet strictly for 1-2 years, they can add regular foods back in and eat "normally" again and not get sick.

Here is a weblink to get more info:
 
This link will give you info about the book, to how to get started, or where to find online support groups for people who are doing the diet.
 
I'm not a doctor, so maybe I am WAY off base to even suggest this - but maybe the pentasa IS giving him diarrhea. It's a mesalamine drug and I know that it can cause diarrhea in infants whose mothers are taking the medicine and breastfeeding. It might not be a far stretch to think that since he is so little, it could have a similar effect on him. BUT, again, I am not a doctor, just thinking out loud.
 
If he's hungry, I would consider the diet. I did it years ago and just started it again last week because I was flaring pretty badly. Five days later, I'm significantly better. That's why I wanted to suggest it to you. You have nothing to lose and hopefully everything to gain.  Keep us posted on your little guy.

MissNailzzz
Regular Member


Date Joined May 2003
Total Posts : 115
   Posted 4/1/2008 1:51 PM (GMT -7)   
I don't have answers for you, but I can share my story. I have been taking Penstasa for over five years and have come off of it a few times with no side effects, physical or emotional. But this could be totally different in a child. Best of luck.
The Greatest Discovery Of Any Generation
Is That Human Beings Can Alter Their Lives
By Altering The Attitudes Of Their Minds.


Blossom
Regular Member


Date Joined Mar 2008
Total Posts : 176
   Posted 4/3/2008 6:16 PM (GMT -7)   

So sorry, CowgirlNZ, to hear about your son's complications and to be going through all this at such a young age.  Obviously it's between you and your son's doctor to determine if it's the Pentasa that's giving him problems.  That said, I have a definite sensitivity (or am allergic) to Pentasa so cannot take it.  I experienced severe cramping, some diarrhea, and even passed blood from it.  Within a couple days of stopping the Pentasa, I felt "normal" again.  After waiting a few weeks and then trying the Pentasa again (just to be certain that my symptoms weren't a coincidence), the cramping, diarrhea, and bleeding started up again.  So I'm no longer taking the Pentasa, and will eventually start taking an immunosuppressant 6-MP.

Take care, and good luck to you and your son!

 



53 year old female; 2/2008 confirmed (and my long awaited acceptance of) diagnosis of Crohn's of terminal ileum (have actually had CD for 8 years).  Allergic to Pentasa and Entocort.  Will go on 6mp in a few months.

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