Moms of high-strung kids w IBD

amother

Turquoise

Wed, Sep 06 2017, 7:57 pm

Looking for some suggestions, books or therapists (Lakewood) or methods, to deal with a rather intense little boy with colitis. Mom knows she enables to some extent - when the poor boy was having 8 BMs a day, she was not going to insist that he dress or wipe himself.

She has employed all kinds of strategies to get him to take his meds etc so he gets and probably thus demands tons of attention. She knows he needs to grow up somewhat & learn some independence, but she could use some help in how to do this.

As he is transitioning into school (and of course won't bring his special foods so barely eats all day) she needs to figure out how to help him cope while not letting him be overly stressed, which would ch"v make his colitis worse.

Any tips will be much appreciated!

PinkFridge

Wed, Sep 06 2017, 8:21 pm

Tell her to contact Chai Lifeline. They also deal with kids with chronic conditions. Hatzlacha!

amother

Lemon

Wed, Sep 06 2017, 8:51 pm

If he has special foods, is he on the SCD diet? The meds for colitis can have terrible side effects. Maybe a functional medicine doctor can help him out more with diet and lifestyle changes which can impact quality of life, gut health and behavior.

anonymrs

Wed, Sep 06 2017, 9:33 pm

amother wrote:

If he has special foods, is he on the SCD diet? The meds for colitis cam have terrible sode effects. Maybe a functional medicine doctor can help him out more with diet and lifestyle changes which can impact quality of life, gut health and behavior.

Agree! This would be more helpful than any therapist or parenting strategies.

amother

Turquoise

Thu, Sep 07 2017, 1:28 am

She is working with a diet and supplements through a functional medicine consultant. I just said meds not to get into details but yes, many supplements. That's why he won't eat in school unless there's something on the menu he can eat - he doesn't want to bring his own food and feel different.

But the behavioral piece needs some work.

PinkFridge

Thu, Sep 07 2017, 9:01 am

OK, I'm going to say something possibly controversial.
I know that the IBD meds can have horrible side affects. Many people will do everything they can to stay away from Imuran (or the generic) and the biologics, like Remicade and Humira.
However, they are finding the worst long term risks of cancer from combinations of biologics and Imuran. Consult your doctor but perhaps meds are something to consider, just not the full cocktail.

SCD is torture on kids. It can work but if the kid is high strung, young, and dealing with chronic illness, having someone to talk to, not feeling so alone, can be really helpful. I will repeat: please call Chai Lifeline for some direction and chizuk.

Colitis is harder to treat than Crohn's and SCD works less often. Also, there is research about other diets, don't remember where I heard about it (maybe even here), something from a university from Massachusetts. Now with all that it's harder to treat, and that diet has a lower success rate, there are b"H many new, more targeted meds coming out. Because they are more targeted the long term risks are much lower. This is definitely something to research. Some of the meds have been targeted on colitis vs. Crohns and look promising.

So far I just addressed long term risks of certain meds. Yes, there is the definite short term concern of dangerously low blood count and liver damage. This is why doctors dose carefully and do regular bloodwork.

Just urge your friend to make very, very informed decisions. Refuah shlaima and hatzlacha!