How to Keep Our Kids Healthy

[jland25]

Hello (again):

My 12-year-old-son, diagnosed with Crohn's earlier this month, has been on Prednisone for just over a week and has already come down with strep throat. On the advice of his pediatrician he hasn't been in school since his diagnosis because of his severe weight loss and having to take high doses of steroids. [Also to allow him to adjust psychologically as he has autism and all of this is hitting him very hard].

This means he has mostly been home and no one in the family has strep--yet. He is getting tutoring from the school district, but the tutor has not been sick, either.

My son did not get sick often before this and hasn't had strep in many years. I'm worried about him getting sick with one thing after another because of the medications for Crohn's.

I'm sure I'm obsessing about this because it's all new and scary, but did this happen to others? And how did you go about trying to protect your kids when they are immunosuppressed? He takes a multivitamin, minerals, elderberry, astragalus, Emergen-C, and fish oil.

Thanks!

jland

 

[CrohnsKidMom]

Sorry you are going through this. Your poor boy! My son was on Prednisone and is now on Methotrexate. He has had the occasional cold since his dx this time last yr, but thankfully, nothing more serious than that. I'm not sure that being on a immunosuppressant makes one more likely to catch something, but I do remember our GI saying that it can mean the virus makes you sicker and may mean it takes you longer to get over it. I hope your son starts feeling better soon.

 

[Jmrogers4]

^^^ Yes that, There is a bunch of mono and strep going around my son's school so much so that the nurse sent out an email to everyone about precautions. Jack has not had any issues. He was dx'd 4 years ago and has not had any more colds or sickness than his brother.
My husband was dx'd over 20 years ago and has been on many different medications and quite a few courses of steroids. He is rarely sick. When all of us are down with an illness he is fine.

 

[Catherine]

If anything we have had less colds/flu since starting azathioprine.

But she did get shingles while on pred. It was very mild case, 7 spots in all.

 

[Tesscorm]

Ditto to above... my son's roommate developed mono and had to leave school but my son was fine. He's also mentioned other kids becoming sick with strep on his dorm floor but, aside from a normal cold, he's been fine. And, our GI said the same thing as CrohnsKidMom's GI.

 

[Mehita]

I'll just reiterate what everyone else has said. Being immune suppressed doesn't necessarily mean they will catch things, but if they do catch something it can be tougher on them than others. So, obviously, you'll want to try your best to not catch things.

I haven't looked into this much yet, but in another group I was told to use caution with things (i.e. extra Vit C) that boost the immune system when you're on an immune suppressing drug. The thought being it's counterproductive. Does anyone have have info on this?

 

[Tesscorm]

Mehita - we were told the same thing abt immune boosters. The remicade specialty pharmacist advised against Cold FX, ginseng and, I think, echinacea. She said as a rule of thumb, avoid supplements of things you don't find in typical foods.

 

[Sascot]

I think I just do the usual things, maybe just a little bit more obsessively . I try keep family and friends away if they are ill, if my other child gets sick I run around disinfecting everything she touches, lol, and he takes vitamin D and C.
Strangely enough, my son doesn't seem to get sick anymore often than he used to. This year my non-IBD daughter has been sick more often.
Hope the strep goes away soon

 

[my little penguin]

DS was 7 at dx so lots of kid viruses going around in second third and fourth grade .
He has been on 6-mp , remicade and now humira for almost three years .
No extra colds etc....

 

[Princessmomof2]

This whole thing with having an immunosuppressed kid is so new to me. I have always been a freak about hand washing. But Nick has not been back to school since this all started in February, so I'm relieved about not having to worry about the germs from school, although I know it's just temporary. He has basically been in the house for 2 months with his PICC line and all, but I guess when he gets back to the real world, we will continue good hand washing and I will just encourage him to STAY AWAYYYYYY from obvious sick kids!!! LOL

 

[Mehita]

If you don't have one yet, princessmomof2 and jland25, look into getting a 504 plan at school. Very helpful! You can include things like wiping down desks and personal keyboards that theyy don't have to share with others.

http://www.ccfa.org/resources/template-section-504-plan.html

 

[jland25]

This 504 plan is awesome! My son already has an IEP because of his autism, but this is a great explanation of his new medical needs and I will be sure to have it added. One blessing is that his school has been very understanding and accommodating about all this. All credit to my son, who's a sweetheart--if I do say so myself!

 

[DustyKat]

I too haven’t noticed an increase in infections/viruses with my kids since starting Imuran.

As to keeping them healthy? I guess my main focus is keeping things balanced. By that I mean a combination of diet, exercise and ensuring that any vitamin and mineral deficiencies are being dealt with. I have levels run every 2-3 months and only supplement to what is lacking, having said that continued use in our case has been required to maintain therapeutic and adequate levels. My kids have Ileal Crohn’s and have had resections so they are prone to certain deficiencies and these deficiencies do play a role in healing, controlling inflammation and maintaing a ‘normal’ immune system.

Dusty. xxx

 

[jland25]

Thanks, Dusty.

My son has Ileal Cronh's, too, so that's good to know. There's a steep learning curve for all this, for sure! And I have an immune disorder (common variable immune deficiency) and even though my son does not have that disease--thank goodness!--I am ever vigilant.

 

[DustyKat]

{HUGS} and kudos to you mum!

Okay, so with Ileal Crohns’s these are what I have honed in on:

Iron Stores - This will detect anaemia that is not apparent through the haemoglobin route. What the body does is draw on these stores in order to prop up the haemoglobin.
Folate.
B12 - The terminal ileum is the only place in the bowel that B12 is absorbed.
Vitamin D - I aim for a level of 120 (if you are in the US this will equate to a reading of 70).
Magnesium. - I aim for a minimum of .90.
Zinc.

I also supplement with Turmeric (with black pepper) which is an anti inflammatory. There is quite a bit on the forum about it but I had never acted on giving it until the GI suggested it.

Dusty. xxx