A few questions for parents...

[izzi'smom]

My 4 YO dd is experiencing her first "flare" (1 month after weaning from Orapred) and her ped GI wants to do repeat bloodwork and stool cultures. She just had them done in February, isn't bleeding more than she has in the past (and her iron levels were within normal limits after bleeding for 3 months before)...I'm just wondering if this is standard procedure for others?

I understand that her life will be affected by her dx, but I hope to limit the poking and prodding while getting her the best care possible.

Also, anyone on a 5ASA other than Pentasa that is available as a liquid? DD doesn't do pills yet (we have tried and I am not interested in trying again right now) and we can mix the granules with applesauce, but it is super expensive on our insurance plan. TIA!

 

[MomofIBD's]

Izzi so glad you found us! As my guys are/were bigger when DX with Crohns. I am not sure about the med ?. But as for the testing they test again if there are symptoms starting up again. I know it's hard to our babes getting poked & prodded a lot. But it is necessary. Years ago when my Daniel was 4 they thought he might have systemic onset JRA which required blood tests every week or 2 for a month. The Dr's gave me a cream called Emula cream (spelling?). It's a topical numbing cream. You had to apply it a 1/2 hour before the test. Not sure they still have it but it really helped. I know it doesn't stop anxiety they get but at least it's a help for the ouchies! Let us know how things are. I am sure parents with wee younger ones will stop by & help you some more!

 

[MomofIBD's]

Ps. Not sure about your state medical assistant policies but Crohns is a disability. We were able to get MA for Daniel. It's a lot of paper work but worth not having to worry about another thing when it should be focused on our children. My main insurance pays the bulk of it & the MA comes along & pays the copays deductibles meds & such! It's bad enough we spend an arm & a leg for gas just to get them to the Dr's & such. Any help is welcome in my book. Just my opinion!

 

[Dexky]

Hi Angie, I'm sure Izzi being 4 weighs greatly into your reluctance to have the bloods. I do think that so early in her dx, the bloods should be done more often until they find the maintenance med that keeps her under control. I know you don't want to see her hurt but you also don't want her growth and development stunted more than necessary. I hope the docs get her in remission quickly so she can get on with being a happy toddler! Good luck!

 

[AZMOM]

Agreed with all of the above. It is a royal PAIN to put your baby through that I know. We started with the labwork with Claire when she was 3, did injections at home, etc, etc, etc. I know it is stressful but this is part of the "new normal". You hope the trips to the lab and collecting specimens for the brown bag special :yfaint: are few and far between....but they are part of package. We just try to be low key about it and say "it's just time to check things out" and off we go.....

It will get easier. But gosh, I so remember - I promise I do! Hang in there.....

Hugs,

 

[DustyKat]

Hi Angie and :welcome:

I'm so sorry to hear about your little one and what you are all going through. As the others have said, it is normal to have frequent testing in the initial stages of treatment and 3 monthly certainly isn't out of the ordinary. It really is best to keep on top of things and this is one way to do it. Remission does mean that the tests and docs visits become less frequent and more tolerable from both the parents and kids point of view! :lol:

Julz is spot on about the numbing creams and they are still available, here we have EMLA and Angel cream. Sorry, I can't help out with the meds as my kids are also much older and I don't reside in the US for the insurance one.

Good luck Angie and I hope things can be brought well and truly under control for Izzi very soon. Welcome aboard!

Much love, :hug:
Dusty. xxxxxxxx

 

[izzi'smom]

Thanks for the support! We have tried the cream and for my dd she'd rather just get it over with...she had a reaction to the dressing over it besides. *sigh* if we have to do the testing each time, then we will. I was just unsure if this was "normal" protocol.
What is the easiest way to collect samples? I have her use a training potty but am afraid it's going to scar her eventually (y'know, at 16 LOL!)

 

[Crohn's Mom]

Hi Angie

When I went to the lab to pick up the containers for the stool samples they gave us several of the plastic containers that sit right in the toilet. (the ones the hospitals use for urine collection if your admitted). Just make sure she doesn't pee in them LOL easier said than done with a 4 year old!
Or...you could tape a plastic bag toward the back of the toilet seat if you cant get the bowls from the lab ?

Just a couple ideas....hope it helps...Good luck !!
:ghug::ghug:

 

[troydanielbecker]

I want to tell you a little about our experience. First of all, Isaac gives up a little blood about every month. We noticed that it makes a huge difference who is doing that. The good nurses/techs can do it and it is barely an event. Some really make it traumatic. I've become inured to that poking, but I'm still against repeat rectal exam prodding or repeat colonoscopies (except for dire need--I'm speaking mainly of Isaac's case.). The bloodwork helps to have a record of his various levels and what is happening or how he responds to this or that. We haven't had to do stool samples other than the first million we had to do before the big diagnosis. There was talk about doing more--oh, I take it back, I think we did do another round at one point...

We have given the 5ASA only in liquid form, a compounded dosage of sulfasalazine. Not all pharmacies do it, but it's available. We actually wanted to go to pills, because Isaac has become a pill pro by now, but we're hearing the opposite--that the dosage doesn't come in the entero-coated tablets for Isaac's dose. And, because our pharmacy was making a big deal out of it, it was becoming difficult to get a new prescription in a timely manner. We changed pharmacies though. I think we're good now. It's interesting to me though that we both have young ones, and you have pills looking for liquid and we have liquid looking for pills.

In our case, the sulfasalazine is covered by insurance, but the VSL#3 is not. It looks like you are getting VSL#3--is that covered for you if you don't mind me asking?