Immune Workup after second opinion

[Jfarrelly]

Hello all,
After our second opinion at CHOP and several meds not working on my 4 year old child the Physician there suggested an immune work up. He's already tested negative for CGD, and Dx with Crohn's in July. Their research suggested that there are other immune diseases that present like IBD in children under 5.

His regular GI doctor didn't see the need for a immune workup. I am literally ready to pull my hair out, now I am worried is this not Crohn's. I was wondering if anyone else has experienced this at all?

In the meantime, the lower dose of Pred isn't working and there are discussions on moving to entreral feedings (which my insurance doesn't cover) or methotrexate, and he's already constantly getting colds/viruses from being on the Pred. I'd have to put him on yet another medication, not knowing for sure that's what this is.I guess that is what second opinions is all about.

Hoping someone has been in a similar situation and can put my mind at easy even slightly.

 

[Tesscorm]

I'm so sorry you're going through this. I don't have any experience with an immune workup.

However, re the enteral nutrition, my son did this for six weeks - our insurance didn't cover it nor did the regular provincial healthcare agency. However, a local regional medical agency did cover the cost of the formula and equipment. We were directed to them by the dietitien at our hospital; perhaps there is a similar type of agency where you live?? Also, I've read other parents in the U.S. mention that it may be covered under your insurance's 'durable' items (or something similar to this)... I'm going to page MLP and jmrogers - I believe they mentioned this before.

Good luck! :ghug:

 

[DanceMom]

Our GI is questioning my daughter's Crohn's diagnosis as well and we are getting a few other opinions (ophthalmologist, rheumatologist, another GI). Our GI asked the Rheumo if he thought may daughter may have some sort of immune deficiency but the Rheumo didn't think so. My daughter does not have frequent infections or viruses, and is relatively healthy other than her constant GI issues. If you haven't seen a Rheumo yet I recommend trying one. They seem to see things from an entirely different perspective.

 

[Malgrave]

We have been in similar situation now for one year. Almost all the possible tests have been done including DNA sequencing, gene tests, ... Nothing special has been found yet, still the doctors think that he may have some sort of immune deficiency causing Crohn's like disease.

You might find this thread interesting:

http://www.crohnsforum.com/showthread.php?t=43355

 

[EthanClark]

My son was three before his diagnosis and his GI wanted to test for immune deficiencies as well. We couldn't get into a doctor for quite a while so he had my son admitted into the hospital for a week to do a whole bunch of tests for different diseases. I wish I had kept a record of exactly what they were testing for but it all came back negative. After a second colonoscopy he was diagnosed with Crohn's. I was pretty sure that he had CD the whole time as I do as well but we wanted to be sure before we decided to go ahead with treatment. I would recommend the testing as it gave us peace of mind with knowing exactly what we were up against. Good Luck, it is so hard for our little ones to be so sick. My son is also on EEN and has been since last December. It has been enough to keep him in remission. Good Luck :ghug:

 

[CrohnsKidMom]

Our GI was quite certain of our 8 yr old son's dx. Bloodwork, ultrasound, MRE, indium scan, stool tests, and scopes were done to confirm the dx. No immune work-up was done though. We were given the choice of prednisone, or EEN with NG tube for initial treatment. Methotrexate is what my son is currently on for maintenance. It takes around 8 wks or so for the methotrexate to start working. Further tests sound like a good idea, in your case. I imagine the dr wants to be sure of what they're dealing with before they start other meds. The good thing is, there are no drug side affects with EEN. Take care!

 

[Brian'sMom]

We did immune work up this past summer. My brother is deficient in IGG...so thought maybe this is it...its not really crohns... All came back negative... Its crohns

 

[brucep10]

Have you tried removing wheat from the diet - we did this with my daughter and had immediate results - again, you may have different results, but we tried a bunch of stuff and one we got rid of wheat, she started feeling better.

 

[Brian'sMom]

brucep10, does your daughter have celiac?

 

[brucep10]

Doc would not diagnose it as such....

But I believe it is some sort of irritable bowl syndrome that is related to eating grains...we removed the grains, and low and behold, they symptoms receded..

Frankly, I don't care what it is called, as long as we were able to find a solution....doctors are so afraid to stick their necks out at all due to the threat of mis-diagnosis that they don't do anything it seems....

 

[kimmidwife]

Brucep, I have to agree with that!!! They are so afraid to think outside the box. It is very frustrating!!!!

 

[Brian'sMom]

Brucep, when you say take out the grains, its gluten free diet, correct? We did that when my son was 6 and it also helped. Then we reintroduced gluten and he was fine until he was 10. I've been considering doing that again. It'll be a struggle now with him being almost 14 and loving his Cheez-its and such.

 

[brucep10]

Oh yes - we actually went full-on Paleo -but I know that freaks some people out, she is still on it and doing great, still do potato chips and stuff, which is fun, and the occaisional pizza with gluten--free crust, but basically no grains at all...and limited legumes.

 

[my little penguin]

WE did gluten free plus some more for Ds from birth to age 3.5 It really helped him for a bit.
We tried again twice when he got sick- it didnt work the second or third time for him.

 

[Jmrogers4]

I'm so sorry you're going through this. I don't have any experience with an immune workup.

However, re the enteral nutrition, my son did this for six weeks - our insurance didn't cover it nor did the regular provincial healthcare agency. However, a local regional medical agency did cover the cost of the formula and equipment. We were directed to them by the dietitien at our hospital; perhaps there is a similar type of agency where you live?? Also, I've read other parents in the U.S. mention that it may be covered under your insurance's 'durable' items (or something similar to this)... I'm going to page MLP and jmrogers - I believe they mentioned this before.

Good luck! :ghug:

It took some work but yes I got insurance to cover it. I needed a letter of medical necessity from the doctor. Must have a Rx for the formula and it needs to go through a DME (durable medical supply) We get ours through Coram (coramrx.com) they are national. They also have a patient assistance page for extra financial help http://coramrx.com/patients/PAP/default.aspx.
Insurance did not want to cover at first kept saying they do not cover nutritional supplements, when I said that is was not a nutritional supplement but his sole source of nutrition they covered it. At first they were only going to pay 80% and we ended up paying 20% but then Coram ended up sending me a check for the 20% because insurance ended up covering the whole thing. They were great about working with the insurance company to get it covered.
My son just hit the 1 month mark today! Only 2 more weeks. Our Rx was done for a years time so after all the leg work in February when he was on it, this last time I just called them up and said I need my Rx filled and it was no problem.

 

[Brian'sMom]

Regarding the EN: Brian's GI put on our 'need' for the supplement, 'Failure to Thrive'. I think this is looked upon as serious considering his age and window to grow. Ask your gi. Then without any trouble the insurance covered it.