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Crohn's Disease Forum » Parents of Kids with IBD » An Unvaccinated Child Taking 20mg Pred, AZA and Remicade


 
04-21-2014, 10:14 PM   #1
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An Unvaccinated Child Taking 20mg Pred, AZA and Remicade

Well, I didn't intentionally not vaccinate my son, he was actually quite up to date on paper, but I found out today that he failed his titers (no chickenpox or hep b antibodies) and had to have his MMR titer tested again today as they were inconclusive or something (those results are still pending).

But, as the title says, we're rockin' some hardcore drugs (20mg pred, AZA and Remicade) and it really seems like my son should have had all his immunizations in order before getting to this point? (He had his first Remicade today, and gets to stop Lialda tomorrow).

So we were told to wait until his second Remicade infusion to have his hep b immunization, but we're a no-go for pox and, MMR should he need that, too.

What do I do now? Do I make him a bubble? Write Jenny McCarthy hate letters? Squash all dreams of traveling abroad? Can we at least take him to Canada? I do know I will be getting a healthy supply of quality thermometers... that you can't talk me out of!

So I don't know... did I even have a legit question in this ramble?

Oh, and hello, I'm a newb IBS mother to a 10 year old son who has 3ish months of a Crohn's Colitis diagnosis under his belt.
04-21-2014, 10:20 PM   #2
afidz
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Hello and welcome! I dont' know very much about the topics you have posted, but I imagine they don't want you to have the pox and MMR because Remicade weakens the immune system and he might not be able to fight what ever the vaccine contains.
I also wanted to mention IBS and IBD are 2 different things. IBD (Crohn's and Colitis) is Inflammatory Bowel Disease while IBS is generally just a general diagnosis when a doctor can't figure out a persons upset stomach, that stands for Irritable Bowel Syndrome. Tons of people get them confused ( I did too, until someone informed me of the difference on here)
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04-21-2014, 10:29 PM   #3
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I believe the Hep B vaccine is recombinant, and therefore safe to readminister to someone who is immune suppressed. Not all vaccines are dangerous to the immune suppressed, only live form based ones like Yellow Fever or the nasal flu vaccine. Talk to your doctor about booster shots and see if there are dead/recombinant forms of the vaccines you'd like him to be updated on and testing to make sure he properly responds this time.
04-21-2014, 10:30 PM   #4
theOcean
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Welcome to the forum! Your son isn't the only one rockin' some hardcore drugs here. Unfortunately you do need to wait to have any live vaccines, I think for both Remicade and Imuran since that's an immunosuppressant as well. I'm sure your son's doctor can advise you best on what to do there, or one of the many parents on this forum.

In terms of keeping things sanitary, just make sure he washes his hands a lot, and tell him to be careful out in public. I often try to use my sleeves on things instead of my hands, to avoid bacteria when possible. If it's unavoidable, I just remember to wash when home. Or, if you're with him, you could also carry some sanitizer. Also make sure to warn him to be careful around friends or family who are sick!
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04-22-2014, 05:47 AM   #5
Johnnysmom
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I am actually impressed that your son's Dr. tested him for antibodies. My son's Dr is at one of the best Children's hospitals in the world and he has never had his levels tested before. I will be sure to ask his GI about this at our next visit. My guess would be that if tested many kids would not show immunity.

We have made a huge effort in hand washing and use of wipes (when we can't get to a bathroom) and it has made a big difference. We are also in contact with the school nurse who lets us know if anyone has any major illnesses at school. She will let us know if our son is in close contact with the other student and then our Pediatrician will prescribe antibiotics if they have any classes together.

Let us know what your son's Dr recommends. Welcome to the forum!
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04-22-2014, 07:22 AM   #6
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Hey 34, welcome to the forum. I have some experience with what you are dealing with. My kid was up to date with vaccines when going on Remicade. Due to the timing and the ministry of health, scheduling some vaccines in school while she was either in the hospital or just out of hospital she missed the meningitis & gardasil vaccines. The plan from the doctor was to wait 3 months after the loading dosages and then get her up to date.

Unfortunately during that time Remicade presented some major issues for her and she had to go off it. We had to wait 3 months off Remicade before she could get caught up and she was able to update before going onto Humira.

Like others have said, no live vaccines. I had thought of writing angry letters to Jenny McCarthy when a few acquaintances heard about my daughters diagnosis and blamed vaccines.. You aren't the only one that wanted to wake that woman up to latest research. At least now she is starting to publicly reverse some of her stance on the issue. The damage though is probably done.

I am grateful to be here in Canada. As an American I am very aware of the stresses we would be under if I had my kids back home. We do have our issues here too. To get through the system once we figured out what this probably was (not a reoccurring stomach flu) we waited 4 months to see a GI. A positive though is we have been in the hospital 4 times and the only thing I pay for is wifi. Keep us posted on how things go and ask questions if you have them. Great people and amazing info can be found here!

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04-22-2014, 09:08 AM   #7
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Hi there 34 and welcome! My daughter has been on Remicade for two years now (max dose and short interval) and Methotrexate for a year. She is the healthiest one in the house when it comes to communicable diseases. We have all been down for the count with cold's, stomach viruses etc and she is a rock. Immune suppression doesn't mean the end of the world. Just means that you have to do what you otherwise probably would have ignored. Good nutrition, good sleep, exercise and vigilent hand washing. As an immune suppressed person he has to rely on herd immunity for the diseases that require live vaccines as he can not get those vaccines.

TB testing is a must with Remicade because that is the big no no when it comes to Remi. I am surprised the doc started him before conclusive results came back. Our doc also requires testing every year.

When it comes to travel, get yourself a good travel doc. No visits to areas that require live vaccines but even beyond that our travels have been nixed when it comes to traveling to areas with a high incidence of TB. So we can't travel to a disease infested third world nation and sleep in tents with potty holes in the ground (yes my daughter wanted to do that!) but the 5 star hotels in Europe are in!

I hope the drugs are working for him and that he enjoys a long period of remission free from any blips.

Oh and ask us all for our bubble contractor...we have all been there. I once threatened to hire a resident GI to live in our home and look over my daughter on a daily basis
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Daughter T dx 1/2/15 at age 11
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04-22-2014, 09:23 AM   #8
Mehita
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Before starting Remicade, we tested my son and he had a big fat zero for Hep B antibodies. We decided to do a Hep B booster (as opposed to the entire series again) and it didn't stick. This happens to approximately 10% of the population. Lucky us, huh? Our priority has been to get his Crohn's under control and we'll revisit our vaccination options this summer at his next appointment.

One suggestion if you do new or redo old vaccinations, call ahead and ask about the live/dead strain to be sure they are knowledgable and prepared for you. While I love our ped, his office never seems to know the answer and we now get our immunizations at the GI office instead.
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04-22-2014, 09:48 AM   #9
Tesscorm
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Welcome to the forum!

This has also been a bit of a concern with me. My son has been on remicade for just over a year but had all his vaccinations as a child, however, I wasn't aware that some people just don't develop the antibodies. When we were planning a trip to Dominican Republic, a travel doctor tested my son for immune levels to tetanus, etc. and this doctor happened to test for measles, mumps, rubella and we found out he has low mumps immunity.

I researched all I could to try to find a solution, ie a non-live MMR vaccines or just a 'mumps' vaccine but wasn't able to find any useful info. It does worry me but we now rely on simple hygiene and the vaccinated 'herd' protecting him.

As far as travelling, my son travelled to Dominican Republic with no problem. But, he was up-to-date and had appropriate immunity to everything else - hepatitis, tetanus, etc. One doctor did suggest an anti-malaria vaccine, unfortunately, I can't remember what it was called but, I'd read there was some sort of issue with GI issues and his GI did not believe he needed this vaccine as a form of 'protection' as the risk of malaria was so low anyway.

But, as said above, being immunosuppressed does not mean you will catch anything more easily, just that you may have a tougher time with it if you do catch it. Up until yesterday, my son has barely been sick since starting remicade (and his roommate at school was diagnosed with mono in the fall! :eek). Yesterday, though, my son tested positive for strep throat so, I guess, we'll now see how quickly/easily he recovers.
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Last edited by Tesscorm; 04-22-2014 at 10:46 AM.
04-22-2014, 09:56 AM   #10
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Welcome,
Good for your doctor for testing. We recently started remicade and no testing for immunity only a TB test. I've built that bubble and while it's been popped a time or two I just keep patching it up.
Strep and Mono were going around my son school at about the same time as he started remicade and he managed to avoid it and certainly has not been any sicker or gotten more colds since starting remicade.
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04-22-2014, 12:21 PM   #11
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Not being vaccinated for legitimate reasons isn't dangerous unless the areas fall under Herd Immunity levels for the illness. Given the antivaccine crowd is working very hard on doing that because it requires something like 80% or more of the population to be vaccinated in most cases.
04-22-2014, 01:07 PM   #12
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My son also has no chickenpox antibodies and is in the process of being vaccinated before starting AZA. Orchid is right in saying that for the more common illnesses it shouldn't be a big issue unless herd immunity levels fall but here in the UK chickenpox is not part of the childhood vaccination programme.
04-22-2014, 05:17 PM   #13
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My apologies, I don't see a good way to quote easily in this forum yet, so you get a rambling reply.

My son was tested for TB before Remicade. He had two inconclusive blood TB tests and an x-ray, and then finally a skin TB test that gave a nice negative.

So it's impressive our doctor even did these tests, huh? Well, that's good to hear. I don't feel right second guessing his doctors because we are being treated at a supposedly impressive pediatric IBD (thanks for the explanation on that afidz) places also. But, I shouldn't just place all my trust in them... mistakes or oversights can happen to the best of us too, I suppose.

I was finally able to access his online med crap today, after months of issues. I see that his MMR retesting labs are back. As far as I can interpret, I believe he's good on the Ms, but bad on the R. 2 outta 3 ain't bad I guess

He also had other labs that were "bad". My friends are like "don't Google them!". Ha! As if!
04-22-2014, 05:18 PM   #14
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Oh, and thank you all for taking the time to reply, and all the kind words (and the shared Jenny rage). <3
04-22-2014, 05:19 PM   #15
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My friends are like "don't Google them!". Ha! As if!
Oh how guilty I am of that!!
04-22-2014, 05:20 PM   #16
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Oh how guilty I am of that!!
Right?
04-22-2014, 06:14 PM   #17
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If post the result your worried about here, we can google the more trusted sites for you.
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04-22-2014, 09:02 PM   #18
crohnsinct
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[QUOTE=34 Hour Reset;769524]
My friends are like "don't Google them!". Ha! As if![/QUOTE

Hahaha...that is why I don't get results...I know myself to well...self preservation. I am thinking of starting up a googlers anonymous chapter.
04-22-2014, 09:04 PM   #19
crohnsinct
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If post the result your worried about here, we can google the more trusted sites for you.
Right because we aren't happy googling just our kids...you have joined the group and fed our obsession. We google everything for everyone! But yeah, Catherine has a good point...a lot of members here can save you time and worry if you just tell us what you are curious about. Lots of btdt.
04-22-2014, 09:18 PM   #20
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OMG, you have found the right people and the right place if you want to analyze results and info!

If post the result your worried about here, we can google the more trusted sites for you.
See, not only do we google our own children's results but we google others' as well!

This forum and the amazing parents/members have saved my sanity a million times! An abnormal result can be scary if you don't know what it means - having people share their knowledge and experience is a lifesaver! But, if you've read through some of the other posts, you've probably seen many of these conversations.

While I can't control that my son has this disease, I can certainly control my knowledge of it and play an active role in ensuring that he gets the best care I can get for him. And, I have found mistakes (not big ones! but more than I'm happy with...) so, all the more reason for me to google and learn.
04-22-2014, 09:19 PM   #21
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CIC - Great minds think alike!
04-22-2014, 10:40 PM   #22
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You guys are awesome, lol.

And to make matters worse, after 3 months of issues, I now have online access to every effing lab and detail... I'm now seriously backlogged in Googling.

But if you're really into helping me Google my own child, I'd like help with this lab. I imagine it's just the meds he's on? Logic tells me that this lab means nothing since the clinical notes after his doctor reviewed all these labs didn't seem to make mention of it (or if it did, it did so in terms I don't understand), but I still don't like the number. I can call or email to ask them, but what says you?

04-22-2014, 10:41 PM   #23
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Probably something to do with the Aza, or the Lialda or prednisone messing with t cells or something, blah blah blah, yes?
04-22-2014, 10:54 PM   #24
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I'm thinking Aza, I had a quick look at Jack's labs while on Aza and his were on the lower end of normal while on it. I'll be back to post more but for some reason my kids don't want to go to bed tonight and I'm going to have to go get serious with them
Although someone more knowledgeable then me will probably be along in the meantime. Dustykat, MLP...
04-22-2014, 11:03 PM   #25
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Lymphocytes are a class of immune cells that most of the adaptive immune system are composed of. Azathioprine and Prednisone are behind the lower levels here, more the Azathioprine. Lymphocytes are simple cells that need to divide quickly, Azathioprine stops them from synthesizing new DNA de novo, so they can't divide because they lack the means more complex cells in your body have in your body to get around being unable to make new DNA wholecloth. Prednisone may also be lowering their numbers but by simple downregulation of processes associated with simulating immune cell production.

In English, this is to be expected, and is actually a sign that treatment maybe working.
04-22-2014, 11:07 PM   #26
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Lymphocytes are a class of immune cells that most of the adaptive immune system are composed of. Azathioprine and Prednisone are behind the lower levels here, more the Azathioprine. Lymphocytes are simple cells that need to divide quickly, Azathioprine stops them from synthesizing new DNA de novo, so they can't divide because they lack the means more complex cells in your body have in your body to get around being unable to make new DNA wholecloth. Prednisone may also be lowering their numbers but by simple downregulation of processes associated with simulating immune cell production.

In English, this is to be expected, and is actually a sign that treatment maybe working.
I was just itching to say, before your last paragraph, that even while I do not understand your words, or the way you arranged them, they were comforting none-the-less, lol.

But it's good to hear that this is to be expected, and I also now know a new Latin word (which I'll forget in minutes).
04-22-2014, 11:08 PM   #27
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Alright lets see what I can add. From what I understand it is generally looked at in conjunction with white cell count, was that in normal range? When is next blood draw? It may just be something that he is watching to see if it is a one off thing? Did you recently adjust dosage?

Just looked at your original post and see it's just been 3 months. Aza can take 3-6 months to become fully effective.
04-22-2014, 11:11 PM   #28
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I'm sorry, I just enjoy talking about the immune system so much I lose track of myself! It's so FASCINATING.
04-22-2014, 11:23 PM   #29
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Alright lets see what I can add. From what I understand it is generally looked at in conjunction with white cell count, was that in normal range? When is next blood draw? It may just be something that he is watching to see if it is a one off thing? Did you recently adjust dosage?

Just looked at your original post and see it's just been 3 months. Aza can take 3-6 months to become fully effective.
I don't see any labs for white cell count, but I assume there's a more technical name for that lab and that's why I can't find it.

We hadn't changed dosages of anything for a few weeks prior to that blood draw, but dosage changes are slated in our near future with the start of this Remicade and removal of Lialda.
04-22-2014, 11:27 PM   #30
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You're looking for a CBC or FBC, which is a complete count of all blood cells.
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Crohn's Disease Forum » Parents of Kids with IBD » An Unvaccinated Child Taking 20mg Pred, AZA and Remicade
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