Doctor issues

[twylasmom]

Hi I'm new to this site. My daughter was diagonosed with crohns and ibd 4 years ago. Since then she has been on numerous drugs to control it. Now she is on an ifusion treatment of remicade every 7 weeks. It started out as 8 week treatments but her crohns and ibd was starting to come back within 2 to 3 weeks prior to her treatments. So her doctor put on a 7 week schedule.]

The remicade has helped with controlling her symptoms except for the side effects of it. We are in the middle of a shingles attack at this time. Brought on by the remicade. Mind you she is only 12 years old. I had to take her to our primary care doctor to treat this. He's great by the way. She also is very fatiqued for a few days afterward. And not to mentioned the time away from school and my job.

I tried to schedule an appointment with her gastrologists to discuss other medications. but of course she can't see her until october. Mind you this is july. I even asked the appointment girl about calling if there is a cancellation. She just told me they don't do that. What if my child needed to be seen right away. She told me to take her to the er.

I've been trying to find another doctor to treat her for crohns but to no success. She is presently being seen at childrens mercy in Kansas City. They did offer to let her see a nurse practioneer in September, but by then we'll have another remicade treatment done. What will the side effects be this time, who knows.

I'm almost tempted to taper her off of it myself. I know this is crazy, but if you can't see your doctor to get the advice or help you need what can you do?

Has anyone else experienced problems with finding a doctor to treat pediatric crohns? And has anyone else had experience with remicade side effects?
Any feedback would be helpful.

 

[Tesscorm]

Oh, I so feel for you as I am having similar doctor issues for my son. At end of June, I was told MRE results showed 20-30 cm of 'continued' active inflammation (prior, had only been told there had been asmall area of mild inflammation at TI ), this was just as they were telling me he had to be transferred to an adult GI and that they could no longer care for him after his birthday - which by the way was in DAYS (July 5!) and first available adult GI apptmt (which they arranged) is in October! (They did agree to keep him as a patient but it seems only on an 'urgent need' basis.) Oh and most recent results show elevated liver enzymes but all they are doing now is offering to, at some point, ask the adult Gi to move up the apptmt!!! So absolutely frustrating and frightening!

I wish I had some advice for you! (I will certainly be interested in any you receive too!). All I can say is keep on top of them... I will be following up in a few days if I don't hear about a new date for the next GI, if apptmt cannot be moved up, then I will have to 'follow up' myself (pathetic, eh?) by either insisting they follow up with more tests or with our GP (filling in that time gap between GIs). Don't be shy! It's your child's health!

I have no experience with remicade but there is a Remicade subforum (under Treatment) where I'm sure you'll find lots of info. Please also look and introduce your daughter's story in the Parents of Kids with IBD subforum - there are many other children on remicade there and, I'm sure, their parents can offer you some advice. You'll find lots of support and experience there

Good luck!!

 

[Clash]

Hi and welcome to the forum so sorry that your daugher is going through so much and you as well! I don't really have any advice as to the doctor situation My son is 15 and started Remicade this year but he really hasn't had any side effects although the day of the infusion he is tired for sometime afterward but I think this may be due to the benedryl they give before the infusion so I really can't help you there. Is the GP able to help with the shingles? Maybe you could phone the GI again and express your concerns about having another infusion before the GI sees her as she now has the shingles and you are afraid to have her infused while that is active. Sorry I haven't been of much help but there is alot of support here and hopefully someone with more experienced advice with be by shortly.

 

[David]

Hi there and welcome

Wow, October? That's insane! I can't imagine how frustrating that is on top of everything else. I'm so sorry you're having to go through this

One thing I CAN suggest is to check out our Parent's of Kids with IBD forum. The parents there are absolutely amazing, supportive, and very knowledgeable.

I wish you and your little one all the best.

 

[Lucinda]

Wow. I can't even imagine. My instinct as a mama would be to call the doctor's office daily until they listen to you. But I'm not a mama with a child with Crohn's so I really have no place offering any advice. Just support. I think David's suggestion is great. Other parents will be able to give you a lot of ideas, advice, and support. Good luck. I do hope the next round of Remicade is easier on her.

 

[Farmwife]

Hi and welcome.
I just read your story. I also have to wait till October for my 3 1/2 year old girl.
She is still undiagnosed.
I'm calling almost ever week with one question or another.
I think they finally see that it's more than just normal GI issues.
The last time I called the nurse She said the doctor will do a scope if her problems go a certain way.
For our GI, I think that's the TRICK is to keep calling
so they see what you see every day.
Or they just get plan tired of you calling.
Either way your getting what you need for your girl.
Please come join the parent forum.
Lots of good advice from parents going through the same thing as you and your daughter.
You might even get a laugh now and then. Some of those people are funny!!!!


Farmwife

 

[TheyCallMeRC]

Hi I'm new to this site. My daughter was diagonosed with crohns and ibd 4 years ago. Since then she has been on numerous drugs to control it. Now she is on an ifusion treatment of remicade every 7 weeks. It started out as 8 week treatments but her crohns and ibd was starting to come back within 2 to 3 weeks prior to her treatments. So her doctor put on a 7 week schedule.]

The remicade has helped with controlling her symptoms except for the side effects of it. We are in the middle of a shingles attack at this time. Brought on by the remicade. Mind you she is only 12 years old. I had to take her to our primary care doctor to treat this. He's great by the way. She also is very fatiqued for a few days afterward. And not to mentioned the time away from school and my job.

I tried to schedule an appointment with her gastrologists to discuss other medications. but of course she can't see her until october. Mind you this is july. I even asked the appointment girl about calling if there is a cancellation. She just told me they don't do that. What if my child needed to be seen right away. She told me to take her to the er.

I've been trying to find another doctor to treat her for crohns but to no success. She is presently being seen at childrens mercy in Kansas City. They did offer to let her see a nurse practioneer in September, but by then we'll have another remicade treatment done. What will the side effects be this time, who knows.

I'm almost tempted to taper her off of it myself. I know this is crazy, but if you can't see your doctor to get the advice or help you need what can you do?

Has anyone else experienced problems with finding a doctor to treat pediatric crohns? And has anyone else had experience with remicade side effects?
Any feedback would be helpful.

You are not alone. I am 41 years old and have had Crohns since 24 and it has been 4 weeks since I made my appt. and still have 2 more weeks to go. They tell me the same thing that if it gets worse then go to the ER. And the ER docs. don't know half the time what they are looking for and are CT scan happy. Didn't mean to be negative on your post, just wanted to let you know that you weren't alone.

 

[xmdmom]

I would talk to your primary doctor (GP) about your difficulties and perhaps he could help communicate your concerns to the gi doctor and/or help you get an earlier appointment and/or suggest another gastroenterologist. We had difficulty with a gastroenterologist and my son's pediatrician made a call and we were able to switch to another gi doc in the group (something they "never" do) and my son got an appointment a few days later.

 

[Cross-stitch gal]

I am not a mom, but I too have been strung along by my GI. I agree with xmdmom, if I were you I'd talk to her regular doctor and ask for a second opinion. I finally asked for one myself and am glad that I did. Good luck and hope your girl feels better soon

 

[twylasmom]

Thanks everyone for your concerns. It helps to here everyones suggestions. I will definitly check out the parents forum.

I think its crazy that as soon as they got her diagnosed they just quite needing to see her. The first year we were at the clinic every month or so. Now its like they have the attitude of "We told you what was wrong, what else do you what?"

Her family doctor might be able to help. I never thought to ask for his advice on getting appointments for me if they are needed. Its funny how a man who sees numerous patients on a daily basis can fit us in twice in one week with no problems, but a doctor who see people for one thing specifically can't get you in for months. Either there is a huge amount of children who have intestinal issues in Missouri or they have other things to do.

Anyway enough ranting. Thanks again for the suggestions. Its good to know we aren't the only ones out there with similar problems.

 

[twylasmom]

Hi and welcome to the forum so sorry that your daugher is going through so much and you as well! I don't really have any advice as to the doctor situation My son is 15 and started Remicade this year but he really hasn't had any side effects although the day of the infusion he is tired for sometime afterward but I think this may be due to the benedryl they give before the infusion so I really can't help you there. Is the GP able to help with the shingles? Maybe you could phone the GI again and express your concerns about having another infusion before the GI sees her as she now has the shingles and you are afraid to have her infused while that is active. Sorry I haven't been of much help but there is alot of support here and hopefully someone with more experienced advice with be by shortly.

You should see if they can give him zantac pills instead. They weren't able to do this for twyla because of her weight. I know the benadryl really bothers her in the iv form because it stings. The remicade nurse said as soon as she gains some weight they can switch her to zantac pill. (I believe they are zantac, ask about this to make sure) One miracle drug one of the nurses came up with is a cream we put on twylas injections sight a couple of hours before her infusion. It numbs the area so that she doesn't feel a thing. I'm tempted to try it the next time I need blood work done. HA! HA! I know at 15 boys want to act tough, but any thing to help the process may not be so bad.

 

[Clash]

Thanks for the advice. We actually drive 3 hours to his GI lab so he likes the idea of sleeping the ride home so we haven't changed the benedryl. LOL By the time we get home the fatigue seems to have worn off.
I have seen other people post about the numbing cream too. I think my son said that some of the kids in the infusion lab do use. He was terrified of needles for a long time but I think the dx process cured him of that...so many needles and tests.
I do hope you are able to get some relief for your daughter as far as treatment. The kids have to go through so much, it amazes me how strong they all are.
Oh and I thought of something else that forgot to mention. My Mom, is on Remicade for RA and she got Shingles recently, well several months ago, she checked with her internist and rheumy and they wanted her to go ahead and have her next Remicade appt. The infusion went fine but she is also second guessing sticking with the Remicade. It may be different depending on the illness the Remicade is treating, Crohn's or RA, but just wanted to pass the info along too you! Good luck!!

 

[DustyKat]

Hi twylasmom and :welcome:

I am so sorry to hear about your girl and all she going through, bless her...:hug:

I don't have any experience with Remicade but you have already been great advice and direction as to where to go on the forum.

I too would seek the advice and assistance of the family doctor (GP) . I know the system is different here as that is normally the route we go anyway, the GP coordinates all care via the specialist, but it can be a good way of getting things done and organised and the doc can advocate on your behalf to specialists.

Hmmm, they don't do cancellations? No doubt you found that incredulous! Since appointments seem a rarity put the girl on the spot and say...well if I can't get an appointment until October I will need to speak to the GI now, if he is unavailable I will expect a call back. If I don't get a call back then I will keep ringing until I get answer to my questions. If they get snooty about it tell them to walk a mile in your shoes and then cast judgement. :wink: Failing all that get the GP to do it!

Shingles aside, what sort of side effects is your daughter having?

Where is her Crohn's located?

If there is ileal involvement is she having regular monitoring of B12, Folate, Iron Stores and Vit D?

Good luck and Mum and welcome aboard!

Dusty. xxx

 

[Thermo]

I have not heard of shingles being a side effect of Remicade. I have had shingles myself due to my Crohns. It's more of a side effect of the disease in that shingles is a latent form of chicken pox that since your immune system is compromised the T cell holding the chicken pox accidentally gets released and you get shingles which is a form of chicken pox. I would strongly recommend finding another doctor 3 months is too long of a wait, but I would recommend keeping the Remicade treatments going as unless she is experiencing shortness of breath and lupus or heart related problems she is most likely not in any danger. With my Humira injections I get random issues here and there like intense allergies and some rashes. They do say at times the medications to treat the disease is worse than the disease, you just have to weight the options.