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Dermatologist Appointment Today!
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I'm off to the dermatologist with my 6 year old DS today! Wish us luck!

 

 

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Good luck! I think a gluten-free candy treat will be well earned!

Keep us posted.

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Good luck! Hoping for good things to come.

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Well...we're back. Thanks for the good luck messages!

 

I'm disappointed in the whole visit, but not surprised based on experiences I've read here. 

 

First off, I guess that I should be grateful that the derm didn't dismiss DH. He said it looked like a "mild" case (mild, like mildly pregnant? I felt like saying). But then said maybe not because it's only on his buttocks, lower back and hips, not elbows, knees and neck like it "should" be (grrrr). 

 

He said he couldn't find an active lesion to biopsy and that if he did a biopsy I would be disappointed with a negative result then we wouldn't be any further ahead. And that he didn't want to traumatize my son with the biopsy (??) though he understood how much I must want an actual diagnosis (uh...yes!). I did mention that I understood that the biopsy should be taken from healthy skin adjacent to an active lesion and he seemed to understand/agree...not that he actually did one.

 

Then he gave me a prescription for hydrocortisone (stronger than the one we tried months ago from my GP). He said come back in 6 weeks and we'll go from there.  When I asked about eating gluten or not he said he may as well stay off it because "it's not doing him any good". I tried to get him to tell me the point of the hydrocortisone, he just said it was to "treat it" ... and we can try other things to treat it after 6 weeks. Then he started taking about doing a biospy next time.  ARGGHghhhh...I was feeling rushed and really got flumbled up and didn't think of the right things to say until I was back in the car. 

 

I know he shouldn't do the steriod because it will negate the biopsy if he does one next time (but I forgot that in the moment). And he shouldn't be gluten-free before a biopsy either. I really feel like I screwed up despite being so prepared going in, or so I thought. 

 

So, what would you do now? 

 

This is what I'm thinking of doing:

-don't use the hydrocortisone (and say I did, that it got a bit better, but flared up when I stopped using it)

-keep him on a gluten diet  to flare up the rash and hopefully get a biopsy at our next visit (though I hate to do this obviously)

 

Our next appt is in six weeks, but he did say to call if it gets worse in that time.

 

What would you do??

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DO NOT beat yourself up over this!!!!! You can go in prepared as all heck & they can screw you up so bad that you forget half of what you wanted to talk about EVEN with notes! And they do rush you. You did really good considering. Yeh, I would have wanted to make a crack about "like mildly pregnant" also.  <_<

 

I am so glad you understand about the hydrocortisone cream! 

 

I don't think I would tell him you used it. I just wouldn't mention it unless he brings it up & then I would tell him that it will negate a biopsy so it wasn't a good idea to use it. Course, that's me & I tend to toss the vinegar right in their faces rather than using honey but he's already proven he doesn't know that it will fudge the biopsy soooo...... But like I say ~~~ I'm not very diplomatic AND I am not a mom bringing in her child.  I think I would be inclined to keep him on a gluten diet & if & when it flares then give him a call & tell him you want him to do a biopsy NOW.

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squirmingitch, I would love to give you a huge hug right now. You made me feel SO much better! You're right, I will only mention the hydrocortisone if he asks.

 

 

 

I'm still kind of unsure of what he expects an active lesion to look like. Yesterday my DS had some open lesions and then lots that were halfway healed. He wasn't actively itchy at the appointment so it looked rather calm. I don't know if the derm will be able to see an actual blister since they get scratched off right away. I'll post a picture when I have a few seconds later.

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Awwww hon, it's hard to be a parent. I have to hand you credit. Even harder being a parent when your child has an illness. 

 

I've been thinking.......

What I think I would REALLY do? Keep him on gluten & start looking for a new derm right away. See if you can't get him in before you have to go back to the one you saw yesterday. Hedge your bets. I have to say the derm yesterday doesn't really seem to know his stuff. My gosh! I can't believe that statement about it just being a mild case. And if you take him off gluten then a biopsy can't be done. Where is this doc coming from?????? 

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Awwww hon, it's hard to be a parent. I have to hand you credit. Even harder being a parent when your child has an illness. 

 

I've been thinking.......

What I think I would REALLY do? Keep him on gluten & start looking for a new derm right away. See if you can't get him in before you have to go back to the one you saw yesterday. Hedge your bets. I have to say the derm yesterday doesn't really seem to know his stuff. My gosh! I can't believe that statement about it just being a mild case. And if you tak e him off gluten then a biopsy can't be done. Where is this doc coming from?????? 

Ahh..if it were only so easy to get a new dermatologist. I'm in Canada.We need a referral from our family doctor. I really had to talk mine into giving me this one because I'd already had the emailed photo consult with the pediatric derm. And usually waiting times for a derm referral are 6-9 months! I got in to this one in only two weeks (his amazing admin did a favour for the mom of an itchy boy, I'm thinking). So..I think I'm stuck with him. But I am going to call him as soon the rash starts getting worse.

Thanks for thinking of us though squirmingitch! 

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Ahh..if it were only so easy to get a new dermatologist. I'm in Canada.We need a referral from our family doctor. I really had to talk mine into giving me this one because I'd already had the emailed photo consult with the pediatric derm. And usually waiting times for a derm referral are 6-9 months! I got in to this one in only two weeks (his amazing admin did a favour for the mom of an itchy boy, I'm thinking). So..I think I'm stuck with him. But I am going to call him as soon the rash starts getting worse.

Thanks for thinking of us though squirmingitch! 

There's always a catch isn't there? Loud scream of frustration!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

Okay, life gave you lemons. Let's go make some lemonade.

 

One foot in front of the other & then the next & then the next annnnnnnd breathe.

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:)

Yep, one foot forward...breathe and focus on the positive: we are going on a trip this weekend and I don't have to pack 5 million things to eat, DS can enjoy restaurants and a few gluteny treats. His itch hasn't been manageable the past few days and he's thrilled to be eating gluten!

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    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
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