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Dermatologist Appointment Today!

bluewhitesky

By bluewhitesky
in Dermatitis Herpetiformis

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bluewhitesky Rookie
bluewhitesky
Posted

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

 

 

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cyclinglady Grand Master
cyclinglady
Posted

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

Keep us posted.

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moosemalibu Collaborator
moosemalibu
Posted

Good luck! Hoping for good things to come.

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bluewhitesky Rookie
bluewhitesky
  • Author
Posted

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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squirmingitch Veteran
squirmingitch
Posted

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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bluewhitesky Rookie
bluewhitesky
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Posted

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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squirmingitch Veteran
squirmingitch
Posted

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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bluewhitesky Rookie
bluewhitesky
  • Author
Posted

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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squirmingitch Veteran
squirmingitch
Posted

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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bluewhitesky Rookie
bluewhitesky
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Posted

:)

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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