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bluewhitesky

I Think We Have A Flare Up (Pics)

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A bit of background, very short version: (I have made other posts with the looong version)

My DS (age 6) had what I thought was DH on his bum/hips/lower back. Derm said it wasn't active and come back in 6 weeks to look for changes and potentially do a biopsy. We kept feeding him gluten hoping for a flare, but low and behold it cleared up on its own almost completely. This left me stumped, frustrated, happy for his relief but confused.

 

squirming itch, you said if it's DH it will undoubtedly return, and possibly with a vengance.

 

So here we are:

 

https://flic.kr/p/npNShL

 

This is way worse than his original rash which just looked like mosquito bites. This is raised and lumpy and awful. When I laid eyes on it I felt like I had been kicked in the stomach. Then I convinced myself it was poison ivy. Until this morning when the backs of his ears were inflamed and itchy. Then I noticed a few spots on the back of one knee. 

 

Does this look like DH to you?

 

Our 6 week follow up to the dermatologist is next week. I just called and the doctor's awesome office manager is trying to get us in on Friday. 

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This looks like dh. Let's remember that other things can look like this too BUT, given the history.... One question --- is it on both elbows?

 

BTW, I got them on the backs of my knees long before I ever got one actually on the front of the knees. 

 

Okay mom, let's get busy here & try to get something finalized on this & end it once & for all. I don't know how old you are, but I remember when people did "walk in's" at a docs office & you might have had to wait several hours just sitting there but you eventually got seen THAT DAY. You think you want to give that a go? You don't call, you just show up with son in tow & tell the person at the window the situation & say he needs to be seen today & you are willing to wait as long as it takes for the doc to have a minute to do a biopsy. You can also ask to see the office mgr. & say the same to her (him). Here's the thing..... we don't want the pattern the lab is looking for to get destroyed by scratching. This is THE opportunity & we don't want it to get screwed up. Explain this to the office mgr. In the meantime, do whatever you need to do to protect these areas from being scratched. Ace bandage wrapped numerous times around? We want thick padding over the area so even if he does scratch, it may not destroy the pattern the lab looks for. That pattern is easily destroyed!!!

 

When you see the derm & they are doing the biopsy.... be a helicopter mom right over the derms shoulder. Make sure & don't be shy of speaking up that they do it RIGHT. Ask if they have given the lab instructions that they are to look for evidence of dh --- make SURE that's notated. PUSH HARD for more than 1 biopsy & send EACH to a different lab. This is a subjective test. There is no litmus paper that you can say for certain yes or no b/c of the color the paper turned. This is a subjective thing with whoever in the lab is doing the looking. They should all know what they're doing but it never hurts to get TWO opinions. The lab person is looking for a specific pattern in the staining & if they aren't real good at deciphering what they see..... 

 

If you can get all of that done then you will have your answer one way or the other. If it's positive for dh then you can move on with your life knowing what you need to do & if it's negative, then you know you have to keep looking for an answer but dh is ruled out.

Good luck! 

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Thanks squirming itch! I feel like you are my coach :)

 

So the wonderful person at the Derm's office got back to me yesterday with an appointment for tomorrow afternoon! 

 

I took your advice and covered up the sores in DS's elbow with many layers of gauze to hopefully keep them intact. 

 

It is just on one elbow at this point. His other rashes, bum, hips, lower back were on both sides though. I'll bring pictures to refresh the dr's memory if necessary.

 

He's had a pretty gluteny day, I have to admit. Hopefully he's be good and rashy tomorrow (I feel like a terrible mother for wishing this!).

 

I will follow your instructions and will definitely be a helicopter mom at the appointment to make sure everything is done right. I don't want this to be screwed up!

 

Thanks again for all your support...I will keep you posted tomorrow.

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You are more than welcome! That's what we're here for.

 

Good deal! 

No, don't EVEN think you're a terrible mom! Don't you DARE! You're doing this for the greater good. I know it's hard & I know there is guilt that creeps into your mind; that's only normal & you would be a bad mom if it didn't. 

 

(((((HUGS)))) to you both! 

 

Okay, so it is presenting on both sides everywhere else. Then don't worry about the elbow. That happens sometimes too & quite often it will show up on the other days later. 

 

We'll be waiting to hear how it goes. 

 

Deep breaths, & again, & again. 

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YVW! :)

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We did it!! Appointment is over. Biopsy done!!

 

The first thing the dermatologist said when he walked in was, "So Mom wants a biospy." He said the new lesions were active (I was worried he'd put us off again). I said that I understood it needed to be taken from skin adjacent to the lesion. He said quite firmly, "I know what I'm doing". Then from that point on he explained everything he was doing, step by step, he went though the paperwork, told me how he was requesting direct immunoflourescence, putting the sample into a special solution (Michel's solution) etc. He took perilesional sample and one from an actual lesion (he said there were specific instructions to look for a different IgA pattern on that one...I've only ever heard that the IgA would be gone from there but at that point I didn't care). I didn't push for an extra perilesional one because I was feeling good about how things were going and frankly, having my DS's little elbow swelled up with the local anesthetic and poked with two bleeding holes I didn't know where he could find a spot to do another. If he had an outbreak on a different part of his body that might have been different. 

 

I was trying as hard as I could to be a helicopter! At one point he had to tell me (nicely) to get out of his way ;) 

 

DS was amazing! The doctor said he'd never seen a kid so calm around a needle. He didn't cry, he didn't even flinch actually. He was amazing.

 

I feel like I have a huge weight lifted off my shoulder. No more weird anticipation for a reaction. I'll keep him on gluten until after the results, just in case we or our family doctor wants to do bloodwork again (I don't think he was on gluten long enough for the first round). Then we'll go off gluten no matter the results of the biospy...unless the derm can give us proof that it's something other than DH. I just needed to do this to prove to my son that I did everything I could to figure out what was going on and didn't just make him go gluten free on a whim.

 

Thanks for all your support squirmingitch :) 

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WONDERFUL! Whew! Even I'm breathing easier now. Good, good, good! You're doing the right thing & keeping him on gluten till the results come back is the right thing too. You're doing just fantastic mom! And your DS sounds like he's quite the little trooper. 

I'm SO glad this is finally (almost) over! I'm sure you are way more glad than I am but I know how you're feeling. It's a huge hurdle! Or more like series of hurdles & you jumped them all. You should give yourself a major pat on the back.

 

No thanks needed hon. If I could help in any way to keep that little boy from suffering any more than he had to.... or keep him from having to go until he's an adult to find out.... or keep him from having to go through years of itching even after going gluten-free......

 

Let us know when the results come back please.

 

Good job mom! Well done.

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I am putting this in as a reference if anyone has DH questions.  I finished my gluten challenge 13 days ago, and the spots started during the challenge, but I did not explode with them until last night.  Today I am covered.  So, 2 weeks later, it is still in my system and I am in a full attack and polka dotted.  

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    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
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    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
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    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
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