Omg I read this whole thread start to end just now and the stomach knots it gave me for the 3-4 minutes I read were awful. I can’t imagine the stress you just endured. Thank goodness for no leukemia.
Lab work is negative for mono. Which is weird since mono would explain all of his weird lab work. I’m hopeful that our PCP will stop ignoring us now and tell us next steps. I have no idea where we go from here.
In case anyone was still curious.. we're on day #129 of full body hives. They did some labwork that showed he has a low positive allergy to several grains - we did a gluten elimination diet and he did have two days where his skin was back to it's beautiful, normal self, but it was short lived.
He's got markers for several autoimmune disorders, but no symptoms, so we're still trying to figure things out. We're working with a rheumatologist, dermatologist, and GI. The primary concern is for autoimmune hepatitis and IGG4. They said he likely has Sjorgens, but doesn't currently have any symptoms, so we'll cross that bridge if/when we get to it, and it sounds like that's mostly just managing symptoms.
We had a biopsy on Wednesday and we should have results back within two weeks, and that would rule in/out IGG4, another underlying cause, or give us no information. The nutritionist we spoke with yesterday said that the fact that he initially showed improvement on a gluten free diet could be a sign that that was the cause, so depending on the biopsy results, we may retrial an elimination diet.
So now... more waiting.
In other news, we've switched PCP's to one with good reviews, who is regularly in the office, reads his file before responding to us, hasn't once sent us a vague email about lab results she's sat on for weeks before immediately leaving for vacation, and will hopefully be a better fit.
Wow, I can’t believe you’re still dealing with this. I had hives off and on for a few months last year and it was absolutely miserable, I’m so sorry. I hope your kiddo can find some relief soon
Wow. This is timely. My daughter broke out like this a few weeks ago. It’s still this bad, maybe worse. The doctor said it could be 16 weeks. Nothing has helped ease it. I go between keeping it moisturized and trying to see if it needs to dry out. Neither one seems to make any difference. It’s all over her face, back, chest and arms. Her doctor has just shrugged both times we’ve been in. Sounds like I might need it push or find a new one.
rikki, have you tried Zyrtec and Pepcid? Seems to be the go-to low side effect option for kids that all of the doctors we've seen were totally okay with recommending based on a risk/reward scale. I think they had us on 4x the recommended dose of Zyrtec and then we added in 10 mg of Pepcid at night. And yes, it's totally obnoxious! I hope it's nothing too serious and isn't bothering her much!!
k3am, if removing gluten helped, check your skin care products, shampoos, and soaps if you haven't already. Some have gluten and some people are that sensitive.
I had a rash/hives like your DS's 3 years in a row every fall while in college. I was worked up for a lot, including vasculitis and they never determined a cause.
Bodies are weird. I'm sorry you guys still don't have answers!
k3am, if removing gluten helped, check your skin care products, shampoos, and soaps if you haven't already. Some have gluten and some people are that sensitive.
I had a rash/hives like your DS's 3 years in a row every fall while in college. I was worked up for a lot, including vasculitis and they never determined a cause.
Bodies are weird. I'm sorry you guys still don't have answers!
We’re honestly not sure if it was going GF or a coincidence. The hives got REALLY bad on a Saturday morning and I figured we should at least try it before subjecting him to a biopsy. We went GF that day, but by Sunday it was clear that he had picked up a nasty virus.. which made GF easy, since he wasn’t eating. But we’re not sure if the rash getting worse and going away completely for a couple days was related to GF or the virus. So if the biopsy doesn’t give us answers, we’ll be be trying GF again (much to his chagrin).
In case anyone was still curious.. we're on day #129 of full body hives. They did some labwork that showed he has a low positive allergy to several grains - we did a gluten elimination diet and he did have two days where his skin was back to it's beautiful, normal self, but it was short lived.
He's got markers for several autoimmune disorders, but no symptoms, so we're still trying to figure things out. We're working with a rheumatologist, dermatologist, and GI. The primary concern is for autoimmune hepatitis and IGG4. They said he likely has Sjorgens, but doesn't currently have any symptoms, so we'll cross that bridge if/when we get to it, and it sounds like that's mostly just managing symptoms.
We had a biopsy on Wednesday and we should have results back within two weeks, and that would rule in/out IGG4, another underlying cause, or give us no information. The nutritionist we spoke with yesterday said that the fact that he initially showed improvement on a gluten free diet could be a sign that that was the cause, so depending on the biopsy results, we may retrial an elimination diet.
So now... more waiting.
In other news, we've switched PCP's to one with good reviews, who is regularly in the office, reads his file before responding to us, hasn't once sent us a vague email about lab results she's sat on for weeks before immediately leaving for vacation, and will hopefully be a better fit.
I was diagnosed with Sweets Syndrome in January. It is very very rare and it took more than a few drs. My dermatologist made the guess, did all the blood work and biopsies. Most of the other drs either never heard of it or said it couldnt be because i didnt have any symptoms besides the rash. They were wrong! Its 3 months later and the blisters are gone, but the large round purple circles are still all over my arms and legs. Sjorgens is one of the things they tested me for it is similar to Sweets. Just wanted make you aware of sweets and maybe mention it to them if they already did not rule it out.
In case anyone was still curious.. we're on day #129 of full body hives. They did some labwork that showed he has a low positive allergy to several grains - we did a gluten elimination diet and he did have two days where his skin was back to it's beautiful, normal self, but it was short lived.
He's got markers for several autoimmune disorders, but no symptoms, so we're still trying to figure things out. We're working with a rheumatologist, dermatologist, and GI. The primary concern is for autoimmune hepatitis and IGG4. They said he likely has Sjorgens, but doesn't currently have any symptoms, so we'll cross that bridge if/when we get to it, and it sounds like that's mostly just managing symptoms.
We had a biopsy on Wednesday and we should have results back within two weeks, and that would rule in/out IGG4, another underlying cause, or give us no information. The nutritionist we spoke with yesterday said that the fact that he initially showed improvement on a gluten free diet could be a sign that that was the cause, so depending on the biopsy results, we may retrial an elimination diet.
So now... more waiting.
In other news, we've switched PCP's to one with good reviews, who is regularly in the office, reads his file before responding to us, hasn't once sent us a vague email about lab results she's sat on for weeks before immediately leaving for vacation, and will hopefully be a better fit.
I was diagnosed with Sweets Syndrome in January. It is very very rare and it took more than a few drs. My dermatologist made the guess, did all the blood work and biopsies. Most of the other drs either never heard of it or said it couldnt be because i didnt have any symptoms besides the rash. They were wrong! Its 3 months later and the blisters are gone, but the large round purple circles are still all over my arms and legs. Sjorgens is one of the things they tested me for it is similar to Sweets. Just wanted make you aware of sweets and maybe mention it to them if they already did not rule it out.
Interesting.. I’m sure the biopsy would help determine. Google tells me neutrophils are typically high with Sweets, and that’s one thing he has in the normal range.
I was diagnosed with Sweets Syndrome in January. It is very very rare and it took more than a few drs. My dermatologist made the guess, did all the blood work and biopsies. Most of the other drs either never heard of it or said it couldnt be because i didnt have any symptoms besides the rash. They were wrong! Its 3 months later and the blisters are gone, but the large round purple circles are still all over my arms and legs. Sjorgens is one of the things they tested me for it is similar to Sweets. Just wanted make you aware of sweets and maybe mention it to them if they already did not rule it out.
Interesting.. I’m sure the biopsy would help determine. Google tells me neutrophils are typically high with Sweets, and that’s one thing he has in the normal range.
yes, that is one of the markers for the diagnosis. thought I throw it out there, the whole process has been exhausting and frustrating. Sorry you are dealing with it.
Interesting.. I’m sure the biopsy would help determine. Google tells me neutrophils are typically high with Sweets, and that’s one thing he has in the normal range.
yes, that is one of the markers for the diagnosis. thought I throw it out there, the whole process has been exhausting and frustrating. Sorry you are dealing with it.
It really is a PITA. They’ve ran 200+ labs on him, some repeats… every time they add a new test, we seem to get a new wrinkle.
Example.. They sent him to ophthalmologist to check for Sjorgens symptoms and rule that out, and while there they noted something else entirely unrelated that we now have to go back every 6 months to see if his eyes are just generally that way or if it’s something that’s shifting… it’s been “fun”
yes, that is one of the markers for the diagnosis. thought I throw it out there, the whole process has been exhausting and frustrating. Sorry you are dealing with it.
It really is a PITA. They’ve ran 200+ labs on him, some repeats… every time they add a new test, we seem to get a new wrinkle.
Example.. They sent him to ophthalmologist to check for Sjorgens symptoms and rule that out, and while there they noted something else entirely unrelated that we now have to go back every 6 months to see if his eyes are just generally that way or if it’s something that’s shifting… it’s been “fun”
It truly opens Pandoras box. Once the figured out it was Sweets they had to run about 10 more tests to rule out a bunch of cancers associated with Sweets. Thank god nothing so far. They also have no idea what triggered it so I can prevent it. I wish you luck and speedy results. I do know someone who was diagnosed with Sjogren's recently she was suffering at same time as I was. She unfortunately did not have the same medical opportunities I did which resulted in a longer diagnosis process. Please keep me updated.