Petechiae or angiofibromas starting?

Hi all- it's been awhile since I've posted... Since the genetics came back negative. So I'm trying to put the concern of TS out of mind but this darn butterfly rash on Carson is now appearing daily and getting more pronounced.
I posted back in Dec asking you all about what the angios looked like when they began to erupt and many of you shared some similar stories and findings as I was seeing in Carson.
I've been monitoring these red spots and noticed that they come out whenever he exercises (running around playing) and that it is very distinct red dots (petechiae like) across the bridge of his nose and on his upper cheeks next to his nose. I've also noticed that his forehead and chin also get a blotchy-like rash at the same time. before it was every now and then but now it is pretty much daily- everytime he gets his blood pumping so to speak. but will fade to almost totally disappeared by the next morning.
I hate being a hypercondriac mom but this rash concerns me. I've read petechiae can be a sign of autoimmune disease... Or vascalitis. But TS still sits in the back of my mind...
Thanks all for helping me make sence of these reappearing flat red spots (below the surface).
Maija

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Your description is exactly the way my son's angios started and reacted to heat. He was diagnosed with TSC at age 5 by the dermatologist we took him to for the angios. Not sure what to think since your genetics came back negative. Yes, the butterfly rash was always the most pronounced and raised, but the red spots on his chin would show but not pop out when he got heated.

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I don't blame you for being concerned! It's too much of a "co-incidence", right? Did they tell you that you can get a false positive? I hope to god that is not the case, but I understand why you would be worried.

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My little guy gets quite flushed when he is active & had a few little patches on his cheeks that I am trying not to watch, but of course, the angios come to mind. His is not the classic butterfly pattern though, so I'm unsure if symmetry matters with the angios? If anyone knows, that would be helpful.
But, I sure hope that your little guy is just fine. It sucks that it is still in the back of your mind, but understandable as well. Have you taken him to a derm about it for an opinion? Hugs Maija!

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Also...I do remember the pic you posted of him & I remember thinking it was so, so so suddle. Maybe post another pic here if you want when it is more pronounced?

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Hi all- thanks for your thoughts and input. I took him to the pediatrician today and brought pictures. The pictures from his rash in December rash are significantly more mild than the pictures I took this weekend. The rash is more pronounced (redder spots) but the spots look like they are the same pattern of spots. The dr didn't know but was thinking they were vascular in nature since they appear with exercise and dissappear quickly. She didnt think petechiae because the spots went away so quickly. Petechiae takes a few days to go away. She made a referral to the dermatologist for April 1. I hope the dermo may shed some light.
I'll keep ya posted and share what I learn along the way.
Thanks for the hugs too:-)

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Hope the dermatologist has some experience with TS.
Let's hope it's just a heat rash.

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My sons "rash" started on his face about age 4. Mostly when he was over heated and feverish.
It would be intermittent at first. I asked his pedi about it and was told it was nothing to worry about.
As he grew the "rash" was more noticable. mostly over the bridge of his nose in a butterfly like appearance.
But he does have some other area on his forehead.
As he grew the rash became multiple small bumps and eventually never disappeared. This took several years to develop in my son. I can probably send you some pictures of him as younger and older with the rash.
If you are interested send me a message and I'll email them to you (I'll message my email to you too)

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I didn't know how to post a picture of his rash so I changed my profile picture to show you. It sure is suspicious to me. What dobyou think??

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Hi there.

When I asked our TSC specialist what to look for angiofibromas, she mentioned they will start appearing when your kid gets worked up, cries, screams, etc. (My son's very young and isn't running around yet, but I suppose it's the blood flowing that does it.)

Charlie's TSC mutation was identified with genetic testing but I have read and our doctor has also mentioned that they suspect there may be more mutations that cause TSC that they haven't yet identified.

I hope that's not the case for you.

Good luck with your dermo appointment and all the best for your son.

Theresa

Theresa

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Thank you Theresa. I hope they don't have the unidentified gene as well. What TSC specialist told you this? Maybe I need to call Kathy- dr Chugani's nurse. He is neuro but leads the TSC clinic. Thanks!

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Hi all. An UPDATE:
The dermo was a moron! She didn't know a thing about TS... Didn't know the facial tumors were even called angiofibromas and insisted they appeared around 9 years at the earliest. She thought people had to have at least 5 ashleaf spots to have TS as well. She basically said she couldn't think of a single rash that comes and goes. Not one. I asked her if she would be willing to make a few phone calls to some dermatologists that were on a TSC clinic... She said she didn't know ANY derms who would specialize in TSC. I told her there was a clinic in Detroit and in Cincinnati... She spewed the names of the pediatric derms at those hospitals but repeated that she didn't think they were associated with a TS clinic. Asked her again if she would be willing to make some calls... She ended the appointment with " I'll see if I can find a TSC dermatologist"... And walked out of the room.

So I don't know what to think. Maybe they are a kind of hives...??? I read that some people can get hives from exercising... However they tend to not be on the face and are more bumpy. But hives can have a flushed appearance too and he gets that on his chin and forehead a lot too. I also notice the red spots in the butterfly pattern when he is cold... Like when swimming it really pops out. So cold hives and exercise hives are often seen together. Truely, I'm grasping at straws here. No answers, no reassurance, nothing. That was my last resource.
I emailed Dr Chugani with pictures and asked if I should be concerned and he said he didn't think they looked like angios. That was reassuring for sure! But then he is a neuro not derm... And imnnot sure he has seen angios before they erupted... So encouraging but not totally convincing either.
So I wait and wonder. I see the rash almost daily now and feel like something IS CAUSING IT! A dx would be nice. But no, instead we keep watching it come and go... Come and then go... Come and then go... It's been 5 months... Coming and going... Getting more widespread across his cheeks and frequent. Frustrated. Can you tell?
Thanks for listening-
Maija

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Also- does anyone know a pediatric TS dermatologist who I can contact to discuss if I should be concerned with this butterfly rash that keeps reappearing? Thanks!!

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I can tell you for sure that there are other mutations that cause TSC that have not been identified. My son has TSC, but we just got his DNA results and they were negative. You can read more about this at the URL below. Even if the DNA results are negative, they can still have it if there are enough other clinical signs. The site I am pasting below also has information on all of the clinical signs and which can be used as a diagnosis.... As most on this forum are aware, this site is a crucial form of information.

http://www.tsalliance.org/pages.aspx?content=474

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So frustrating Maija! When we saw our Geneticist last year for counseling after the dx, he said that the angio appear when they hit puberty, not earlier. So not true. It's so frustrating when you just don't have alot of clear answers even from those who should be pretty knowledgeable. My son also had a rash on his nose that looked more like eczema, but our derm, who gave us the first dx because of his ash leaf spots & shagreen patches & is pretty informed about TSC said that the rash was definitely angios & that they wouldn't go away, only get worse.
Well, it went away & I've never seen the likes of it again. Just so much confusion with TSC.
Has this rash become more prominent or stayed the same?
Hugs Maija

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Hi am7d... (I never write your name as I want to be sure not to intrude on your privacy),
Thanks for the hugs... Hugs back at you too.:-)
I'm glad to here you haven't seen the rash again! Indeed, goes to show that we can't trust anything the drs say 100%. Im sure it's frustrating to get an incorrect dx. It's like they hear TS and they assume. Instead of looking at other possible dx as well. I hope his rash never shows up again!!
Carson's rash has now spread across his cheeks, especially on his left cheek, which I now see it past his cheek bones. It's more prominent as well with redder spots and closer together. They still appear under the skin and don't have a bumpiness to them. I've noticed a consistent pattern when he is cold... They pop out within minutes. And often they pop out when he is sweating from running around... But then he is also flushed and a flushed-hive like rash appears on his forehead, between his brows, and on his chin as well. I'd REALLY like to know WHAT is causing this. It's disconserting to say the least to not know. Is it an allergy? Is it cold and exercise hives? Is it angios? Also- his daily stomach pains have returned. And the doctor has no answers for those either. Drives me crazy!! Why does my son have to suffer and us worry? No answers??!?!?!? !! Arr! I've journaled for weeks trying to tie a food to his stomach pain and came up with nothing. He's had a blood screen for celiacs... Negative. We just don't know. And now the rash and stomach pains makes me worry worry worry. Not having a dx, not having an explanation, can make a mother's imagination go crazy with dreadful possibilities. When will it ever end? My poor baby.
Rant rant. Ugh .

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So sorry that the dermatologist did not have any experience with tsc or any rash the appears and goes.
Are you in the viscinity of any tsc clinic that you could make an appt with a dermatologist that would be familiar with angiofibromas?
I think it would be hard to diagnose anything dermatology-like by photos unless the skin problems were extremely apparent.
Unfortunately you may have to watch and wait until the rash either disappears as mysteriously as it came or becomes worse.
You may be able to email a tsc clinic with your photos-
When he was tested for celiac did they do any blood allergy testings to check for any food allergies? You may want to explore an allergist to rule that in or out....
It is the worst feeling when you have no answers.
Stay strong and keep an open mind...it could be anything at this point.

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You are right, I think it is too hard to dx a rash with pictures. One reason why I haven't scheduled an appt at the TSC clinic. A long drive and overnight stay just to not have the rash appear in the office.
I'm not familiar with any other food allergy blood testing. What else can they test for? The dr just said to journal. And we did a lactose fast then push. That didn't show an allergy either. I think seeing an allergist is the next step.. Thanks!
Maija

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