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Thread: Mastocytosis

  1. #1

    Default Mastocytosis

    I was just wondering if anyone else knows much about, or has, this condition..the info on the net has scary stuff like leukaemia as a possibility with this condition..the doc said don't worry about that, but its hard not to!!
    I'll explain:
    Owen developed a small mark near his ear(under his sideburn) at about 6 weeks old, after about a week it appeared to be developing into a mole.As MIL has a mole in the same spot we thought nothing of it. However, at around 4 months the mole(which had not changed in all that time)blistered. We took owen straight to the medical centre, as we couldn't get into our GP for a week. The doc there said he had no idea what it was. The blister burst while we were there and clear fluid came out.Doc said 'if it's still there in a week then come back'..it had been there for months, of course it was still going to be there in a week!!So we went to our GP the following week. She thought it may have been impetigo(as the blister crust was still there) and prescribed antibiotics..two weeks later the crust was gone and the mole was back to 'normal'(looked like a mole again)..we went back to the docs and she sent us to a dermatologist..he rubbed it a couple of times and it flared up all red, swollen and angry looking. From this he determined that owen had mastocytosis. This was described to us as a collection of allergy cells under the skin. We were told that this spot will grow as he grows and should be gone by the time he's 5. It won't cause any food allergies ar anything like that. We were then told not to look it up on the net as we would be scared..well we did, and we are!!

    Owen is such a happy healthy little boy and i can't bare the thought of anything happening to him. I have been stewing on this for ages and don't really have anyone to talk to about it..am so terrified..
    does anyone have any info or experience with this condition??



    Thanks

  2. #2

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    Christie

    I don't have any experience with this condition, but I really hope you find some answers quickly. Perhaps you could write down some questions and go back to the dermatologist and get some answers? Big hugs to your little one.

  3. #3

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    Thanks for your reply Christine..we are going to see the GP on tues..so have started writing down my questions!!also have researched it a bit more and am assuming he has the localised form as opposed to the nastier systemic(which can get into the organs and bone marrow)however this wasn't told to us..but the prob i have is that the info about it says it can be diagnosed by biopsy on the 'mole'..but no biopsy was done..the only thing i think is that maybe the doc didn't wanna do it since it's on his face??but i would rather have a definate result..hmm..still stressed..

  4. #4

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    I hope all goes well on Tuesday and you do end up getting the answers you need.

    BTW he's a gorgeous looking little man - what a smile!

  5. #5

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    Thanks Christine for all your support..
    Well we have had a mad week!!In short..We saw GP, who diagnosed a heart murmur, so we were panicked..went to see paed cardiologist who did an echo and turns out it's an innocent murmur, but a loud one since he's such a big boy he has more blood than a 'normal' 7 mth old but his organs are the right size, because of this some 'turbulence' is caused when the blood flows in his heart..hence the murmur..so thats a relief, then we had a follow up with paed who said it is def a mastocytoma(not full blown mastocytosis), since he only has one spot..he said he has patients who are covered in them 'like leopards' and still have no probs at all!!so we should not be worried..what a relief!!he said the spot may go or may not but will not be any prob for owen at all..thnak goodness!!then we found out that owen's going to be a big brother!!Have had a sneaky suspicion for a while but no confirmation til now..don't know how far along i am either..
    but what a week!!!

  6. #6

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    Wow!!! It must have been like a rolelr coaster at your place this week. That's great news that Owen's heart murmur isn't sinister. My daughter was born with a slight murmur that totally rectified itself within the first year. My son zeke was born with congenital heart failure and went through open heart surgery as a newborn - so I know that feeling of dread well when the specialists start talking about heart related stuff.

    But good news on the mastocytoma front too! And he's going to be a big brother! That's fabulous news. I hope you stay healthy and this next phase of your family life is a very happy one.

  7. #7

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    So our Dr. told us our son had MASTOCYTOMA. They are little red bumps that spare the hands, soles and face. He has about 11 of them. When rubbed they get white and very puffy.
    We were referred to a dermatologist (we had to drive a ways) who was familiar with this. It's a rare "disease" among children that should fade when they are teens.
    Basically what they are are benign tumors having a allergic reaction. silly, sounds scary the way it's worded.
    When they turn white and puffy after being rubbed they are sending huge untold numbers of histamines throughout the body that could cause the child to flush all over and lose consciousness..we are supposed to have an epi pen at all times. HOWEVER< having mastocytoma is EXTREMELY rare, and the losing consciousness even rarer still!

    We haven't had to go to the Dr. for him (he's 17 months) for quite a while, however this morning we noticed that one of the spots on his back looked like it was going to burst open, like a boil almost! So I searched on here and found your thread! I called the Dr's and am of course awaiting a return call... What did you DR/ Derm say? How's your son? I hope all is well!

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