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Old 10-07-2008, 09:50 AM   #1
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rayne222 HB User
11 yr old w/mastocytosis

my son is now 11 and was diagnosed with mastocytosis when he was less than a year old. He's been up and down with the disease and it's cause severe issues with his lungs and breathing as well. At the time we were told he would highly likely outgrow it by the age of 8. Obviously this hasn't happened. His current dr. hasn't done any more testing and it hasn't gone away. He is always tired, sore throughout his body frequently and this past weekend something irritated him so badly that he has lesions all over his body. I'm taking him back to our family physician today and requesting a referral back to his dermatologist, should i be asking him to do further testing or am i over reacting....

very nervous parent!!!

 
Old 10-10-2008, 10:43 AM   #2
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sarahmarie43 HB User
Re: 11 yr old w/mastocytosis

I have a good friend with mastocytosis, and I don't think you are overreacting. If there is a change in his health, you have every right to be concerned and it is better to be safe than sorry. If you don't feel your doctor is doing enough for your son, then you should find someone who is more willing to help.

 
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Old 11-03-2008, 12:34 PM   #3
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carole1222 HB User
Re: 11 yr old w/mastocytosis

[QUOTE=rayne222;3753635]my son is now 11 and was diagnosed with mastocytosis when he was less than a year old. He's been up and down with the disease and it's cause severe issues with his lungs and breathing as well. At the time we were told he would highly likely outgrow it by the age of 8. Obviously this hasn't happened. His current dr. hasn't done any more testing and it hasn't gone away. He is always tired, sore throughout his body frequently and this past weekend something irritated him so badly that he has lesions all over his body.


I just read this post. I'm stunned. I am 45 and have figured out from reading these boards , that I have Mastocytosis. No doubt. I convinced my allergy/immunology doctor to do the blood test. That was over a week ago. I have not heard back from his office and I am afraid to call him - if for whatever reason the bloodtest was not positive - I know he won't look any further. (He diagnosed me with "Hereditary Angioedema" a year ago. I now am convinced he was wrong.) The lung problems you refer to - can you describe? I have been hospitalized 4 times due to a sudden onset of severe shortness of breath. Each time I was in for 10 days and on full oxegen and did not respond to any of the treatment given. It resolves slowly and then I'm breathing normally after about 2 weeks. Very scary. My oxegen saturations go down as low as 83 - 84% and I have been told that "next time you may not make it to the E.R. in time." I also have these skin lesions that will come and go - looks like poison ivy - doesn't itch. Also I have the permanent "sun spots" now all over my arms and legs. I also have a long history of undiagnosed bouts of bone pain, edema, fatigue, rashes/hives, back/kidney colic, severe swelling in legs and abdomen, some symptoms going back to childhood. Can you describe the lesions etc. you refer to? Any info about your son's case would possibly be helpful. I am going to print these posts and take them to my M.D.. It may convince him to help me. I have been to so many docs at this point and they all treat me like I'm nuts - Like these symptoms have no possible relationship to each other. Good luck with your son. And I understand why you're nervous.

 
Old 10-31-2009, 01:39 PM   #4
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marlee16 HB User
Re: 11 yr old w/mastocytosis

Hello, I understand your problem with getting no answers, this a rare disease with many different symptoms..sometimes the doctor doesn't know and should refer you to someone else...after he gets his money of course, this is how it works...I don't know ..doesn't come easy for some doctors.
You should get a specialist ..even if it means going out of your town.
check with the Mastocytosis Society....Good luck..keep trying.

 
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