I watched a medical show a while ago that featured a child with the exact same symptoms as my son (minus one at that time) who had a form of mastocytosis.
My son has had extreme feeding difficulty since 6weeks of age. Initially we investigated allergies. It turns out he does have a few IgE allergies. We've eliminated those. My son suffers from stress/heat induced hives almost daily with some periods of breaks. ( He will experience hives one day to chicken with pepper but not the previous day or something to this extent) Sometimes we will not see hives for a few weeks at all. Some times he get hives/rashes/very itchy from stress, rolling on the ground etc.
He also has experience severe GI problems since birth. Reflux, vomiting, diarrhea that comes and goes.
He also has periods of sweating and fatigue. Most recently he has started to faint. We took him to the ER and they said they were Seizures, which have now been ruled out. He will get extremely agitated and listless, sweat, have racing heart, then just collapse. This has only happened 5 times, but is very scary to me and him, seen as he's only 1yr.
Sometimes his "hives" are real hives that have white centers and other times, they are just many clusters of raised small red bumps. He frequently experiences episodes of itching. He even knows the sign for "itchy" in sign language.
He does not have the skin lesions I've read about. The skin things I see on him come and go and are not permanent. Although sometimes, the hives he gets on his face do seem to be in the same location when he flares up. Again, we feel different things are triggers, mainly stress/disruption in his schedule.
I've read about systemic mastocytosis and think it seems similar, but that scared me b/c it sounds life threatening. I know there are other types too, but again .. he does not have that permanent skin rash.
I asked our allergist/immunologist about mastocytosis months ago and he said "no that is something different." But this was before the fainting spells started. Our immunologist doesn't know about those yet. We see him one week from today.
Does this sound Mast cell related to anyone?
We've already ruled out Eosinophilic diseases and other GI disorders with an endoscopy... as well as seizures.
Can the pediatric form of mastocytosis be present w.out the permanent skin lesions?
I would appreciate any and all advice/comments anyone would have.
Thanks!
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1 year old - possible mastocytosis?
- By gavime
- Posted October 8, 2009 at 8:35 pm · 4 replies
- In Getting a diagnosis
- Shared with the public
Explore topics in this discussion:
Allergies Seizures Sweating Anemia Syncope Mastocytosis Diarrhea Stress
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- By Poetessa
- Posted October 9, 2009 at 4:51 am
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Hi Gavime, I am so sorry your little one is so sick!! That's so hard on both of you! From what you describe, it does sound possibly like Masto but I don't want to go blabbing when I don't know nor do I want to alarm you!
When I was around two I started to get itchy spots but at one point they stayed for awhile and would fade when the attack was over turning more tan color then if I got stressed or God forbid my mother would give me an ASA then all hell would break loose and they would turn red and itchy again. I also had terrible GI issues too.
As we know, even if a doctor rules something out doesn't mean he or she is right! For years when I was little my mother suggested to the doctors that I might be allergic to ASA and they said that was impossible....???? And FYI, deadly allergic!!
I would be getting a second and even third opinion if I were you. Did they do a tryptase blood test yet? That would surely give you some indication, normal I believe is under 20, I was 182 when I was diagnosed so no question on my diagnosis. I also had a bone marrow biopsy but I'm not sure they would think about doing that on your little one!! And you are going to the right specialists by the way, Immunologists are the ones who really know about this though it was an oncologist who first diagnosed me by accident. It was 38 years of not knowing!!
Have you been giving him liquid Benedryl? And if so does it help with the symptoms? Aveeno oatmeal baths in luke warm or cooler water?? That really helps with the itchiness.
Oh before I forget, look up low histamine diet online. You would not believe how much food we eat has histamine. This might alleviate some of the allergic reactions, I know it did in me! Almost all fruit is top of the list and juices too.
I am wishing you guys all the luck in the world and I hope you get to the bottom of this soon.
Sending you both healing hugs!!
- By gavime
- Posted October 9, 2009 at 12:09 pm
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Thanks for responding Potesa, I am sorry worried for my little guy.
The more I read the more I wonder if this is what's going on.
He does take Benedryl A LOT. It does help some - but only for each "batch" of itching. later in the day it returns. We've just started him on Ketotefin again today for the second time. It really seems to help, I know it is a mast cell stabalizer... I am wondering! He was so calm and affectionate today after I gave it to him, no aggrivation at all.
We have not done that one test yet. We have however realized that his Neutrophil count in the CBC has been significantly lowered since day 1. He is only at 7% and should be 30-60%. Also he has mild Morphology in his RBC's (both of which I haven't talked to the immunologist about yet.) I read this all could indicate a compromised immune systems or systemic disease. I love our immunologist he's great. - but he totally shot down mast the first time I saw him (but, before we had any of this blood work or fainting spells.)
Also my son's Liver enzymes have been elevated for 8months.
I know you all are not doctors... but is there a reason for these abnormalities in his blood work that would related to Masto?
Is Masto deadly? I had hoped the my son would be free of any ailments, but at this point, I just hope it's not deadly and can be managed. I've read that some pediatric patients out grow this disease by adolescence.
I'm so scared for my little guy. I just want him healthy. Thanks again
- By Poetessa
- Posted October 9, 2009 at 2:47 pm
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I totally understand what you are feeling!! Its so scary when our children aren't well and we can't get answers!!
A couple of the blood work results I'm not familiar with but the liver enzyme elevation is something to keep an eye on, has be had an ultra sound of the abdomen to see if his liver or spleen is enlarged? Those are two indications of the illness. When they checked his abdomen manually did they mention anything?
Also you are right about masto in kids, many of them out grow it though it is imperative to have it properly diagnosed and treated... like you didn't know that already!! I have a tendency for stating the obvious!!
And interesting that he's good on a mast cell stabilizer...
Also how is his hemoglobin? Is he anemic? Red blood cell count? White?
For years all my bloodwork came back normal aside from anemia so they told me I was fine everytime I had horrific attacks!!
Do you have EpiPens? I'm not sure how that works in tiny ones like him?? Something you could ask a doc and or pharmacist.
Did they do an MRI or bone scan? Bone density?
These are all the tests they did to me at the beginning and still do often to monitor things.
Did anyone mention to you gastrocrom? That's another mast cell stabilizer. And I'm no doctor but I would say if the benedryl is helping the itching then don't hesitate to use it, as long as it's not exceeding the recommended dose.
I wish so much that there was something I could do for you, a magic wand would come in really handy right about now.... I so wish you could get some answers soon and he could get some relief!! If you need to talk send me a private note and I'll send you my number, it's so hard going through something like this alone!!
I'm here, kiss your little sweetie for me.
Healing hugs!
- By gavime
- Posted October 14, 2009 at 8:37 pm
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HI Poetessa,
You are so sweet. I really appreciate everything! We saw our immunologist today and though I feel a little better, I think I am more confused now, and scared.
He talked about this "rare condition" in which syncope and allergy conditions are linked. I believed he was talking abotu masto, though not sure. He is hard to understand! So, he said he did believe my son had this and thus the syncope and hives, gi problems and etc. But he ordered a B12 test??? (but the b12 test could have also been to find a reason for lowered neutrophil count?) not sure.
so my son has had a normal CT, abnormal CBC and RBC. (cbc showed reallylow neutrophils and high lymphocytes, rbc were morphed) and his liver enzymes were high. His calcium levels high.
My question is, if this is Masto .. and his liver enzymes are elevated - does that mean this is systemic? if so, does that mean it's deadly? Could he die from this? Or, can your liver enzymes be high but it not be systemic? I am so confused.... I wish I would have gotten more questions answered.
I feel good in our docs hands b/c he knows what the H he's doing and doesn't over look a single thing... but he doesn't explain well initially...
Would you please email me at my personal address: Snyderme@colorado.edu
I really appreciate all of your insight. Also, I am not so sure how to work this site - and I know you emailed me with your contact info, but I am not able to find it again!!
Please fell free to contact me at my personal email.
Thanks again,
Maggie
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