Hi Deborah,Admin and Group Members,

My name is Sharon and I was directed here from the Histamine Intolerance group I joined. One of the kind people thought it sounded more like a mastcell issue vs histamine. So without further ado he it goes.

I have two kids Wyatt now 15 and Savannah almost 11 years old.

Part I Savannah

Savannah turned 5 in may of 2007. Then on July 1, 2007 she broke out in hives and angioedema. At first it was ok what did she eat that caused it? At that time I figured it might be the lemon/lime diet soda or the lemon or lime yogurt. It wasn't just food though at the time we were living in California but we were in Virginia helping my mom out. Her other symptoms at that time were just going outside. We would go from the house to the car she would rash and hive up or if I was outside doing yard work and came in for a break she would hug me and have the same response. Well we spent 4 months in Virginia and came home before school started in August.
She was still having issues but the hives went away first then angioedema. Time went by and she did have lemon or lime stuff and I thought she was fine that it was done. One night I gave her some lemon yogurt, cheese stick and a sandwich. I went to get a drink and not even a few minutes had passed and she started crying loudly. I ran to her her eye had swollen shut and her bottom lip swelled so much it split and hives even in her scalp. Benadryl helped her and we made it through that episode. The next day I called her doctor to get an allergist. Well I made the appt and before she saw him she had another episode of hive/rash everywhere and scalp slight angioedema. I took pictures because as you know when you finally get to the doctor everything goes away. He took the pics and said it was idiopathic hives brought on by stress and to remind her of this when she is taking finals in college and also has to do with hormones. He also told me to stay off the Internet. What a jerk i my opinion. I did find her food triggers of course the lemon and or lime, coco puffs powder touching her face would bring on welts were it touched as well as Sonic grilled cheese did the welt thing. She was able to get stable and was quiet until recently with Angioedema. She started her menstural cycle in August and has had 3 episodes of her upper lip swelling. The first 2 I think were hormone related because 3-7 days her period would start. The last one was food related.

Ok part II Wyatt

Well two years almost to the date of Savannah's first outbreak Wyatt does the same thing but yet different as well.

The first sign was from sunscreen that gave pale hives more flash colored. Then a few days later I made spaghetti he had lip swelling. Then the next week I made brownies and lips swelling. The common trigger for him was Vitamin E. Also lemon/lime like savannah. So off to the allergist. Where the first thing they did was a breathing test. Then all he focused on was the fact he has asthma. I am ok but I brought him in for this hives Angioedema. So reluctantly he did RAST testing which I had chocolate and corn added. Due to hubbies first cousin died due to anaphylaxis from his allergies the ones I know was corn tomatoes and others. Well Wyatt's results were all negative. So since this all began I keep epi pens at home and schools for kids just in case. So it took forever to get him under control. The only thing that helped was zyrtec hive meds. They discontinued it about 4 years ago. The liquid zyrtec allergy med makes his symptoms go nova he cannot take it. There is something in the inactive ingredients that the hive formula doesn't have. Claritin doesn't touch it and dye free Benadryl makes it a little worse. Regular Benadryl is what we use it take a bit longer to clear up but it does clear up.

Well he had a good run of being non active until July of 2012. I have arthritis in my feet and I needed him to was dishes until I could do it myself. Hubby and I had to go somewhere I don't remember where now but I needed dish soap this was the day Wyatt would do dishes that night. I went into the dollar store and grabbed the first bottle and didn't pay attention I just wanted to get in and out and home. Well Wyatt did dishes that night but didn't tell me his hands were itchy. The next night he did dishes again then his hands went hive and swelling. It started a very long journey to getting under control the trigger Vitamin E in the dish soap I totally missed it. So this episode threw him into triggers of food. So we had to figure his triggers plus remove any body products with vitamin E and wheat.

I got the book wheat belly and that turned me onto wheat being an issue for him and somehow it turned me onto histamine intolerance and now here.

Wyatt has been hive and angioedema free for a few days until Friday. I picked him up and I always ask how did he do with his hives and swelling. He said fine until P.E. they are doing touch football. Each time he would catch it the muscle on the underside of the forearm would hive up and then would go away it happened 4 times in class and that night he had hives on his neck. So not totally back to normal yet but getting there.

Wyatt's triggers

Food- salami,hot dogs, ham,gravy mike and Ike candies,cheddar cheese air head candies Vitamin E tomato sauce

Topical Vitamin E

Pressure

Wyatt background

When Wyatt was about 3-4 months old I went to check on him in the middle of the night it seemed like he was filling up with congestion right before my eyes. He would get this purple/re color on his eyelids I would put him down for a nap and when he woke up it would be gone.that evolved into his ears would get red so nap time then it owl go away. If nap didn't happen the red would go to his cheeks. Well he is 15 now and that is a constant that never has gone away and he has an over all face pinkness to his skin. He has eczema congestion since baby,he has never felt full from eating. When he was about 2 I was making his lunch and he started choking spontaneously I did a finger sweep and after the second try I was able to pull out a blob of congestion that when my hand was cupped filled it. It reminded me of viscous lidocaine. It was clear with air bubbles I it. Since that moment he cannot stand the smell of oats especially cereals and won't eat peanut butter unless in a Reese cup but that is only if that is the only choice. He had the scratch test for allergies at 2.5 years old.

I can't believe I forgot these 2 symptoms. Many ear infections from about 3-4 months old to august 2000. He had tubes put in. Also he has had an extreme drooling issue. He did have improvement when he was in second grade and had adenoids and tonsils out. He still has issue with it but is less. He will get saliva in the orders of his mouth and need to be reminded to swallow and wipe his mouth. I don't think he feels it. There are some quirks and brain questions but I don't know if that would be related to mastocytosis .

Also with those 2 surgeries he came out of anesthesia very calm I was surprised. I had heard that when kids come to they can be very unhappy to combative. Wyatt's second surgery he had a hard time staying awake he kept falling asleep so they of course monitored him and kept an eye on him until he was able to stay awake for a certain time frame then we took him home. The second surgery 2 beds over was a boy that had the same surgery as Wyatt and he had the unhappy/combative waking I thought that made us lucky. Now I am wounding was it actually another sign but I just didn't realize it?

Also after Savannah had her original onset and looking she has progressively became very sound sensitive with a handful of triggers. Right now sniffling from anyone even herself drives her crazy. She has others but that one is the most prevalant at this time.

I'm not really sure how to ask this but here it goes. Could the original episode have messed up the neurotransmitters to the point of starting her on the path of extreme sound sensitivity (misophonia)?

Well everyone if you made it through that thanks for taking the time if not I understand  . Thought on the issue would be great and thanks.

Sharon

Hi Deborah,

No we moved to Nebraska in 2010. There is an allergist in Omaha  that listed one of his areas of interest is Mast Cell Disorders.

Is there one test other than a biopsy that will tell us this is either the right track or the wrong?

Thank you very much for your time in reading and responding I really appreciate it.

Sharon