Well... all of this is a really long story.. My daugther has had GI problems off and on since birth. At 5 months old she was dx with Eosinophilic Gastroenteritis, although her doctor now believes she didn't actually have that, since her count was less than 20. She was dx with Failure to Thrive, and, with avoiding Milk and Soy, she was a healthy toddler.
At age 2 we had her allergy tested, and she was positive to ALOT of evironmentals, grasses, mold, mildew, trees, weeds, etc. Her doctor put her on Zyrtec, Singular, Nasonex, Flovent and Breathing Treatments as needed, and it cleared up just about all of her symptoms!

In November of 2010, she began having abdominal pains, and I suspected that her EG was acting up, so we made an appt, and her doc Scoped her, and it was clear, we trialed milk and soy, and again it was clear. So, we made an appt with our Allergist, per our GI's suggestion, and, during our blood test with him, she had a positive reaction to Latex  in the tech's latex glove that she used during the blooddraw. Her blood tests came back perfectly normal, that after that, that allergist said he could no longer help us, and referred us to another allergist. This allergist researched a little bit, and found that some foods were cross reactive with Latex, and told us to avoid those foods, we did, and Zoe's syptoms seemed to improve. It wasn't until she started school in August that she really began having some major problems. It started out with just flushing, then she would be red all over, then the bumps that weren't that noticable when she was younger, were very apparent and turned red and seemed to spread to her thighs and her cheeks. (another doctor has dx these as karatosis piloris by pictures). Then she started coming home just completely fatigued, and her teacher would say that by the end of the day, even after a nap, Zoe wouldn't want to play, she would just sit next to her and kinda space out. Then the nausea and abdominal pain started, and it began to happen more and more frequently. I then made a second appt with her doctor that we saw earlier that year. He said that he wasn't sure what was going on, but that it was something that was more than just a Latex Allergy. He said we should pull her out of school, that her sensitivity level was just increasing, and he put her on Atarax in addition to her other medications, and prescribed an EpiPen. In October, Zoe had her first Anaphylaxis reaction to Pumpkins/pumpkin seeds, although at that time, I didn't realize it was anaphylaxis. The nurse had told me that you can have an "internal rash" with latex cross reactive foods, that I needed to bring her to the ER, so I did. By the time we arrived, Zoe had passed out completely in the backseat. A nurse in the waiting room helped me wake her up, and the nurse back in the ER didn't recognize it as Anaphylaxis at all, since she wasn't having any problems breathing. She was however having abdominal pains, nausea, flushing, extreme puffyness, purple under her eyes, and extreme fatigue. Now I know that this is how her Anaphylaxis presents itself. Since then, she has had 4 episodes of Anaphylaxis, (2 of which included problems breathing) and we have been to our 5th allergist, who, after I requested it, tested her Tryptase level, (it was undetectable) and her 24 urine, which was normal, (but she didn't have any symptoms at all during that 24 hours). Even though she has all of these symptoms from Dr. Atkins published article on MCAS, her doctor would not pursue or refer us to anyone else. He dx her with chronic abdominal pain, and said she was a stressed out child, and needed to see a therapist to learn how to deal with her stress. When I told our family and close friends this dx they all laughed. My daughter is one of the most chilled out kids you will ever meet, and our lifestyle is extremely laid back. I can't think for even a moment of anything that my kid has to be stressed out about other than her 3 yr old sister jacking her clothes or shoes! *lol* I completely believe that my daughter has had this disorder/disease/syndrome for quite a while now. There was just something at her school that sent it into overdrive! We thought that we knew what her triggers were, lots of foods, latex, stress, (from pain ex: tripping and hurting herself), hot, cold. When the last doctor admitted us, and did food challenges, to see if we had an actual food allergy, (he was a food allergist), we trialed latex on day 1, with no reaction, (we were completely shocked!) and wheat on day 2, with again, no reaction! The only thing we can think is that it's evironmental, or a preservative, something that is the difference! He didn't trial anything else. Our doc had a psychiatrist come and see Zoe, and it was her that led him to the dx of chronic abdominal pain.

We need help! I know that this is long, and that she has had a few dx, but none of them fit! None of her docs would even consider trying any of the meds on her to see if they would improve her symptoms. We can't find anyone to order any tests, and we are completely at a loss of what to do. Right now my child's life isn't what I want for her at all. She's home bound, (something outside is causing her to react), and she attends school via Skype. I want my child to be able to go to a birthday party, be in dance, have a normal life without me having to use an EpiPen on her to stop her reactions! Can you make any recommendations, help me figure out how to get Dr. Castells to reply to an email, do anythign for us? Does she sound like MCAS to you? I have always put my family first, so rearranging our lives for her best interest wasn't even a question, we just rolled with it, but I don't want it to be her reality any longer than it has to be. Thank you for your time again!! Chrissy Ward, mother to Zoe Ward, age 5

Symptoms:
Abdominal
abdominal pain, intestinal cramping and bloating,diarrhea and/or obstipation, nausea,

Oropharyngeal
aphthae

Respiratory
cough, asthma-like symptoms, rhinitis, sinusitis

Ophthalmologic
difficulty in focusing

Cardiovascular
tachycardia?(never tested for it), blood pressure irregularit (hypotension and/or hypertension), syncope, hot, flush (she also sweats ALOT!)

Neuropsychiatric
decreased attention span, difficulty in concentration, forgetfulness, anxiety, sleeplessness, lightheadedness,

Cutaneous
efflorescences with/without pruritus, telangiectasia, flushing, angioedema, Keratosis piloris

Musculoskeletal
osteoporosis/osteopenia?, (she's broken the top of her foot twice before the age of 3)
 
Constitutional
fatigue, environmental sensitivities

Well, she's been on so many meds, from the one doctor that would help her, but then was scared keep her on as a patient when he couldn't find out what was going on with her, so he referred us out. She was on all of these... but now we just do her Singulair and daily vitamin unless she's having a reaction. It seems that she really needs the added on med with the H1 and H2, because clearly we've done all of the H1 and H2's... *lol*
Singulair
Nasonex
Flovent HFA
Prevacid
Atarax
Zyrtec
Zantac
Levsin
Phenergan
Zofran
EpiPen
Albuterol

As for her Tryptase, when they took it she wasn't reacting, and it was completely untracable... not low, not normal, not there at all? I have no idea what they actually tested for in the Urine, I just know that they did a 24 hr Urine on her, and everything was normal. I asked the ER to do a Tryptase and a Urinalysis (to test her Histamine levels) last time we were in, but they said both were special tests, and they would need a doctors order to run that kind of specialized test...

I wrote Dr. Afrin, (who, by the way, I wrote at 7:00 on a Thursday night and he wrote me back at 7:45, talking about AMAZING!) and he said it definately sounds like MCAS to him, but that he wasn't equipped to handle Pediatric patients, that I needed to get in to see Dr. Castells (who I hear is incredible!). I sent her an email that same night, (last thursday night, but I haven't heard back from anyone? I'm in East Texas, so yeah, I know that it will cost us $1000 to get there and back, but I'm hoping she will consult with our Pediatrician for the here and now until we can get in hopefully within the next couple of months...

Thank you for writing me back, I know it's late, but it's the only time I have really that I can complete a thought process! *lol*

Chrissy,

Did you contact Dr. Afrin OR Dr. Akin? You had previouisly mentioned to me that you had contacted the Boston doctor, thus my response to you was written under the assumption that you had emailed Dr. Akin. If you actually had contacted Dr. Afrin (from North Carolina), then you could email Dr. Akin as well as Dr. Castells.

  If your doctor can contact Boston with your questions and get an answer that would be great.  If that doesn't work, I'd encourage you to take your daughter there if they will see her.  A few trips to the ER and numerous trips to multiple doctors will add up to $1000 quickly.

  It couldn't hurt to ask your doctor to write a letter for the emergency room, so they'll know how to treat your daughter if you have to go there again.  There is ER information posted on this forum and at  tmsforacure.org that also gives information about medicines to avoid and which are better tolerated.  These might be good for you to read.

  If you haven't talked with her allergist about trying a more comprehensive elimination diet for her, you might want to ask about that.  There are foods that cross-react with other allergens, as well as foods that cause direct mast cell degranulation or that contain high levels of histamine that trigger some people.

  Gastrocrom is cromolyn sodium.  Ketotifen is a mast cell stabilizer and an antihistamine.

Hope it went well with the pediatrician and that he/she contacted a mast cell doc. Good luck with the Gastrocrom/Cromolyn hunt

Maybe with more meds your daughter will be able to reduce her symptoms which would be wonderful.

I take Cromolyn Sodium as it's all we have available here in Canada.

Hi Chrissy,

I'm so sorry to hear about your daughter but wanted to let you know that you are not alone.  My son is 4 yrs old and shares many of the  symptoms and doctor experiences of your daughter.

I created this video of my son last year because his team of doctors from a reputable children's hospital in philadelphia insisted his symptoms were "behavioral".
http://www.youtube.com/watch?v=E8wGUoUT8BY

His symptoms weren't behavioral, he was reacting to dairy.  After an 8 month trial and against his doctors recommendations we removed dairy from his diet and thankfully his symptoms improved.

My son was diagnosed with Eosinophilic Esophagitis although no scope was performed.  He also has GERD and multiple allergies and adverse reactions to foods, drugs, environment and chemicals.  He tests negative to all SPT and RAST and has a diet of 6-8 safe foods.  My son also has EDS hypermobility.  

DS just had his 3rd anaphylaxis last weekend so I too am familiar with administering epinephrine to our little ones.

Like yourself, I originally contacted Dr. Afrin in SC by email.  He was very kind with a quick response but I was also told he does not see pediatric patients.  I called Boston and began the paperwork for an appointment with Dr. Castells.  I was able to get a phone consult in November and am now awaiting our appointment on May 1st for a full investigation into Mast Cell Activation.  My son will also be seeing Dr. Ari Fried at Boston Children's to consult with Dr. Castells.

I believe the protocol on getting an appointment with Dr. Castells has changed slightly from when I submitted my information.  Your pediatrician should write a letter explaining Zoe's situation and that she feels Mast Cell Activation should be investigated.  You'll need to fill out some paperwork for Dr. Castells and Dr. Akin to review which will include any labs, tests and procedures Zoe has gone through.  I'm wondering if her recent biopsies are still viable in that perhaps one of the Boston docs can order them to be stained for mast cells.

We're working on a med regime for my son.  He's currently on Ranitidine (Zantac compounded) 75mg twice a day.  He reacted to compounded Zyrtec so next to try is compounded Allegra (fexofenadine)  Since he just had anaphylaxis we're also treating with compounded Benadryl (diphenhydramine) 12.5mg every 3-4 hours.   He reacts to prednisolone so we weren't able to do a steroid with him at this time.  He also just reacted to compounded Hydroxyzine so that's another med that's off the list.  His local allergist just wrote a script for cromolyn sodium but at $595 for a 30 day supply I'm going to suggest either trying Gastrocom or Ketotifen.

We're homeschooling pre K this year and will probably keep him home next year as we figure this out.  

My thoughts and prayers are with you and your sweet daughter.  You're doing a great job.  Keep up the fight and please let us know how you're doing.
Tina

We use Stokes Pharmacy in Mt. Laurel NJ.  I can't say enough wonderful things about them.  Our pharmacist/ tech is Ashley.  She also has EDS and multiple unusual allergies.   She completely understands our situation and does everything possible to help us.  I believe they ship out of state.
http://www.stokespharmacy.com/

Tina