Joan...
My GYN warned me not to take Ultram and Lortab together (of course), but she didn't say anything about antihistamines.  Benadryl doesn't make me loopy... it never has... so I guess I'm not too worried.  Drugs.com and Medscape say there's a "moderate risk" if you take opiates with any kind of H1 antihistamine, including Zyrtec and Claritin.  Benadryl really knocks some people out, so I can see why your doctor would be concerned.

Susan...
I have been better about taking pain medication at the first sign, not waiting to see how bad it gets!  I figured it was like mast cell meds  You're better off not waiting.  Thankfully, I don't have this pain every day... it comes every 3-4 weeks.  Maybe when the first day of the new cycle hits I could take one tablet each afternoon for several days until I know I'm in the clear again?  I'll ask Dr. Castells about it.  Mostly, I'm hoping to prevent the pain and swelling entirely.  If it really is angioedema then that presents some new options for treatment.

Heather

HI Mike!

It was great seeing you here in Indy! So, how did you feel the rest of the trip, and did you end up buying a car?

HI lADIES,
   I JUST HAD ANOTHER QUESTION FOR YOU. MY SONS MAIN PROBLEM IS THE CONSTANT LOWER INTESTINAL/STOMACH PAIN, FLU LIKE SYMPTOMS. HE RUNS A FEVER FROM 99 TO 100 FOR THE LAST 5 MONTHS. I TOLD THE IMMUNOLOGIST THIS AND ABOUT HIS HOT COLD SYMPTOMS. SHE WAS CONCERNED ABOUT THE WEIGHT LOSS MORE AND HIS VERY LIGHT SKIN COLORING. SHE IS RUNNING MORE BLOOD TESTS AS I SAID EARLIER, BUT I WONT GET THEM BACK FOR A MONTH.
   MY QUESTION IS THIS. DO PEOPLE HAVE THIS CONDITON WITHOUT FLUSHING(I HAVE NOT SEEN THIS ON MY SON) ALTHOUGH HE SEEMS TO BE DEVELOPING MORE FOOD ALLERGIES HE HAS NEVER HAD A FULL BLOWN ATTACK YET. I HAVE GIVEN HIM BENNADRIL WHEN HE FEELS LIKE HIS THROAT IS CLOSING UP OR HE SAYS HIS TOUNGE IS SWELLING, I IMMEDIATLY  GIVE IT TO HIM. SINCE I HAVE ELIMINATED SO MANY FOODS THIS HAS NOT HAPPENED RECENTLY.
  MY MAIN THING IS HIM LIVING WITH THE CONSTANT LOWER INTESTINAL PAIN, STOMACH PAIN, ACHES IN BODY,SOMETIMES HEADACHES, QUIZZY FEELING EVERY DAY NOW FOR 5 MONTHS.it'S VERY HARD ON MY FAMILY LISTENING TO HIM SUFFER EVERYDAY. I ASKED THE IMMUNOLOGIST DR. THIS WEEK FOR SOME PAIN MEDICINE FOR HIM AND SHE SAID NO SINCE SHE DOES NOT KNOW WHAT IT IS. THE IMMUNOLOGIST I SAW A WEEK EARLIER THINKS MY SON HAS MASS CELL, THE NEW IMMINOLOGIST DOES NOT THINK SO.  SINCE THE BLOOD TESTS WONT BE BACK FOR A MONTH NOW, I CANT COMPREHEND WATCHING HIM SUFFER ANOTHER MONTH. THE PAIN IS ALWAYS WORSE AT NIGHT AND IN THE MORNING, ESPECIALLY IF HE DOES NOT EAT. HE TAKES VERY HOT BATHS EVERYDAY BECAUSE HE IS FREEZING, HE INSISTS ON THAT.
  DOES THIS SOUND LIKE WHAT YOU HAVE OR DO YOU THINK IT IS ANOTHER CONDITION? I HAVE TO TAKE CITRAZINE DAILY(MOM) AS I HAVE TOO MANY HISTIMINES IN ME.  YOU PROBABLY KNOW THE NAME BUT IF I JUST SCRATCH MYSELF THE MARK COMES OUT IMMEDIATLY. I ALSO REMEMBER HAVING CRISS CROSS RED STRIPES ON MY BACK LIKE TICK TAC TOE 2 YEARS AGO AND THE ALLERGIST PUT ME ON CITRAZINE WHICH SEEMS TO HELP. I WONDER IF I HAVE A FORM OF THIS.THE ONLY TIME MY SONS PAIN EVER STOPPED WAS  WHEN HE WAS ADMITTED TO ST JOSEPHS CHILDRENS HOSPITAL FOR THE COLLINOSCOPY , THEY KEPT HIM FOR OTHER TESTS OVERNIGHT AND THEY HAD MY SON ON A DRIP,.I THINK IT WAS A BLOCKER OF SOME TYPE AND MY SON SAID IT HELPED WITH THE PAIN.

THANKS AGAIN.

SHERRY

Heather,
  It was something for dehydration I believe, nothing for pain. The nurse acted like they give it to almost everyone. We did send for the records from the hospital because I told the Dr. that and she also wanted to know. I remember I called my sond gastrologist after he got home and told her this, she ordered a script for my son but it did not help with the pain and quit using them. So.......does his symptoms not sound to you like mas cell then? I can feel the inflamation and see his stomach extending even 20 minutes ago as he prepares for bed in pain again, lots of stomach gas again. Because of where this pain and swellling is(just below the belly button) he always has alot of pain when trying to push through a stool, whether soft or medium. stool test showed normal.He was on previcet for about 2 years which I heard is not so good long term.
   Tonight a new thing happened for the second time. My husband took my son to the pool at the clubhouse when he came home he was saying 'I'm itching all over!" we tried three showers to get him to calm down. I also noticed he is now having problems with out regular bar soap too so I through it out and used shampoo on him, that seemed to work fine. Do you think this is related to the pain in his lower intestines, stomach? Something is causing the inflamation.

sherry

Hi Sherry,

  I don't know if his abdominal pain is from the same problem as the itching, but the itching sounds allergic or mast cell-related.  Have you started your son on H1 and H2 antihistamines and probiotics yet?  Be sure probiotics are vegan, so they won't contain milk.  

  I would never rule out trying a recommended medicine based on possible long-term side effects.  You need a quick, short-term solution until you can get an accurate diagnosis.  You might want to ask his doctor about either gastrocrom or ketotifen.  They are very benign, as medicines go, and could help both allergic and mast cell problems.

  Also, if he's having throat closing, do you have a child's epipen twin-pack at home?  Ask his allergist about this, how and when to use it, just in case.  If an antihistamine like Benadryl works when his throat is closing, a regimen of daily long-acting antihistamines should help with some of his symptoms and maybe he can avoid those scary episodes as well as itching and other uncomfortable symptoms.

  You might want to check with your pediatrician about two things. First is whether you can give your son simethicone (Gax-X).  This may help the distention and pain.  Mylicon brand is approved for infants, and I would probably try that or one that has no artificial colors if you can find one.  There are generics, too, but some are colored.  If it were my son, I'd give him the maximum allowed dose for his age and size.
 
  I also would ask the doctor about prescribing an "elemental diet," which is a pre-digested nutritional drink (you can Google it), which allows the bowels to rest while still giving him nutrients he needs.  If he did better having electrolytes in the hospital, you could try giving him Pedialyte and see if it helps.

  I've found that a hot water bottle is very soothing for cramping, and if he's cold, it will help that, too.  In the morning, a cup of warm water to drink before he eats anything might be soothing, too.  If he can tolerate it, you could add a spoonful of honey.  

  An allergy elimination diet might give you some more information.  His allergist can explain how it's done.  Just be sure to also eliminate all high histamine foods, too.

  If you can't find anyone who can diagnose him in your area, National Jewish Hospital in Denver might be a place where they can get to the bottom of this.  They see people on an out-patient basis and have comprehensive groups specialists who are used to seeing the most complicated, rare, and difficult cases in the world.  

  People (adults and children) fly in from all over the world, as it is a premier institution for diagnosing and treating immune and auto-immune diseases.  I had mastocytosis for 16 years, saw specialists at several major medical centers, and National Jewish diagnosed me in one day.  Although it's expensive to fly somewhere, sometimes it's cheaper than going to many doctors and through many tests and not finding any answers.

  Good luck.  I hope this can be diagnosed soon!

Sherry,

There is a doctor we've recently become aware of, Dr. Afrin in South Carolina.  One of our members has recently seen him, Jared. She's from the south of Florida.  Send her a PM and ask her for his contact information.  He's recently published a report which shows that he's right on top of the MCAD diagnosis and this is where your son might be.  

Part of the problem you are facing, Sherry, is that you've got to have doctors who have done a workup to rule out other things, for there ARE other possibilities.  I would think the Dr. Afrin would know how to do this, but until it's been done, you, as the parent MUST keep your mind open even though you feel convinced that by the symptoms that masto is the problem.  There are things that mimic masto  - for example, a histamine interlerance syndrome would provide many of the very same symptoms as masto not because your son has too much histamine, but that his system can't deal with the normal quantities he has, thus producing many of the same symptoms.   So, you see, it's very complecated working with masto patients - there are issues that must been seen and only a doctor who really knows masto will know what they are.  So, although you've gone to plenty of good doctors, you need a specialist and that's going to take some travelling and pinching of pennies to get those answers - something we all eventually come to the realization of as being necessary for us to get appropriate treatment.  I work with my local doctors up to a point, but if we need real answers, I have NO CHOICE, and we MUST travel!!!!  This is how it is living with a rare disease.


As to the fever, Sherry, it may indeed be nothing.  If your son does have masto, then it is well known that the mediator release of prostaglandins is behind the fever!   When I have been stressed too much I've gotten a fever.  I had one last week.  It's not due to any infection whatsoever.  It appears in the evening and is gone the next morning.  There's no achiness with it, at least not for me, and no flu or cold symptoms, at least not for me - just very cold and sensitive feeling and a low grade fever.   It may be different for another patient, however.   It was Dr. Castells who told me that yes, masto patients can run fevers for no reason other than the prostaglandin D2 mediator release.  An aspirin should resolve that, I should think  - not tylenol or another NSAID for it is  aspirin which is a blocker for Prostaglandins and tylenol will not do this.  

I hope this helps.

Lisa

I just wanted too add that when my son who was 17 at the time and had chronic Hives and had a high CU index that at the time was the test for mast cells, he saw a DR at celevland Clinic Weston florida who was a great help too him at the time I might see him for myself but wanted to start with a hematologist but if that is close too you let me know I can give you his name he is an allergist immunologist