I can only give my opinion, youve dealt with this much longer than I have.. and with such good humor too LOL.. ok, seriously.. I would say yes...because I know I have damage and the odds are that damage is from mast cell activity. I think the antihistamines block the receptors to a certain extent but never 100%. I read an article once that even said it is not possible to block 100% of mast cell activity --they are needed for communication in the brain and other urgent processes, so life itself would not be possible without some mast cells. To prove their point they stated that there has never been an autopsy done where they didnt find mast cells present.

In my opinion, I think youre right--about taking enough antihistamines to stop as many symptoms as possible.. I think any symptom means activity and possible damage.. I can say that when I shock I have erythema about 3 to 4 days after it--yesterday I flushed for the first time in about 3 weeks... and about 5 hours later I noticed erythema again on both arms..it didnt take me shocking this time and it didnt take me 3 to 4 days to show up... so my pattern is changing, not quite sure why. I pop an antihistamine anytime I feel a symptom..maybe it just makes me feel safer? lol
love ya
me

Joan,

Its are really valid question!!  I wish I knew all the answers!

From what I've read even of the different experimental studies, the answer is Yes!   It still does damage because we can never block it 100% because for many of us, the degranulation is chronic, meaning non-stop.  Mine is anyway.  And since histamine is but one of the many chemicals being put out by MCs, then taking the antihistamines is but one solution.  

I've been really impressed at how good Singulair makes me feel, in that I feel almost normal when I take it!   The other day I ran out of it and we couldn't buy it for a few days and I shocked just due to to the lack of the leukotreine blocker!  It really, really impressed me cause when I told my doctor about it and asked her what it was the sent me over, she said, Lack of Singulair!  I sometimes wonder if there are any other meds that are blockers we could take to deal with the other med that are constantly being dumped into our system!   Yet it also makes me wonder what kind of damage they do as well!  

I'm afraid that I've not studied enough to know those answers, but yes, Joan, damage they are doing, even if just calling in other inflammatory cells.

Is a mast cell inhibitor our best friend YES, YES AND YES!!!   The more we can inhibit our MCs, the best!  Why?  Because this means less MC mediators released and therefore less damage and with this more stability.   This is why my dose of Ketotifen is up to 6mg and I"m thinking to take it up another 2!  I don't see what harm it could do versus the harm the mediators cause me.  I'm still considering it.

Hugs!

Lisa

I will email Dr Akin and ask him this question next week. I have a feeling that he will tell me that it is not in our best interests to always jump straight to gastrocrom if the more minor meds do the job.

And thats where I am now. Its ok for me, even good for me to be able to live as healthy as possible--for me. I really want to hear what Dr Akins says too.. but I cant help but have this gut reaction that tells me, anytime I have a symptoms, there is activity and I should stop it--maybe not with the strongest med but definitely something I respond to well. Symptoms mean mast cell activity which means an opening for damage... and not stopping symptoms means you now feel rotten and that alone is another trigger for us to get stuck in that cycle of reacting and one step closer to shocking. I feel that controlling symptoms is important to not advance any further with this disorder , to not react stronger or quicker in the future and to prevent damage. Just my gut reaction.
Hugs,
Ramona

Quote:

Isn't that the truth!  In fact, if you have a "co-morbid" condition making it difficult to treat your mast cell disorder (or vice versa), I strongly urge going to one of the real specialists like Dr. Akin or Dr. Castells.  This forum is great for support, self-education, and learning how to make lifestyle changes, but none of us are doctors.  Not everything we say applies equally to everyone else.  This is very important to remember!

Heather

Ruth,

I can really empathise with your concerns for as a mother, you are making decisions for your child which he will have to bear out for the remainder of his days.  How serious are the medications we have to take on a long term basis?   Those of us who are already around our 40s or older don't think too much about this even though it is in the back of our minds.  But to consider a child who may find he must live with these meds for his full lifetime, this is a heavy question and one that really deserves a serious answer from an authority.

However, you must balance this as to considering what the other angle of this is.  Those mediators and especially anaphylaxis do a whole lot more damage than I'm sure the antihistamines do.  If he were taking steroids, that would be a different issue then for they are known for doing terrible damage.  But the antihistamines are not.

If you read about the carcinoid syndrome, a tumor which produces mediators similar, but not the same, as mastocyotis, they say that although the tumor is a cancer, it is a fact that the patients will more likely die from the mediators those tumors release than from the cancer itself!  Although the Carcinoid produces an almost identical constellation of symptoms that masto does, the mediators released are far more harmful and known to cause serious heart damage and other problems.  Thankfull masto is not so and we are dealing with a much more kinder set of mediators than those patients face.  However, we deal with anaphylaxis a very serious reaction which causes quite a lot of strain on our bodies.  This is what you must consider, which is the lesser of the two evils here?  You son can't live a good quality of life feeling as miserable as he must feel.  I don't know if you have masto or not, but if you do, then you know how awful it is to feel this way constantly!  As an adult there are times when all I want to do is crawl up into a ball on my bed and just lay there and try to forget how awful I feel!  It's hard to do my regular duties as a mother and there are days when I just can't!  How much more difficult must it be for a child who can't understand why he feels so rotten?  How these kids can manage to sit all day in school studying subject like math and science when they don't see any purpose to it all, I don't know!  God help them when they're feeling rotten and how they manage to pass, that's something I can't figure for my brain will literally shut down some days and I can't even answer a simple question posed to me by my 13 year old son!!   So, although I realize that it's a hard choice to make, I think that you've got to try to put yourself in his shoes and say, which is worse and which is better and use that to help you not think of the things that are beyond our control like the long term damage.  The chances are, your son will grow out of his masto, which 90% of the kids do!  Let's hope that he's one of them!

I hope this helps!

Lisa

Ruth,

This thing of dealing with doctors is exhausting!  Welcome to the world of the masto patient!  I teasingly call myself Lisazilla and imagine all kinds of little white coated doctors scurrying away from me beneath my feet!  What a Lisazilla needs most is a DOCTORZILLA! And you know how easy they are to find! HAHA

I FULLY understand your concerns, Ruth because I'm a mother as well.  I wish that I could lend you my dermatologist because she's a DOCTORZILLA!  She's learning about the MCAD form of masto with me for she never knew it existed either.  Yet, she's got an open mind and perhaps you can open up your doctor'd mind as well.  My doctor had a really hard time accepting MCAD but she couldn't deny her own eyes for she saw me with the flush and she saw my high histamine levels and she listed to my reports of how I would get sick.  Yet she didn't know that masto had a hypertensive form and she hadn't any aggregates of mast cells to confirm anything and so for a long time she remained in doubt!  But, God bless her, she knew I had nowhere she could send me for I live in Brazil and she is our highest authority.  She was stuck with me and she's not repented of it for although I've challenged her, she's grown with me and now shes returning to university to get her PhD at 57 for my case has opened up a new world of masto she didn't realize existed and it's got her excited!

Yet, I also understand your concerns, Ruth, for I'm very concerned about my eldest son who just turned 20.  He's been diagnosed with proctitis and was having intestinal bleeding.  My gastrologist didn't think too much of it until I questioned her about what my own case might have to say about this formy case is autoimmune masto and autoimmune diseases are known to run in families and although nobody in my family has a history of an autoimmune disease, because I've shown these markers, I had to question what is going on with my son.  So my gastro heard me for proctitis can be autoimmune caused.  Sure enough some of the very same markers I've got, he's showing, especially the ANA test.  His is 1:320, just as mine is!  Well, I've tried to find an immunologist, but nobody wants me and they won't take him either!  So I threw this concern of mine at my dermatologist - she's also a pediatrician!  She got very concerned about this and had me get my gastro do another endoscope and colonoscope with biopsies taken up and down the line.  I had the tested for masto and the findings are astounding!  What to the gastro's naked eye looked like nothing, has turned out to be an eosinophilic and lymphocytic colitis!   My dermatologist is floored and she's contacted a hematologist at a major university and asked her to take his case for this doctor likes hard cases and we're going to see where it takes us!   Although in my case we don't find any eosinophils, we do find the lymphocyte aggregates and so all of this is somehow connected, but how exactly, we don't know, but my dermatologist suspects that my son may be in the inicial processes of developing masto, but without any answers, there's just now way to know!

Ruth, the point here is that you MUST keep pushing for answers!  You also must teach yourself about masto!!  There is no other option!!!  You've got to educate yourself as to this disease so that you can feel less helpless with the doctors and speak to them in a language that they can understand.  This will make it so that you don't fell so impotent with them and you will have more confidence in yourself.  Doctors don't always like it when a patient knows so much, but they do give more respect to those who can understand what they are talking about.  This dermatologist has a typical response and in truth, he is right to certain respect.  The disease in the SM form presents much more danger to the patients due to the invasion of the mast cells into the tissues - it causes damage to those tissues.  Yet, what doctors of his level don't know is that recent research is showing that there are cases which had previously been considered as not having the neoplasm, have instead been found.  Research is beginning to reveal that there are cases where they can't see the neoplasm and very special testing is required to reveal it!  

Ruth, don't you think it's time you take your son's case up a level?   His case sounds like Kim's daughter Brie.  If he has no spots, then he is a VERY RARE case of pediatric masto for the great majority of those kids have spots, so when one or two come along without the spots, the doctors can't recognize it!  Your son may not be as sick as others like Brie, but it doesn't mean he's not needing attention.  I don't know what your financial situation is, nor where you live, but you need to consider taking him to one of the experts!   You've got two choices open to you, that of Dr. Schwartz in Virginia and that of Drs. Castells and Akin in Boston.   Kim has been working with the doctors at the Mayo, but not gotten far and so this is why I don't recommend that route for she's looking to Boston now.  And there's nobody really on the West coast either so I would recommend that you consider taking your son to one of those three.

Yet what I would suggest to you is that you give me your email in a PM and I'll send you what little information on MCAD and those forms of masto which are not showing the aggregates for your doctor and you print it out and leave it at his office for him.  Educate him!

Also,  I would also take your son's medications into hand yourself.  You said he has GI issues.  He needs Ranitidine - 150mg twice a day.  This is over the counter medicine and so there's nothing stopping you from giving it to him.  That with the other meds he gave you should suffice for now until you see how he responds.  

As to the long-term situation of the meds, Ruth, I hear your concerns, but I also hear what the doctor is saying too.  For right now, until you can get to a higher level doctor, don't think about this end of it.  Antihistamines are wonderful drugs and they cause very few side affects and are not known for causing any real long-term damage.  Don't worry about this, not right now.  This is a question worth posing to an authority in masto, this lower level doctor isn't going to know the answer which is why he may have blown you off.   yet, again, I have to agree with him for although you may be concerned about the long term, you've got to consider the emotional and psychological impact of not being able to be a normal kid can have on your son.  I've got my eldest son and daughter who are 21 and 20 and my youngest who is 13.  My elder son never had issues growing up, we're only finding them now as he's moving into adulthood and the stresses of the adult world of working and studying and going 24 hours.  This stress is what is bringing his illness out into the open.  But boys, especially need to be able to get dirty, and sweaty and gross.  We girls have different ways about us, but boys must be boys, it's part of their finding their manhood!  They have great amounts of physical pent up energy and if you don't allow these boys to be "men" then you can cause a detrimental effect upon their self confidence as well as their manhood itself.  There is an excellent book to read by the author Dr. James Dobson calle Binging Up Boys.  I'm a school principal and I've given this as required reading for my teachers for women tend to get upset with boys for just being boys and it's not right nor fair!  Boys have ants in their pants and can't sit still - it's punishment for them!  They need to be active, but this activity works against masto, for this stirs up the mast cells and this is what causes the reactions.  If your son is not adequately medicated with antihistamines, he's going to be unable to be a boy and the other boys will call him a wimp and he'll loose confidence in his manhood as a result of this!  He won't understand that it's not a question of who he is, but of his body causing him problems.  But children don't understand these things and they take it personally and think that it's who they are and they lose confidence in themselves and don't have the maturity to understand that it's the stupid disease and not them!!   Your son need to be involved in sports in a situation where the temperature is controlled so that he can be cool - swimming and diving and any kind of water sports is ideal for they will help keep his body core temperature down and stable.  He also needs to take extra antihistamines before he gets into any strenuous activity for it will help to deal with the degranulation that the mast cells will release.  

So, this, I htink is what your doctor is trying to say to you in that you should not be overly concerned as to the long-term consequences at the cost of his maturing as a young man.  This, the developmental damage and emotional damage, far outweighs your concerns of the physical damage being done.   Yet this is also something you need to consider and talk over with an authority in the disease and this is why you need to go to either Boston or Richmond because these are very valid concerns you have.  

I hope this is a help to you, Ruth!  Again, I understand your worries, but sometimes we have to look at the bigger picture here and gain a bit more perspective over all.

Hugs!

Lisa