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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Mast Cell Disorder Doctors >> Help please! Young friend needs a doctor. Any ideas? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1340336554 Message started by Maiysa on 06/21/12 at 16:42:34

Title: Help please! Young friend needs a doctor. Any ideas?
Post by Maiysa on 06/21/12 at 16:42:34

I had lunch with a friend and her son has been battling a mysterious illness for a few years now. He is an amazing 13 year old and was very athletic and happy. Since this mysterious illness he has missed several months of school in the past few years. They have taken him to some of the best doctors on the east and west coast and nothing shows up. You can imagine how this goes with the doctors when nothing shows up on blood work. I am frustrated for them. You can tell the poor kid is sick. They thought he had crohn's and did the colonoscopy and nothing showed up, but has a lot of the GI issues. I went to see him a year ago and he was so sick that he couldn't even sit with us and started flushing after he ate. He also has constant stomach cramping and now seems to have neuropathy-numbness in feet and hands. I am wondering if he has a mast cell issue. He was well for 4 months but after playing sports in the blazing heat here in the desert, the mysterious illness came back again. Very flushed face and stomach cramping and can barely do anything he is so sick. Her relative is a doctor so she has access to the blood and urine tests which she is going to get today. (I told her to get the 24 hour urine methyhistamine and 11 beta prostaglandin alpha F2 and gave her the protocol for keeping everything cold and to do a tryptase test and compliment test just for good measure) Am I missing anything? Two more questions, it took 5 months for me to be able to get into the doctor to help me here in the southwest. Is there somewhere she can get into earlier? And which doctor would be willing to see children? Maybe Dr. Theo? Any ideas would be greatly appreciated. It's just so painful to see a mother's heartbreak. I feel terrible for her and want to help as quickly as possible. This poor kid has missed out on so much the past few years.
Thank you all in advance!!!
Maiysa

Title: Re: Help please! Young friend needs a doctor. Any ideas?
Post by DeborahW, Founder on 06/22/12 at 07:59:45

This sounds like an obvious case of mast cell disease. Dr. Castells In Boston sees children. That is who I would go to right away if it were my son.

Title: Re: Help please! Young friend needs a doctor. Any ideas?
Post by mommy2seanp on 08/12/12 at 02:32:06

Maiysa,

Did you ever find anyone in AZ who know's about MCAS? Trying to get information for another mommy.

Thanks!

Title: Re: Help please! Young friend needs a doctor. Any ideas?
Post by Julie T on 08/12/12 at 11:50:39

I live in AZ. We work with a naturopath that works with dr castells now. just started the process. we see castells in october. you can private message me...

Title: Re: Help please! Young friend needs a doctor. Any ideas?
Post by mommy2seanp on 08/12/12 at 13:49:27

Thanks Julie. I'd appreciate the recommendation. I sent you a PM

Tina

Title: Re: Help please! Young friend needs a doctor. Any ideas?
Post by Lisa on 08/12/12 at 16:26:15

Tina, Dr. Theo is not licensed to practice medicine in the US, so he can not help. Dr. Castells is the ONLY one who sees children. You can try talking with her youself about this child since she's already speaking with you about Sean. This kid sounds like MCAS without a doubt, but he could be SM without anybody knowing it. The trytpase will tell if he's SM or MCAS and then based upon that you'll know what to say to Dr. Castells.

It's worth a try anyway!!

Lisa

Title: Re: Help please! Young friend needs a doctor. Any ideas?
Post by Joan on 08/12/12 at 18:57:06

Has anyone in AZ heard of Dr. Laura Ispas-Ponas at the Sonoran Allergy and Asthma Center? She co-authored an article about mastocytosis with W. James Metzger in 2001 that's reprinted on her website. I don't know if she's stayed current on masto research or not. Does anybody have any info about her?

Title: Re: Help please! Young friend needs a doctor. Any ideas?
Post by Lisa on 08/13/12 at 01:08:24

Joan, the way to find this out is to write to her and ask her for yourself. Very often doctors who write articles have either their own emails published on the article or there is a corresponding author whom you can contact. Write to whomever is listed telling them that you are looking for this doctor and wondering if she´s up to date on masto because you are looking for a doctor in that area.

Another thing, doctors who write medical articles, even those who write articles of just a case report they had in their hands, they have to do some kind of research and study on the disease of that patient case. They have a minimal understanding and interest at least. They may not be experts by any sense of the word but at least they are a step ahead of the other doctors in their region for having had a masto patient with a case odd enough to write about and odd enough to force them to study in order to produce the article.

I have learned through my journeys that you have three kinds of doctors - low level doctors who just do their job, period. Then you have those who are a bit more interested in medicine, the mid-level doctors, and they are those who write the case reports of the oddities they come across. They find the odd cases cause they are a bit more curious, but they are not so very curious because they don´t take that odd case or two and keep going further into research. Then you have the high level doctors who LIKE RESEARCH and are EXTREMELY CURIOUS about medicine. These are the ones who either go into research right off the bat, or they find some odd cases which pique their curiousity and they begin to go step by step further into the area and begin to write article after article about what they are learning and discovering and eventually become so into their studies that they become recognized authorities by their colleagues.

So, a doctor who produces only one article is not going to be an expert, but again, this doctor is still a step ahead in the game and worth looking into as a PCP.

So, my dear, I´ve given you some homework! Let´s see how you do with the challenge!! ;) I rather think you´ll get an A+

:-*

Title: Re: Help please! Young friend needs a doctor. Any ideas?
Post by mommy2seanp on 08/13/12 at 01:17:59

I wasn't the original poster Lisa but yes I've already spoke to this mommy about Dr. Castells. She'd like to see someone local in the meantime to make sure she's barking up the right tree (which I think she is)

Anyway, thank you guys. I appreciate everyone's willingness to help!

Title: Re: Help please! Young friend needs a doctor. Any ideas?
Post by Julie T on 08/13/12 at 02:31:03

Joan, I saw the website for that dr too a while back and wondered if she would be a good option for people in AZ. At least she is aware! right!

Title: Update AZ doctor
Post by Joan on 08/14/12 at 08:18:46

Sad to report....

Although Dr. Ispas, in Scottsdale, has an article about mastocytosis on her website, her nurse checked with her, and she has no interest in treating mast cell disorder patients of any kind, because she has not kept up on the research. She is also unwilling to act as a local liaison for MC patients or to treat allergies in mast cell patients, according to her nurse. In fact, she wouldn't speak with me, but recommended a doctor at NIH as the leading expert....

Disappointing.

Title: Re: Help please! Young friend needs a doctor. Any ideas?
Post by mommy2seanp on 08/14/12 at 11:47:45

Thank you Joan for checking this out.

Title: Re: Help please! Young friend needs a doctor. Any ideas?
Post by DeborahW, Founder on 08/14/12 at 14:53:28

You need to tell your friend that seeing someone local (who probably isn't knowledgeable enough, but won't even realize it) is exactly what she shouldn't do. I can't imagine why anyone wouldn't race straight to the top for their child. I do that for myself, and my children come before me. So, I would definitely be contacting Dr. Castells if this were my child. The last thing she wants is to get bad advice and head down the wrong path, thus hurting rather than helping her child.

Sorry to be so blunt, but that child depends upon mom to make the right decisions....

Title: Re: Help please! Young friend needs a doctor. Any ideas?
Post by Joan on 08/15/12 at 19:04:11

I couldn't agree more.

Title: Re: Help please! Young friend needs a doctor. Any ideas?
Post by mommy2seanp on 08/15/12 at 23:20:30

I appreciate your suggestions and always recommend Dr. Castells as she is my son's doctor but for some flying a child who's "allergic to the world" across the country isn't always a feasibility. Many of these moms that I'm reaching out to don't know what's going on with their kids and until some research comes out in regards to "MCAS and Children" they have little to no guidance as to if this "IS" what their child has. The mom in question is already dealing with a child with an Eosionphilic disorder and multiple allergies. I know that an EGID can be secondary to Mast Cell which is why I made the suggestion. Unfortunately, I am not a doctor and can not diagnosis someone based on email communication. For some just starting this journey, and already dealing with other allergic conditions, a local contact would be a logical first step. In addition, Dr. Castells will not see a new patient without a letter of referral from a local doctor suspecting the disorder.

Title: Re: Help please! Young friend needs a doctor. Any ideas?
Post by DeborahW, Founder on 08/16/12 at 00:41:42

Unfortunately in regard to mast cell disease, this philosophy just won't work. Seeing a local doctor who just doesn't know mast cell disease (which is 99% of the doctors) won't help anyone get better and just prolongs the condition. If it is a patient with anaphylaxis, that means a risk of life and death. To assume a local doctor will recognize this and be able to help is great in an ideal world. However the reality of the situation is that even if a doctor has heard of mast cell disease and can recognize symptoms of it, they still won't have the knowledge or specialized facilites of how to properly test for it. I went TEN years undiagnosed, sick, and searching for answers. That is ten years of feeling like I had the flu, being too sick to do things, and having the worry that something was terribly wrong with me. I saw doctors in Indianapolis and Chicago, to no avail. It was only through the advice of online people who had the same thing (specifically Nancy Gould) that I got put on the right path and found Dr. Akin, one of the top specialists. Thus the reason that I created this forum so that others did not waste years with local doctors who may be nice but not equipped to help.
As you see I feel strongly about this and this am replying as such, not so much in regard to your friend and her daughter (because she is going to do what she feels easiest), but in regard to all the new members or readers of this forum. I have a responsibility as forum owner to jump in and share my opinion (yes, it is simply my opinion) if I feel that new people could be led astray by what I consider faulty thinking. I don't mean that you are faulty, by any means. I mean your friend's thinking...but once again that is my personal opinion although I think that you would see agreement from our veteran members and forum advisors who have been up and down these paths before.

In regard to Dr Castells only taking referral patients, that may be the official word, but we have seen plenty of people self refer and be approved for phone consults with Dr Castells. This is a good alternative if someone is too worried about traveling. In a perfect world, we could find a local doctor who wanted to consult and be guided by Dr Castells or Dr Akin, but so far I have only heard reports of doctor egos getting in the way of that.

Title: Re: Help please! Young friend needs a doctor. Any ideas?
Post by mommy2seanp on 08/16/12 at 01:50:31

Everyone is entitled to their opinion but speaking from the point of view of a mother who has a very sensitive/ sick child if we lived in AZ we would not have been able to "just" fly to see Dr. Castells. Fortunately we were able to jump in a car and drive 5 hrs after a 6 month wait. For all the newbies reading this especially if it's a mom searching for answers for your child there is nothing "easy" about our situations. This mom is not taking the easy road by any means just trying to figure out if this is something she should pursue. I applaud her for continuing to search even though they already have an EGID diagnosis. Although I understand that Dr. Castells is one of top docs there are many local docs popping up that have an understanding of the disease. It was my intention to try and find one of these doctors for her so she could get an idea if this is something she should pursue and begin the appropriate med treatment. Again, when you're dealing with a child who already has allergic conditions and med sensitivities you can not just run out to the local pharmacy and begin H1/ H2's. Usually they need to be compounded and that requires a doctor to prescribe them.

No, self referrals are not accepted anymore, especially for children, and although phone consults are greatly appreciated she can not diagnose you over the phone and will not call in scripts for compounded medications if you are not her patient.

So although in theory it sounds "easy" to just go and see Dr. Castells there are hurdles that us mom's have to overcome with ill children. Again it was not my intention to send this mom to another fluke doctor but rather find her a referral to a local allergist who has heard of the condition to begin proper treatment and get a referral to Dr. C.

Title: Re: Help please! Young friend needs a doctor. Any ideas?
Post by DeborahW, Founder on 08/16/12 at 02:40:40

Clearly you are not grasping anything that I am saying. However you are entitled to your opinion. I don't like that you are posting things as if they are facts rather than your opinion, when in reality, they are OPINIONS. We will consider this discussion closed. Thank you for sharing your thoughts. At this point you have hijacked the original poster's thread. Therefore, I am locking this one. Sorry to the original poster.