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daughter 15 with POTS and probable MCAS (Read 7106 times)
Julie T
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daughter 15 with POTS and probable MCAS
06/11/12 at 03:29:08
 
My daughter's story:  

My daughter was born with allergies.  She would get hives with contact with foods as an infant.  If I touched cheese and then touched her she would get welts.  She was unable to tolerate milk.  She has dermatographism. Other then that as an infant she seemed healthy although very sensitive.

My age 10 she developed psoriasis.  She then began to have symptoms of hypoglycemia, fatigue, headaches, exercise intolerance, noise and light sensitivity, cold hands and feet.  She was found to have IgE over 2000.  She is allergic to many many foods and airbornes.  

She began to have heart palpitations, migraines, brain fog, unreal feeling, moody, anxiety, irritability, dizzy, OCD (we thought step related initially), tremors, reflux, dilated pupils, noise sensitivity worsened, acne, irregular periods, temperature regulation issues, cramping of feet, uncontrollable emotions.

She went gluten/casein free in 2010 after consulting with nutritional specialist.  she told us the cytokines were making my daughter feel unreal.  She felt she had "leaky gut syndrome" -(which Dr. Theo talks about.)

We did some immunotherapy, tried sublingual drops with increased reaction so stopped.  We then did LDA immunotherapy last summer and within 6 wks all her symptoms significantly worsened and we landed in ER in tachycardia. We then got a diagnosis that seemed to fit finally = dysautonomia. My daughter is 15.

We traveled to DC last fall to see Dr. Abdallah a pediatric cardiologist that sees primarily dysautonomia patients.  He said my daughter has POTS and probable mast cell activation disorder based on her history and symptoms.

She is now on gastrocrom 4x day (2 ampules).  She also takes Allegra and Benadryl.  She is on midodrine, florinef (.5 mg 1x day), celexa (7.5 mg- very low dose she is very sensitive), klonopin and seasonal (birth control).  She has a very over active sympathetic system with largely dilated pupils much of the day and worsening dilation as she feels worse.  She is in fight or flight much of the time.

Klonopin has been the most helpful which we didn't start until Feb this year. Also gastrocrom calmed down her GI issues (no more reflux).  Also Benadryl helps decrease her "episodes".    

My daughter is homebound and cannot attend school.  She is a honor student and gets A's.  We are now down to 1-2 classes due to increase in symptoms.  I personally feel her problems are mast cell activation in the brain. (I have been reading Dr. Theo's research articles) I think there may be a breach in the bbb.  Many of her symptoms are brain symptoms and they are triggered by stress (any stress good or bad) and food allergies.  Her psoriasis is also a good barometer of her stress.  When more stress it is worsened.

We are starting to do some lab work and working towards getting an appt with Dr. Castells.  The POTS treatment has not helped my daughter much.  So far the things that seem to help most are related to stabilizing mast cells or decreasing histamine.

We started neuroprotek last week and are hopeful.  Dr. Theo is to contact our dr here to give her some guidance. Meanwhile we are working towards getting a consult with MCAS specialist.  

Any tips, advice are appreciated..sorry this is so long...
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hb36
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Re: daughter 15 with POTS and probable MCAS
Reply #1 - 06/11/12 at 10:44:01
 
Hi Julie and welcome.  I'm so sorry that you're daughter is going through all of this.  I know it can be so difficult and very hard on family members/caregivers as well when we can't find answers to help our kids.

I have been diagnosed with POTS, MCAS and EDS III.  It sounds like you are on the right track with medication trials, etc. and have made a lot of progress with finding some good doctors. I will be interested to hear how she does on Neuroprotek.  I am considering trialing that one as well.

One thing I wanted to ask is if she has tried Magnesium?  It helped me a lot with the adrenaline surges especially at night.  It seemed to calm things down for me and helped A LOT for quite awhile.  My tachy and insomnia definitely improved.  After awhile I wasn't able to tolerate it every day because it took my BP down too low.  So watch for that.  I still use it on occasion.  A lot of POTS patients swear by it though so if you haven't tried it yet, it might be something to ask her doctor about.  I use Natural Calm which is Magnesium citrate.  We are all so different in our presentation of MCAS that what works for one can be bad for another, but I think it might be worth a try.  
Heather

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Julie T
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Re: daughter 15 with POTS and probable MCAS
Reply #2 - 06/11/12 at 12:32:20
 
thank you Heather!  We have used Magnesium (natural calm) in the past.  Sometimes we forget about it.  I will retry again.  Thanks for the reminder.  What is nice is we see a naturopathic dr who helps us with dietary supplements and coordinating care with specialists.

I am starting to think the midodrine is making my daughter worse.  We have used it for 8 months and each time we try to raise she gets more anxiety.  I wonder if mcas patients with POTS have difficulty with it?

Dr. Afrin wrote me back and said it sounds like my daughter has mcas and he said our doctor here could email him and he would send information.  He does not see children.  

Dr Theo wrote us back too.  Waiting for his correspondence to our doctor.  I find his articles amazing and explain a lot relating to my daughter (migraines, psoriasis, etc)

Do any mcas patient have very high IgE like my daughter?

Thank you again!
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ruth
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Re: daughter 15 with POTS and probable MCAS
Reply #3 - 06/11/12 at 21:06:35
 
My son doesn't have a confirmed diagnosis, but looks likely to be MCAS. He had very high IgE for some years, went through all the allergy testing but virtually nothing came up positive, certainly not enough to explain the high IgE. It has recently come down from almost 3000 into the low hundreds. No idea what this means, and neither do his doctors. If you come up with an explanation for your daughter I would be interested to know what you find.  Sounds like you have good medical support, which is half the battle. We are still looking for that, but my son is not as debilitated by it at this stage.  I hope the new supplements make a difference for your daughter.

Ruth
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Julie T
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Re: daughter 15 with POTS and probable MCAS
Reply #4 - 06/12/12 at 03:09:48
 
Thanks Ruth!  If the supplement works I will definitely report in...it sure sounds promising...

I think the 10% of POTS patients have hyperadrenergic POTS with MCAS.   I thought I had heard Dr. Grubb say that on his video.  We are on wait list to see his nurse practitioner Beverly.  I know they are very familiar with MCAS.  

yes trying to get our team of drs.  My daughter in not participating in life much  We have to consult the experts so we can work towards getting her stabilized. It is not hard to push for this since she is barely able to do school work, see friends, leave house, etc...plus she says she cannot live like this almost every day.  she suffers with brain symptoms...

thank you!
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