Julie T
Tutor
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I Love YaBB 2!
Posts: 73
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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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