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Comment by Marianne Mancone on June 21, 2009 at 7:26am

Hello Everyone, it's been months since I posted. I've been treating my son for pyroluria and adminstering B12 shots the the buttocks. He likes them and it is part of his protocal. I have been able to lower his medication and eliminate one other med. He is swimming twice per week doing laps and I just started him in bowling (FREE for the summer). I am working on getting him his own platform swing so I can eventually work him into "prone" position. Between that and the mouth, these are the primary sensory sites to work on. I hope everyone is surviving the summer. There are some great online, FREE, websites for early readers with quizes as the end. Good luck and keep working hard.

Comment by Marianne Mancone on April 22, 2009 at 7:21am

Dear Heather, I found out about pyroluria about 5 years ago through the Pfeiffer Treatment Center but for some stupid reason I stopped treating my son for it. I guess I just had too much going on and didn't realize the treatment was life long. It is only curable with a vitamin protocol but most doctors won't treat it if it doesn't require a script to treat. My doctor has agreed to treat this, and will be assisted by a doctor in the lab. Direct Healthcare Access II Lab does the test. It is only $58 - a simple urine test. I do get referral bonuses so mention my name if you are interested but this info is for you to decide. I don't want to advertise on the blog, only inform that this disease is real and is treatable. I am hoping it helps Anthony be less sensory. Hope this helps.

Comment by Heather Craven on April 21, 2009 at 11:19pm

Hi Marrianne,
No, I haven't heard of pyroluria, unless it has something to do with bacteria in the stomach or is that pylorie?
Anyways, I will definately look it up. Please share what you've discovered. How did you find info. about it? I hope your son is doing well.
Take Care,
Heather

Comment by Marianne Mancone on April 20, 2009 at 5:43pm

thanks, Heather. My son wears a weighted vest I bought at WalMart for $50. It is a Gold's Gym cross trainer vest. Perfect. He requests when to wear it and when to take it off. Heather, have you heard of pyroluria? We are in the midst of testing for it and I am doing some referrral business for the lab that conducts the testing. Use Ref#162. Some of my friends are already treating there kids and the sensory issues are diminishing. I look forward to my own diary results.

Comment by Heather Craven on April 20, 2009 at 2:23pm

Hi Marriane,
My best friend also has a 17 yr. old son who has never formally been diagnosed with SPD but when I started sharing what my daughter was going through bells and whistles started going off in her head. He's a very intelligent young man so teachers looked past his almost unreadable handwriting and his inability to sit still. One day she noticed in his back-pack he carried 6 full water bottles! Subconciously he must've been seeking deep pressure! He NEVER takes off his long sleeves he really hates the tickly feeling on his arms. And to my friends amazement he opted to wear his shoes almost 2 sizes too small! From what I know here locally pediatricians have just started acknowledging this disorder within the past few years. Most kids were just thought to have behavior disorders. I'm sure it must have been very overwhelming not knowing what your son needed. I wish you best of luck finding your answers. There's nothing like a Mom dedicated to helping her child. And as a parent of an SPD, I can tell you the mind body connection is astonishing and highly under utilized.