Mast Cell Disorders Forum - OffAnyone heard of Phillips-Offit Wakefield Syndrome?

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Mast Cell Disorders Forum › Non Mast Cell Disorders, such as Ehlers-Danlos, POTS, MCS-CF, etc. › Non Mast Cell Disorders, such as Ehlers-Danlos, POTS, MCS-CF, etc. › OffAnyone heard of Phillips-Offit Wakefield Syndrome?

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OffAnyone heard of Phillips-Offit Wakefield Syndrome? (Read 6525 times)

Worried Parent Tutor Offline I Love YaBB 2! Posts: 33	OffAnyone heard of Phillips-Offit Wakefield Syndrome? 09/14/12 at 17:14:11 Has anyone heard of Phillips-Offit Wakefield Syndrome? (apparently POTS and mastocytosis are some of the symptoms associated with this syndrome). I am not sure if this is even a valid syndrome but the symptoms sure fit what my daughter is going through. Pam
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Joan

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Re: OffAnyone heard of Phillips-Offit Wakefield Syndrome?
Reply #1 - 09/14/12 at 17:31:02

I couldn't find any authentic medical articles or published research about this. Do you have a link to anything published by the medical community? In other sites online there appear to be articles written by non-medical people about autism when I Googled this "syndrome."

Dr. Theoharides thinks that mast cells are part of autism, and he developed a supplement formula that seems to be having a positive impact on both mast cell patients and autistic children. However, I've never heard of SM or MCAS linked to autism as a syndrome. Has anyone else heard of this?

Joan

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PamH

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Re: OffAnyone heard of Phillips-Offit Wakefield Syndrome?
Reply #2 - 10/04/12 at 10:18:16

Joan I have heard that and I have one child on the spectrum, she is on the "good" end. She has aspergers syndrome, very rare for a female. I see the mast cell problems in her, but she says mom I have always been this way, and she has. Hopefully she will not progress. She also says "See now you know why I hate the detergent isle"! She is almost 23 years old. She has done well, we were afraid she would never be able to leave home. But she lives downtown Indianapolis, goes to college and works part time in the computer lab on campus! I am very proud of her!

Pam

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PamH

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Re: OffAnyone heard of Phillips-Offit Wakefield Syndrome?
Reply #3 - 10/04/12 at 10:23:23

Pam,
I have heard of the problem from the Gardasil HPV vaccine, so I didn't have my daughters get them. One of my girls got the first one ...then I found recordings of girls that had these issues on youtube, so I told her I didn't want her to get the last 2. They were very frightening.
Did your daughter have this vaccine?
Pam

Pam

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Worried Parent Tutor Offline I Love YaBB 2! Posts: 33	Re: OffAnyone heard of Phillips-Offit Wakefield Syndrome? Reply #4 - 10/04/12 at 14:18:51 Pam: No, my daughter did not have this vacine but the full article mentions that this can happen from a virus also (which my daughter did have right before all of her symptoms started 14 months ago). Pam
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PamH Mentor Offline Posts: 447 Indianapolis, IN USA	Re: OffAnyone heard of Phillips-Offit Wakefield Syndrome? Reply #5 - 10/04/12 at 14:43:45 Pam, I think a virus or illness of some kind is a common link for a lot of us on here. I had a horrible lung infection before my symptoms started. It must be some kind of trigger or something. Hope you find some answers!
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DeborahW, Founder FOUNDER/ADMIN Offline Posts: 1224 USA	Re: OffAnyone heard of Phillips-Offit Wakefield Syndrome? Reply #6 - 12/30/12 at 06:47:50 *This Topic was moved here from General Mast Cell Disorder Discussion* by DeborahW, Founder.**
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