Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl 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? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1347682452 Message started by Worried Parent on 09/14/12 at 17:14:11

Title: OffAnyone heard of Phillips-Offit Wakefield Syndrome?
Post by Worried Parent on 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

Title: Re: OffAnyone heard of Phillips-Offit Wakefield Syndrome?
Post by Joan on 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?

Title: Re: OffAnyone heard of Phillips-Offit Wakefield Syndrome?
Post by PamH on 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

Title: Re: OffAnyone heard of Phillips-Offit Wakefield Syndrome?
Post by PamH on 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

Title: Re: OffAnyone heard of Phillips-Offit Wakefield Syndrome?
Post by Worried Parent on 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

Title: Re: OffAnyone heard of Phillips-Offit Wakefield Syndrome?
Post by PamH on 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!

Title: Re: OffAnyone heard of Phillips-Offit Wakefield Syndrome?
Post by DeborahW, Founder on 12/30/12 at 06:47:50

This Topic was moved here from General Mast Cell Disorder Discussion by DeborahW, Founder.