Mum's health (just thinking aloud)

[Lydiasmum]

Hi,

 

My DD7 is suspected PANS (she'll always be 'suspected' as long as we live in the UK....). Thinking about my own history and health issues, I find this interesting and there MUST be a link:-

 

- Age 3 to 7 I had numerous sore throats (apparently I was one sore throat away from a tonsillectomy)

- Age 7 to 15 - mild eczema and very severe hayfever that needed prescription antihistamines

- Age 8+ lots of fears (heights, spiders etc.) and excessive worrying (I still do!)

- Age 14 (around exam time) a period of trichotillomania that lasted a year, coin-sized bald patches all over my scalp!

- Age 18+ mild OCD and paranoia (convinced people talking about me), highly sensitive to others body language/facial expressions, need for symmetry in my living environment, use of my favourite numbers for various routines etc. etc.

- Age 25 - got very ill with a chest infection that antibiotics just wouldn't solve (needed 3 rounds, but figure it must have just gone on its own after 3 weeks). Since this time I have had regular flare-ups of hives and angioedema - I get huge red, itchy swellings on areas of my skin where pressure is applied. This affects my feet the worst and seems to flare-up with hormonal changes and if I've been eating rubbish food. I take antihistimines daily (H1 and H2 blockers), Vitamin D (I have found to have a significant deficiency), turmeric for inflammation and a multi-vitamin complex. This combo is helping but hasn't resolved symptoms completely. I have been thoroughly allergy tested and blood tested over past 15 years but nothing obvious! The only thing that shows up on blood results is high inflammatory markers and negligible vitamin D.

 

I consider myself a well-functioning individual at 40 years old, but tbh I do worry a lot (even before PANS hit us), have mild OCD and fixations - and still scalp-pick if I get stressed.

 

Just thought this was interesting, considering my (mildly autistic?) daughter woke up with full-blown TS one morning - after having loads of sore throats that, of course, were always viral. My GP looks at me like I have two heads when I mention it.

[MomWithOCDSon]

Lydiasmum --

 

Like you, it seems pretty clear to me that, at a minimum, susceptibility to PANDAS/PANS has a genetic component. But, of course, that depth of history is rarely inquired into, even among PANDAs/PANS specialists. And other than perhaps encouraging yet another line of research (genetic) into this condition, I'm not sure what it counts for. Except that maybe it helps parents like you and me make a bit more sense out of the chaos that is PANDAS/PANS.

 

My DS was extraordinarily healthy overall, and classically asymptomatic for strep (no sore throat, no fevers, no physical symptoms of any sort), yet we finally got some treatment for PANDAS because of his high and consistently rising titers. Yet, like you and like me, he was somewhat prone to worry and anxiety even before our initial OCD diagnosis, but I'm not sure that even the manifestation of that "predisposition" wasn't due to early, young, undiagnosed strep episodes given consistently recurring ear infections from about 15 months until we finally submitted him for ear tube surgery at the age of 3. He's an only child, by the way, so we had no sibling experiences to measure him against in terms of strep exposures and illnesses.

 

Meanwhile, I too, was an atypically "healthy" child; my sister came down with strep at least twice a year when we were growing up, but I never "got" it. At least not in the classic sense. But I was, admittedly (sheepishly now) a behavioral handful, with most of my behavior I can now see in retrospect due to feeling highly anxious much of the time and therefore trying desperately to control everything around me . . . uber control it, even. As an adult, I'm sub-clinical OCD but off-the-charts Type A when it comes to both my home life and my work life. I'm learning to balance and mellow a bit the older I get, but it doesn't come naturally.

 

I got my first ever case of classic strep throat in my 30's, when my DS, despite no symptoms of his own, brought it home from grade school with him. This time, I had fever, a raging sore throat -- all the classic signs. It was a revelation, even before knowing about PANDAS/PANS. It also serves as a sign to me that my DS's immune system can and will "right itself" at some point, hopefully earlier than his early 30's given the interventions we've been able to provide him that my family never had a clue might've helped me.

 

I think Dad's genes come into play, as well. My DS's dad is also prone to anxiety. DS is our own walking, talking Malatov Cocktail!