Possible trend?

[Guest guest]

Hi:

I joined this group apprx 6-7 wks ago when my daughter had an overnight onset of

OCD which was so severe it required that she be admitted to a partial

hospitalization program 5 dys per wk. She was put on Fluvoxamine and Risperdal

and has done better but the child I knew prior to this onset hasn't been seen in

weeks. It's heartbreaking for any parent to watch your child suffer like this.

After reading all of these posts I had her pediatrician run blood tests and sure

enough tested positive for Lyme AND had an elevated ASO. The

pediatrician was not aware of PANDAS and still doesn't believe there is a

connection. Honestly, I could care less what she believes. No connection? I

highly doubt that.

Anyway, we started with the outpatient psychiatrist this week and she actually

has 2 patients from the same area who also exhibit signs of PANDAS and she

immediately knew what I was talking about - thank GOD!

I live in the Milford PA area and am curious to know what area in PA were you

referring to? Is there anyone else on here from this area?

We are now three weeks into our antibiotic therapy and we are praying daily for

a miracle. So far, minimal changes but I haven't lost hope yet-

De

p.s. Thanks everyone for responding to my recent posts. It's been a bit crazy

here and I haven't had a chance to thank you but this info I have gotten from

this sight has helped me to stay sane- You can talk to other parents but if

their child hasn't gone through this they just don't understand the agony for

all of us. If one more person tells me " you just need to be a little more firm

with her " - seriously, I'll lose my mind. If only it were that simple....

[Guest guest]

I don't know the specific area of PA that the doctor was referring to, but it

wasn't a recent thing. It was an anecdotal story of how PANDAS can sometimes

appear in " pockets " which suggests that a particular strain if strep might be

responsible when an unusual concentration of cases appears. It wasn't about a

recent outbreak.

It took 7 weeks for my son's worst episode to resolve. Hang in there. It may be

time to look for a new pediatrician. This kind of refusal to consider a medical

cause drives me mad. Sounds like you are asking the right questions. Don't be

dissuaded.

[Guest guest]

Hi, De. Unfortunately that is a common comment, " we just need to be a

little more firm with them " , from people who just don't get it. I heard that

for years, from family. To me, the insinuation was that our son was a brat and

I was a bad mother. It can be very hurtful. They had no idea the chaotic life

we were living, as OCD controlled us all, despite me trying to explain it to

them, while also not really knowing what to do about it. (Hadn't found adequate

help or helpful information at that point yet). I finally gave up and just kept

it to myself.

Typical parenting techniques just made things worse. Any kind of discipline,

even just mentioning he had done something wrong, made him meltdown as he would

drastically and dramatically overreact, saying he hated himself for whatever

infraction I was trying to correct him for. He was so overly sensitive that

everything set him off. Going with my instincts, which was to reassure and try

to reason with him concerning fears and concerns, just made it worse too.

I will join you in saying a prayer for a miracle as you seek answers and

treatment for your daughter. Sorting it out and finding the things that work

for you can be complicated. I hope you see some improvement soon.

I agree, watching your child suffer like that is like having your heart ripped

out. Hang on to hope. It will save your sanity.

Glad you are here, De.

BJ

>

> Hi:

>

> I joined this group apprx 6-7 wks ago when my daughter had an overnight onset

of OCD which was so severe it required that she be admitted to a partial

hospitalization program 5 dys per wk. She was put on Fluvoxamine and Risperdal

and has done better but the child I knew prior to this onset hasn't been seen in

weeks. It's heartbreaking for any parent to watch your child suffer like this.

>

> After reading all of these posts I had her pediatrician run blood tests and

sure enough tested positive for Lyme AND had an elevated ASO. The

pediatrician was not aware of PANDAS and still doesn't believe there is a

connection. Honestly, I could care less what she believes. No connection? I

highly doubt that.

>

> Anyway, we started with the outpatient psychiatrist this week and she actually

has 2 patients from the same area who also exhibit signs of PANDAS and she

immediately knew what I was talking about - thank GOD!

>

> I live in the Milford PA area and am curious to know what area in PA were you

referring to? Is there anyone else on here from this area?

>

> We are now three weeks into our antibiotic therapy and we are praying daily

for a miracle. So far, minimal changes but I haven't lost hope yet-

>

> De

>

> p.s. Thanks everyone for responding to my recent posts. It's been a bit

crazy here and I haven't had a chance to thank you but this info I have gotten

from this sight has helped me to stay sane- You can talk to other parents but

if their child hasn't gone through this they just don't understand the agony for

all of us. If one more person tells me " you just need to be a little more firm

with her " - seriously, I'll lose my mind. If only it were that simple....

>

[Guest guest]

Thanks BJ! Nice to know somebody understands...

dm

> >

> > Hi:

> >

> > I joined this group apprx 6-7 wks ago when my daughter had an overnight

onset of OCD which was so severe it required that she be admitted to a partial

hospitalization program 5 dys per wk. She was put on Fluvoxamine and Risperdal

and has done better but the child I knew prior to this onset hasn't been seen in

weeks. It's heartbreaking for any parent to watch your child suffer like this.

> >

> > After reading all of these posts I had her pediatrician run blood tests and

sure enough tested positive for Lyme AND had an elevated ASO. The

pediatrician was not aware of PANDAS and still doesn't believe there is a

connection. Honestly, I could care less what she believes. No connection? I

highly doubt that.

> >

> > Anyway, we started with the outpatient psychiatrist this week and she

actually has 2 patients from the same area who also exhibit signs of PANDAS and

she immediately knew what I was talking about - thank GOD!

> >

> > I live in the Milford PA area and am curious to know what area in PA were

you referring to? Is there anyone else on here from this area?

> >

> > We are now three weeks into our antibiotic therapy and we are praying daily

for a miracle. So far, minimal changes but I haven't lost hope yet-

> >

> > De

> >

> > p.s. Thanks everyone for responding to my recent posts. It's been a bit

crazy here and I haven't had a chance to thank you but this info I have gotten

from this sight has helped me to stay sane- You can talk to other parents but

if their child hasn't gone through this they just don't understand the agony for

all of us. If one more person tells me " you just need to be a little more firm

with her " - seriously, I'll lose my mind. If only it were that simple....

> >

>