PANDAS, strep, toothrushes

[Guest guest]

Hi Corinna!

Wow! Thankfully for us, this seems like a daily topic of our past.

My daughter, had 2 full years of basically chronic tonsilitis--at

least 11 -12 sepearate episodes of tonsilitis--more than half of

which were positive for strep. She has not been confirmed as having

PANDAS, but in my mind, yes. Sometimes, she'd just finish

antibiotics and present with symptoms again 2 days later. I felt as

if we were constantly at the doctors. On top of that, her younger

sister was sometimes found positive with few/no complaints. We were

joking at urgent care one night and I said to her (while my older

daugher waited for yet another culture) " Let's play doctor, open

wide. " To my surprise she had some redness, and I'd request a

culture, despite her lack of complaints. It almost was easier to

utilize evening " urgent care appointments " as I knew it would be

different nurses taking the call and pedi's seeing them. ON the

one hand, I wanted her pedi to really see her each time, but I

started to think they'd think I had Munchenhauser's (sp?), where the

parent creates/wants illness. BUT, I just kept throwing articles

their way and persisted. My daughter hated if I tried to verbally

fill in the urgent care pedi or nurse with OCD/anxiety details. I

also tried to avoid point blank telling my dd that I was certain the

tonsilitis made the anxiety/OCD symptoms worse, as she didn't need

to add " tonislitis " to her list of obsessive fears/issues (as

vomiting and food contamination were #1).

I also got lucky with our wonderful school system--I can't say

enough how wonderful they've been (teachers, principal, guidance

couselor, and nurse)! Our school actually had some rapid throat

culture kits (mostly for families who neglect to get their kids to

the doctors). Our pedi's office only used/accepted full 48 h r.

cultures, but how nice to sometimes say, " School nurse called, did a

rapid, which was pos. When can she be seen? " She'd even give us the

stick --which looks like a home pregnancy test kit stick--to take

with us. :-0

RE the toothbrushes, I think are important. I went overboard, I'm

sure, making sure her sister's brush did not touch hers at all.

Also, at what point do you switch the brushes, I used to ask. It

seems that after being on the antibiotic at least 24 hours before

switching was recommended. Of course, we'd been liking the electric

Oral B brushes. I started to carry cheap ones to have her use day 1

and or 2 of symptoms, giving antibiotics a chance, before using new

electric.

My daughter had her tonils removed in March 2004-------NO STREP, NO

TONISLITIS since! She certainly is not cured of or free from her

OCD, but any symptoms present are so manageable. We've had no

servere agitation or symptoms interfering with April-June attendance

or summer fun! (This past year, she missed 60 days of school btw.

tonsilitis, the tonsilectomy and recovery, and plain old anxiety OCD

symptoms/shcool refusal.) As Sept. 1 draws near, I am bracing

myself and hoping not to be let down and hoping for an even smoother

year--especially with those darn tonsils GONE!

MY advice--keep persisting whenever you suspect tonsilis. Discuss

a plan ahead with your child's doctor about the importance of anyone

in the family with symptoms or possible strep, getting an immediate

culture--no questions asked. Some folks even recommend asking the

school nurse to inform them if a classmate of their child has

strep. Have you also been to Braintalk Communities--the MA Gen.

Hosp (MGH) support group, once on look up rare disorders, PANDAS. I

believe the disorders are alphabettically arranged. The newest

version of this support group has the words " hasty pasty " in it. If

you click from a google search on the old one-- " neuro mancer " is

somewhere in the site address, you can search archive files. One of

those I posted long ago, includes and refers to " Flow Chart. " This

was great for sharing with pedi and school nurse! It listed the

protocol re blood work titre testing periodically, etc.

Well, it's been awhile since I've posted or been on the PANDAS

site. Best to you all!

Sue

[Guest guest]

My daughter has recently started showing signs again of OCD and

tics. She is 6 now and started showing signs at 4 or 5, really full

blown bad thought ocd at 5. The bad thought ocd went away with some

coaching and counseling and most other signs of ocd also went away.

Now that school is starting back - I know it's a most stressful time

for kids -- the tics and ocd are coming on strong. At least it seems

strong to me. My daughter seems to gyrate(sp?) when she's going to

sleep. She shakes her arms and legs and hops a lot now, all of which

seem to cause her great discomfort and agitation. She's worried

about other kids noticing it now that she's starting first grade in a

new school.

Anyway, the reason I'm posting is that my daughter has all of a

sudden started asking questions about her tonsils -- what they're

for, why they're there, do people get them removed, etc.. She has

never had throat problems but has always had ear infections. I

thought maybe PANDAS was the cause of her first episode because it

came on so sudden. I read lots of books on ocd. There was another

flare up not too long ago when she was showing signs of ocd bothering

her -- it was during an ear infection. They did a preliminary strep

test that was negative but not a 24 hour test. I wondered then.

Now that she's mentioning her tonsils all the time.... It makes me

wonder. Maybe I'm grabbing at straws. I know staring school,

especially a new school, is stressful.

Any thoughts would be appreciated.

Mark

> Hi Corinna!

>

> Wow! Thankfully for us, this seems like a daily topic of our

past.

> My daughter, had 2 full years of basically chronic tonsilitis--at

> least 11 -12 sepearate episodes of tonsilitis--more than half of

> which were positive for strep. She has not been confirmed as

having

> PANDAS, but in my mind, yes. Sometimes, she'd just finish

> antibiotics and present with symptoms again 2 days later. I felt

as

> if we were constantly at the doctors. On top of that, her younger

> sister was sometimes found positive with few/no complaints. We

were

> joking at urgent care one night and I said to her (while my older

> daugher waited for yet another culture) " Let's play doctor, open

> wide. " To my surprise she had some redness, and I'd request a

> culture, despite her lack of complaints. It almost was easier to

> utilize evening " urgent care appointments " as I knew it would be

> different nurses taking the call and pedi's seeing them. ON the

> one hand, I wanted her pedi to really see her each time, but I

> started to think they'd think I had Munchenhauser's (sp?), where

the

> parent creates/wants illness. BUT, I just kept throwing articles

> their way and persisted. My daughter hated if I tried to verbally

> fill in the urgent care pedi or nurse with OCD/anxiety details. I

> also tried to avoid point blank telling my dd that I was certain

the

> tonsilitis made the anxiety/OCD symptoms worse, as she didn't need

> to add " tonislitis " to her list of obsessive fears/issues (as

> vomiting and food contamination were #1).

>

> I also got lucky with our wonderful school system--I can't say

> enough how wonderful they've been (teachers, principal, guidance

> couselor, and nurse)! Our school actually had some rapid throat

> culture kits (mostly for families who neglect to get their kids to

> the doctors). Our pedi's office only used/accepted full 48 h r.

> cultures, but how nice to sometimes say, " School nurse called, did

a

> rapid, which was pos. When can she be seen? " She'd even give us

the

> stick --which looks like a home pregnancy test kit stick--to take

> with us. :-0

>

> RE the toothbrushes, I think are important. I went overboard, I'm

> sure, making sure her sister's brush did not touch hers at all.

> Also, at what point do you switch the brushes, I used to ask. It

> seems that after being on the antibiotic at least 24 hours before

> switching was recommended. Of course, we'd been liking the

electric

> Oral B brushes. I started to carry cheap ones to have her use day

1

> and or 2 of symptoms, giving antibiotics a chance, before using new

> electric.

>

> My daughter had her tonils removed in March 2004-------NO STREP, NO

> TONISLITIS since! She certainly is not cured of or free from her

> OCD, but any symptoms present are so manageable. We've had no

> servere agitation or symptoms interfering with April-June

attendance

> or summer fun! (This past year, she missed 60 days of school btw.

> tonsilitis, the tonsilectomy and recovery, and plain old anxiety

OCD

> symptoms/shcool refusal.) As Sept. 1 draws near, I am bracing

> myself and hoping not to be let down and hoping for an even

smoother

> year--especially with those darn tonsils GONE!

>

> MY advice--keep persisting whenever you suspect tonsilis. Discuss

> a plan ahead with your child's doctor about the importance of

anyone

> in the family with symptoms or possible strep, getting an immediate

> culture--no questions asked. Some folks even recommend asking the

> school nurse to inform them if a classmate of their child has

> strep. Have you also been to Braintalk Communities--the MA Gen.

> Hosp (MGH) support group, once on look up rare disorders, PANDAS.

I

> believe the disorders are alphabettically arranged. The newest

> version of this support group has the words " hasty pasty " in it.

If

> you click from a google search on the old one-- " neuro mancer " is

> somewhere in the site address, you can search archive files. One

of

> those I posted long ago, includes and refers to " Flow Chart. " This

> was great for sharing with pedi and school nurse! It listed the

> protocol re blood work titre testing periodically, etc.

>

> Well, it's been awhile since I've posted or been on the PANDAS

> site. Best to you all!

>

> Sue

[Guest guest]

Mark,

I am all so new at this myself. I can look back and identify OCD/PANDAS

symptoms since my son was 5 too, but he wasn't diagnosed until this last year,

when he was 10. He is now 11 and this is our first full-blown flare up since he

was diagnosed. My doctor became very suspicious about PANDAS, because Garrett

would have months and months where his OCD was completely manageable, almost

unnoticeable. Then suddenly, he would have these major flare ups. His OCD

would become so severe that it would make him miserable. He wasn't functioning

at school, and he wasn't playing with friends. His mind was completely

occupied by OCD bad thoughts. The doctor began looking back in her files and

noticed that Garrett had a trend of strep throat. She sent us to have some

blood

work done. In the blood work they check to see the level of the strep titers or

strep antibiodies. My son's were excessively high. That is how our diagnosis

began last summer. Once again this summer, his OCD has flared up and his

strep titers are well above normal ranges.

I'm not sure any of this has helped you. From my understanding, all OCD kids

have ups and downs with their symptoms. As I've read posts on this site, I

believe even nonPANDAS kids, can have an increase in their OCD symptoms during

an illness. I read that with PANDAS it can almost be an overnight change.

One day the child's OCD can seem manageable and then the next day their OCD

symptoms are through the roof, almost debilitating. That is definitely the case

for my son. If you suspect the possibility of PANDAS with your daughter, I

would highly recommend that you speak to her doctor about it. I don't know if

any of this helped, let me know if you have any other questions.

Good luck,

Corinna, TX

[Guest guest]

Just my opinion, but I've noted 's OCD waxes a bit with just a

fever. So I think any infection in the body, with or without fever,

can tend to aggravate OCD for some.

I've always wondered about PANDAS for as his severity was

sudden, although he'd always had a " bit " of OCD that was just minor,

as many people do.

His OCD did get really bad a while ago when he did get strep, stayed

worse for months (mostly bad during fever), but he's not prone to

catching strep.

> My daughter has recently started showing signs again of OCD and

> tics. She is 6 now and started showing signs at 4 or 5, really

full

> blown bad thought ocd at 5. The bad thought ocd went away with

some

> coaching and counseling and most other signs of ocd also went