New with Questions....how long till you saw improvement

[EAMom]

Angela...I don't know where you live, but there is also Dr. Trifiletti (in NJ) who is a pediatric neurologist. He should have almost immediate openings (it's a new practice).

 

Other good east coast docs to consider: Dr. Denis Bouboulis is an immunologist 1 hour from NYC (CT). Dr. Beth Latimer (neurologist) is in DC....lots of folks on this forum use her.

 

Here's a list: http://www.latitudes.org/forums/index.php?showtopic=5023

 

Let us know how Dr. Geller is. I know he is one of Sammy's docs...but I don't think anybody on this forum has seen him! (I heard he trained under my dd's psychiatrist many years ago (we're in Northern CA) at Stanford.)

[Guest Angela Shaw]

Eamom and Buster,

 

I meant to ask. How long did your daughter suffer from PANDAS before diagnosis and treatment?

angela

 

Our dd had a 4 day FEVER (later learned several classmates were sick with strep at the time) in late Jan 08 (age 7.5 years-2nd grade). Over the following 2 mo. she developed emotional lability (lots of tantrums), anxiety (social, separation), she stopped playing with kids at school (she would sit alone at the playground), sensory defensiveness (refused to change her clothes for days), defiance, restrictive eating, depression, OCD (very bossy, things had to be done in a certain way), and tics. Symptoms worsened after 2 tooth extractions (with nitrous, done for orthodontic reasons). By early March 08, she had full-blown anorexia nervosa (distorted body image) with suicidal statements. (Her teacher noticed dd's behavior changes and wondered if she had been molested!) Within a 2 week period she dropped from 50 pounds down to 42 pounds. She would only eat 1 small meal per day. We were pannicked and after calling over 20 doctors (mainly psychiatrists) one finally said "check her for strep". We googled "strep" and "anorexia nervosa" and learned about PANDAS. The next day we were able to hospitalize her (malnutrition, acute food refusal). Once her cultures came back positive (note: her strep titers ASO/antidnase b were low) the hospital agreed to abs. However, it took another 2 mo (when we finally cleared sister of her carrier state) and discovered Azith. (June 08) plus advil, before we saw real significant improvement in OCD/anorexia (after about 10 days). Tics/edginess took another 6 weeks to resolve. She did well for the rest of the summer.

 

We continued on 250mg/Azith/day. Throughout 3rd grade we saw exacerbations/return of PANDAS symptoms with exposure to strep (when family members were culture positive) and with viruses (fifth's dz, H1N1). Fortunately, the symtpoms were not as extreme as what we went through in 2nd grade. We were also seeing that she had a "baseline" change where she wasn't returning back to were she was after each episode. In Aug. 09 (just b-4 starting 4th grade) we finally did IVIG (2gm/kg over 2 days) which has really helped. I would say our dd is as normal as she's ever been...although it's hard to not be paranoid, with each little thing, wondering if that is PANDAS resurfacing!

 

In retrospect, we suspect our dd has had milder PANDAS episodes over the years which went undiagnosed. For example, when she was 4.5 years (pre-school) she had an acute onset of urinary frequency. I thought she had a bladder infection (tested neg). A couple of days later she had a high fever. A week later her sister got very sick with fever/vomiting. So I think they both had strep (they went to the doc, but nobody ever did a strep test on them.) She's also had episodes of anxiety, handwashing, sensory issues.... One issue for us, is that neither of our children had EVER had a strep test until we insisted (after we learned of PANDAS) in March 08. Any fever (even with vomiting) was always presumed to be viral so nobody ever bothered to do a strep test/throat culture on them. For us, our kids don't get a red sore throat with strep...so docs didn't think to ever test them.

 

Wow, you guys have been through the wringer! So glad you stuck around to help the rest of us after your daughter began to do better. Thank you! ~ Angela

[Buster]

In retrospect, we suspect our dd has had milder PANDAS episodes over the years which went undiagnosed. For example, when she was 4.5 years (pre-school) she had an acute onset of urinary frequency. I thought she had a bladder infection (tested neg). A couple of days later she had a high fever. A week later her sister got very sick with fever/vomiting. So I think they both had strep (they went to the doc, but nobody ever did a strep test on them.) She's also had episodes of anxiety, handwashing, sensory issues.... One issue for us, is that neither of our children had EVER had a strep test until we insisted (after we learned of PANDAS) in March 08. Any fever (even with vomiting) was always presumed to be viral so nobody ever bothered to do a strep test/throat culture on them. For us, our kids don't get a red sore throat with strep...so docs didn't think to ever test them.

A couple other oddities, some of the contamination fears did manifest way back when she was 5.5 for 3 weeks. She had a compulsive handwashing episode (red chapped hands) and needed to cover her mouth in the bathroom for fear she'd swallow a fly (perhaps you know the nursery rhyme). At the time we thought this just a "bedtime fear" but going back in my notes she also needed to walk 15 feet behind people for those weeks because she thought she might catch cancer from the neighbor's "grandma". It was just odd but there had been a child's death in our neighborhood so we put it down to, well, childhood anxiety. She did get over it and we didn't think about it.

 

When I look back in the medical logs (which we pulled), she got amoxicillin for a URI after these events and after the amoxicillin the behavior disappeared. Still could be coincidence, but probably these were initial episodes.

 

Minor daytime urinary frequency -- first episode (4.5)

Contamination fears -- second episode (5.5)

Severe OCD and Anorexia Nervosa -- third episode (7.5)

 

 

Buster

[jyl]

Angela Shaw....Have you seen any improvements??? Came across this old post???