Re: Help, 11 year old is resisting ERP - PANDAS OCD story

[Guest guest]

I am not sure that there is a typical onset for PANDAS – I find it to be a

complex mystery, one that has made me question myself and her caregivers many

times. I read about other PANDAS children, and despite our personal pain, I felt

that their stories were worse. I was not sure that I recognized our story in

theirs. I cannot tell you what your child's story might look like – as I wonder

how many more stories are out there. You may like to read Saving Sammy, that

will be out September 22nd. I'll share here, with apologies for the long post –

but I think that the more pure OCD side of PANDAS is often overlooked.

Meg is now 8 years old. She has no tics. Our first onset was overnight. No

sign of illness. She started washing her hands so often at the end of Feb 2003,

age 3.5, that her hands were raw and cracked. She could not let me out of her

sight, even to be with her dad, we pulled her out of preschool, as she could not

eat for fear of choking. She would no longer touch other children or play on the

playground for fear of germs. It was a terrifying experience, and we could find

no one to help us. Everyone said she was too young for OCD, and I could not

believe she had developed such intense issues in the space of 5 days. My

husband and I were considering quitting our jobs, as we were sure she would need

constant care & supervision. We were devastated. I googled " sudden onset

childhood OCD " , and found PANDAS. Her pediatrician had never heard about it.

About the same time, she had a severe ear infection, and was given Zithromax.

We found out about ERP therapy from a book by Aureen Wagner, and starting doing

this immediately with her, for hours a day. This episode resolved 100% within

about 4 weeks. Later, we found a developmental doc who said " maybe PANDAS,

bring her back if she changes again " .

She had zero issues for the next 3 years. We moved, she changed schools; she

went to kindergarten and activities. Then one day, everything changed again.

This time she was not so clearly (to anyone else) OCD. She again, in the space

of a day, developed severe separation anxiety, fear of throwing up, and threw

major temper tantrums (new behavior) if we tried to take her out for a meal in

her favorite restaurants (her best friend was diagnosed with strep, Meg was not.

She needed reassurance that she would not throw up, 24/7. She was rushing to

the restroom to pee all the time. She would not go to a pool party for the end

of year at school. It felt identical to 3 years ago, but no hand washing and no

germ fears. Took her back to development doc, who said this was not OCD, she

had GAD. I begged him to consider PANDAS, as she did not have any issues the

week before. He pretty much acted like I was nuts. We thought it would go away

on it's own like before & did not do a lot. After about 5 weeks, we then went

to another doc, who said Panic Disorder & Agoraphobia. Treat with ERP and

consider meds. We again went into intense ERP mode. She again had an ear

infection, which was treated with Omnicef. It took another 6 weeks, and then

Meg was back to 98%. We still saw an occasional issue – about 1 panic attack a

month, but very mild.

About 9 months later, the next time built more slowly, over 2 months. This time

is seemed like more traditional OCD, we went to a doctor that in retrospect

should never have worked with her, got worse, went to Duke for real ERP and saw

immediate improvement. Then suddenly, in the middle of treatment she went from

a low level OCD back up to a 10, in literally a day. Severe rituals, panic,

spitting, severe separation anxiety, germs, hand washing, reassurance etc. We

felt lucky that we were already in ERP, even her therapist was surprised by the

sudden intensity, given the hard work she was doing. Again, her best friend had

strep, but no signs in Meg. We left for beach & worked hard. We were seeing

some improvement, but were still at about an 8, 3 weeks later, when Meg got

severe Poison Ivy, eyes swollen shut. She was given Prednisone. Thanks to

PANDAS moms, I knew about the Prednisone Burst Test for PANDAS. I told my

husband to watch her independently. Within 2 days, Meg was massively improved –

about a 2 on the scale. My husband is a big skeptic – but by day 3, he was

asking me what happened. Meg went off steroids on day 5, and by day 8, the

fears were flooding back in. We found a neurologist who heard her story &

examined her – she has hand tremors that I had never noticed, like she was

playing piano in the air when eyes closed – very mild. On basis of this and her

clinial presentation, he prescribed antibiotics. I did not start these, as we

wanted to do a test through U of Oklahoma with Dr. Cunningham & had to wait a

few weeks. Meg continued to improve to about 80% of herself. When we gave her

the antibiotics, it was like a veil was lifted – the bad thoughts that were such

an issue were subdued to the point where she could suddenly do very hard ERP

therapies without a big deal. She is at 95% today, after 3 weeks of

antibiotics (Zitromyacin). We continue to work hard on the ERP to get rid of as

much as possible.

I will tell you that the last few days, I have been so happy just watching her,

that I have cried multiple times. I pray that research for PANDAS will rapidly

escalate, now that the Mice Study has been published to reinforce Swedo. I wish

that parents knew a protocol to use to test their children for PANDAS, and to

tell them what steps to take. The huge issue is the way PANDAS, like Lupus,

appears to be an autoimmune disease that mimics other diseases. Some parents

see Cognitive Fog, ADHD, Tourettes, OCD. How 's son can freeze, have

severe TS – and my daughter can have severe OCD – and still have the same

disease – is baffling. It is what causes much of the controversy.

I would beg researchers to figure this one out – I worry a lot about how many

children are suffering, or receiving the wrong treatment. I worry about how

many practioners are telling parents the wrong info. I was told multiple times,

very bad info about how PANDAS is defined clinically. If Meg had not gotten

poison ivy…. I don't know why the presentation for Meg was over the first time

in about 4 weeks – and the second time, took almost 3 months. And the 3rd time,

has been almost 6 months. But I will tell you that we struggle every day to

understand this disease and to make very difficult decisions about her care. I

will treat the next episode, which we dread, very differently than the last 3.

We will do immediate steroids for at least 10 days, and then move to antibiotics

again. I hate these choices. We are against casual antibiotic use, and I never

thought I'd allow her to have steroid treatment, even for a short time. I have

met with doctors at Chapel Hill, Duke and Yale, in order to make sure we were

making the right decisions. We continue to search and are meeting with another

Neurologist that specialized in PANDAS in town. We have never faltered

for one day, in providing her ERP therapy, as her form of PANDAS is nearly

indistinguishable from OCD, and I feel that there is more OCD " leftover " each

time. I will tell you that there are still no clear cut answers. But in many

ways, it is also what we see in traditional research for OCD meds as well – we

are not entirely sure why they work, or which one is best for which child.

There is still much mystery about this entire spectrum, and I regret that as

parents, we find ourselves largely alone in making the decisions. There is no

testing for traditional OCD meds on PANDAS children – and the hypothesis is that

if caught early, they may not be needed.

I know this post is crazy long, and I am sorry! It will be gone from the list

in a few days – but the questions that we have as parents will persist, until

this disease is better defined and doctors are educated in how to give our

children's minds the same level of care that they give their bodies. I am

happy to answer more questions, but I will warn you that I am the blind leading

the blind. I can help with ERP suggestions, but I owe so much to PANDAS parents

that taught me more than any doctor – and have helped me do the best for my

daughter. We have a blog that we have maintained for a while now –

www.joyforanna.blogspot.org – if you would like to read more about the journey

we have taken from PANDAS, to Panic, to OCD and back to PANDAS again.

in NC