I thought we were done

[cwmom]

Hello to all,

 

It has been a long time since I have posted on this site. My son had an extreme case of PANDAS in the summer of 08.

He recovered completely (on prophylactic abx/tonsillectomy) ( Except for episode of tics when he had influenza A last winter)

 

September 2010-

Sudden onset obsessive thoughts/anxiety/ HUGE DILATED PUPILS just wasn't himself- we knew right away, but this time strep/ASO/AntiDNAse B all normal.

last time he had classic rise in ASO...

 

He had a virus trigger this episode (sore throat /diarrhea..) The problem has been that no one in the medical community wants to treat him. Neurology

wants him to see psychiatry, Rheumatology "has nothing to offer" since IVIG denied. Our poor PCP is trying.

IVIG was rx'd but our insurance denied x2. We were offered SSRIs and Klonopin and we used it- had to had no other options.

 

It has been about 10 weeks and I think he is turning the corner (sense of humor coming back) he was able to go to school throughout and

maintain friendships.... but grades have plummeted. His teachers are very kind but I am sure they do not know what to do with this type

of learning issue. On low dose SSRI off klonopin. I will continue the SSRI because perhaps it is helping- It is certainly not hurting him at this point.

 

 

It is funny after we went through this in 08 I promised him and myself that we would never be in medical limbo again and yet here we are

[monarchcat]

I'm sorry you are going through this. It must be so disheartening to see it come back after thinking you were in the clear....

 

Here's what I would suggest, in a nutshell. I see you are in Boston. I am near Boston as well. Both my kids have PANDAS and we see Dr. Bouboulis in Connecticut. It's about a 3 1/2 hour drive, but well worth it. Make an appointment and go see him. He can order the correct tests, prescribe antibiotics, and order IVIG if necessary. Boston is such a great hub of medical expertise... but not for PANDAS. At least not yet.

 

If you haven't been reading this board for year or so, you may not know about Dr. B yet, but he and a few others have emerged as the top PANDAS docs in the country. It's worth the travel to be in the hands of someone who knows this disease well.

 

Has your son been on prophylactic antibiotics the whole time since his episode in 2008? If not, is he on abx now for this episode? Which one and what dose?

 

Good luck, and again, I'm so sorry you are dealing with PANDAS again....

[cwmom]

Thanks so much,

 

We actually have an appt with Dr. L in MD -

I will post after we see her -

[thereishope]

I am so sorry. It really saddens me to hear this. It's just proof our kids are never truly safe

 

Were you able to get a rx for antibiotics even though everything was negative? Soem kids can have strep even w/o a rise in titers regardless of what you have experienced in the past.

 

Did you test family members for strep? When is your appt?

[Megs_Mom]

Hi - I am so sorry. We also find that untreated episodes begin to wane around week 12-14 if we don't have a second exposure. It is my personal terror that it would ever come back. We also had a 3 year gap between episodes, and she was not on preventative abx during that time.

 

I think the recommendation to go to one of the top PANDAS docs and get a plan established for the future is right on. It takes so long to get appointments, and local docs are often so uneducated, that I know how very easy it is for 10 weeks to fly by with no help or support. That just breaks my heart for both of you.

 

On a practical level, we learned that cytokines are lowest in the afternoon & evening. So before we did homework in an exacerbation, we'd give a dose of Motrin right after school, then take a 30 minute break. After 30 minutes, she was able to concentrate and process what she was doing much better.

 

We have found that having ERP therapy as a tool to manage during an exacerbation is a positive. It's hard to learn unless you have some residual OCD, so this might be a good time to have him learn the tools so that he has that training should this (God forbid) happen again. Also, I would suggest that you consider some sort of counseling for yourself, when you have time. This is such an awful disease, and it is so random on when it attacks, that it leaves many of us with a constant feeling of panic, fear or failure. This is horribly unfair, as the parents fighting this disease are on the forefront of a breakthough in fighting mental illness - we are the leaders for the future. But it's really hard to feel that way when your child is in pain or torment. So finding some support for yourself can be critical - grief counseling is a good option. Personally, I found that I needed support for both the decisions I was having to make, often against medical advice, and for the terror I was living everyday in our home.

[cwmom]

Hi - I am so sorry. We also find that untreated episodes begin to wane around week 12-14 if we don't have a second exposure. It is my personal terror that it would ever come back. We also had a 3 year gap between episodes, and she was not on preventative abx during that time.

 

I think the recommendation to go to one of the top PANDAS docs and get a plan established for the future is right on. It takes so long to get appointments, and local docs are often so uneducated, that I know how very easy it is for 10 weeks to fly by with no help or support. That just breaks my heart for both of you.

 

On a practical level, we learned that cytokines are lowest in the afternoon & evening. So before we did homework in an exacerbation, we'd give a dose of Motrin right after school, then take a 30 minute break. After 30 minutes, she was able to concentrate and process what she was doing much better.

 

We have found that having ERP therapy as a tool to manage during an exacerbation is a positive. It's hard to learn unless you have some residual OCD, so this might be a good time to have him learn the tools so that he has that training should this (God forbid) happen again. Also, I would suggest that you consider some sort of counseling for yourself, when you have time. This is such an awful disease, and it is so random on when it attacks, that it leaves many of us with a constant feeling of panic, fear or failure. This is horribly unfair, as the parents fighting this disease are on the forefront of a breakthough in fighting mental illness - we are the leaders for the future. But it's really hard to feel that way when your child is in pain or torment. So finding some support for yourself can be critical - grief counseling is a good option. Personally, I found that I needed support for both the decisions I was having to make, often against medical advice, and for the terror I was living everyday in our home.