Support for Parents of Children with PANDAS - OCD

[rwm4fsu]

Our daughter is 11 and in the 6th grade. After coming down with strep throat in August of this year, she starting showing progressive signs of OCD (repeating steps, not able to go up and down the stairs, unable to cross thresholds) and is now to the point where she can’t go to school, can’t get dress, and has only left the house once this week. This is all very new for our family. It’s chaotic, exhausting, heartbreaking and confusing for the whole family. We googled her symptoms and found a condition called PANDAS. Had never heard of it and found many doctors don’t even believe it’s a thing. Thank goodness her pediatrician did. She was diagnosed and we are starting therapy with the Rothman Center at USF St Pete on Monday. ERP therapy. It’s hard to know what to do in the meantime. We are consider medication, but have always thought that would be a last resort. I’d love to continue a conversation. Have been trying to find a support group specifically for parents of preteens with OCD.

[IStillHaveHope]

I'm sorry to hear that your daughter is not doing well. ERP is definitely the standard when it comes to dealing with OCD.

Medication is definitely something that helped me. I have suffered from OCD since around 7 and only started taking it in my 30's. However, I understand that everyone is different and that taking it is a personal choice.

I'd also say the biggest thing you can do is to support her in this. OCD therapy is usually difficult and having a good support group around her can help. It's also important to remember to not enable her OCD habits. It's common for someone with OCD to rely on a friend and family member to seek reassurance. This can lead to reassurance seeking compulsions.

I don't know if this will help, but I put together a list of things I've learned along my journey. Maybe it will give you and your daughter a little insight into what to expect: healthunlocked.com/my-ocd/p...

OCD is hard but it is possible to live a healthy and fulfilling life with it. Myself and plenty of others on this site are proof of that.

I wish you and your daughter good luck on this journey. God bless you both.

[aparente001]

Have you looked for a support group at the IOCD website?

Caring for a child with OCD or PANDAS can be tough. We want to protect our child from so much suffering, and it's painful not to be able to make the problem go away.

I'd invite you to reconsider medication. It took me a while to find a doctor who could suggest medications for my son. At first, I was working with people who were kind of shooting in the dark, and my son ended up with some scary side effects.

Finally, I found two doctors who coincidentally gave me the exact same suggestions, which turned out to be helpful. Number one, they said that based on the side effects he had had, they recommended Zoloft, as having a lower side effect profile than what we had tried before. Number two, they (independently) explained that adults with severe anxiety are often prescribed something like Ativan, to take as needed. However, they said that with children, by the time the child realizes that the anxiety is spiking, it's too late to take the Ativan and get a helpful response. Therefore, they recommended SCHEDULED Ativan. My son started this around age 11, and at first I think I was cutting the little tablets up into quarter pieces! As he got bigger, we gradually increased it. Later on, we drove a long way and consulted another expert, who suggested replacing the Ativan with Buspar, since the Buspar is apparently less habit-forming.

If you decide to try an SSRI, keep in mind that it's important to ramp up slooowly. Also note that it can take weeks or months to start to see improvement. (Frustrating, I know!)

My personal opinion is that the medications I described are not as risky as medications commonly used for ADHD.

It could be helpful for you to do some reading up on side effects. For example, when you start an SSRI, it's important to be watching for suicidal ideation.

Have you set up homebound instruction with your school district?

Here is a Catalog of Accommodations which I found very helpful: dollars4ticscholars.org/wp-...

COPAA and Wrightslaw have lists of advocates in different states. It can be very helpful to work with someone who has experience advocating for OCD/PANDAS.

Please don't hesitate to respond to my comment. I will get a notification.

[rwm4fsu in reply to aparente001]

Your response to my post was timely. We were able to get an intake/telehealth appointment with a pediatric psychiatrist today! We started this journey about a month ago and with persistence (sometimes to the point of me being super annoying) we have found a child psychologist who specializes in OCD/PANDAS and now this psychiatrist. You definitely have to be a 'mama bear' type advocate for you child when you are dealing with OCD.

I've done some research on SSRIs, and am hoping the doctor today has a conservative approach. Zoloft seems like the best way to start (like you said)...it must be the mildest SSRI because it is FDA approved for ages 6 and up. Prozac and Luvox are for ages 8 and up. Lexapro is for ages 12 and up. We would avoid anything approved for 18 and up (Paxil or Celexa), even though some websites suggest it can be used for children with anxiety.

I was hoping SSRIs were magic pills, but it looks like we will have to be patient.

Our daughter has been out of school for two weeks and is now on a medical leave. She attends a private school. Our hope is for her to return after the Thanksgiving break, but the more realistic return date is probably Jan 2023.

How old is your child and when were they diagnosed?