PANDAS in Long Beach, CA

[martyf]

My 13 year old son Nicholas has been diagnosed with severe OCD possibly caused by PANDAS. I initially found out about PANDAS at a Psychiatrist's office. He asked my wife and I if our son had Strep throat recently. It was June 2015 but we mentioned that he had a very bad sore throat in December 2014. We said maybe. The doctor told us that in certain circumstances, Strep could lead to PANDAS caused OCD. Possible we thought but he needed to get us contact info so then he put our son on Lexapro (2.5 mg to start and then slowly bumped up to 15 mg). It became intolerable to him after about 6 weeks of build-up.

 

In the meantime, we received the contact info for PANDAS research at UCLA. We contacted them and they helped get our primary physician to test for Strep A. The test came back positive and we started a 10 day Amoxicillin routine (10 ml of 250 mg, twice a day) as directed by UCLA.Thus began an eventful 10 days.

 

We noticed a slightly better attitude for the first 2-3 days but then we hit the ER on the 6th day. My wife took him there after acting very erratic. They wanted to put him into a psych ward for 72 hours under the 5150 rule because he mentioned wanting to die. The psych ward is not where he wanted to go nor did we think it was in his best interest at this time. However, because in California, a non-psych hospital has the right to try to find someone to evaluate him and keep him in the hospital for 24 hours. If they don't get a psych evaluation in 24 hours, he is free to go. But if they find someone, chances are very good they will take and hold him.The OCD/PANDAS are very strong forces but we kept him under watch and his thoughts of hurting himself receded within a short time. Before going to ER, make sure you give enough time for the spells to subside, if they do not, head there ASAP.

 

One more dose of antibiotics and then switching to a new SSRI (Zoloft) shoudl help things. We will also start a prophylactic antibiotic and get tested again for Strep in a month.

 

We are having ups and downs like many of you are enduring or have endured. We try to keep things calm but he particularly wants my wife and I to be part of his rituals no matter how long or strange they can be. And sometimes standing painfully for 20-25 minutes without rest does not help things. We get angry, he gets angrier and louder with lots of profanity thrown in for good measure. I know he loves us but it is hard, really, really hard at times.

 

Anyone in Long Beach or Los Angeles area with good results for getting through this and coming out the other side whole again, please let me know.

 

Cheers!

 

[MaryAW]

2 quick thoughts. I'm not sure that Amoxicillin is the best choice for PANS. Most kids use Azythromycin or Augmentin. 2nd is that you should not participate in OCD rituals - a BIG mistake. You have a long road ahead of you and a lot of reading to do. A good place to start is this website started by the top PANS doctors in the US. It will help educate you:

 

https://www.pandasppn.org/

 

2 excellent books to understand OCD. The first for you, the second for your child:

 

http://smile.amazon.com/Freeing-Your-Child-Obsessive-Compulsive-Disorder/dp/0812931173/ref=sr_1_1?ie=UTF8&qid=1442091146&sr=8-1&keywords=children+ocd+chansky

 

http://smile.amazon.com/What-When-Brain-Stuck-What-/dp/1591478057/ref=sr_1_1?ie=UTF8&qid=1442091089&sr=8-1&keywords=children+ocd

 

During a flare Ibuprofen can help. I give my DD 2 doses a day. You should consult with your pediatrician before doing this. Make sure you check his Vitamin D level and get it up to between 50 - 80 (recommended by most PANS/PANDAS docs). My DD takes Azythromycin and we have had great luck with that. I give her 2 doses of probiotics a day - Florastor and Culturelle (not within 2 hours of ABX is best). Also, Omega 3s are very helpful with PANS children. We use Nordic Natural Ultimate Omega Juniors. Good luck.

[martyf]

Thanks Mary,

 

You have given us much to chew on. He just received a shot of penicillin but will contact the pediatrician about using one of the other antibiotics too. Will check Vitamin D level. We are doing the following probiotics and other vitamins:

 

Biotics:

Ortho Molecular Products - Ortho Biotic 1 per day

Trader Joes - Acidophilus 1 per day but looking at bottle, very weak compared to other

Also taking:

Ortho Molecular Products -Mitocore

Ortho Molecular Products -Olive Leaf Extract

Ortho Molecular Products -InflammaCORE banana shake

Will have him take Omega 3 too. I will look for the other probiotics you mentioned and try to get the books. I appreciate all your help.

PS A shout out to Holly too for contacting me personally and letting me know we are not alone.

 

Michael

[MaryAW]

You have one of the best resources for PANS/PANDAS right in California at Stanford. I would recommend getting on their waiting list. They actually have a PANS clinic. Top, Top doctors.

 

http://www.stanfordchildrens.org/en/service/pans-pandas

[martyf]

Thanks. I will check them out if all the other things I am trying do not work out.

[MaryAW]

Just call and get on the waiting list; you can always cancel. We traveled from CT to Florida to see a top PANS doctor. Well worth it. Having a knowledgeable doc is key to healing.

[sarojane]

For use Garden of Life Resveratrol (Japanese Knotweed ) or blue bird silver hemp cbd oil will all but stop a flare in about 20 minutes.