Long term antibiotics only or plasmapheresis?

[Mother_M]

I am a swedish mother of a 6 y old daughter who has had pandas for two years now. She was really ill with about all the symptoms but thanks to her doctor we got antibiotics immediately and she got well in a couple of days. Now to my dilemma: If we miss to give her antibiotics for just one day, she is ill again within two-three days. I feel that the pandas is just "on hold".

 

There is no proven strep but she had an infection with high fever about a week before she got pandas.

 

Now we are talking with her doctor about plasmapheresis but I am really unsure what to do. While on antibiotics she is symptom free except small relapses when she get a cold or another infection. But on the other hand she is ill when out of antibiotics, although she is not that ill as when the pandas onset.

 

Please give me your thoughts and your recovery stories with either antibiotics or plasmapheresis.

 

 

[qannie47]

Hi Swedish mom, welcome to our forum. Antibiotics: They do 3 different things. The obvious is that they ward off infection. They are an anti-inflammatory. They shut down the immune system so it does not create "misguided" antibodies.

 

I suspect that when you miss a day, it is the anti-inflammatory effect that your child is missing. Seems like that is the pattern. To a certain extent, you are right, Pandas is on "hold". Until your child's system is truly recovered, the "wax/waning" will be a part of all your lives. It is often a long road. Know that what you are experiencing is typical, not a sign that you are on the wrong road.

 

I recently supplement with New Chapter, Turmeric Force. 1 a day. Because the inflammatory process is such a big part of this disorder in causing symptoms, the supplement has worked wonders for my child. I encourage you to try it. Be careful about brand you choose, not all are the same. Douglas Labs also has a good one. Optimized Curcumin. Given daily, you might find it is enough to hold "symptoms" in check when you miss a day of abx. Each child is unique though...

 

My child received IVIG. Plasmapheresis is more involved, and considered the "golden Cadillac" when using these kind of approaches. For my child, IVIG worked extremely well. Again, each child is unique. Remember, treating Pandas often takes a multi-layered approach. Each step brings something important to the table.

 

Best of luck.

[Mother_M]

Thank you so much for your answer. I guess I wonder if the pattern of recovery is the same even after IVIG or plasmapheresis. You say IVIG worked extremely well with your child, does that mean your child does not have flares anymore? Do you still give antibiotics?

[EAMom]

what antibiotic is she on? what dose? is she on antibiotics long term?

 

some children can do quite well with just antibiotics, but you have to do a high enough dose of the right antibiotic

 

if you do plasmapheresis, you will still need antibiotics afterwards to prevent future infections

 

here are some notes from the recent CA symposium:

Treatment:
"mild"-antibiotics

"can't get out of the house"-IVIG (I assume this means with abs, not alone! In the NIMH studies they used long term abs after IVIG)

"life-threatening" (suicidal, danger, anorexia)-plamapheresis (I also assume this means also follow with antibiotics, as they did in the NIMH studies)

 

-SSRI-start with 1/10 of the regular dose

 

-The team at NIMH would be happy to talk to doctors (a Canadian mom was saying she had trouble getting any sort of treatment)

 

-follow AAP recommendations for prophylaxis for SC. This is antibiotic prophylaxis until age 21. She said if that isn't practical, then she said until they are symptom free for 2 years. Since the immune system is activated, you need to get back to the point of tolerance.

 

Here's a link to the full discussion: http://latitudes.org/forums/index.php?showtopic=22653

Edited May 4, 2014 by eamom

[WorriedDADNMOM]

I agree with quannie and eamom. Since our Pandas/Pans kiddos are all different....targeting the exact infection(s) will be a "key first step", however it is a very multi layered approach. You must get a Pandas doc to do blood test to determine what infections both bacterial and viral could be a part of the picture. My gut would be that there is more than one thing going on contributing to your kiddos issues.

 

As for your last question, for us, we still see flares. However, we are much more in tune with behaviors. We, with our dd, can predict someone close to us being diagnosed with Strep even before that person gets a swab. On a good note, we are armed with a plan of current management (improving immune health, reducing inflammation, vitmamin and mineral supplements) and flare management (sick protocol) that severely reduces the drastic drop off and quicker rise back to "normal".

 

Take it one day at a time and keep asking questions......there are lots of helpful people with tons of knowledge.

[MaryAW]

If your daughter does well on ABX, why would you do plasmapheresis? That is for the most extreme cases of PANS/PANDAS.