Treatment options for PANDAS

[starfish]

I am new here. I have been reading a bit and have seen antibiotics and IVIG as possible treatment options for PANDAS.

 

What other treatment options exist?

 

Is there anything less risky/invasive that is effective?

 

Thanks,

 

Beth

[amy s]

I am new here. I have been reading a bit and have seen antibiotics and IVIG as possible treatment options for PANDAS.

 

What other treatment options exist?

 

Is there anything less risky/invasive that is effective?

 

Thanks,

 

Beth

 

 

Hi Beth,

 

As far as treatment options, most of the literature says to treat with cognitive behavioral therapy and typical OCD meds or medications for tics. However, this is highly suspect with parents of pandas kids. We've tried these options and did not get relief. The main treatment option seems to be getting AND staying free of strep which usually is possible with antibiotics. I know there is a fear of resistance, and it is real and scary, but the severity of my child's symptoms were such that it left NO question regarding what to do (long term antibiotic prophylaxis). There are a ton of things discussed on here as to what the best treatment options are...including supplements etc....check in frequently and you will see people discussing all sorts of things they have tried. But what works for one may not work for all. Good luck, Beth.

regards,

amy s

[Pudgeo]

Hi Beth, You may want to look into 2 books to help you..first one is Treating the 4-A disorders by Dr Bock. he has ALOT of info on anti-inflammatory supplements you can try. Also Children With Starving brains by Dr McCandless has a new edition where she discusses actos & hbot for brain inflammation. There are alot of natural supplements you can give to help modulate the immune system( Epicor by VRP, transfer factor, olive leaf extract). Most of us had kids whose symptoms were so bad we have had to use several therapies to get our kids to improve! Sarah

[starfish]

Thank you and yes I am very familiar with DAN and the books you mentioned.

 

What I was wondering is if there were any actual reports here of natural treatments that have gotten rid of PANDAS?

 

Not just theory, but real reports of kids beating this with naturals.

 

Thanks,

 

Beth

[michele]

That is interesting that she discusses using Actos for treating PANDAS for brain inflammation. That is exactlt what Dr. Demio, DAN! Dr. wanted us to do and we tried a year and a half ago. I got so much slack from everyone at Lattitudes and other Dr's we saw that it was too risky that I immediately stopped it. Dr. Demio swore that in 5 years Actos would be the main treatment of Autism type disorders. Has anyone else here used it?

 

Back to the question. We have tried many things to treat the PANDAS symptoms. Because of the tics we have tried and are currently using Abilify which also helps with the emotional moodiness. We see a neurologist for the tics. Then we have tried long term antibiotics. We have used PEN VK first and it wasn't strong enough because he still had symptoms, then Augmentin and he again had the urination issues and the tics, now we use Omnicef 300 mg once a day. We have seen an immunologist for the antibiotics. It is not perfect and the tics still have waxed and wanes as have the moods. In the fall he did get sick from strep exposure in Oct and the course of symptoms lasted until Jan. Maybe Azith would be better but we have not been able to get it yet. Probably a stronger antibiotic during the episodes would help too. You have to find the right Dr. though that is receptive to these types of treatments. It is still such a contraversal diagnosis. Also we have tried many supplements some including Nystatin for yeast and Amino acids, fish oils are important and flax oils. We have used Monolaurin to help boost the immune system. We have done the GF/CF diet. That treatment is from the DAN! Right now we are doing behavioral therapy with reward charts and time outs with 123 Magic, , and psychiatry for the ADD and using Concerta 18 mg. a day. I also think vitamin D supplement is important as is a probiotic. Although I have spoken to Dr. K about the steroid burst but have not found a Dr. to give it. Also down the road IVIG is a possibility. Dr. K can do this.

 

Hope this list helps you. I agree Dr. Bock's book is great as is Against medical Advice by Patterson. Finding the right Dr's is the most important factor.

Michele

Hi Beth, You may want to look into 2 books to help you..first one is Treating the 4-A disorders by Dr Bock. he has ALOT of info on anti-inflammatory supplements you can try. Also Children With Starving brains by Dr McCandless has a new edition where she discusses actos & hbot for brain inflammation. There are alot of natural supplements you can give to help modulate the immune system( Epicor by VRP, transfer factor, olive leaf extract). Most of us had kids whose symptoms were so bad we have had to use several therapies to get our kids to improve! Sarah

[Pudgeo]

My friend is trying actos now on her PANDAS son. I am watching and waiting to see if it helps him. It really has a pretty low side effect profile. She wanted to try this before anti-biotics. After researching it I feel it can be of benefit to some kids..but as we know they are ALL different!! Sarah

[Indigo]

Any updates on using ACTOS? My doctor mentioned it to me today. First, he wants to try nitrexone. I am interested to know if any PANDAS kids have had success with either of these.