On Penicillin V for Pandas but doctor told me to institutionalize

[hugs2day]

Some of the doctors on the list will do a phone consult and fax in the abx same day. I had to do that the first time because my son couldn't even leave the house. Thank You Dr. *** in CA ! he saved our lives.

 

At first we tried Augmentin for my son and I saw slight improvement. My son was bad off when PAndas hit and it was literally overnight exorcism.

 

Then I called the dr. back after 9 days with mild improvement and he said lets switch to Zithro. I saw immediate improvement in my son that day very dramatic. He has been on zithro since and sometimes even off zithro for long periods because he is doing so well.

 

My point is you might have to try a couple different antibiotics and you will definitely need a pandas doc. Just pay the cash and get the help immediately once you get your son stable you can start educating your local docs.

 

My son's pediatrician initially thought I was a kook but after he witnessed the turnaround no thanks to him, he know will support a script when needed and I also found a local neuro a year too late but at least we have a team of dr's on board locally.

It takes time to tweak what works best and what doctors you can trust and also doctors that are available. You need them to be available incase your child goes into crisis from a flare. Also keep a journal daily of your sons symptoms and improvements.

 

There are some supplements that help initially too like melatonin, vit c, magnesium, etc. My son used to take a lot of supplements at his sickest but now only takes a mutlivitiamin, probiotic and prophylactic antibiotic. It took nearly 3 years to get to this point.

 

He will get better and this forum is a blessing. My darkest saddest days were spent on this forum doing research and seeking hope from other parents and that is why I have been able to help my son get better. He is not healed but he is under good treatment.

 

My son is currently in a mild flare due to a loose tooth in the past this would have sent him in a tizzy and our household upside down but this time very mild. It will get better for you. Sending you cyber prayers for your son.

[lfran]

Can you please pm me the name and location of the California doctor who was so helpful? We are in LA.

 

Thanks!

[EAMom]

The NIMH study is almost wrapping up so call Paul Grant ASAP!!

 

http://clinicaltrials.gov/ct2/show/NCT01281969