momoffive

Does anyone know of a good reference guide for reducing inflammation? I am look for lists of food, additives and such to avoid as well as natural anti-inflammatory medications. Thanks

I agree with the 30 days. my doc even does that for my non-pandas kids if they get strep just to be safe.

Anyone know if it is possible to get this after months of daily abx?? Thanks!!!!

oh, yes! regular lab tests are very important when doing high dose D vits!

this is bicillin LA 1,200,000 units. was your's the same? Thanks

Our doc recommends 4,000 per day for 45 pound child whose current level is about 75. due to immune syst dysfunction they want d levels higher than typical.

Hi. The doctor recommended we try a monthly shot of pen. instead of daily augmentin [which is working but not very well]. has anyone tried this with success or failure? Thanks!!!!

we saw Dr T recently and he is good w/ finding infections and treating w/ abx. he does not do PEX or IVIG. he does do steriod bursts.

hi. my son had WesternBlot IgG P41. I am trying to understand this result. any ideas? thanks as

Dr T said he wants to treat my 5 year old [sibling of another of my kids who has severe PANDAS] who has elevated titers and sep anxiety, some tics and OCD - mild at this point. my 5 year old has never had a strep infection that I am aware of, but Dr T thinks abx during the school year will be beneficial. I am not going to argue w/ that!

Hi. I am trying to understand why GFCF would help? is it that Casein and Glutens are inflammatory? my son's celiac was negative and his in not technically allergic to dairy

Thanks for the info. is it hard to get an appt w/ Dr B? He is only about 1 hour away from me.

Kefir does not have the strep bacteria strain in it and it is a super-powerful probiotic. if you have a dairy or casein problem, you can buy coconut milk w/ kefir strain. it is also fairly easy to make yourself. that way you can be sure of the bacteria used and use any type of "milk." My son used to react to yogurts, but they also tend to have lots of sugar, so it is hard to tell what the reaction is to.

that is very interesting about the antibiotic properties of honey! I use raw honey for coughs for all of my kids and it works better than cough syrup. do you happen to know: does the natural sugar cause any yeast problems? I know my son craves sweets when yeast is flaring.

thanks to everyone, you are right he is very caring and good at his explanations. He ordered labs work and a stronger abx. he did however agree that PEX may be needed soon regardless of the abx work d/t the type of symptoms. thanks again

I THINK she does it a different way than Dr. L, does the procedure in one day. She's also very conservative on the abx afterwards. She may have changed her protocol though. I'm in contact with someone off the forum, who's daughter had pex with Dr. E but is now doing Ivig with Dr. B. I went for a consultation. It takes 2 hours. they put an IV in each arm [but it is metal "tubing"] the blood goes through a machine and back [sorry for my lack of proper terminology]. the child watches movies is fed ice cream so on.....

Would the testing and aggressive abx need to come before PEX? I did not schedule it yet, so I want to be sure the order is correct. Also, I assume Dr. T supports PEX?

I will keep u posted. Although I feel that Dr E has been helpful, I have not gotten answers other than his symptoms are quite severe and he needs PEX. I am praying I get a concrete understanding and plan from Dr T. AT the end of this I may still go ahead with PEX, but I need to understand it all and make the best decision possible.

I'm assuming it's Dr Elia. yes it is Jo Elia.

I am so glad I delayed PEX [actually my insurance delayed ] We planned to get it at the apheresis dept. at CHOP.

I would try to find why it is those titers keep rising. I agree PEX will probably not be effective is there is an active infection (which is, as far as I know, the only reason for titers to keep rising). From what I've heard Dr. T is very thorough and will probably order tests to see where the infection is coming from and find the best way to treat it. Maybe he can even prescribe a steroid taper to get symptoms under control until you are ready for the next step. that is precisely what we need to happen. Thanks for the pointers. I am starting, just starting, to get a basic understanding of what is happening to his body.

I have been so confused recently with what my child's ped and psychiatrist are doing to treat him so I made an appointment to see Dr T tomorrow. Any pointers?? Things I should ask/know? My child's background is ASO titers steadily rising since January [and maybe before but no one tested]. This week they are 785 - in spite of a month of azithro. His symptoms are through the roof awful. I don't need to list them , you all get it I am sure. I just want him to be himself again. The only recommendation I have received is to give him the PEX. They'd be happy to schedule him, but I an nervous and want to be 100% sure. maybe I will never be?? Thanks!!

Hi. Does anyone else have a child who is terrified of water? if so, how do you deal with it - especially in the summer?

Thank you. I just bought these and they seem to be good quality.