melanie

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We do it monthly.It isnt that its painful its an IV .We do 1g in 4 hrs every 21 says.I have seen GREAT improvment.Way less rages way less everything.My son is 15 so I didnt have much choice. Oh we do the IVs at home Melanie

I voted

Please answer this is just for my own information Im struggling with this Thanks Melanie

Can you add the ammount of IVIG used? 1g 1.5g 2g I dont know how? Melanie

Melanie, here is the link to the study. http://intramural.nimh.nih.gov/pdn/pubs/pub-5.pdf Also, you might try having Dr. Kavocevic talk to your MD. He convinced Dr. Bouboulis, an amazing immunologist, to switch his protocol from low dose monthly IVIG to higher dose less frequently after a conversation between the two. Also, he talked at length with our pediatrician to explain his protocol so I know he is more than willing to speak with fellow physicians concerning PANDAS and his enormous knowledge and experience on the topic All you would have to do is drop him a quick e-mail at DrK@webpediatrics.com to get the ball rolling. In our case, our pediatrician e-mailed, he responded within 24 hours and gave her all the information she needed to set up the IVIG. Also, the conversation between Dr. K and Dr. Bouboulis was prompted by Dr. K becasue of all the calls he was getting from parents whose children were getting low dose monthly IVIG to no effect, so I know it is a topic he cares deeply about. Again, nobody on this forum can say for a fact what the absolute correct treatment is. I don't think most things in medicine are that clear cut. With that said, Dr. K has treated 500 plus PANDAS patients, and took a while and lots of research and application developing his protocol. E-mail him or have your doctor do it. Good luck, Alex Is there any more recent .This study is from 1999 over 10 years ago. For those of you being treated by her is she using the 2 grams I want to call his MD and speak about this but really need more than 1 study thats 10 yrs old. Thanks for the paper it was good to read, Melanie

Can someone foward the study to me If I show this info to our MD maybe she will change he opinion.She said she knows alll of sWEDOS WORKS i JUST WANT TO MAKE SURE tHANKS Melanie

Me and my husband both had numerous strep throats and both had our tonsills removed at aroud 11-12 years old

someone needs to show me proof that you need more than 1 mg per kg .I cant find anyone anywhere (MD) that is saying this.Who is using this and has had better results who??If anyone can foward this literature I would be greatful.Sticking my son every 21 days for no reason if its not the right dosage will make me very angry. Melanie Dr T is dannys neurologist and Dr Junouchi at UNDMJ is his immunologist Melanie

someone needs to show me proof that you need more than 1 mg per kg .I cant find anyone anywhere (MD) that is saying this.Who is using this and has had better results who??If anyone can foward this literature I would be greatful.Sticking my son every 21 days for no reason if its not the right dosage will make me very angry. Melanie

I think its seasonal affective disorder(something like that)? I hear you Peg Im sick of tis too.I really would like to do some fun stuff like maybe a vacation.Some place warm ,its cold in NJ .Our MD is a immunologist ,shes pretty great Ill foward her name if you want it .Shes at UMDNJ in NJ and she takes lots of insurances .Oh and she also is VERY VERY familure with Autism so thats great. Melanie

Every 8 weeks, 1.5 m.g. per kilo gram (hopefully only three treatments are required for us). -Wendy We do every 21 days I dont know exactly why 21 but..And its 1mg per kilo were approved for min 6 months and are probably going to go alot longer SF mom are you getting the 1.5 mg covered from the insurance comp? Melanie

What is an antibody? How does this fit in. Couldnt I just trust that this MD who has been an immunologist for 34 years ,has written papers for Swedo knows when hes bettter?/ I want to rest I m real tired. Dannys tired.He need to have a better life ,friends and be able to go back and attend activities. My marker will be that when he can go back to life in general.I wish I had a more clinical education I wish I was a Pharmacy major or better yet an immunologist so all of this would make scence.(I also wish I was better at spelling). Have a great day melanie

Ive been dealing with PANDAS for quite some time,I have read so much most which I dont understand.I know PANDAS is not understood and theres still alot to learn but everyone seems to be doing different things.Its very confusing . Danny is having IVIG treatments every 21 days with an immunologist who insists 1mg per kilo is enough and then I get information that he needs 2 mg per kilo?? Who aside from Dr K says that is fact??Who?? Dr T didnt tell us that.I read some info from Swedo she doesnt say that ,So who ,who is in charge here? Dannys now taking Minocycline ,he was taking clindimicin with Dr T . And where does Mycroplasm fit in .Dr T tested Danny for this and his numbers were very high.His Immunologist said this means he had HAD an infection in the past .Is this what caused PANDAS??? What antibiotics are going to get rid of an infection that he HAD not HAS?? Biaxin? OMG !! Danny is doing well much better than before IV.Is he cured ,no will he ever be ??I dont know because hes almost 16 and has had this for quite sometime,and the information is ever changing. Thanks for letting me rant Melanie

Danny started the minocycline today he was on clindomicin and zithromax but his md wants to try minocycline I wanted to see if anyone else has tried it Melanie

Has anyone used Minocycline ???Or is it just us??? I know I posted this before ,but .How about the families with the mycroplasm issues ??? Melanie

IV completed in 3 hours .Danny is doing fine so far we did ggive him 20 mg of prednisone and will do that tomorrow.He had a headache last time so were just playing it safe.Ill let you guys know how this progresses. melanie ?????? I'm confused. Won't the prednisone suppress the effects of the IVIG? Prayers that you see fast and continued improvement. Oh No does it? I didnt know that at all Melanie

IV completed in 3 hours .Danny is doing fine so far we did ggive him 20 mg of prednisone and will do that tomorrow.He had a headache last time so were just playing it safe.Ill let you guys know how this progresses. melanie

Hi Dannys 2nd(3rd)IV is tomorrow still doing 1g per kilo .Hes also finishing a zith pack and will switch to minocycline on Sat for several months.Im keeping a journal throughout this and I do think hes much better.His rages are no where near where they were and I NOTICED HIS FOOT TIC IS PRETTY MUCH GONE!! wish us luck Melanie and danny

Hi Ifyou see Dr T you will see Dr T only!!He will spend the time needed and will help !!Email him ,thats the easiest way to contact him or leave a message on his machine.He will call you back.He will listen and he will try with all he can to help. Good luck Melanie

Im so interested in this post and thanks Danny is having monthly IVs and i glad to hear that the symptoms like OCD have gotten better Thanks Melanie

Hi Alex I am not disagreeeing with you.I spoke to her about this and she doesnt disagree also she wants to treat his immune issues first and see how he progresses(sp) I am going to give it 3-4 treatments at this dosage,and see. Thanks Melanie

Yes Pharangitis is a throat infectiion .Thats what the zith was for She feels minocycline is a good antinflamatory and danny does have asd so hey whatever helps. I think we will give it a try .Thanks Peg ,any luck yet for Allie?? Melanie