Has anyone had IVIG in Ohio?

[colleenrn]

I was wondering if anyone has had IVIG in Ohio and if so, whose protocol did the doctor use? If they use Dr. K's or Dr T's protocol, do yo have to first do a phone consult?

TIA.

Colleen

[thereishope]

In Ohio? Oh, man, we can't even find doctors that will give us antibiotics.

[colleenrn]

Vickie,

I forget, has your son had IVIG? My sister lives in Ohio and wants to start figuring out how to pursue IVIG for her son who will be 12 this month.

 

Is it really true that IVIG has to be done by age 13?

Colleen

[thereishope]

My son has not needed IVIG. I know I've been lucky. What part of Ohio? More like the Cleveland area or the Cincinnati area?

[ma2ar2rm2]

My son has not needed IVIG. I know I've been lucky. What part of Ohio? More like the Cleveland area or the Cincinnati area?

 

I'm not in need of IVIG at this point.. my dd doctor just told us she has PANDAS about a month ago. But He started her right away on the abx. and that seems to be working really well.. Our Doctor is very new to this also.. my dd is the 1st child he has saw with PANDAS.. and he said 2 years ago he didn't know what to think of it when he read about it.. but last month after seeing my daughter he is now a believer and he is treating my dd..

ONLY I do not know what his feelings are on IVIG.. it has never come up while we were talking.. and He is learning as we go at this just like I am.

 

so I would love to stay in contac with anyone out there from Ohio because I am sure I will need your help along the way..

I'm more towards the Cleveland area.

[nevergiveup]

Dr Brunner in Rheum at Cinc Chlds has treated sudden onset ocd with ivig with success. She is booked up with her lupus patients and the wait can be months to get to see her. Also the immune docs in the hemoc/bone marrow transplant/immunology division (not allergy and immunology) have several that are "PANDAS like" with immune deficiencies that are on life long ivig. Whatever you do, do not ,NOT go the neurology route you can kiss your ivig chances goodbye if you do. (In Cincy) Also Shott at Cincy an ENT published a case study on tonsillectomies and pandas and with evidence of strep and tics will recommend tonsillectomies.

[wornoutmom]

If you want to cross the border into Michigan, our neurologist has ordered IVIG for my son.

[ma2ar2rm2]

If you want to cross the border into Michigan, our neurologist has ordered IVIG for my son.

 

Thank you.. I will keep this in mind if we ever have to go that route.. I pray we don't, but I need to know where to go for help if we do. I'm 1/2 way between Cleveland and Toledo.. So MI. isn't all that far.. and i'm not opposed to driving to Cincy either if it comes to that..

[Mustang Carole]

HI,

Contact Judith Anderson, M.D. at Detroit Medical Center, Harper Hospital part of

Detroit Children's Hospital, .....the specialized phareses unit has about 10 beds,

this is all the nurses do 24/7.

Location is center of Detroit.

Ronald McDonald house on site for special rates for families to stay overnight, etc.

 

Mustang Carole