IVIg this Monday and Tuesday

[pmoreno]

Can those of you that have used Dr. K and live out of state from him describe the process he used to treat your child? Did he first do a phone consult of 1 hour for $300? What came from that? How did it work with living out of state from his practice? Did you still use your own Dr.? Was it a pediatrician ? Did Dr. K consult with them via phone or fax or email? Did your ped/ local Dr. take your word on treatment or need to talk to Dr. K? It amazes me how some of you that are newer to PANDAS have jumped right onto the steroid and IVIG treatments with Dr. K. I would appreciate an overview of how he assisted you and what his fees were along the way. Did he charge each consult even those with your Dr's? Was any of this covered by your insurances?

I made a phone consult appointment for next week. Just curious how this will work. We did see Dr.Murphy in Florida and it really didn't help that much with the treatment plan other then diagnosis and OT.

 

Thanks,

Michele

 

Hi, Amy:

 

Hang in there - believe me, folks on this forum can totally sympathize and understand how traumatic this is for the PANDAS child and their entire family! This past August and September were definitely the worst months of my family's collective life. Our 12-year-old son woke up with an overnight explosion of PANDAS symptoms, like he was possessed. The next 6 weeks were just plain nightmarish and drained my wife and I completely. We felt like we were losing our son, didn't know how we'd keep him out of the hospital and hold our family together.

 

We started working with Dr. K, and that gave us hope. Steroid burst worked well: gave us about 5 days of blessed relief. Weaning off psych meds (per Dr. K advice) improved things again. We had IVIG with Dr. K in early October, and we've seen HUGE improvements since then. Due to our son's age and symptom severity, we still have a ways to go, but he's immensely better than he was before IVIG. We have a healthy family life again and can laugh, smile, and joke together. Our son is more himself than we've seen in a long, long time!

 

We've heard other IVIG / Dr. K success stories and really believe that this treatment offers hope when PANDAS kids get to that "desperation stage" of illness. Here's hoping that you're telling your own success story post-IVIG on this forum in the not-too-distant future!

 

Best of luck!!!

 

 

 

Michele,

We also found out about Dr. K through his website and my daughter was originally diagnosed this past summer by a doctor in Florida ( Dr. Bradstreet's clinic). I thought about IVIG briefly at that time, but didn't want to return to Florida because of the expense. Dr. K was closer and his website talked about the case that resembles our daughter too. The steroid burst didn't seem like a big deal to me. I'm a nurse and have enough background in medicine to understand what is risky and what isn't and I felt pretty comfortable with this. I was able to get the physician in Florida to prescribe some things since Dr. K wouldn't prescribe initially without having first seen her. He did return all my e-mails even before the actual phone consult and has consistently returned all e-mails after the IVIG without a charge. You mentioned that you're in Ohio. Someone that I work with gave me the name and phone number of an immunologist in Toledo, Ohio who does IVIG for PANDAS. I'll have to look through my pockets tommorrow morning for that piece of paper. I haven't contacted them and don't know much about their practice - since we've already done IVIG, I wouldn't need to go there, but I thought I might call and see what success they've had with their protocols, just out of curiosity. If you did decide to use them, but find that they use a dose that's different from what you want to use (I think Dr. K uses a higher dose than most, but prefers to do the infusion just once rather than multiple times since he feels its more effective that way) I would guess that they should be willing to work with a recommendation from him. I'll post tommorrow when I find that name & number. Pat

[guy123]

Quick question, is "Steroid burst" a specific treatment or is it slang for something else?

 

Thanks.

[amy s]

Quick question, is "Steroid burst" a specific treatment or is it slang for something else?

 

Thanks.

 

 

A steroid burst in the case of a pandas child is used as a diagnostic tool to see whether or not IVIg would possibly work for that child.

[guy123]

Quick question, is "Steroid burst" a specific treatment or is it slang for something else?

 

Thanks.

 

 

A steroid burst in the case of a pandas child is used as a diagnostic tool to see whether or not IVIg would possibly work for that child.

 

I guess what I'm asking is, if I go to the doctor and ask for a "Steroid burst," will he say "oh, ok, right this way" or will he say "I don't know what that means."

[amy s]

Quick question, is "Steroid burst" a specific treatment or is it slang for something else?

 

Thanks.

 

 

A steroid burst in the case of a pandas child is used as a diagnostic tool to see whether or not IVIg would possibly work for that child.

 

I guess what I'm asking is, if I go to the doctor and ask for a "Steroid burst," will he say "oh, ok, right this way" or will he say "I don't know what that means."

 

 

I know that in some cases of TS and tics...steroids makes the condition worse so I would not advise doing this unless you believe you have PANDAS (based on whatever your situation is). Most doctors would know what a steroid burst is. Whether or not they will just say, 'oh ok right this way' or not is anyone's guess.

 

If you are interested in learning more about it I would thoroughly read Dr. K's website www.webpediatrics.com on the PANDAS/PITANDS and IVIg pages.

Regards,

amy s