Confused!

[Haileymadison]

Hey all, I was surfing Dr. K's web site and noticed that he has recently added this new Addenum.

 

ADDENDUM: We have followed several patients in whom the initial antibiotic treatment resulted in a complete symptoms resolution for almost 6 years. Unfortunately, ALL of these patients eventually had a recurrence and had to be treated with the IVIG.

 

Is IVIG in all of our childrens futures? If this is the case, I better start saving my money now! My Insurance stink!! UGH. I just found this statement very discouraging.

 

My daughter is doing so well!!

[beeskneesmommy]

I have had a consult with Dr.K (last Feb.) and this seemed to be his belief at that time as well. His treatment is based upon his stats and his stats are based upon his patients only. I respect Dr. K but I also keep in mind that there are many excellent PANDAS specialists and a few different thought processes. One experience that I have had that has been extremely insightful, has been most recently with Dr. B. He tested DS5 for underlying co-infections and I wass floored to find that he had Bartonella and possibly Lyme. The antibiotic treatment directed toward these co-infections seems to be doing something miraculous. I do not think that you should lose hope, especially if your kiddo is doing very well. Rather, keep digging deeper and be prepared for the future, just in case. I am an older mom of a little boy turning 5 on Monday. I have learned that I must live in the moment each and every day - enjoy him as much as I can in the present and work like a dog when I can to prevent him from getting lost again. I hope you have a wonderful, care free Labor Day weekend with your beautiful, precious daughter!! -Kath

[HT's Mom]

Yes, I think that is what Dr. K believes, which I know sounds scary, especially to those parents with young children. I can only speak to my child, who is now 16, and, importantly, did not test positive for any other co-infections. But he was treated successfully for PANDAS symptoms with antibiotics at age 11 (and we think "accidentally aw well at younger ages of 5, 6, 7 range), and we thought that was the end of it. But his symptoms returned big time at 15 1/2. The hard thing is knowing now that treating older children with IVIG is not often as successful or as quickly successful as with young kids. I sort of wish now that we had known to do it when he was younger, but could I have made that decision then when he got so much better with just abx? Probably not. So, for us, Dr. K is right, that it came back. We did do IVIG in May, and so far DS seems to be responding well.

 

BTW, and I don't know if this is relevant to the decision, as clearly it has to be the proper treatment decision when you and your child are ready. But just something to keep in mind if you are thinking about finances. The cost of IVIG is largely based on the sheer volume of immunoglobulin needed. So a 6'1" tall, 160 lb boy requires a whole lot more than a 7 year old, etc. It cost us nearly $14,000, plus doctor's fees. Meanwhile, i will also add that IVIG itself is a lot less scary than it sounds.

Edited September 3, 2011 by HT's Mom

[dcmom]

In my opinion- this is an irresponsible statement. There is no proof that IVIG "cures" the PANDAS disorder, and also no proof that it would be the only "cure". Pandas is an autoimmune disorder, very likely, there is no cure, but hopefully long remissions. I know he has treated kids with IVIG that have relapsed. IMHO none of his or our kids, have gone long enough to know if it is "gone". Until you can talk 10 to 15 year remission, in many patients- c'mon. This information goes completely against what Dr Swedo states, as well.....

[Chemar]

Hi

I personally know of a number of kids whose PANDAS has resolved with only antibiotics, no IVIG and some of them are now young adults (We had members who were early PANDAS parent pioneers here on the TS/tics forum and on another forum many years ago!)

 

I am sure the doctor is speaking from great experience, but so were those who told me years ago my son would never be ok without meds for his TS, OCD, Chron's..................and he is doing wonderfully well and almost 22yo, on only natural treatments for 11 years now

 

IMHO there are always exceptions

[P_Mom]

Yes, I think that is what Dr. K believes, which I know sounds scary, especially to those parents with young children. I can only speak to my child, who is now 16, and, importantly, did not test positive for any other co-infections. But he was treated successfully for PANDAS symptoms with antibiotics at age 11 (and we think "accidentally aw well at younger ages of 5, 6, 7 range), and we thought that was the end of it. But his symptoms returned big time at 15 1/2. The hard thing is knowing now that treating older children with IVIG is not often as successful or as quickly successful as with young kids. I sort of wish now that we had known to do it when he was younger, but could I have made that decision then when he got so much better with just abx? Probably not. So, for us, Dr. K is right, that it came back. We did do IVIG in May, and so far DS seems to be responding well.

 

BTW, and I don't know if this is relevant to the decision, as clearly it has to be the proper treatment decision when you and your child are ready. But just something to keep in mind if you are thinking about finances. The cost of IVIG is largely based on the sheer volume of immunoglobulin needed. So a 6'1" tall, 160 lb boy requires a whole lot more than a 7 year old, etc. It cost us nearly $14,000, plus doctor's fees. Meanwhile, i will also add that IVIG itself is a lot less scary than it sounds.

 

 

Was your child kept on prophylactic antibiotics after successful treatment at age 11? Was he on antibiotics when he relapsed at 15?