What about IVIG?

[P_Mom]

Hello Everyone.

I am new to this post, I finally came across it today after months of research on PANDAS. My son,5, had sudden onset of vocal tics/ocd this past August and I was a mess for about a month over it, still kinda am. He and his brother, 7, had strep at the time and when I came across PANDAS, wow, that was him. He went on the typical antibiotic course, actually 2 courses, and during the second course is when it all exploded.?? During the ensuing 2 months, everything calmed down considerably, with just very minimal ocd and a minimal vocal clearing of the throat left today, no one would notice a thing. I don't know where to go from here. What is amazing is my older son suddenly develpoed 2 motor tics a couple of weeks after, and I am wondering if it could be the same thing. But, my older sons behavior did not change like my younger sons did VERY much so. My older son only tics when under stress and it is mild, he is going in for tonsillectomy this Thurs. for airway obstruction with his adenoids and they will just take out everything. I am curious to see if his mild tics go away as I have read tonsillectomy can significantly help PANDAS kids, if he is even one. But, back to my younger son, who I have no question has PANDAS. We are waiting test (blood) results right now, then what do I do? I am torn because I have read much about IVIG, and PEX, and know they have been proven to put these kids in complete and lasting remission. PEX removes antibodies, IVIG blocks. I have found a doc who has vast experience and success with IVIG and PANDAS, and he says a complete and lasting cure should and can be expected after IVIG is administered, even in the event of strep, the child should remain symptom free. To test effectiveness of IVIG, steriod burst is administered, which is an anti-inflamatory, immune suppresent, just what PANDAS needs, and if SIGNIFICANT improvement in your child symptoms is noticed, then IVIG can be considreed as the next step. So, I am wondering, should I put my child on preventative antibiotic, or just go for the IVIG and take care of it altogether? IVIG is considered invasive and carries some risks. I spoke with a MOM whose daughter had severe OCD/PANDAS, and after she had PEX, it was totally gone. Does anyone have any input or experience with IVIG? I was surprised to not find it mentioned anywhere in these posts. By the way, what is a DAN doctor? I appreciate advice form all you PANDAS parents, I am confused as to which step to take next. Thanks.

Kelly

[PANDAS_Denmark]

Dear Kelly/ -

 

My son was treated with IVIG six months ago, with amazing results.

However : Shortly after the treatment my son (at that time treated with Pencillin V) was having numerous infections, and his tics and OCD was back as strong as ever :-(.

 

I have been told, that IVIG/immunoglobulin can help only on an ongoing autoimmune proces, and that is why my son reacted the way he did : With a new autoimmune proces leading to new symptoms, when he was infected again.

 

Since then my sons penicillinprofylaxis is changed (from Penicillin V to Amoxicillin – and latest to Azithromycin), as Penicillin V no longer prevented strepinfections.

 

When my son was treated with IVIG/immunoglobulin, the doctors told me, that I was to expect, that the treatment was to be repeated with 6-8 weeks interval.

 

Since the first treatment however it has been impossible for me to get the doctors to repeat the treatment. As such I am now looking for another doctor/clinic/hospital willing and qualified to treat my son.

 

Have you ever read this article about IVIGtreatment of PANDASchildren : http://intramural.nimh.nih.gov/pdn/pub-5.pdf ??

 

I you have found other articles, I am very interested in these.

 

Sincerely -

PANDAS_Denmark

[txdavis1]

Hi Kelly

I am struggling with the same thing. My 8 year old son was recently diagnosed with PANDAS (we believe he has had it for several years). His doctor has prescribed preventative antibiotics and that's what we have been doing for the past 3 months. It doesn't seem to be working. His symptoms still come and go. Everything I read says IVIG or PEX is the way to go. I can't seem to find any doctor here (Dallas/Fort Worth) that knows alot about PANDAS. The Infectious Disease doctor he is receiving treatment from said the IVIG was not proven to work for PANDAS, and that my son "didn't have it bad enough". Well, I find it hard to believe that IVIG hasn't been proven to work after everything I have read. How did you find a doctor that had a large amount of experience with PANDAS, and have you pursued the IVIG or PEX? Is this a treatment that insurance might cover?

 

 

Hello Everyone.

I am new to this post, I finally came across it today after months of research on PANDAS. My son,5, had sudden onset of vocal tics/ocd this past August and I was a mess for about a month over it, still kinda am. He and his brother, 7, had strep at the time and when I cameE across PANDAS, wow, that was him. He went on the typical antibiotic course, actually 2 courses, and during the second course is when it all exploded.?? During the ensuing 2 months, everything calmed down considerably, with just very minimal ocd and a minimal vocal clearing of the throat left today, no one would notice a thing. I don't know where to go from here. What is amazing is my older son suddenly develpoed 2 motor tics a couple of weeks after, and I am wondering if it could be the same thing. But, my older sons behavior did not change like my younger sons did VERY much so. My older son only tics when under stress and it is mild, he is going in for tonsillectomy this Thurs. for airway obstruction with his adenoids and they will just take out everything. I am curious to see if his mild tics go away as I have read tonsillectomy can significantly help PANDAS kids, if he is even one. But, back to my younger son, who I have no question has PANDAS. We are waiting test (blood) results right now, then what do I do? I am torn because I have read much about IVIG, and PEX, and know they have been proven to put these kids in complete and lasting remission. PEX removes antibodies, IVIG blocks. I have found a doc who has vast experience and success with IVIG and PANDAS, and he says a complete and lasting cure should and can be expected after IVIG is administered, even in the event of strep, the child should remain symptom free. To test effectiveness of IVIG, steriod burst is administered, which is an anti-inflamatory, immune suppresent, just what PANDAS needs, and if SIGNIFICANT improvement in your child symptoms is noticed, then IVIG can be considreed as the next step. So, I am wondering, should I put my child on preventative antibiotic, or just go for the IVIG and take care of it altogether? IVIG is considered invasive and carries some risks. I spoke with a MOM whose daughter had severe OCD/PANDAS, and after she had PEX, it was totally gone. Does anyone have any input or experience with IVIG? I was surprised to not find it mentioned anywhere in these posts. By the way, what is a DAN doctor? I appreciate advice form all you PANDAS parents, I am confused as to which step to take next. Thanks.

Kelly

[P_Mom]

Hi,

I know of some people who have had success getting their insurance companies to pay for it..really..that is something you'll just have to check into...some companies will, but, don't be surprised if yours doesn't. What antibiotic is your son on? Some antibiotics work better than others, also, sometimes these kids will still have symptoms even when on antibiotics, but, their symptoms should be improved and easier to manage. Symptoms that come and go with PANDAS kids have alot to do with to illness, any kind, and just exposure is sometimes enough to cause an increase of symptoms, also, once this disorder begins, there are other triggers that cause an increase. As far as IVIG or Pex.. no, we have not gone down that route, we don't need to at this point. But, if things got bad enough (I pray they don't) and other treatments were failing, IVIG is something we would consider, I know personally of people who have had complete success with it, and their children are considered cured! The whole PANDAS thing, for whatever reason, still remains a controversial diagnosis (unfortunately), and, therefore, I believe that is one of the reasons that IVIG hasn't been accepted as a standard treatment for PANDAS, afterall, the disease itself hasn't been universally accepted. But, I do know it has been extremely successful with some kids, but, it also has NOT helped others. Hope this helps .

 

Kelly