IVIG for tics in PANDAS teenager

[SunshineStateMom]

My daughter is almost 14. She had a misdiagnosed strep infection in October with a facial tic beginning in November. She has no other symptoms. She has been diagnosed by several PANDAS doctors and treated with antibiotics. Can you wonderful people on this forum please share with me the details of any experience you have had with IVIG and tics in older children. Thank you.

[NancyD]

My daughter is 14 and before starting monthly IVIG infusions her tics were really bad (both motor and vocal tics). Within 3 months the tics were 90% gone. Now they are 99% gone. Occasionally I see one little tic when she is stressed, but it is very minor. While she has had some setbacks this past winter with other symptoms (mood dysregulation, rages, and OCD), the tics have never come back.

 

Nancy

 

My daughter is almost 14. She had a misdiagnosed strep infection in October with a facial tic beginning in November. She has no other symptoms. She has been diagnosed by several PANDAS doctors and treated with antibiotics. Can you wonderful people on this forum please share with me the details of any experience you have had with IVIG and tics in older children. Thank you.

[Fixit]

My daughter is 14 and before starting monthly IVIG infusions her tics were really bad (both motor and vocal tics). Within 3 months the tics were 90% gone. Now they are 99% gone. Occasionally I see one little tic when she is stressed, but it is very minor. While she has had some setbacks this past winter with other symptoms (mood dysregulation, rages, and OCD), the tics have never come back.

 

Nancy

 

My daughter is almost 14. She had a misdiagnosed strep infection in October with a facial tic beginning in November. She has no other symptoms. She has been diagnosed by several PANDAS doctors and treated with antibiotics. Can you wonderful people on this forum please share with me the details of any experience you have had with IVIG and tics in older children. Thank you.

 

that is so great!!!!! how many have you done (3)? and how many more do you think you'll do? Or are you stopped and hopefully will never have to do them again

one more, can you tell me how long between your childs onset or when signs first started to show up and starting ivig?

[NancyD]

Fixit,

 

With the exception of a 3-month break after the 3rd infusion (where we did see 50% return of symptoms), we have been doing infusions monthly for 1 1/2 years. We started at 1.5g/kg over two days and then went down to .5g/kg every 28 days. As soon as we started the infusions back up again the symptoms subsided within a few weeks. All tics, rages, and mood dysregulation disappeared and she went off Risperdal completely. She started sleeping through the night in her own bed, her grades went from Cs and Ds to As and Bs, and we saw major progress with social skills. The only symptom it did not help was OCD.

 

After her setback in November we started increasing monthly dosage of infusions to .75g/kg and then later to 1g/kg. This past month I asked that we increase dosage to 1.5g/kg and we plan to take a 2-3 month break to let the antibodies settle and see what happens.

 

In answer to your last question, my daughter had an overnight onset of symptoms at the age of 2 within a week of having impetigo, but PANDAS was not diagnosed until she was 7. Everyone attributed the symptoms to her ASD diagnosis. She was put on daily penicillin at the age of 7 and she has been on it eversince. We have tried other antibiotics but the stronger ones cause severe yeast problems and the antifungals cause her liver function levels to rise too high. Our DAN doctor recommended IVIG 7 years ago but it took us 5 years to finally get insurance to cover it. My biggest regret is waiting so long to do IVIG.

 

Nancy

[viesonline]

Nice share!!!

I have read all.

So great!!!

Edited March 25, 2010 by viesonline