Update on dd14

[NancyD]

Hi all,

 

It was a rough winter (thus the reason for falling off the face of the earth), however things seem to be improving. We have continued with monthly IVIG infusions (1.5 g/kg for the first infusion and .75 g/kg thereafter for past year and a half). For about a year, tics were 99% gone, she was sleeping well, rages and mood dysregulation 100% improved, grades went from Cs and Ds to straight As and school bumped her up a grade in one of her subjects. The only thing it did not help was OCD issues, which seemed to improve significantly with 3x daily dose of ibuprofin.

 

DD14 went downhill in late November and although she got a bit better she never got back to where she was in the previous year. We tried doubling her Pen VK dose and also tried high doses of Amox and Augmentin, but that made her worse (increased yeast levels even after doubling probiotics). Although she came in contact with a lot of colds, flu, and strep, she remained asymptomatic throughout the winter. Never got sick. ASO and AntiDNASE B levels have been relatively low since starting IVIG. Prior to beginning, her levels were in the 3000 range. She did get one skin infection after another this winter - toenail, stye, then toenail again. Of course, had to take into consideration normal early teen and hormone issues...

 

After reading comments on the forum and talking with Diana over the months I decided to push for a higher IVIG dose this month and our doctor agreed. So we just did 1.5 g/kg on Wednesday. I have always wondered if the reason for my daughter's success in the first year was because of the high dose in the first infusion or due to the monthly infusions. So I decided we should test it. We're going to take a 3-month break from the infusions to see what happens. We took one break after the third infusion and about 50% of her symptoms came back. So I'd like to test it again and give her antibodies time to settle down. My daughter told me over a week ago that she did not feel the ibuprofin was working so we decided to stop that as well and see if it gets any worse. She says no, so we will stay off the ibuprofin.

 

It's only been two days but I already see improvement. Hopefully I will have more news to report back soon. In the meantime we have an appointment with Dr. L next month to see if she recommends pheresis or PEX. If she does do pheresis I want to be sure we follow it up with another high-dose infusion. However, it would be great if we could do the infusions less often.

 

Although I have been gone for a few months, I have been reading. It's a great forum and I have referred many parents to it. We have been living with PANDAS for 11 years now and I can tell you without question, it has been by far much more difficult of a road to travel than living with ASD!

 

Best to all,

Nancy

Edited March 20, 2010 by NancyD

[thereishope]

I've been thinking about you! Please continue to update us. Hopefully the new dosage will work. I hope and pray you see continued improvement.

 

With spring here and summer coming, hopefully that will help too. When the body has to fight exposure to so many illnesses, it's hard for it to get a break and get better.

[nevergiveup]

NancyD

Thanks for sharing. I am also in the process of trying the high dose after several low dose. Have you considered monitoring your dd's autoantibodies to see if they rise and therefore need high dose ivig to stop the production of these antibodies? That's what we intend to do after this next infusion.

 

Hi all,

 

It was a rough winter (thus the reason for falling off the face of the earth), however things seem to be improving. We have continued with monthly IVIG infusions (1.5 g/kg for the first infusion and .75 g/kg thereafter for past year and a half). For about a year, tics were 99% gone, she was sleeping well, rages and mood dysregulation 100% improved, grades went from Cs and Ds to straight As and school bumped her up a grade in one of her subjects. The only thing it did not help was OCD issues, which seemed to improve significantly with 3x daily dose of ibuprofin.

 

DD14 went downhill in late November and although she got a bit better she never got back to where she was in the previous year. We tried doubling her Pen VK dose and also tried high doses of Amox and Augmentin, but that made her worse (increased yeast levels even after doubling probiotics). Although she came in contact with a lot of colds, flu, and strep, she remained asymptomatic throughout the winter. Never got sick. ASO and AntiDNASE B levels have been relatively low since starting IVIG. Prior to beginning, her levels were in the 3000 range. She did get one skin infection after another this winter - toenail, stye, then toenail again. Of course, had to take into consideration normal early teen and hormone issues...

 

After reading comments on the forum and talking with Diana over the months I decided to push for a higher IVIG dose this month and our doctor agreed. So we just did 1.g g/kg on Wednesday. I have always wondered if the reason for my daughter's success in the first year was because of the high dose in the first infusion or due to the monthly infusions. So I decided we should test it. We're going to take a 3-month break from the infusions to see what happens. We took one break after the third infusion and about 50% of her symptoms came back. So I'd like to test it again and give her antibodies time to settle down. My daughter told me over a week ago that she did not feel the ibuprofin was working so we decided to stop that as well and see if it gets any worse. She says no, so we will stay off the ibuprofin.

 

It's only been two days but I already see improvement. Hopefully I will have more news to report back soon. In the meantime we have an appointment with Dr. L next month to see if she recommends pheresis or PEX. If she does do pheresis I want to be sure we follow it up with another high-dose infusion. However, it would be great if we could do the infusions less often.

 

Although I have been gone for a few months, I have been reading. It's a great forum and I have referred many parents to it. We have been living with PANDAS for 11 years now and I can tell you without question, it has been by far much more difficult of a road to travel than living with ASD!

 

Best to all,

Nancy

[NancyD]

Thanks Vickie! Hope you're doing well...we'll have to catch up with one another one of these evenings.

 

Nevergiveup, we check my daughter's IGG levels every other month. They used to be low but they are now on the high side. Let us know what you see.

 

Nancy

Edited March 20, 2010 by NancyD

[EAMom]

good to hear from you Nancy! Do keep us updated.

Edited March 21, 2010 by EAMom