Need help making sense of saw-tooth effect

[lismom]

Need reassurance on the saw-tooth recovery. Daily, weekly changes normal. Kathy

[browneyesmom]

My daughter is not fully recovered yet, but had first IVIg around Christmas and we definitely are seeing plenty of wax/wane, sawtooth recovery. It is the reason I made the PANDAS Awareness Ribbon with sawtooth edges... because this condition is so episodic... and for the effect on our children and families.

 

Hugs Kathy... they will get there as we continue advocacy for them. ♥

[kimballot]

Need reassurance on the saw-tooth recovery. Daily, weekly changes normal. Kathy

Kathy - is your son going to school? Lots of folks see setbacks with exposure to strep even when the child is on abx. I saw some with my son when he was exposed to mycoplasma. It is shorter-lived than it is when they have an infection, but it is there nonetheless. Is everyone else in the house healthy?

[lismom]

Need reassurance on the saw-tooth recovery. Daily, weekly changes normal. Kathy

Kathy - is your son going to school? Lots of folks see setbacks with exposure to strep even when the child is on abx. I saw some with my son when he was exposed to mycoplasma. It is shorter-lived than it is when they have an infection, but it is there nonetheless. Is everyone else in the house healthy?

Hey Kim, I so wanted to call and talk but I'm sick with flu. Liam did go back to school today and came home looking like he did when I started the high dose zith. This is so depressing to me. I know I shouldn't expect to much first week or so but he looked so much better yesterday. He had been home with the flu as well. Thing is he was getting over the flu and still looked so much better then today. Sometimes so impatient. Kathy

[browneyesmom]

Kathy... you and Liam have had influenza and today was his first day back at school? Poor fella & mommy... I remember when my DD11 had influenza... first few days back, she could not even make it a full day. I hope you both feel better soon!

Denise

[MomWithOCDSon]

We have been on the PANDAS healing road for over a year now and, yes, sawtooth recovery. Very much so. And it can vary. Depending on the triggers and the situation, he can have a setback daily. He can have one per week. He can go strong for weeks on end and then hit a bump in the road that'll set him back for 3 or 4 days before he seems to regain full purchase again.

 

This is tricky, unpredictable stuff, in our experience. It's the big picture that keeps us going, though. When DH and I sat down a bit over the holiday and compared notes between last Christmas and this, we were really able to see the tremendous, lasting gains. But sometimes, on a day-to-day basis, it's like the way you don't notice how tall your kid is getting because you see him everyday. It takes the "outsider" perspective . . . Aunt Mary who hasn't seen him in 6 months . . . to wake you up to how much he's grown. For us, sometimes it takes that broader, longer perspective to see past the sawtooth and fully appreciate the true expanse of the healing.

[Fixit]

We have been on the PANDAS healing road for over a year now and, yes, sawtooth recovery. Very much so. And it can vary. Depending on the triggers and the situation, he can have a setback daily. He can have one per week. He can go strong for weeks on end and then hit a bump in the road that'll set him back for 3 or 4 days before he seems to regain full purchase again.

 

This is tricky, unpredictable stuff, in our experience. It's the big picture that keeps us going, though. When DH and I sat down a bit over the holiday and compared notes between last Christmas and this, we were really able to see the tremendous, lasting gains. But sometimes, on a day-to-day basis, it's like the way you don't notice how tall your kid is getting because you see him everyday. It takes the "outsider" perspective . . . Aunt Mary who hasn't seen him in 6 months . . . to wake you up to how much he's grown. For us, sometimes it takes that broader, longer perspective to see past the sawtooth and fully appreciate the true expanse of the healing.

 

Yes..very well explained....

And even though i've been at this almost 2 years.....i still need reassurance about the sawtooth thing(to feel like you are on the right path...not wasting days or weeks with something)....is sawtooth real?..how many days apart...can it be within a single day........unfortuanatley...there is no "normal", "regular" to any of this....

[lismom]

Thanks for the responses. Sometimes when your the only one steering the boat it can get a little overwhelming at times. We have been doing this for more than 1 and 1/2 years but were only on maintenance dose. So this time I'm trying the higher dose. My son is 13 now, growing, 5'11 and 115. Huge growth spurt. I wonder if these growth spurts effect everything else going on. I'm going to test for lyme as well while we keep plugging along. Kathy