Saving Sammy

[momaine]

I leant out my books but could not remember how long his full recovery took?

 

Anyone?

 

Angela

[faith]

Not positive, but I think once they found the right abx and dose, he remained on it for four years. From onset at age 11, I'm guessing it was about a year before they figured out the right treatment and abx. From what I skimmed, it looked like he got better pretty fast, but did have some setbacks when they tried to reduce the dose. once they realized he was better on the high dose, he made gains. he did also use a couple of meds tho, which were weaned, but he remained on strattera.

[MomWithOCDSon]

I double-checked with Beth Maloney on this topic recently so I would have some in-the-trenches information for our pediatrician. Here's her response:

 

In a nutshell, Sammy was on Augmentin XR at 2000 mg for a full year because every time we tried to lower the dose he had behaviors. Yes, primarily the behaviors are the clue. After a year, he was able to go to 1000 mg (the Fragile Balance). He stayed there for three more years. Then he went to 500 for three months, Then off entirely but back on at 2000 mg for two weeks when exposed to strep. I can't wait to hear the results...remember be patient. It takes a looooooong time and your son has been sicker for longer than mine.

[momaine]

I double-checked with Beth Maloney on this topic recently so I would have some in-the-trenches information for our pediatrician. Here's her response:

 

In a nutshell, Sammy was on Augmentin XR at 2000 mg for a full year because every time we tried to lower the dose he had behaviors. Yes, primarily the behaviors are the clue. After a year, he was able to go to 1000 mg (the Fragile Balance). He stayed there for three more years. Then he went to 500 for three months, Then off entirely but back on at 2000 mg for two weeks when exposed to strep. I can't wait to hear the results...remember be patient. It takes a looooooong time and your son has been sicker for longer than mine.

 

 

So, do you know how long it took him to get back to normal after they figured out it took 2000mg of Augmentin xr? Did it take the whole year?

[MomWithOCDSon]

I double-checked with Beth Maloney on this topic recently so I would have some in-the-trenches information for our pediatrician. Here's her response:

 

In a nutshell, Sammy was on Augmentin XR at 2000 mg for a full year because every time we tried to lower the dose he had behaviors. Yes, primarily the behaviors are the clue. After a year, he was able to go to 1000 mg (the Fragile Balance). He stayed there for three more years. Then he went to 500 for three months, Then off entirely but back on at 2000 mg for two weeks when exposed to strep. I can't wait to hear the results...remember be patient. It takes a looooooong time and your son has been sicker for longer than mine.

 

 

So, do you know how long it took him to get back to normal after they figured out it took 2000mg of Augmentin xr? Did it take the whole year?

 

I think it was a year plus, honestly. Because initially when they would step down a dosage, Sammy would decompensate with some returning behaviors and they would have to hold on tight and soldier on while he adjusted to the new dosage. I remember in the book Beth making the comment, toward the end of his "recovery" that they lowered the abx dosage again and even though it was tough "Sammy was determined" to make the lower dosage work. I really don't know what to say about that because we haven't come to that part of recovery yet, and everything I'm hearing about PANDAS behaviors is that they are, by and large, uncontrollable in terms of sheer will.

 

Yet, what I know of OCD behaviors via my son and thus the way I interpret some of Beth's documentation of Sammy's journey is that some of the behaviors and anxiety over the behaviors and trying to bust past them, back to his former life, had become somewhat "learned," and he needed his will, therapeutic help, etc. to dispense with those coping behaviors even after the abx had done most of the job with respect to healing his brain.

[szcasey]

Hi Angela,

 

I found Beth Maloney very responsive, sweet and willing to help. I asked many questions (including one similar to yours). I asked about Sammy's abx and if he was treated with steriods and here's her response:

 

"Total of 4 yrs on Augmentin. 3 yrs at 2000 mg XR. Three more months at 1000 mg. Three months at 500 mg. Knew we could wean when we'd reduce ans symptoms didn't return No steroids."

 

Again, she's very eager to help... If you want to get in touch with her, go to www.savingsammy.net and send her an email. She is absolutely amazing. Additionally, she has a public profile on FB, which includes (among other helpful info) a list of MDs, etc., by state who treat PANDAS.

 

Best,

 

Sarah

[momaine]

Hi Angela,

 

I found Beth Maloney very responsive, sweet and willing to help. I asked many questions (including one similar to yours). I asked about Sammy's abx and if he was treated with steriods and here's her response:

 

"Total of 4 yrs on Augmentin. 3 yrs at 2000 mg XR. Three more months at 1000 mg. Three months at 500 mg. Knew we could wean when we'd reduce ans symptoms didn't return No steroids."

 

Again, she's very eager to help... If you want to get in touch with her, go to www.savingsammy.net and send her an email. She is absolutely amazing. Additionally, she has a public profile on FB, which includes (among other helpful info) a list of MDs, etc., by state who treat PANDAS.

 

Best,

 

Sarah

 

 

Thanks Sarah,

I had emailed her before but I didn't want to bother her if somone here knew the answer. I did end up emailing her though and she said it was 9 months from the time he began the 2000mg of Augmentin before she would say he was back to normal. She said it was 2 months after being on that dose before he ate pancakes upstairs.

 

So, I guess the lesson is, it takes time. But these kids CAN heal and get back to baseline. Tough day for my dd here but it had its good points. She hasn't worn jeans in quite some time becasue they are tight and cause her more dressing issues. Today she had a good morning and thought she could tackle the jeans alone. She went upstairs, which seh doesn't do often because stairs are hard and tried to get dressed alone. She failed and beat herself up miserably. =( But after a good cry she recovered fairly quickly and had an ok rest of the day.

 

Wish she didn't have to struggle so much just to get through the day. =(

 

Off to snuggle with her on the couch till she is asleep. Night.

 

PS, at least she usually lets me touch her now...she didn't used to be able to bear it.