Update on My dd who is on Augmentin, 7 days in

[Guest Angela Shaw]

I saw my dd's family doctor again today. I asked her how far she was willing to go outside of typical protocol to treat this as a PANDAS case, as I need to get a specialist on board if she isn’t willing to treat this aggressively. She has been wonderful so far and is working with me. She has agreed to consult with Dr. Geller in Boston if we reach any road blocks. For now we’ve postponed going there ourselves. She has upped Lilly’s Augmentin dose to the maximum level of 2000mg per day. This is the dose that worked for Sammy in the book Saving Sammy. (though he was on the extended release and she is not, not sure how that plays into things?)

 

Dd has been on 1000mg of Augmentin per day for 7 days. Though I'm not sure if it is due to the Augmentin, the continued use of Celexa which becomes more effective over time, or just the Advil, in the last few days her mood has improved (3 days no crying) and she has been able to tackle brushing her teeth. Yesterday and today she has been able to play computer games for an extended period of time. This is something that has been impossible for months. There have also been other little improvements like being able to her plate to the kitchen after she eats. It sounds small but she’s been unable to do this for weeks. This evening however, proved to be difficult. Difficulty getting ready for her riding lesson and difficulty with anything touching her as well as many intrusive thoughts about things she said. I’m told it’s not a smooth road to recovery but a road filled with ups and downs, but hopefully she’ll begin experience more up days than down as time goes on.

 

I also spoke with Dr. Trifilletti today. He just opened a new practice in NJ and he does not have a long waiting list so if we need to we have that as a backup plan too without a long wait to get in and without the big price tag.

 

I’m more hopeful than ever.

 

Angela

[EAMom]

Hi Angela,

Would you be able to get Augmentin XR (the same one sammy was on)? There was another post on this...2000mg of regular augmentin might have too much clavulonic acid in it. Also, augmentin xr has time release amoxicillin in it, I don't know if that makes a difference

[EAMom]

Here is the thread http://www.latitudes.org/forums/index.php?...art=#entry43982

[Suzan]

I am so happy for you! I know all too well how much these good days mean and how much hope they offer. I hope you continue to see improvement. I just made an appt with Dr. T and we will be going the first week in December. It's a long trip for us but I am looking forward to it. Now that I am seeing dd respond to the zithromax, I want to be sure we are doing the right thing and Dr. T may be able to help me with my local docs once he sees the girls as patients.

 

The ups and downs are hard, especially after getting a glimpse of how good things could be. But I know you will hang in there and continue to get her well.

 

Susan

[Guest Angela Shaw]

Here is the thread http://www.latitudes.org/forums/index.php?...art=#entry43982

 

Thank you EAMom. I don't know enough about it to know, but I've fired off an email to our doctor asking that question. I have not filled the prescription yet adn I will wait. What does the high dose of Clavonic acid do to a person, do you know? I did mention to our doctor that Sammy was on the XR. She said it was more expensive and that the drug stores don't always carry it. But we have insurance and the drugstore can order it, I'm sure.

 

Angela

[Guest Angela Shaw]

I am so happy for you! I know all too well how much these good days mean and how much hope they offer. I hope you continue to see improvement. I just made an appt with Dr. T and we will be going the first week in December. It's a long trip for us but I am looking forward to it. Now that I am seeing dd respond to the zithromax, I want to be sure we are doing the right thing and Dr. T may be able to help me with my local docs once he sees the girls as patients.

 

The ups and downs are hard, especially after getting a glimpse of how good things could be. But I know you will hang in there and continue to get her well.

 

Susan

 

Where are you driving from? Dr. Trifilletti told me that another family from Maine was going down soon.

Angela

[Suzan]

Where are you driving from? Dr. Trifilletti told me that another family from Maine was going down soon.

Angela

 

We are coming up from North Carolina. I think he is starting to have people come from all over! We plan on taking the train and just trying to make a mini vacation out of it.

 

Susan

[Guest Angela Shaw]

Hi Angela,

Would you be able to get Augmentin XR (the same one sammy was on)? There was another post on this...2000mg of regular augmentin might have too much clavulonic acid in it. Also, augmentin xr has time release amoxicillin in it, I don't know if that makes a difference

 

I emailed our doctor last night and told her about the concerns of too much clavulonic acid in the regular Augmentin at the 2000mg dose. I just got a call back from her office that she just called in a prescription for the XR. So, she must have agreed upon reviewing the evidence. I'll pick it up later and we'll start it tongiht. I'll keep you posted. Thank you so much EAMom for bringing this to my attention. I always hate to rock the boat and was just happy that she upped the dose to 2000mg. I didn't realize there was a difference in the Clavulonic acid.

 

Angela