Did you see the Bonnie Hunt show?

[pixiesmommy]

Just curious about thoughts....

[Joan Pandas Mom]

I did. Beth is doing such a great job. She has help my son and me so much.

[thereishope]

They don't show Bonnie Hunt here anymore. I looked at the website and saw her suggestions for PANDAS and was suprised when it was listed that if your rapid comes back negative and you think it's worng you can get another one in 24 hours and /or get it cultured. I wanted to scream. "NO! It's not an and/or. ALWAYS get a negative cultured."

[ajcire]

Bummer.. I totally forgot to record it.

[Joan Pandas Mom]

Just curious about thoughts....

I'm new to this and not sure I am doing this correctly. My son has been on 2,000 mg augmentin for 7 weeks without any results. His ASO was 1,014, 7 weeks ago. We are having his tonsils out on Tuesday. Has anyone tried Augmentin then switched to Azithromax? If so, How do you dose it? Has anyone taken more than 7 weeks to see results with Augmentin? I just discovered my son has a slightly elevated Billirubin. I have been told that it probably doesn't mean anything.

[peglem]

I watched it here:

http://www.bonniehunt.com/

[peglem]

I took the link from that page to http://pandasfoundation.org/for-doctors.html

Interesting that the "for doctors" section has a link to an article about the mouse model study, but not the study! BUT, the linked article does mention Swedo's success with plasmapheresis and IVIG....so, okay!

[ajcire]

thanks for posting that link!

[Alex]

Hi Joan,

 

7 weeks does sound like a long time. With an ASO that high though, it may have to come way down before you start seeing some postive changes. I would think rechecking the ASO level to see if it has dropped might be a good place to start. If it is on the way down significantly then maybe stick with the Augmentin. If not, time to try azithromycin. And if that doesn't work, keep experimenting until you find an antibioitc that works. I spoke to Dr. Trifiletti a few days ago and he suggested that you keep experimenting with different antibioitcs until you find the right one. He even suggested combining different ones if necessary.

 

If the tonsils are in bad shape, I'm not sure any antibiotic is going to work until they come out. After they're out, from what I have heard, it takes some time for things to settle down before the positve changes start happening.

 

You may want to start your own thread on this one where it will get some more attention. Good luck, Alex

 

 

 

Just curious about thoughts....

I'm new to this and not sure I am doing this correctly. My son has been on 2,000 mg augmentin for 7 weeks without any results. His ASO was 1,014, 7 weeks ago. We are having his tonsils out on Tuesday. Has anyone tried Augmentin then switched to Azithromax? If so, How do you dose it? Has anyone taken more than 7 weeks to see results with Augmentin? I just discovered my son has a slightly elevated Billirubin. I have been told that it probably doesn't mean anything.

[faith]

Joan,

I have had my son on Augmentin 1000 mg. per day for a month with no results to speak of, and now we are half way thru a month of Azith 250 mgs. per day. so far not noting anything. I am going to finish to month to see, and don't know what I'll do from here. my son is 10 and 53 lbs. and has had tics as his main presentation since 3 1/2 years, with a vocal being the most prominent the past two years, and since August of this year it has been the most obvious that its ever been. he also shows other issues of ocd, sensory/irritability and some tantrumy emotional behavior. just to mention, I don't consider a day or two without seeing an issue pop up any kind of breakthru and these behaviors come and go when the opportunity presents itself, so I am careful to look at the full picture for at least a week or two. I've been dealing with wax and wane for many years, so I think I will know for sure when things have finally exited the building, if you know what I mean. For instance, right now he is working on his computer upstairs and I don't hear much vocal, but yesterday we were at a show and he was doing it constantly. just because he has quieted some for today doesn't mean he won't start again later or tomorrow, I've seen that before, so I have to look at the full picture for more than just a couple days.

 

I agree, perhaps start another thread if you want to know more, this one is not titled correctly for your inquiry. I too, am wondering if I should have seen improvement by now and don't know how long I should continue this or switch to another one, or just take him off. ...... (oops, spoke too soon, there he goes...... )

 

Faith

[Worried_Dad]

Saw it and was psyched about it!

 

Today Show has broader reach, but this whole hour-long show was devoted to OCD, so it seemed to have more impact. As a former nurse, Bonnie Hunt definitely seemed very sympathetic and did not question the reality of PANDAS at all. And seeing Sammy Maloney smiling and answering questions with so much poise - from his college dorm room, no less - gives me hope that my son can regain a happy, healthy life.

 

Let's hope the "PANDAS is real" movement continues to gain momentum, so all of our kids can benefit!!!

[Joan Pandas Mom]

Thanks for responding Alex. I wasn't sure how this worked. How do I start my own thread? We were at UCLA last week for 2 weeks. CBT has worked with him in the past so I thought it might help. We had his ASO titer checked there and it is some # above 800 still. Their lab only goes as high as 800. The norm there is under 150, where is is under 200 here in New Hampshire where we live. I'm wondering if it is still up around 1,014 or higher. Jared's pedi is willing to switch to azithromycin but he isn't sure of the dosage. He didn't know if where it is a 5 day and then stays in the system for 5 days is it on 5 days then off 5 days? Thanks again for responding. He is so sick with this.

 

Hi Joan,

 

7 weeks does sound like a long time. With an ASO that high though, it may have to come way down before you start seeing some postive changes. I would think rechecking the ASO level to see if it has dropped might be a good place to start. If it is on the way down significantly then maybe stick with the Augmentin. If not, time to try azithromycin. And if that doesn't work, keep experimenting until you find an antibioitc that works. I spoke to Dr. Trifiletti a few days ago and he suggested that you keep experimenting with different antibioitcs until you find the right one. He even suggested combining different ones if necessary.

 

If the tonsils are in bad shape, I'm not sure any antibiotic is going to work until they come out. After they're out, from what I have heard, it takes some time for things to settle down before the positve changes start happening.

 

You may want to start your own thread on this one where it will get some more attention. Good luck, Alex

 

 

 

Just curious about thoughts....

I'm new to this and not sure I am doing this correctly. My son has been on 2,000 mg augmentin for 7 weeks without any results. His ASO was 1,014, 7 weeks ago. We are having his tonsils out on Tuesday. Has anyone tried Augmentin then switched to Azithromax? If so, How do you dose it? Has anyone taken more than 7 weeks to see results with Augmentin? I just discovered my son has a slightly elevated Billirubin. I have been told that it probably doesn't mean anything.

[Joan Pandas Mom]

Hi Faith, I will try to figure out how to start another thread. I will let you know what happens. My son is 15 and has had PANDAS and OCD for the past 6 years. I didn't know to recheck his ASO titer until 2006. During 2006 we checked it twice. It was once 257 and anther time 225. I was told it wasn't elevated high enough to warrant an antibiotic. I now know that wasn't correct. I had kind of given up on the PANDAS theory because of the doctors' response to the ASO titer being only slightly elevated. 7 weeks ago a friend told me about the segment on the Today Show with Beth Maloney. I took Jared in to Pedi and that's when we found out his titer was 1,014.

 

Joan,

I have had my son on Augmentin 1000 mg. per day for a month with no results to speak of, and now we are half way thru a month of Azith 250 mgs. per day. so far not noting anything. I am going to finish to month to see, and don't know what I'll do from here. my son is 10 and 53 lbs. and has had tics as his main presentation since 3 1/2 years, with a vocal being the most prominent the past two years, and since August of this year it has been the most obvious that its ever been. he also shows other issues of ocd, sensory/irritability and some tantrumy emotional behavior. just to mention, I don't consider a day or two without seeing an issue pop up any kind of breakthru and these behaviors come and go when the opportunity presents itself, so I am careful to look at the full picture for at least a week or two. I've been dealing with wax and wane for many years, so I think I will know for sure when things have finally exited the building, if you know what I mean. For instance, right now he is working on his computer upstairs and I don't hear much vocal, but yesterday we were at a show and he was doing it constantly. just because he has quieted some for today doesn't mean he won't start again later or tomorrow, I've seen that before, so I have to look at the full picture for more than just a couple days.

 

I agree, perhaps start another thread if you want to know more, this one is not titled correctly for your inquiry. I too, am wondering if I should have seen improvement by now and don't know how long I should continue this or switch to another one, or just take him off. ...... (oops, spoke too soon, there he goes...... )

 

Faith

[smartyjones]

And seeing Sammy Maloney smiling and answering questions with so much poise - from his college dorm room, no less - gives me hope that my son can regain a happy, healthy life.

 

 

thanks for posting - i didn't see the show but saw the link. it was great that it seemed more relaxed with time and Beth had a chance to speak in a more relaxed manner to get her point across.

 

I cried through the entire original Today clip and again when watching Sammy speak now. i think what gets me the most is when he says he doesn't really remember b/c it was so long ago. i may be wrong but i think he was 1 year w/o diagnosis and then another year trying to get well. and now, even with the book, it's not really something that he thinks is a huge part of his memories of his life as traumatic or odd.

 

who was it - meg's mom? - who recently said she doesn't think her daughter remembers the bad times. of course, we do and that's hard but good to think for the kids, it may be less traumatic in the end.