Saw new ped yesterday - He gets PANDAS!

[mama2alex]

We met with a new pediatrician yesterday and he has several other PANDAS patients. He seemed to get it, in that my son's terrible behavior during the appointment didn't phase him at all, nor the fact that he was too afraid to go right across the hall to the bathroom by himself (he's 9). He was also just very kind and seemed very sympathetic to the fact that PANDAS parents can't wait for the research and we have to do some experimenting in order to get our children well.

 

I asked about doing high dose Augmentin. He was hesitant because he said there's a risk of something called clostridium dificile, which is a toxic bacteria in the gut that can get out of control on Augmentin. If that happens, you have to go after it with another antibiotic, and once it happens you are more susceptible to it in the future. He also said there's a risk of pseudo tumor cerebrum, which I think is swelling in the brain. That resolves when you go off the antibiotics.

 

Has anyone else heard of these? Anyone know how much of risk these are?

 

All this scared me a little, so I didn't push to try the Augmentin for now. He did agree to up our Zithromax to 750mg every other day. He felt this was safer than high dose Augmentin.

 

Someone else here posted that they were doing this dose of Zith, but I couldn't find the post or remember who posted. I'd love to compare notes.

 

We'll start this today and I'll post our (hopefully great ) results at a later date.

[mom md]

When I asked the pediatric infectious disease doctor about Augmentin she had the same response. She felt you were possibly setting yourself up for another set of problems. I think this was what she was reffering to. I think azithromycin is a great choice because it is immune modulating too. I am so glad you found a pediatrician who is willing to help!

[peglem]

Wow, how exciting to see somebody who gets it! WhooooooHoooooo for you!

[EAMom]

Hi! would you IM me (or post) his name? I'm also in Northern Ca and I'd be nice to know of another doc (just in case). Is it Frederick A. Lloyd (I think SFmom also saw him) ?

 

Thanks!

 

PS you could also add him to this thread if you want http://www.latitudes.org/forums/index.php?showtopic=5023

[ShaesMom]

That's great news! I have heard of C. Dif but don't know anything about it.

[lismom]

We met with a new pediatrician yesterday and he has several other PANDAS patients. He seemed to get it, in that my son's terrible behavior during the appointment didn't phase him at all, nor the fact that he was too afraid to go right across the hall to the bathroom by himself (he's 9). He was also just very kind and seemed very sympathetic to the fact that PANDAS parents can't wait for the research and we have to do some experimenting in order to get our children well.

 

I asked about doing high dose Augmentin. He was hesitant because he said there's a risk of something called clostridium dificile, which is a toxic bacteria in the gut that can get out of control on Augmentin. If that happens, you have to go after it with another antibiotic, and once it happens you are more susceptible to it in the future. He also said there's a risk of pseudo tumor cerebrum, which I think is swelling in the brain. That resolves when you go off the antibiotics.

 

Has anyone else heard of these? Anyone know how much of risk these are?

 

All this scared me a little, so I didn't push to try the Augmentin for now. He did agree to up our Zithromax to 750mg every other day. He felt this was safer than high dose Augmentin.

 

Someone else here posted that they were doing this dose of Zith, but I couldn't find the post or remember who posted. I'd love to compare notes.

 

We'll start this today and I'll post our (hopefully great ) results at a later date.

 

 

Hi I think you're refering to us, we are doing 750mg every other day. I decided to do this because of my sons issues last go round with diarrhea. So far so good. We are month 3 on Zith and just over 2 weeks on the 750mg dose. It was a little lower before and wasn't seeing the results we had after 2 months on lower before. He just got the flu and days before I could see tics increasing a little. I decided to go with 1000mg every other for the next two weeks as an experiment to see if the tics get even better. Before the flu I would say we were back to around 90% better. Kathy

[sf_mom]

It is Fredrick A Lloyd at PAMF.. Palo Alto Location. Also seems to know Margo well.

 

Hi! would you IM me (or post) his name? I'm also in Northern Ca and I'd be nice to know of another doc (just in case). Is it Frederick A. Lloyd (I think SFmom also saw him) ?

 

Thanks!

 

PS you could also add him to this thread if you want http://www.latitudes.org/forums/index.php?showtopic=5023

[mama2alex]

Yes, thanks SFMom, it is Frederick Lloyd. And it was SFMom who gave me his name - thanks again! He said he has some other PANDAS patients (I think he said 8 or 10, but can't remember). If others have seen him, would love to hear your experiences (you can PM me), but our first impression was definitely good.

 

I gave him my copy of "Saving Sammy." He said he'd heard about it, but hadn't read it yet. My goal is for him to learn more about the experience of PANDAS, as I think this is what makes doctors more committed to helping.

 

 

 

It is Fredrick A Lloyd at PAMF.. Palo Alto Location. Also seems to know Margo well.

 

Hi! would you IM me (or post) his name? I'm also in Northern Ca and I'd be nice to know of another doc (just in case). Is it Frederick A. Lloyd (I think SFmom also saw him) ?

 

Thanks!

 

PS you could also add him to this thread if you want http://www.latitudes.org/forums/index.php?showtopic=5023

[lss]

We met with a new pediatrician yesterday and he has several other PANDAS patients. He seemed to get it, in that my son's terrible behavior during the appointment didn't phase him at all, nor the fact that he was too afraid to go right across the hall to the bathroom by himself (he's 9). He was also just very kind and seemed very sympathetic to the fact that PANDAS parents can't wait for the research and we have to do some experimenting in order to get our children well.

 

I asked about doing high dose Augmentin. He was hesitant because he said there's a risk of something called clostridium dificile, which is a toxic bacteria in the gut that can get out of control on Augmentin. If that happens, you have to go after it with another antibiotic, and once it happens you are more susceptible to it in the future. He also said there's a risk of pseudo tumor cerebrum, which I think is swelling in the brain. That resolves when you go off the antibiotics.

 

Has anyone else heard of these? Anyone know how much of risk these are?

 

All this scared me a little, so I didn't push to try the Augmentin for now. He did agree to up our Zithromax to 750mg every other day. He felt this was safer than high dose Augmentin.

 

Someone else here posted that they were doing this dose of Zith, but I couldn't find the post or remember who posted. I'd love to compare notes.

 

We'll start this today and I'll post our (hopefully great ) results at a later date.

 

 

Mama2alex,

 

So glad that you have found help for your son. You say your son is 9 yrs old, can you tell me what he weighs? Curious as to the 750 mgs.

 

Would you mind posting the name of the doctor, as it might help someone else on the board.

 

Linda

[mama2alex]

Linda,

 

He's 60 lbs. The doctor is Frederick Lloyd at Palo Alto Medical Foundation in Palo Alto, CA. I will post it on the docs thread soon.

 

I promise to post if I see any changes with this increased dose.

 

Mama2alex,

 

So glad that you have found help for your son. You say your son is 9 yrs old, can you tell me what he weighs? Curious as to the 750 mgs.

 

Would you mind posting the name of the doctor, as it might help someone else on the board.

 

Linda

[lss]

Linda,

 

He's 60 lbs. The doctor is Frederick Lloyd at Palo Alto Medical Foundation in Palo Alto, CA. I will post it on the docs thread soon.

 

I promise to post if I see any changes with this increased dose.

 

Mama2alex,

 

So glad that you have found help for your son. You say your son is 9 yrs old, can you tell me what he weighs? Curious as to the 750 mgs.

 

Would you mind posting the name of the doctor, as it might help someone else on the board.

 

Linda

 

 

Well then this makes me want to raise my son's dose of 250 to 750 or 1000 of zith to see if it makes a difference with the tics. Would appreciate any and all opinions.

 

Linda

[mama2alex]

Just wanted to clarify that we are going from 250mg daily to 750mg EVERY OTHER DAY. This equals out to 375mg per day, but with a day to rest in between.

 

The doctor also said that the higher you go, the greater the risk of severe side effects such as renal failure, heart arythmia, and some other scary things he outlined for me.

 

We're going to try it out for a few weeks and if I don't see any positive changes, we'll go back down to 250mg.

 

I think the doctor we're working with is somewhat conservative, but thankfully also willing to take some chances because he realizes what we're up against.

 

Linda,

 

He's 60 lbs. The doctor is Frederick Lloyd at Palo Alto Medical Foundation in Palo Alto, CA. I will post it on the docs thread soon.

 

I promise to post if I see any changes with this increased dose.

 

Mama2alex,

 

So glad that you have found help for your son. You say your son is 9 yrs old, can you tell me what he weighs? Curious as to the 750 mgs.

 

Would you mind posting the name of the doctor, as it might help someone else on the board.

 

Linda

 

 

Well then this makes me want to raise my son's dose of 250 to 750 or 1000 of zith to see if it makes a difference with the tics. Would appreciate any and all opinions.

 

Linda

[TiredMom]

Yes, thanks SFMom, it is Frederick Lloyd. And it was SFMom who gave me his name - thanks again! He said he has some other PANDAS patients (I think he said 8 or 10, but can't remember). If others have seen him, would love to hear your experiences (you can PM me), but our first impression was definitely good.

 

I live in Sunnyvale, and in December I was trying yet another attempt to find a local Ped with PANDAS experience. I was referred to Dr. Lloyd. He called me at home. He spent 30 minutes talking to me but was clear he didn't want another PANDAS patient at that time "I don't have anything to offer you" is exactly what he said. My daughter was on 250 mg Azith daily (still is) at the time, and he spent most of our time talking telling me how dangerous that was and how he would only prescribe penicillan. Also, he said that he leaned heavily on titer numbers, which my dd's have always been low. Of course, I did my best to explain that not all PANDAS kids had high titers, and that Azith was helping many PANDAS kids, had anti-inflamatory and immune system modulating properties, was recommended by a Stanford specialist as the "Rheumatic Fever" dose, etc, etc... I felt very disappointed after talking to him. This scene has been replayed with many local Drs., even when I print out the research and hand it to them. One told me "I don't have the time to read this". Sorry for venting - I'm sure most of us are struggling bad feeling towards the medical community that has let these kids down for so long. I'm glad Dr. Lloyd seems to have come around - we need him on the team. God bless all the Drs with the courage and ethics to treat these kids!

[sf_mom]

Peggy, You know my feelings... keep politely hitting up the same Dr.'s that seem open 'to PANDAS' and eventually they'll have enough cases with improvements that they can't deny treatment. Dr. Lloyd has been so responsive with my younger son's tests. He called within 24 hours with just some of the results because he didn't want me to worry over the weekend. Its unfortunate our son didn't get treatment locally but both Dr. Lloyd and Dr. Lewis saw his improvements in 5 weeks and Dr. Lewis said he would treat if he had a relapse. I drag the video tape of our son with me to every Dr. appointment and he is TICing away on that tape. They are all nodding their heads yes, we get it, he seems fine now.

 

I sure hope, pray, hope, pray.... it might mean some additional help for some other child by one of these Dr.s!!!

 

 

 

Yes, thanks SFMom, it is Frederick Lloyd. And it was SFMom who gave me his name - thanks again! He said he has some other PANDAS patients (I think he said 8 or 10, but can't remember). If others have seen him, would love to hear your experiences (you can PM me), but our first impression was definitely good.

 

I live in Sunnyvale, and in December I was trying yet another attempt to find a local Ped with PANDAS experience. I was referred to Dr. Lloyd. He called me at home. He spent 30 minutes talking to me but was clear he didn't want another PANDAS patient at that time "I don't have anything to offer you" is exactly what he said. My daughter was on 250 mg Azith daily (still is) at the time, and he spent most of our time talking telling me how dangerous that was and how he would only prescribe penicillan. Also, he said that he leaned heavily on titer numbers, which my dd's have always been low. Of course, I did my best to explain that not all PANDAS kids had high titers, and that Azith was helping many PANDAS kids, had anti-inflamatory and immune system modulating properties, was recommended by a Stanford specialist as the "Rheumatic Fever" dose, etc, etc... I felt very disappointed after talking to him. This scene has been replayed with many local Drs., even when I print out the research and hand it to them. One told me "I don't have the time to read this". Sorry for venting - I'm sure most of us are struggling bad feeling towards the medical community that has let these kids down for so long. I'm glad Dr. Lloyd seems to have come around - we need him on the team. God bless all the Drs with the courage and ethics to treat these kids!

[mama2alex]

Wow, I'm so sorry you had this experience! I think he has seen more PANDAS kids since then (he told me he has 8 or 10 of them, I think), so I think he's learned more about it out of necessity. Also, maybe Dr. T has talked to him - he said he knows her and trusts her judgement. When I showed him our Cunningham results, he mentioned that he has another family who are expecting their Cunningham results soon. So I do think he's at least starting to become aware that there are things to look for other than ASO and Anti-DNase B titers.

 

I definitely understand the frustration with doctors who don't believe, don't get it, or just don't seem to care. I was very nervous before the appointment, not knowing how he would respond. I know I wouldn't handle "I don't have anything to offer you." very well.

 

Dr. Lloyd strikes me as very cautious and conservative, but I do think he's starting to "get it." On the phone with him today, I referred to my son as "suffering" and he said he definitely agrees with that characterization. He genuinely seems to want to help and I think he now realizes that a few risks have to be taken for these kids since all the science isn't there yet.

 

To help him understand our situation, I wrote out a letter describing what happened this summer (also so I wouldn't have to retell the whole story in front of my son), and gave him a list (over a page long) of my son's symptoms since this started in June. I wish we had a video, like SFMom, but my son doesn't have tics, and we never thought to take a video last summer, when things were at their worst. I do think the list made an impression though! I also gave him a copy of the "Saving Sammy" book, and he said he would read it.

 

My hope is that he will learn from our experience, and be able to help my son and other kids in the future.

 

I live in Sunnyvale, and in December I was trying yet another attempt to find a local Ped with PANDAS experience. I was referred to Dr. Lloyd. He called me at home. He spent 30 minutes talking to me but was clear he didn't want another PANDAS patient at that time "I don't have anything to offer you" is exactly what he said. My daughter was on 250 mg Azith daily (still is) at the time, and he spent most of our time talking telling me how dangerous that was and how he would only prescribe penicillan. Also, he said that he leaned heavily on titer numbers, which my dd's have always been low. Of course, I did my best to explain that not all PANDAS kids had high titers, and that Azith was helping many PANDAS kids, had anti-inflamatory and immune system modulating properties, was recommended by a Stanford specialist as the "Rheumatic Fever" dose, etc, etc... I felt very disappointed after talking to him. This scene has been replayed with many local Drs., even when I print out the research and hand it to them. One told me "I don't have the time to read this". Sorry for venting - I'm sure most of us are struggling bad feeling towards the medical community that has let these kids down for so long. I'm glad Dr. Lloyd seems to have come around - we need him on the team. God bless all the Drs with the courage and ethics to treat these kids!