CAM scores in today

[kcdc3]

I received my dd(10)'s CAM scores today - 163. I am happy to have confirmation that I have not been imagining this for the past 4 years, however, am sad to know the road that is ahead of me.

This past week dd was exposed to the flu via my son. I called her pediatrician to beg for Tamiflu so she would not have to go through full blown flu, because we all know what viruses like this do to our PANDAS kids. He said "No, only if she has an underlying medical condition." Excuse me? SHE DOES!!!! We were not able to get the Tamiflu for her, and she ended up with full blown flu. Even now that she is recovered, her grunting tics have increased from occasional to CONSTANT. There is not a waking moment that she is not grunting.

I have read on this forum about Dr. L and Dr. K......I live in NC and will have to make a drive no matter what. Do any of you have any profound opinions one way or the other? I don't necessarily want to go right for the PEX, as we have not even tried a full course of antibiotics or steriods yet (I've been to so many doctors here - none of which will give me anything).

I also have not gotten the other results back from Cunningham yet. Only the Cam scores. Does anyone know if the Cam score is the most important score out of the whole batch?

Another scary thing is that dd is going through puberty - has not had her period yet, but other things are happening. I feel like I'm in a race against time.

Kim

[Kayanne]

Is there a shortage of Tamiflu, or does it have risks involved? I have never heard that it should be reserved for people with underlying medical conditions...only that most of the time it is useless because it has not been given soon enough...antivirals have a narrow window in which they can inhibit the virus.

 

If someone else knows more about this, please let me know.

 

I'm really sorry that you are going thru this again. You are on the right track by having your daughter's CAM score now.

 

You may be closer to Dr. L--She is in the DC area (Dr. K. is in Chicago) Also, she doesn't jump right into Plasmapheresis or IVIG, I think she believes as you do that a course of steroids should be tried first. However, if it is called for (cronic history, or very high CAM numbers) she will suggest that you go right for the big guns.

 

It seems to me that Dr. L's priority with my daughter was to address her brain inflammation, and to protect her from strep...she was reluctant to put her on full strength antibiotics because she had just had a negative throat culture, after testing positive with a rapid strep test four times prior-so we know it was in her throat. My daughter's last course of antibiotics was clindamycin 300mg 3X/day for 10 days...she was only 42 lbs at the time.

 

For our dd6 she prescribed a month long course of prednisone, and about three months worth of 100mg azith daily. During our follow-up (over the phone) she had suggested we stay on the azith as a prophylaxis, however, I wanted to put my daughter on a narrow spectrum antibiotic--pen v k. So now dd6 is on 200mg of pen vk 2/x day (I live in PA -- four hours west of me there is a strain of strep that is resistant to zith).

 

I did express concern that by switching antibiotics, I might see an uptick in her PANDAS because of the anti-inflammatory and immune-modulating properties of azith, and she said to me that that wouldn't happen because, "you have addressed the brain inflammation."--we started the new antibiotic on Sept 11th, and have only seen the very, very minor, remaining behavior disappear.

 

I am anxiously awaiting our CAM score too...her blood was drawn last week so I am expecting it to be low, but from what Dr. Cunningham told Diana P. (it was posted on this thread: http://www.latitudes.org/forums/index.php?showtopic=5349 , I am expecting it still to be in range because it takes approx. a full year to return to normal.

 

I don't have any experience with Dr. K, but from reading this forum, I have gathered that his typical protocol is a 5 day steroid burst to determine if your child will respond to IVIG, and if there is improvement with the steroid, then he moves forward with IVIG. He probably has the most experience treating PANDAS cases.

 

I believe that Dr. K states on his website that IVIG stops being effective by a certain age...but if want to double check that his website is www.webpediatrics.com.

 

I have read someone on this forum say that Dr. L has treated teenagers with Plasmapheresis...so if your daughter's age is a concern, then Dr. L may be your best option.

 

I guess this was a long way of telling you that Dr. L will address the concerns that you mentioned.

 

Good luck...I hope this helps.

 

~Karen

[Megs_Mom]

I received my dd(10)'s CAM scores today - 163. I am happy to have confirmation that I have not been imagining this for the past 4 years, however, am sad to know the road that is ahead of me.

This past week dd was exposed to the flu via my son. I called her pediatrician to beg for Tamiflu so she would not have to go through full blown flu, because we all know what viruses like this do to our PANDAS kids. He said "No, only if she has an underlying medical condition." Excuse me? SHE DOES!!!! We were not able to get the Tamiflu for her, and she ended up with full blown flu. Even now that she is recovered, her grunting tics have increased from occasional to CONSTANT. There is not a waking moment that she is not grunting.

I have read on this forum about Dr. L and Dr. K......I live in NC and will have to make a drive no matter what. Do any of you have any profound opinions one way or the other? I don't necessarily want to go right for the PEX, as we have not even tried a full course of antibiotics or steriods yet (I've been to so many doctors here - none of which will give me anything).

I also have not gotten the other results back from Cunningham yet. Only the Cam scores. Does anyone know if the Cam score is the most important score out of the whole batch?

Another scary thing is that dd is going through puberty - has not had her period yet, but other things are happening. I feel like I'm in a race against time.

Kim

 

Hey - another N Carolinian! There are quite a few of us here. What part of the state do you live in? We are in the Charlotte area. We are losing our Neurologist here, but a few of us are exploring another office - and there is a good immunologist here. Dr. L is also asking a Cary Neurologist if he is willing to work with us, so that may be another option. Let us know approx where you are. We love Dr. Latimer, so I can't recommend her enough.

[kcdc3]

Hey - another N Carolinian! There are quite a few of us here. What part of the state do you live in? We are in the Charlotte area. We are losing our Neurologist here, but a few of us are exploring another office - and there is a good immunologist here. Dr. L is also asking a Cary Neurologist if he is willing to work with us, so that may be another option. Let us know approx where you are. We love Dr. Latimer, so I can't recommend her enough.

 

We live in the Raleigh area - specifically the sandhills....right between Raleigh and Pinehurst. Please let me know about the Cary Neurologist. That would be great to be able to only have to go 30 minutes for treatment. When you say that she is asking if he is willing to work with you - work with you to do what? Medication management? I would be happy to just find someone who believes me and puts weight on the Cunningham scores.!!

[kim]

I think there is a study out there showing where Tflu shortened the duration of flu symptoms by 1/2 a day. Also, they are supposedly refraining from using it, to keep the virus from becoming resistant (some docs, but some give it at first sign of sniffle supposedly). I'm not sure it had block buster capabilities to begin with. You can probably find a lot of that info fairly quickly. If you persue it, please share what you find.

[ajcire]

I think there is a study out there showing where Tflu shortened the duration of flu symptoms by 1/2 a day. Also, they are supposedly refraining from using it, to keep the virus from becoming resistant (some docs, but some give it at first sign of sniffle supposedly). I'm not sure it had block buster capabilities to begin with. You can probably find a lot of that info fairly quickly. If you persue it, please share what you find.

 

 

So far I have had no need for it here but my ped had mentioned that tamilfu should only be used in kids when really necessary because sometimes there could be big side effects... he said he only uses it if he thinks the benefits will outweight the possible side effects. He never said what the issues were though.

[kcdc3]

I think there is a study out there showing where Tflu shortened the duration of flu symptoms by 1/2 a day. Also, they are supposedly refraining from using it, to keep the virus from becoming resistant (some docs, but some give it at first sign of sniffle supposedly). I'm not sure it had block buster capabilities to begin with. You can probably find a lot of that info fairly quickly. If you persue it, please share what you find.

 

 

So far I have had no need for it here but my ped had mentioned that tamilfu should only be used in kids when really necessary because sometimes there could be big side effects... he said he only uses it if he thinks the benefits will outweight the possible side effects. He never said what the issues were though.

 

The prescribed it to my son 1st day of symptoms. He was better within 24 hours. I tried to get it for my daughter, but since she was under the care of a different doctor, he would not give it to her. She came down with it a day later, and the urgent care doc gave it to her. She was also better within 24 hours, but the grunting tics had already started before the Tflu. They gave it to me as precaution and I never got flu.