Great News from Central Coast, CA

[Phasmid]

For the first time, we have a LOCAL pediatrician who is a "believer"... yay!!! He has never known a PANDAS case, and this is the first time we have seen him (for just a check as he got a high fever today- flu virus probably) after our PANDAS doc called to fill him in (he was nice enough to call for me- I didn't have the energy or guts to start from square one with a new pediatrician). He seemed shocked that anyone with this condition would have trouble finding treatment!!! (He even asked who is former ped. was- I think he wanted to "rough 'em up a bit). I kind of fell apart and started laughing! I couldn't believe it. I then told him about all of you who can't find help, and have no support and who travel to the ends of earth for help. He was excited to learn that my son finally had an infusion, and then got REALLY excited when I told him how high his fever went today! This is the first time that he has been able to respond with a fever for.. I can't remember when, maybe four years. He said that was due to the IVIG. He then said we could even do the infusions here at our hospital- he does all the time. Also recommended that I keep the appt. with the neurologist who has "a lot of experience with chronic infection" stuff.

 

We have a long way to go, but knowing we have care locally is such a gigantic relief. Oh... something interesting today with the fever; his reading ocd (stops and re-reads) has cleared up after one dose IVIG. BUT... today, when his fever reached 103, he was reading and all of a sudden he started repeating aloud and stuttering. I almost threw up, but instead, ran in some Advil. I think it helped, because 30 minutes later he was reading normally. He didn't remember it.

[peglem]

For the first time, we have a LOCAL pediatrician who is a "believer"... yay!!! He has never known a PANDAS case, and this is the first time we have seen him (for just a check as he got a high fever today- flu virus probably) after our PANDAS doc called to fill him in (he was nice enough to call for me- I didn't have the energy or guts to start from square one with a new pediatrician). He seemed shocked that anyone with this condition would have trouble finding treatment!!! (He even asked who is former ped. was- I think he wanted to "rough 'em up a bit). I kind of fell apart and started laughing! I couldn't believe it. I then told him about all of you who can't find help, and have no support and who travel to the ends of earth for help. He was excited to learn that my son finally had an infusion, and then got REALLY excited when I told him how high his fever went today! This is the first time that he has been able to respond with a fever for.. I can't remember when, maybe four years. He said that was due to the IVIG. He then said we could even do the infusions here at our hospital- he does all the time. Also recommended that I keep the appt. with the neurologist who has "a lot of experience with chronic infection" stuff.

 

We have a long way to go, but knowing we have care locally is such a gigantic relief. Oh... something interesting today with the fever; his reading ocd (stops and re-reads) has cleared up after one dose IVIG. BUT... today, when his fever reached 103, he was reading and all of a sudden he started repeating aloud and stuttering. I almost threw up, but instead, ran in some Advil. I think it helped, because 30 minutes later he was reading normally. He didn't remember it.

Hallelujah! I know how great it feels to run into one of these rare doctors who are more concerned about helping the patient than medical politics. Congratulations!

[browneyesmom]

YESSSSSSSSSS!!!!!!!!!!!!!!! Amen sister; I am so happy for you!!!!!

[kimballot]

Phasmid- I found a compassionate pediatrician who was open to PANDAS and open to learning about 4 months ago -through another Mom of a child with PANDAS. What a difference it has made to have that support. Even though our PANDAS doc makes most of the decisions, I know if we get into trouble I have someone here in town to turn to.

 

I am so happy for you!