Dr K call scheduled

[SarahJane]

I sent Dr. K a ridiculously long email yesterday. (I just cannot edit when it comes to this stuff!) I detailed my ds(6)'s Dec '09 strep/behaviors, Sept '10 strep/behaviors, & my suspicions of early onset due to various things that led to my sons tonsilectomy just before he was 4.5 yrs old. (No major illness/issues for 1.5 years after tonsils out...had been sick off & on for 2 years prior to that.) Dr. K replied that there's "a high degree of suspision for PANDAS diagnosis" and gave directions to set up eval. I have a phone call set for next week. We are willing to travel up to see him but set up the call first since we are out of town. (Anybody think I should just go vs. doing a call 1st?) I already have all our records to send up there since I've been doing my own medical research. He didn't tell me to run any labs tho'...think that's bad? Plus, what do you do if you get a dx, but your doctor didn't believe you? How do you get treatment? Do you go back to the person who acted like you were crazy for even suggesting it or just seek a new friendly? (I'm leaning toward the latter.)

 

On another note, after having another doctor tell me not PANDAS last week, I took ds to Urgent Treatment on Sat because his behaviors were still there. I thought he still had strep but I was wrong...EAR INFECTION!!! Didn't even do a swab & I didn't push for it figuring we'd be doing more tests soon enough. Got them to give us Zithromax & have had 2 rage-free days and we can reason with him...he's in a much better mood. Insomnia continues tho' (yawn!) & so our days/nights are confused. So I'm happy I got abx for him but nervous I only got 5 days worth. My dh & I got checked out too while we were at Urgent Treatment. I got abx for my throat (not strep A but possible other strep/staph since they ONLY test for strep A...thought that was interesting!...especially since some of us are thinking PITAND). DH got abx for a sinus infection. All of us are on abx together...only PANDAS/PITAND families could know the significance & how happy that makes me.

 

Hope you have a GOOD day!

 

Sarah Jane

 

P.S. I'm reading Dr. Bock's Healing the New Childhood Epidemics/4 A's book right now. VERY INTERESTING!

[momaine]

I sent Dr. K a ridiculously long email yesterday. (I just cannot edit when it comes to this stuff!) I detailed my ds(6)'s Dec '09 strep/behaviors, Sept '10 strep/behaviors, & my suspicions of early onset due to various things that led to my sons tonsilectomy just before he was 4.5 yrs old. (No major illness/issues for 1.5 years after tonsils out...had been sick off & on for 2 years prior to that.) Dr. K replied that there's "a high degree of suspision for PANDAS diagnosis" and gave directions to set up eval. I have a phone call set for next week. We are willing to travel up to see him but set up the call first since we are out of town. (Anybody think I should just go vs. doing a call 1st?) I already have all our records to send up there since I've been doing my own medical research. He didn't tell me to run any labs tho'...think that's bad? Plus, what do you do if you get a dx, but your doctor didn't believe you? How do you get treatment? Do you go back to the person who acted like you were crazy for even suggesting it or just seek a new friendly? (I'm leaning toward the latter.)

 

On another note, after having another doctor tell me not PANDAS last week, I took ds to Urgent Treatment on Sat because his behaviors were still there. I thought he still had strep but I was wrong...EAR INFECTION!!! Didn't even do a swab & I didn't push for it figuring we'd be doing more tests soon enough. Got them to give us Zithromax & have had 2 rage-free days and we can reason with him...he's in a much better mood. Insomnia continues tho' (yawn!) & so our days/nights are confused. So I'm happy I got abx for him but nervous I only got 5 days worth. My dh & I got checked out too while we were at Urgent Treatment. I got abx for my throat (not strep A but possible other strep/staph since they ONLY test for strep A...thought that was interesting!...especially since some of us are thinking PITAND). DH got abx for a sinus infection. All of us are on abx together...only PANDAS/PITAND families could know the significance & how happy that makes me.

 

Hope you have a GOOD day!

 

Sarah Jane

 

P.S. I'm reading Dr. Bock's Healing the New Childhood Epidemics/4 A's book right now. VERY INTERESTING!

Unless you can find a doctor in your area who will follow Dr. K's protocol, (maybe an immunologist?) you may have to travel to see him. When your antibiotics for your son run out, go back and have his ears rechecked and see if they will give you another 5 days. Good luck!

[SarahJane]

Good tip on the ears. I've of course been focusing on running out of abx vs. how to get more.

 

I'll start asking around to find an immunologist (another good tip). I might have an ENT that would be friendly but may not be able to do everything depending on treatment. But as for a pediatrician, I'll be looking around. We're okay with going to Chicago for consults but do need local medical support.

 

I am a bit concerned no tests were ordered yet. I'll deal with that on the phone call tho'. And really, I'd probably have worried depending on what tests were ordered anyway. That's my mode right now.

 

Have a GOOD day!

 

Sarah Jane