A little hope...

[peglem]

Logically, I feel like I should be celebrating, but I'm so afraid to get my hopes up.

 

I sent a copy of the Cunningham study and Allie's test results to her pediatrician. He called Dr. Cunningham and spoke with her. She explained it all to him and recommended Dr. Latimer. We live in Phoenix... Anyway, he put a call in to Dr. Latimer's office while we were there today. The office staff told him this sounds like something she would be interested in and she'll call back when she can. He's going to consult with her on treatment options. I do feel blessed to have found this doctor...he's a gem.

[TiredMom]

Logically, I feel like I should be celebrating, but I'm so afraid to get my hopes up.

 

I sent a copy of the Cunningham study and Allie's test results to her pediatrician. He called Dr. Cunningham and spoke with her. She explained it all to him and recommended Dr. Latimer. We live in Phoenix... Anyway, he put a call in to Dr. Latimer's office while we were there today. The office staff told him this sounds like something she would be interested in and she'll call back when she can. He's going to consult with her on treatment options. I do feel blessed to have found this doctor...he's a gem.

 

I think I'd be celebrating to find a doctor like him in my area - that's no small victory. How wonderful that you're able to build a network of doctors in this way. I'm sending you my very best wishes.

[ShaesMom]

Logically, I feel like I should be celebrating, but I'm so afraid to get my hopes up.

 

I sent a copy of the Cunningham study and Allie's test results to her pediatrician. He called Dr. Cunningham and spoke with her. She explained it all to him and recommended Dr. Latimer. We live in Phoenix... Anyway, he put a call in to Dr. Latimer's office while we were there today. The office staff told him this sounds like something she would be interested in and she'll call back when she can. He's going to consult with her on treatment options. I do feel blessed to have found this doctor...he's a gem.

 

That is awesome!! I'll be sure and keep you guys in my prayers. I hope this all works out for you.

 

Sam

[peglem]

Well, Allie's pediatrician called me back (after hours, sweet). He had a long consult with Dr. Latimer. I'm so emotional right now.

 

She basically confirmed what's going on, and has helped him put together a treatment plan, and helping him find a way to get insurance coverage. (crazy, my daughter has a primary insurance and the state supplies secondary insurance, and still this is a problem?) She told him she thinks plasmapheresis (is that the same thing as PEX?) works better, especially for the older kids. She encouraged him to use steroids as needed...he was worried about safety w/ those. He already ordered an immune panel for her today (after the Cunningham call) and said that's exactly what Dr. Latimer said to do.

 

Earlier today, he and I had talked about the autoimmune part of this. I said my understanding was that what was going on was that the antibodies were were causing chaotic neurotransmission in the basal ganglia. He thought they were attacking and destroying cells. He told me, that according to Dr. Latimer, I was right. I see that as good news.

 

It feels extraordinarily good to have this finally validated... But, this thing has stolen her childhood...her ability to speak, to make friends, to learn...and that sickens me. Maybe her ###### is almost over...that's exciting....I don't even know what to feel from one moment to the next.

 

And, he said this is so interesting the way this is happening, because he had a 7 year old little girl in his office today that he thinks is having the same problem! But he's not sure the mom understands what he's talking about. I gave him permission to share my phone number and info if he thinks that will help. I told him I thought there were a lot of kids with this, who were just treated psychiatrically...he and Dr. Latimer discussed that as well, and he agrees. I think he will share this information with all the practitioners at this doctor's office. Its a large group, with 3 offices, so that's a lot. And he always had med students doing internships.

 

The other thing is he had the same med student with him today and last week, he made sure she sat in on all of this. The med student asked him today if all his meds students see Allie...he told her yes. She thanked me as we left and said she learned so much from us!

[Kayanne]

Well, Allie's pediatrician called me back (after hours, sweet). He had a long consult with Dr. Latimer. I'm so emotional right now.

 

She basically confirmed what's going on, and has helped him put together a treatment plan, and helping him find a way to get insurance coverage. (crazy, my daughter has a primary insurance and the state supplies secondary insurance, and still this is a problem?) She told him she thinks plasmapheresis (is that the same thing as PEX?) works better, especially for the older kids. She encouraged him to use steroids as needed...he was worried about safety w/ those. He already ordered an immune panel for her today (after the Cunningham call) and said that's exactly what Dr. Latimer said to do.

 

Earlier today, he and I had talked about the autoimmune part of this. I said my understanding was that what was going on was that the antibodies were were causing chaotic neurotransmission in the basal ganglia. He thought they were attacking and destroying cells. He told me, that according to Dr. Latimer, I was right. I see that as good news.

 

It feels extraordinarily good to have this finally validated... But, this thing has stolen her childhood...her ability to speak, to make friends, to learn...and that sickens me. Maybe her ###### is almost over...that's exciting....I don't even know what to feel from one moment to the next.

 

And, he said this is so interesting the way this is happening, because he had a 7 year old little girl in his office today that he thinks is having the same problem! But he's not sure the mom understands what he's talking about. I gave him permission to share my phone number and info if he thinks that will help. I told him I thought there were a lot of kids with this, who were just treated psychiatrically...he and Dr. Latimer discussed that as well, and he agrees. I think he will share this information with all the practitioners at this doctor's office. Its a large group, with 3 offices, so that's a lot. And he always had med students doing internships.

 

The other thing is he had the same med student with him today and last week, he made sure she sat in on all of this. The med student asked him today if all his meds students see Allie...he told her yes. She thanked me as we left and said she learned so much from us!

I'm so happy for you...I truly hope this pans out....maybe the tide is really finally turning!

[ajcire]

That is awesome!!! Sounds like you have a wonderful dr. because a good dr. doesn't always know the answers but isn't afraid to say so and isn't afraid to learn from someone who might know more.

[dcmom]

peglem- I am in tears reading your post. I am so happy for you, and through your fight to help your daughter, your are probably sparing lots of other kids such a long time of suffering.

 

Plasma pheresis is the same thing as plasma exchange. I have talked to several moms who have been through it, and we have met with the doctors regarding this- it really seems like no big deal compared to the suffering these kids go through. Would you be coming to Georgetown, or can you have it done locally?

[peglem]

peglem- I am in tears reading your post. I am so happy for you, and through your fight to help your daughter, your are probably sparing lots of other kids such a long time of suffering.

 

Plasma pheresis is the same thing as plasma exchange. I have talked to several moms who have been through it, and we have met with the doctors regarding this- it really seems like no big deal compared to the suffering these kids go through. Would you be coming to Georgetown, or can you have it done locally?

I think the plan is to try to get it done locally. I've never taken my daughter on an airplane, but I would guess that would be pretty near impossible w/o anesthesia. And it'd be at least a 2 day drive to try to get there by car. Right now, her doctor is trying to collect evidence to present to a specialist (immuno or rheumy) to get them to order it.

 

I feel so blessed in having this doctor, and this forum. You all lead me to this with info on Cunningham (another blessing) and Latimer (another blessing). We knew this was PANDAS 4 years ago, but the only info her doctor had on it was the NIH site (wish they'd link to updated information) which basically says to treat psychiatric symptoms psychiatrically and save IVIG and PEX for severe cases....but doctors who don't see this much don't know how severe "severe" is. Her doctor tried to enlist the help of an immunologist and rheumy in the past...but with nothing else to go on, we got nothing!

 

Erica, yes, I think Allie's doctor is such an angel! I know it takes a lot of courage for him take this path for us, God bless him! It shouldn't be that way, but I think he's risking other doctors thinking he's crazy for entertaining these "ideas" of mine. I would hate to see his career damaged by this...that would be a real injustice.

 

I'm feeling less conflicted over things today and more celebratory! YIPEEEE!!!!!

[ShaesMom]

peglem- I am in tears reading your post. I am so happy for you, and through your fight to help your daughter, your are probably sparing lots of other kids such a long time of suffering.

 

Plasma pheresis is the same thing as plasma exchange. I have talked to several moms who have been through it, and we have met with the doctors regarding this- it really seems like no big deal compared to the suffering these kids go through. Would you be coming to Georgetown, or can you have it done locally?

I think the plan is to try to get it done locally. I've never taken my daughter on an airplane, but I would guess that would be pretty near impossible w/o anesthesia. And it'd be at least a 2 day drive to try to get there by car. Right now, her doctor is trying to collect evidence to present to a specialist (immuno or rheumy) to get them to order it.

 

I feel so blessed in having this doctor, and this forum. You all lead me to this with info on Cunningham (another blessing) and Latimer (another blessing). We knew this was PANDAS 4 years ago, but the only info her doctor had on it was the NIH site (wish they'd link to updated information) which basically says to treat psychiatric symptoms psychiatrically and save IVIG and PEX for severe cases....but doctors who don't see this much don't know how severe "severe" is. Her doctor tried to enlist the help of an immunologist and rheumy in the past...but with nothing else to go on, we got nothing!

 

Erica, yes, I think Allie's doctor is such an angel! I know it takes a lot of courage for him take this path for us, God bless him! It shouldn't be that way, but I think he's risking other doctors thinking he's crazy for entertaining these "ideas" of mine. I would hate to see his career damaged by this...that would be a real injustice.

 

I'm feeling less conflicted over things today and more celebratory! YIPEEEE!!!!!

 

 

If you have to drive--you can spend the night at my house-l live in Nebraska.

[peglem]

How very kind of you to offer! I may end up taking you up on that...but we may feel better with a hotel, just because my daughter is rather destructive at times and I'd feel awful if your kindness resulted in something horrible happening at your house!