Exciting new friend made whose child has seen Dr. Swedo!

[saidie10]

Hi!

 

Last week my mom and SIL took my nephew to the doctor because he was sick and although his throat was not very red, they asked to swab for strep because they knew my boys could not be around him if +. They then asked the Nurse Practitioner who they met with for the test if she had ever heard of PANDAS and she said "Yes, my son has it!" Well I visited with her on the phone tonight and she said she sees Dr. M in Florida and has even had Dr. Swedo on her son's case. They believe he is the youngest on record to have a positive throat culture for strep at 18 days old. He is barely 4 now and was too young for the studies going on, but we discussed all kinds of things....kids being misdiagnosed with ASD as hers was about to be, the need for more doctors treating this, etc. For those of you in Texas, she informed me she is going to TX Childrens Hospital next week to meet a team of doctors per their request, whom are very interested in PANDAS and there was even a discussion of them wanting to start a clinic there for treating PANDAS! This would be great news for those of us in Texas!

 

I will let you guys know more about her meeting there and with Dr. M soon and I hope she will join the board!

[bgbarnes]

Hi!

 

Last week my mom and SIL took my nephew to the doctor because he was sick and although his throat was not very red, they asked to swab for strep because they knew my boys could not be around him if +. They then asked the Nurse Practitioner who they met with for the test if she had ever heard of PANDAS and she said "Yes, my son has it!" Well I visited with her on the phone tonight and she said she sees Dr. M in Florida and has even had Dr. Swedo on her son's case. They believe he is the youngest on record to have a positive throat culture for strep at 18 days old. He is barely 4 now and was too young for the studies going on, but we discussed all kinds of things....kids being misdiagnosed with ASD as hers was about to be, the need for more doctors treating this, etc. For those of you in Texas, she informed me she is going to TX Childrens Hospital next week to meet a team of doctors per their request, whom are very interested in PANDAS and there was even a discussion of them wanting to start a clinic there for treating PANDAS! This would be great news for those of us in Texas!

 

I will let you guys know more about her meeting there and with Dr. M soon and I hope she will join the board!

Seriously- Texas Children's hospital?? 18 days old positive for strep WOW! how did they even know to swab?? I would love to know what Doctors she is meeting with- Good news for Texas! We need more help here!

Thanks or the heads up!

Brandy

[tpotter]

A friend of mine's child tested positive for strep at about 6 months (not quite 18 days), after she fought tooth and nail to get the doctor to test him, because the doctor kept insisting that babies don't get it!

 

Also, I work in Early Intervention, and there are several children who I highly suspect (2 are diagnosed with Autism, but there is very significant family hx of RF in one and Lupus in another.) I have told them about it, and one is following through (can't force them...just give them the information, I keep telling myself.)

 

That is FANTASTIC about TX Children's Hospital. Keep us informed.

[trggirl]

Please keep us updated about the Texas Childrens news. We had a terrible experience with them several months ago. It would be wonderful if we could actually turn to them for help.

 

 

I hope your friend joins the board too!!

Edited June 11, 2010 by Trg girl

[Fixit]

thanks for sharing the good news....hopefully its another open door

it doesn't help me...but i needed to hear some good stuff!!!

[Guest rkrautkramer]

Please keep us posted! I am six months out and still looking for answers! Another doctor visit with more blood draws today! So frustrating to watch your child going through this -- and to know as a mom what is going on, but to not have doctors believe in what you are talking about!

[saidie10]

Hi!

 

Last week my mom and SIL took my nephew to the doctor because he was sick and although his throat was not very red, they asked to swab for strep because they knew my boys could not be around him if +. They then asked the Nurse Practitioner who they met with for the test if she had ever heard of PANDAS and she said "Yes, my son has it!" Well I visited with her on the phone tonight and she said she sees Dr. M in Florida and has even had Dr. Swedo on her son's case. They believe he is the youngest on record to have a positive throat culture for strep at 18 days old. He is barely 4 now and was too young for the studies going on, but we discussed all kinds of things....kids being misdiagnosed with ASD as hers was about to be, the need for more doctors treating this, etc. For those of you in Texas, she informed me she is going to TX Childrens Hospital next week to meet a team of doctors per their request, whom are very interested in PANDAS and there was even a discussion of them wanting to start a clinic there for treating PANDAS! This would be great news for those of us in Texas!

 

I will let you guys know more about her meeting there and with Dr. M soon and I hope she will join the board!

 

Glad I could bring some good news! I am very excited too! As for finding out her child had strep at 18 days old, they thought the baby had RSV and because the Mom is a Nurse Practitioner, they did all kinds of swabs and she actually wrote culture on the orders and if they had not cultured the baby's throat, they would've never known it was positive for strep!

 

As for TX Children's new interest in PANDAS, apparently the doctors that attended the Autism One Conference listened intently and are very, very interested!

 

Dr. M is Dr. Murphy in Florida BTW.

[AmySLP]

My daughter has her first positive at 8 weeks old-symptoms were crying upon nursing and irritability. She continued that first year with 3-4 positive strep tests. It may be that she did not get the immune coverage from me, as we just learned that she has specific autoimmune deficiency in regards to strep. Dr. B explained that I may have the same, as babies are not ususally tsted for strep so young b/c they have that initial immunity from their mothers. Finally, a possible explanation to her early positive strep tests.

[matis_mom]

My daughter has her first positive at 8 weeks old-symptoms were crying upon nursing and irritability. She continued that first year with 3-4 positive strep tests. It may be that she did not get the immune coverage from me, as we just learned that she has specific autoimmune deficiency in regards to strep. Dr. B explained that I may have the same, as babies are not ususally tsted for strep so young b/c they have that initial immunity from their mothers. Finally, a possible explanation to her early positive strep tests.

Wow! Last time the kids had strep my dear pediatrician did swab the baby (only 3 months old). She said, "they say babies don't get it, but I've seen babies get it!"

Thanks for including the symptoms, I'll be watching out...

[britneymag]

Wow, I have always wondered if my dd's RSV when she was 4 months old might have the been the start of it all. I wonder now if she had strep? They of course didn't check. Her first tics started just a little after that but I didn't realize that they were tics till later.

 

That is great about TX Children's. I love my Dr's i have here in Austin, but they don't believe in long term ABX so I would love someone who would prescribe that for my children.

 

Melanie

[lfran]

If you guys have specific info about a texas doctor or who to see at Tx children's hospital, if you haven't already, would you post it to this post

http://www.latitudes.org/forums/index.php?showtopic=8636 , where a 15 year old boy from Texas is trying to seek better treatment for himself.

 

Thanks!

 

 

Wow, I have always wondered if my dd's RSV when she was 4 months old might have the been the start of it all. I wonder now if she had strep? They of course didn't check. Her first tics started just a little after that but I didn't realize that they were tics till later.

 

That is great about TX Children's. I love my Dr's i have here in Austin, but they don't believe in long term ABX so I would love someone who would prescribe that for my children.

 

Melanie

[NancyD]

I just emailed a psychiatrist I know at TCH who heads up the ASD clinic to see if she can give me any names of doctors there who believe in PANDAS and who are willing to treat it with abx, steroid burst, and/or IVIG. I will report back anything I find out.

 

Nancy