Please take a minute to help me.

[ajcire]

Do you know if he takes insurance?

 

 

lovingmj- I would go straight to Dr Rosario Triffileti. He is very compassionate, and probably one of the most knowledgeable pandas docs there is. He just opened his own practice. Find his info on www.neurokidsr.us. I have seen him a couple times with my daughter and he is wonderful! He opened his own practice to specialize in pandas and other hard to diagnose issues. Call him today- he will help your child...

Eileen

[Ellen]

Lovingmj, I also agree with what the others say about testing for strep. New Jersey is a convenient location for seeing PANDAS docs. Dr. Trifiletti opened up a practice in Ramsey, N.J. in September of this year. The information is on his website. Also, we are one of the families that has seen Dr. Bouboulis recently (he has offices in Stamford, and Darien, Connecticut), and I have been very happy with him. Please keep us posted.

 

Ellen

 

 

Has your son had a workup by an immunologist?

 

You've already received lost of good suggestions by others. Definitely do the throat cultures (and aso/anti-dnase b if the cultures are neg.)

 

Here's a thread on docs http://www.latitudes.org/forums/index.php?showtopic=5023.

 

Here are the most obvious docs that come to mind:

Darien, CT one hour from NYC. His name in Dr. Denis Bouboulis (an excellent immunologist)...members on this board have seen him recently.

Rosario Trifiletti (a few here have seen him), NJ neurologist

Beth Latimer (neurologist in DC), probably the most well used doc by parents on this forum

 

 

 

Also, Beth Maloney has a list of docs on her Facebook page (under "discussions"). Her doc was Catherine Nicolaides. (I understand a consult with her is pricey and she'll likely just do augmentin....she's not well versed in other aspects of pandas.) This is what she has under NJ:

NEW JERSEY

 

Dr. Catherine Nicolaides, MD

975 Tuckerton Road

Marlton, NJ 08053

856-983-6675

 

Dr. Rosario Trifiletti, MD

Goryeb Children’s Hospital

100 Madison Avenue

Morristown, NJ

(973) 971-5700

 

 

Dr. Lara Morse (pediatric neurologist), MD

Pediatric Neurologist

Program Director

Pediatric Developmental Center

Saint Barnabas Medical Center

Livingston, NJ

Phone: (973) 322-7570 (ask for Carla)

Fax: (973) 322-7685

 

Dr. Max April

173 Froehlich Farm Blvd

New York Otolaryngology Associates

Woodbury, NY 11797

[dabel]

Please be careful not to just look for strep throat. My son has NEVER had a case of strep throat. When he was 5 he was scratching his butt like your son. I thought he might have had pin worms but it was strep. He developed big time problems. He is now 12 and has just recently been diagnosed with PANDAS. He has been very bad on and off but has never had another confirmed case of strep. His titers have been elevated with not signs of an infection. He reacts to anything that challenges his immune system now. It can be a staph infection, flu, cold, or anything. I am so sorry that MJ has a problem. Be strong and educate yourself. There is help and you are on the right track!

 

DeAnn

[faith]

Please be careful not to just look for strep throat. My son has NEVER had a case of strep throat. When he was 5 he was scratching his butt like your son. I thought he might have had pin worms but it was strep. He developed big time problems. He is now 12 and has just recently been diagnosed with PANDAS. He has been very bad on and off but has never had another confirmed case of strep.

 

DeAnn

 

 

DeAnn

how did you come to find it was strep? how do you look for strep other than in throat?

 

Thanks

Faith

[coco]

I would also add that if your "mommy gut" is telling you something is not right, LISTEN, don't let doctors brush it off or say it will pass...if you feel like you're selling yourself on their replies, move on. Your instincts are always best. I wish I had been more assertive when my dd was 2 and things were a bit "off" -- beat it early and find the best doctor. Get a complete immuno workup. Everyone on this forum is here to support you! HUG!

 

Coco

[dabel]

Please be careful not to just look for strep throat. My son has NEVER had a case of strep throat. When he was 5 he was scratching his butt like your son. I thought he might have had pin worms but it was strep. He developed big time problems. He is now 12 and has just recently been diagnosed with PANDAS. He has been very bad on and off but has never had another confirmed case of strep.

 

DeAnn

 

 

DeAnn

how did you come to find it was strep? how do you look for strep other than in throat?

 

Thanks

Faith

 

Faith,

 

The doctor actually took a swab from down there to culture. I don't know if it is unusual to have strep in your rectum but I see all of these posts and they are almost always talking about the throat. We have never had strep throat so I think it is important for parents to check the other end too! Then there are the ones like mine who at times will have issues with absolutely no signs of infection at all. I wish all this could be more cut and dry. It would make life easier on all involved!

 

DeAnn

[faith]

thanks,

my son is the same, I don't see that he gets strep infections but one documented time. he seems to swab and culture negative. so I'm wondering if I should ask some doctor to do that, I'd really be interested to see what comes out. You mean they swabbed the rectum the same as they do with the throat and then tested it the same way right there in the office? you don't have to get a stool sample? Oh I could just see my peds face if I ask for that, lol. I wonder if they have that if it is always present? do you think your boy has strep infection always there, or just at times?

 

 

Faith

[dabel]

thanks,

my son is the same, I don't see that he gets strep infections but one documented time. he seems to swab and culture negative. so I'm wondering if I should ask some doctor to do that, I'd really be interested to see what comes out. You mean they swabbed the rectum the same as they do with the throat and then tested it the same way right there in the office? you don't have to get a stool sample? Oh I could just see my peds face if I ask for that, lol. I wonder if they have that if it is always present? do you think you boy has strep infection always there, or just a times?

 

 

Faith

 

Faith,

 

Was the documented one in his throat? Does he have high titers that you can not explain? If I remember right it was just a cotton swab that they used right in the office and then they had the results in a few days. I know it was not a stool sample. He then took a round of abx. The itch went away then after a week it was back. He was given another round of abx and on his recheck was given his 5 year vaccinations. That's all she wrote - he crashed! I don't know if he has had strep there again. I am new to the PANDAS world and never thought to have it tested until now.

 

DeAnn

[EAMom]

Our dd also had perianal strep (in addition to a pos. throat culture) when she was in the hosp. in march 08. We had them take a swab b/c I noticed some blood (age 7.5 years) in the "hat" that they make patients pee into...and wondered if there was some kind of infection.

 

Apparently, pre-puberty girls can get vulvo-vaginal strep. Also, strep can hide out in the sinuses (not sure how you would culture there). BTW, skin strep won't cause a rise in ASO.

 

I believe Dr. Latimer has had a few kids tested for strep in the gut...I'm not sure what that entails.