Where should I start?

[nicklemama]

I am new here. Short as I can background, I believe my DS has PANDAS. Started last Oct after being given FluMist. Don't know if he had concurrent strep at that time or not. Never tested. He woke up two days after Flumist sick and not the same boy. He's never really been the same since. We had a brief respite of symptoms from Dec to Mar, then they all came back again, even worse. He's seen child psychologist(during our period of respite from symptoms) who told me he had anxiety and a high IQ. He's been seeing a therapist since last Nov for his behavior and terrible separation anxiety. Things got so bad, I requested a referral to a child psychiatrist. He was put on Celexa. Made him suicidal. Weaned off and started on Lamictal, which has really helped w/ his behavior. He was angry, irritable, prone to tantrum/rages, full of anxiety, ocd's. Still has some separation anxiety but its better.

 

I took him to see a ped neurologist last Nov. She found his neurological signs to be normal and told me all I needed to do was be firm and consistent in my parenting. Wow, was I underwhelmed.

 

He also suddenly developed sensory issues which ramped up in the spring. He was evaluated by an OT who diagnosed him w/ SPD- sensory seeker. He also developed a sudden inability to tolerate loud noises and crowds. He is currently receiving OT twice a month and we just started him w/ Therapeutic Listening 1.5wks ago.

 

He has an appt to see a neuropsychologist in Oct who specializes in internationally adopted children. We've waited four months for the appt. It was made before I realized he might have PANDAS. My DS was adopted from Russia at age 6 months. He's been a happy, healthy, well adjusted little boy until the flumist. We had come to believe that maybe the flumist was a fluke that didn't cause anything but triggered underlying problems he might have had from his background. Don't know what, if anything, the neuropsych thinks about PANDAS but I will be discussing it. Its an out of pocket two day evaluation.

 

He's doing great in school. Holds it all in until he gets home. He did show ocd's in kindergarten last yr but his teacher didn't realize it. Cleaning, cleaning, cleaning. She loved it.

 

I took him to his pediatrician last week specifically to tell her I thought he had PANDAS. She's concerned. Not totally convinced. Doesn't know much about PANDAS, but drew blood for the ASO titers, plus thyroid and liver(due to med he's on).

 

 

What would be your next step? Where would you start? I have an HMO. If its not in network and referred by our ped, its out of pocket.

 

Thank you

 

Cindy

[peglem]

From the Helpful Threads thread pinned at the top of the forum:

http://www.latitudes.org/forums/index.php?showtopic=6266

Its the FAQ thread.

 

and from the same pinned thread:

http://www.latitudes.org/forums/index.php?showtopic=6688

a basic flowchart for dx & tx, compiled from the experience of forum members.

 

Also, if you let us know the general area where you live, somebody may have some experience with doctors in your area that can be helpful.

 

Sorry you're dealing with this. But, if you have to deal with it, very glad to see you here- you'll get a lot of help and support!

[KaraM]

The FAQ Peglem linked to is very helpful and a great place to start. SEeing the right doctor is crucial. There are several very knowledgeable on the east coast (CT, NJ, MD) and one in Chicago. When will the titer results be back. Hopefully they can tell you something (although many kids with PANDAS do not have elevated titers). If you can afford it, you may want to consider the Cunningham test (mentioned in the FAQ - also info under Research Programs on www.pandasresourcenetwork.org). Unfortunately it's $400, but the results (either way) can really buy you some confidence about whether to pursue the PANDAS path or not.

 

Kara

 

I am new here. Short as I can background, I believe my DS has PANDAS. Started last Oct after being given FluMist. Don't know if he had concurrent strep at that time or not. Never tested. He woke up two days after Flumist sick and not the same boy. He's never really been the same since. We had a brief respite of symptoms from Dec to Mar, then they all came back again, even worse. He's seen child psychologist(during our period of respite from symptoms) who told me he had anxiety and a high IQ. He's been seeing a therapist since last Nov for his behavior and terrible separation anxiety. Things got so bad, I requested a referral to a child psychiatrist. He was put on Celexa. Made him suicidal. Weaned off and started on Lamictal, which has really helped w/ his behavior. He was angry, irritable, prone to tantrum/rages, full of anxiety, ocd's. Still has some separation anxiety but its better.

 

I took him to see a ped neurologist last Nov. She found his neurological signs to be normal and told me all I needed to do was be firm and consistent in my parenting. Wow, was I underwhelmed.

 

He also suddenly developed sensory issues which ramped up in the spring. He was evaluated by an OT who diagnosed him w/ SPD- sensory seeker. He also developed a sudden inability to tolerate loud noises and crowds. He is currently receiving OT twice a month and we just started him w/ Therapeutic Listening 1.5wks ago.

 

He has an appt to see a neuropsychologist in Oct who specializes in internationally adopted children. We've waited four months for the appt. It was made before I realized he might have PANDAS. My DS was adopted from Russia at age 6 months. He's been a happy, healthy, well adjusted little boy until the flumist. We had come to believe that maybe the flumist was a fluke that didn't cause anything but triggered underlying problems he might have had from his background. Don't know what, if anything, the neuropsych thinks about PANDAS but I will be discussing it. Its an out of pocket two day evaluation.

 

He's doing great in school. Holds it all in until he gets home. He did show ocd's in kindergarten last yr but his teacher didn't realize it. Cleaning, cleaning, cleaning. She loved it.

 

I took him to his pediatrician last week specifically to tell her I thought he had PANDAS. She's concerned. Not totally convinced. Doesn't know much about PANDAS, but drew blood for the ASO titers, plus thyroid and liver(due to med he's on).

 

 

What would be your next step? Where would you start? I have an HMO. If its not in network and referred by our ped, its out of pocket.

 

Thank you

 

Cindy

[norcalmom]

I would consult with one of the pandas specialist. Even if you are across the country. Dr. Bouboulis (CT), Dr Latimer (DC), Dr Triffetti (NJ?) or Dr K (Chicago). If you aren't near any of those, you can post the state you are in and people will tell you where they have gotten help. I also give you a link below to a list, but take it with a grain of salt. In some cases "help" means that doctor gave some antibiotics, to one pandas kid, they may not know anything about the condition or have any interest. So, post if you are interested in one of them.

 

That might take a while to get appointment, or a phone consult. In the interum, I'd have peditrician run ASO and anti Dnase B titers (these are a blood test to see if your child has, or had strep - but they aren't that accurate, just a clue, its where people usually start). Strep is difficult to find - a culture may not uncover a strep throat. Additionally, impitego, perianal strep, strep int he sinuses, are other things your ped can look for.

 

And although it isn't and "official" test - the Cunningham Study - if you have $400 for an out of pocket expense - I found very helpful. I have yet to see a post from a kid that has all the symptoms of pandas that did not test in the pandas range for this test. It is a study being done by Madeline Cunningham at the Universtiy of Oaklahma. She's already done two studies - published - using this test. you can opbtain it by emailing her office directly, you just need to get a lab to draw the blood for you.contact info below.

 

The test measures the amount of anti-neuronal antibodies (antibodies that attack brain neurons) in blood. Also measures Cam Kinase II, another significant marker, indicating high anti-neuronal activity. It indicates an auto-immune condition, where antibodies confuse neuronal cells for the antigen, and attack itself.

 

There are several illnesses that can cause anti-neuronal activity. Strep is one, Lyme disease is one, and mycoplasma is one. I think also strep pnemoniaie (walking pnemonia) another. So if your child is in the pandas range, you are now probably looking for one of those conditions, and trying ot erradicate it. So its helpful in pointing you in the right direction in trying ot diagnose your child. She may also be interested in the flu mist vaccine set your child off (your child never had ANY pandas-like symptoms before?)

 

There are several threads posted at the top of the pandas page called "Helpful Threads". I would read them all, but the ones that might help you with yoru first steps are:

http://www.latitudes...?showtopic=5023

http://www.latitudes...?showtopic=6688

 

 

for a cunningham test kit -

Dr Madeline Cunningham

George Lynn Cross Research Professor

Microbiology and Immunology

Director, Immunology Training Program

University of Oklahoma Health Sciences Center

Biomedical Research Center Room 217

975 NE 10th Street

Oklahoma City, OK 73104

 

email: kathy-Alvarez@ouhsc.edu her lab assistant

 

email: madeleine-cunningham@ouhsc.edu

http://www.oumedicine.com/body.cfm?id=4290

 

 

We saw around 10 doctors trying ot find our way thru this (I didn't have any of the information above). Unfortunately I live on the west coast, and there aren't any pandas docs nearby, so I kep trying to find my own path, eventually leading me to a trip to Chicago - where I should have started int he first palce!

[nicklemama]

We are in Michigan. Chicago is 4.5hrs away. I am considering the Cunningham test. Will it give us more credibility if its positive? Does she/will she do it directly? My family lives in Oklahoma and we will be there in Dec. ASO titer will come back any day now. It was done a week ago. My son never had ANY of these problems before he took the FluMist. As a Russian adoptee, we looked for all kinds of things and kept our eyes out for anything, due to his background. He was as regular a kid as they come. Our ped even remarked at his 5yo well child check how lucky we were and that he had dodged a lot of bullets. Would that ever come back to haunt us. He was rarely sick, ever. Couple of ear infections. Developed seasonal allergies around age 4. Went two yrs w/out seeing the ped, except for well child checks because he just never got sick.

 

He was social, outgoing, lots of friends, adults always commented on how well behaved and mannered he was. He snow skis, swims, loves gymnastics. We camp, hike, bike. Took him everywhere. He could adjust and adapt to any situation. Now I am afraid to put him on an airplane. I don't even know what his reaction might be.

 

He was 5y9mo when he got sick last Oct. I remember the Sat morning when he came downstairs and it was all different, two days after the FluMist. He was sick, running a fever and went into a tantrum like we'd never seen before. He's 6y9mo today. We are w/in a couple of weeks of when our lives were turned upside down last yr.

 

I reported to VAERS last yr the reaction to the FluMist.

 

Thanks to everyone who has replied. I finally feel like I am on the right track and have an understanding of what has happened to my son.

[smartyjones]

Cindy -- I would suggest you call the office or e-mail the neurobehaviorist you're talking about and ask their involvement if it is a medical issue if you are keeping that appt. i think i know who you're talking about. i can't think of the name now but would know it if i heard it. a friend of mine suggested him to me b/c she is familiar with him b/c she has an adopted boy from Russia also. is he in the Virginia area? a while ago now, about 2 years, when my ds presented symptoms, 2 people suggested a dr similar to what you describe. i e-mailed and he said the treatment he does is very different -- not for medical issues at all, totally different track along the lines of working with the neural pathways that develop when you live in difficult situations -- so he said himself, he was not the right person for us. this was when we were first investigating pandas. ds had sudden onset, high titers and positive throat culture, so we knew something was up medically.

 

good luck!

[nicklemama]

Yes, our appointment is w/ Dr Federici in Virginia.

[KaraM]

I am considering the Cunningham test. Will it give us more credibility if its positive? Does she/will she do it directly? My family lives in Oklahoma and we will be there in Dec. ASO titer will come back any day now.

 

I think the Cunningham test is taken very seriously by doctors that are familiar with it. I think it will give you peace of mind, too.

The way it works is, you request to have the test done. They send a kit to you with tubes an ice pack and cooler. You bring it to a local phlebotomy lab and have your child's blood drawn. You ship it back the same day, overnight delivery. They then run the tests. Right now I think it is taking about 3 weeks for people to hear back.

Best to have the blood drawn on a on a Mon, Tues or Wed, so they are sure to get it before Friday. If it arrives after they are gone, it will sit over the weekend unopened and probably warm.

 

I don't know if they do it directly in Oklahoma.

 

Kara