looking for opinions on test results

[KaraM]

Hi,

 

This is my first post. I've searched some of the older posts and find them somewhat helpful, but thought I'd just ask for opinions nonetheless.

 

My 7 year old daughter started exhibiting OCD symptoms toward the end of November/Early December. I had heard a little bit about PANDAS, so we had the doc do a throat culture done at the time. It came back negative. In the meantime we proceeded with CBT/ERP and I continued researching. I learned a bit more about PANDAS and that the throat culture may be negative. I also learned 2 other kids in her class were experiencing either OCD symptoms of Tics. I suggested the boy be tested for Strep and it came back positive. Based on that trend we pushed for antibiotics for our daughter. So in mid February she started a 14 day dose of Omnicef. Around day 11, her symptoms started to improve. Around 4 days after we stopped, she spiraled downward.

 

We also pushed our doc to have order an ASO and Anti D Nase B test. We were also waiting for the Cunninham test kit to arrive, so it took us a while to get her blood drawn. We finally managed it about a week ago and just got the titer results. They were both slightly above normal. Her ASO was 200 - 400; Her Anti D Nase B was 450. Our doc said this confirms she had strep at some time in the past, but it can't really tell us when. (We know for sure she had it twice over the course of 6 weeks about two years ago. I messed up administering the first round of abx, so I don't think it truly eliminated the first round of strep).

Our doc said it would be a good idea to have the tests done again when her symptoms are exacerbated to see if there is a change, so he is going to send us another order.

 

The day she had the blood drawn, was the first day of a five day period where her symptoms were relatively mild (i.e. no rages/tantrums/major attacs - just the minor day to day avoidance of things she thinks are contaminated). Yesterday, she started declining again. Today is questionable.

 

What do you think? Does this sound like it could be PANDAS. Do you think it's just normal OCD waxing and waning? When do you think the best time to do the tests again would be?

 

Thanks to anyone and everyone ahead of time who is willing to share their thoughts.

 

Kara

[Iowadawn]

Kara-

 

Love that name spelled this way. Same as our dd15.

 

Anyway, after 9 years of trying to figure out what is wrong with our son, we rec'd a dx that got us going in the right direction. It hasn't been a straight one--yet, but we are making progress. So...don't waste another day, month, year putting your family through the symptoms...wondering...hoping...waiting...trying to "educate a doc"...searching. The years pass so quickly. Get to a doc that treats PANDAS, eats, PANDAS, sleeps PANDAS. Your questions will get answered, & IF the dx is PANDAS you can get your child well. It would appear that you have a cooperative, caring doc at your end. This is INVALUABLE. An expert to go along with this doc-- IF the dx were PANDAS--would be awesome. If it isn't PANDAS, these specialists certainly could get you pointed in the appropriate direction for care.

 

Your situation sounds suspicious enough to investigate further. Dr. Kovacevic (Dr. K) has a website: webpediatrics.com

If you suspect PANDAS he will answer your email--usually w/n a day. There are other docs that are listed on a thread.

 

My point: Don't waste any time trying to guess, or wonder, or get this opinion or that (hey, we love you, don't get me wrong & want to help! Many of us on here have had a lot of years under our belt without a dx. What we would give to have found out about a PANDAS doc sooner.

 

Best wishes & prayers. PM if you wish.

 

Dawn

[KaraM]

(I hope I'm posting this reply correctly....)

 

Thanks for your advice, Dawn. We do have an appointment scheduled for June 9 with Dr. Fuhlbrigge at Children's Hosptial in Boston. He is head of the rheaumatology department and PANDAS is listed as one of his specialties. Our pediatrician referred us to him. June 9 feels like a long time away, though. I feel like I can argue both sides of the case with the information we have right now. I find it interesting and helpful to see what other people think. Often they come up with questions or ideas to pursue that I would never have dreamed of.

 

Kara-

 

Love that name spelled this way. Same as our dd15.

 

Anyway, after 9 years of trying to figure out what is wrong with our son, we rec'd a dx that got us going in the right direction. It hasn't been a straight one--yet, but we are making progress. So...don't waste another day, month, year putting your family through the symptoms...wondering...hoping...waiting...trying to "educate a doc"...searching. The years pass so quickly. Get to a doc that treats PANDAS, eats, PANDAS, sleeps PANDAS. Your questions will get answered, & IF the dx is PANDAS you can get your child well. It would appear that you have a cooperative, caring doc at your end. This is INVALUABLE. An expert to go along with this doc-- IF the dx were PANDAS--would be awesome. If it isn't PANDAS, these specialists certainly could get you pointed in the appropriate direction for care.

 

Your situation sounds suspicious enough to investigate further. Dr. Kovacevic (Dr. K) has a website: webpediatrics.com

If you suspect PANDAS he will answer your email--usually w/n a day. There are other docs that are listed on a thread.

 

My point: Don't waste any time trying to guess, or wonder, or get this opinion or that (hey, we love you, don't get me wrong & want to help! Many of us on here have had a lot of years under our belt without a dx. What we would give to have found out about a PANDAS doc sooner.

 

Best wishes & prayers. PM if you wish.

 

Dawn

[NancyD]

Hi Kara,

 

We have been seeing Dr. Fuhlbrigge for a year and a half now and he has been great to work with, though my daughter had been long diagnosed with PANDAS. We get our IVIG infusions through him at the Waltham Infusion Center of Children's. We live north of Boston. If you'd like to PM me, please feel free to. I'm happy to help you any way I can.

 

Nancy

[KaraM]

Nancy,

I am so new to this board. What does PM mean?

We live in Salem, MA. Where are you?

Thanks,

Kara

[NancyD]

Hi Kara,

 

PM stands for Personal Message. If you click on my name and go to my page you will see an option in the lower left hand corner to send me either a personal message or email. Either is fine with me. I am farther north in the Newburyport area.

 

Nancy

[thereishope]

Welcome.

 

I think you have an important piece to the puzzle...a positive strep test. We even say on here, sometimes, that you have that + strep test, don't bother with the titers. With some kids, they won't even have elevated titers even though they have strep! That just gives some doctors reason to question the possibility of PANDAS.

 

So, upon hearing that her behaviors improved on antibiotics, then worsened off, will the doctor extend a prescription? What is taking right now?

 

In case you haven't come across these great threads yet, they are packed with helpful information....

 

PANDAS Fact Sheet

http://www.latitudes.org/forums/index.php?showtopic=6265

 

PANDAS FAQ

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

 

It is also a good time to take in all family members to make they do not have strep. This will hopefully prevent reinfection of the possible PANDAS child and eliminate the child being exposed to strep (which can aggravate symptoms as well). I take all family members in every time strep is in the house. That is how I found out my 2 non-PANDAS kids do not get symptoms of strep either. If family member's rapid strep tests come back negative, make sure they send them out for a culture.

[JTs-Mom]

Kara,

 

Has your dd ever had any tick bites? Just wondering if Lyme Disease might be a possibility. Looks like you are in an endemic region of the country. Lyme has manifested as OCD in some children. In my ds(5), I believe it is what's causing his motor tics. He just recently started on abx. I know you saw improvement on Omnicef, and I know Omnicef is used to treat Lyme. Just something else to consider in addition to PANDAS.

 

Mary Beth

Edited March 22, 2010 by JT's Mom

[KaraM]

Thanks for your reply, Vicki and the links to the threads. When you mentioned the positive strep, are you referring to her strep 2 years ago? Her December throat culture was negative (another child in her class was positive).

 

Thanks again,

Kara

 

Welcome.

 

I think you have an important piece to the puzzle...a positive strep test. We even say on here, sometimes, that you have that + strep test, don't bother with the titers. With some kids, they won't even have elevated titers even though they have strep! That just gives some doctors reason to question the possibility of PANDAS.

 

So, upon hearing that her behaviors improved on antibiotics, then worsened off, will the doctor extend a prescription? What is taking right now?

 

In case you haven't come across these great threads yet, they are packed with helpful information....

 

PANDAS Fact Sheet

http://www.latitudes.org/forums/index.php?showtopic=6265

 

PANDAS FAQ

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

 

It is also a good time to take in all family members to make they do not have strep. This will hopefully prevent reinfection of the possible PANDAS child and eliminate the child being exposed to strep (which can aggravate symptoms as well). I take all family members in every time strep is in the house. That is how I found out my 2 non-PANDAS kids do not get symptoms of strep either. If family member's rapid strep tests come back negative, make sure they send them out for a culture.

[KaraM]

Thank you for your reply. She has not had any tic bites that we are aware of. We aren't the best at checking, but try to if we are in an area with a lot of deer. I'll ask our doc about having a test done anyway.

 

Thanks again,

Kara

 

Kara,

 

Has your dd ever had any tick bites? Just wondering if Lyme Disease might be a possibility. Looks like you are in an endemic region of the country. Lyme has manifested as OCD in some children. In my ds(5), I believe it is what's causing his motor tics. He just recently started on abx. I know you saw improvement on Omnicef, and I know Omnicef is used to treat Lyme. Just something else to consider in addition to PANDAS.

 

Mary Beth