Finding the culprit - How to tackle the Pediatrician

[matis_mom]

I have to go to the pediatrician and ask them to check everyone (6 kids total!!!)

How do I do this? I am going to bring copies of a few key articles, and my ds's PANDAS doctor said she would be happy to talk to the pediatrician. She said we needed not just the swab but also a blood test. Does anyone know specifically what blood test that would be?

 

I want to step in there ready for any questions objections, so any tips will be greatly appreciated.

 

Isabel

[Debbie1]

The bloodwork you need is ASO (Antistreptolysin O) and Anti-DNase B Strep Antibodies.

 

The first time I went to my ped asking for cultures and bloodwork, I was expecting an "I don't think this is necessary" response. He didn't give me a problem. Your ped should be fine with running the tests especially since you have a specialist recommending them.

[faith]

make sure it is BOTH those tests written on the script if they give you that to take to a lab, because , sometimes they just do the ASO.

 

 

 

Faith

[thereishope]

My ped doesn't give grief about doing strep tests on my kids. I don't ask. I just make an appt for a strep test. Now, the first time I took my 2 yr old, they said she didn't need to be tested since 2 yr olds rarely get strep. well, I had it done anyway. Guess what...she had strep! Don't let them talk you out of it.

 

Also, have parents tested. If rapid comes back neg, make sure they culture. Again, my hubby's doc said the rapid was neg, no need to culture. My hubby insisted. Guess what....culture was + !

 

Oh, the joys of having family that doesn't show signs of strep.

[matis_mom]

Thanks all for the replies... I'm ready to go!

 

Oh, the joys of having family that doesn't show signs of strep.

 

I know! It's nice not to have them all complaining and miserable, but I keep thinking if my PANDAS child had had symptoms, things would not have gotten to this point

His tonsils showed severe signs of earlier tonsillitis, I had not clue!!!

 

Isabel

[matis_mom]

Thanks all for the replies... I'm ready to go!

 

Oh, the joys of having family that doesn't show signs of strep.

 

I know! It's nice not to have them all complaining and miserable, but I keep thinking if my PANDAS child had had symptoms, things would not have gotten to this point

His tonsils showed severe signs of earlier tonsillitis, I had not clue!!!

 

Isabel

Well, just came back from the pediatrician... my 7-yo had a fever yesterday and today, so I took her in. Before the doctor even saw her the rapid test was back... POSITIVE!

My PANDAS child was a basket-case last night, now we know why!

But, looking on the bright side, I saw a new doctor at our peds. and she is familiar with PANDAS/prophylactic antibiotics, and agreed to test everyone. She just said to wait a couple of days until there are some symptoms so we don't get a false negative... It seems weird to be happy my daughter has strep, but I guess that's what it takes to finally get everyone tested.

I have a bit of a sore throat and an ear ache, so I'm thinking I will go see my family doctor... another appointment!!! I guess even if that's all I do this week, it will be time well spent.

I should be receiving my Cunningham kit today or tomorrow, so his immune system should be nicely out of whack when they take the sample

Where did you guys go to do the draw? We have LabCor close by that Mati is not-so-afraid-of, but I wonder if they will do the spinning...

 

Isabel

[Debbie1]

We had our daughter's done when we went to see Dr. L. in MD. However, I did ask our local LabCorp if they could pull and spin the blood for a research study in case we decide to run the numbers on our son. They said that they would do it, provided that they are given instructions on what is needed. They also told me that I would have to send the package to Madeleine Cunnigham myself. They could not send it for me.

 

I would suggest calling ahead or stopping by to make sure they can do it for you correctly. They recently messed up our stool samples (but that's another story!).

 

Best of luck.

Debbie

[Buster]

Please, please, please do a throat culture. If you're going to do the ASO do a throat culture.

 

There's all sorts of reasons here:

1. You can have one child with colonized strep that affects the other child

2. ASO only shows up 1-2 week post infection and even then does not rise in > 46% of kids

3. AntiDnaseB only shows up 6-8 weeks post infection and even then does not rise in > 55% of kids

4. There is an absence of rise in either ASO and AntiDnase B in > 37% of kids

5. The fall rate of ASO and AntiDNAse B is unknown

 

As you know ASO and AntiDNAseB do *not* cause PANDAS -- rather it is another antibody that seems to react to GABHS.

 

In our house, one of the kids gets strep and is not affected by it (i.e., is a likely carrier) but the low grade strep goes across to the other kid who reacts. Please get a throat culture as long as you are doing the other work.

 

Regards,

 

Buster

 

We had our daughter's done when we went to see Dr. L. in MD. However, I did ask our local LabCorp if they could pull and spin the blood for a research study in case we decide to run the numbers on our son. They said that they would do it, provided that they are given instructions on what is needed. They also told me that I would have to send the package to Madeleine Cunnigham myself. They could not send it for me.

 

I would suggest calling ahead or stopping by to make sure they can do it for you correctly. They recently messed up our stool samples (but that's another story!).

 

Best of luck.

Debbie

[matis_mom]

Please, please, please do a throat culture. If you're going to do the ASO do a throat culture.

 

There's all sorts of reasons here:

1. You can have one child with colonized strep that affects the other child

2. ASO only shows up 1-2 week post infection and even then does not rise in > 46% of kids

3. AntiDnaseB only shows up 6-8 weeks post infection and even then does not rise in > 55% of kids

4. There is an absence of rise in either ASO and AntiDnase B in > 37% of kids

5. The fall rate of ASO and AntiDNAse B is unknown

 

As you know ASO and AntiDNAseB do *not* cause PANDAS -- rather it is another antibody that seems to react to GABHS.

 

In our house, one of the kids gets strep and is not affected by it (i.e., is a likely carrier) but the low grade strep goes across to the other kid who reacts. Please get a throat culture as long as you are doing the other work.

 

Regards,

 

Buster

Buster,

You lost me there! Are you talking about my PANDAS child, or the other children in the house?

(PANDAS ds has been on antiobiocis since July, his antibodies were very high then, they have not check recently, do I need this to send along with the Cunningham test?)

About the other kids, I asked the nurse at the pediatrician's and she said they ALWAYS do the culture, that's good to know. My PANDAS doctor said even with the culture, it's only 60% accurate.

 

Also, I have a stupid question... how about family members WITHOUT tonsils? My PANDAS ds had them out in August, my husband had them out as a child. I now for a fact (since that's my son's case) strep can be in other places, BUT: can you catch it from some who has strep-throat when you have no tonsils? How do we check them?

 

Thanks for the info!

 

Isabel

[EAMom]

I know that there are kids on this forum who have had their tonsils out...and still got strep. So, I would throat culture everyone, regardless of their T&A history.

[peglem]

Also, I have a stupid question... how about family members WITHOUT tonsils? My PANDAS ds had them out in August, my husband had them out as a child. I now for a fact (since that's my son's case) strep can be in other places, BUT: can you catch it from some who has strep-throat when you have no tonsils? How do we check them?

 

My tonsillectomized daughter has had numerous +strep swabs after tonsillectomy.

[matis_mom]

My tonsillectomized daughter has had numerous +strep swabs after tonsillectomy.

OK, that's what I need to hear then. Thanks!

 

Isabel

[Buster]

Please, please, please do a throat culture. If you're going to do the ASO do a throat culture.

Buster,

You lost me there! Are you talking about my PANDAS child, or the other children in the house?

Yes. If you were going to get ASO then please get throat culture first (at least a rapid but preferably the 72 hour kind). ASO is only useful if you really think there was a strep infection, you missed the window for a throat culture but are likely within 4 weeks of the event.

 

You actually need to culture others in the family because GABHS can ping-pong between family members. So if one is positive, they just tend to re-infect the others. This is why carrier status is not benign for others in the household and is possibly not benign for the carrier themselves.

 

Regards,

 

Buster