Antibody tests are in

[Suzan]

I finally got intouch with the neurologist's office. The nurse said that all tests were normal except for a slight elevation of what I assume is the DNAse-B Antibody (I had her spell it for me deoxyribonuclease).

 

It was 94 on May 1st. She didn't have the lab reference range but since my dd is 6 I am assuming it's around 1-60. She said they are "not too concerned about PANDAS" but would like her to take an antioxidant of CoQ10, 50 mg a day. I told them she was already taking 300 mg of it a day (prescribed by her ped and it was in her chart there).

 

I let them know that I thought she might have had strep last week and that she is falling apart. He said he wants to take a bunch of blood work tomorrow while she is in a hightened state.

 

I guess here are my questions. If she had strep the last time in March, how might this affect these antibodies 2 months later after antibiotics for the strep? What is the ideal time frame for testing antibodies after a strep infection?

 

If this next round of tests come back normal, do I assume she does not have PANDAS? Then I will have no direction and won't know what to do next.

 

If you haven't seen it yet, will you check out my post on the OCD page about OCD and Food and let me know if you have any thoughts?

 

Thank you all....

 

Susan

[alisaber]

I finally got intouch with the neurologist's office. The nurse said that all tests were normal except for a slight elevation of what I assume is the DNAse-B Antibody (I had her spell it for me deoxyribonuclease).

 

It was 94 on May 1st. She didn't have the lab reference range but since my dd is 6 I am assuming it's around 1-60. She said they are "not too concerned about PANDAS" but would like her to take an antioxidant of CoQ10, 50 mg a day. I told them she was already taking 300 mg of it a day (prescribed by her ped and it was in her chart there).

 

I let them know that I thought she might have had strep last week and that she is falling apart. He said he wants to take a bunch of blood work tomorrow while she is in a hightened state.

 

I guess here are my questions. If she had strep the last time in March, how might this affect these antibodies 2 months later after antibiotics for the strep? What is the ideal time frame for testing antibodies after a strep infection?

 

If this next round of tests come back normal, do I assume she does not have PANDAS? Then I will have no direction and won't know what to do next.

 

If you haven't seen it yet, will you check out my post on the OCD page about OCD and Food and let me know if you have any thoughts?

 

Thank you all....

 

Susan

Dear susan

You did not mention what was the response of the doctor and the nurse when you said she is on 300 mg dose

[dcmom]

Hi Suzan,

 

I read your food post, and will comment on both.

 

My daughter (I think) is pretty clear cut pandas. She was "normal" until January when she had a sudden onset of behavoir issues, and a positive culture. She is 5.

 

Prior to pandas, she was always a picky eater- but in the realm of other kids her age. She had reliable foods that she loved, and I could count on her eating (yogurt, honey nut cheerios, pizza, etc) Sometime during the onset of pandas, she lost taste for everything. She would be hungry, but could not find anything that appealed to her. For about 2-3 weeks the only thing I could get her to eat were pancakes with Aunt Jemima (fake) syrup. It sounds totally like what you are describing. Fast forward to now, she has been on antibiotics for 3 months (zithromax for 2 of them). She is MUCH better. She is slowly reintroducing more foods to her diet (interestingly enough, not the ones the ones that were her favorites before). I finally feel like she is eating a somewhat balanced, nutritious diet. It has been said that pandas can cause a type of anorexia- I wonder if my dd had a 5 yr old version of that.

 

Has your daughter been on zithromax? Could you try it for a month?

 

My daughter did have a positive culture. We only had her titers done after 2 mos on antibiotic. They came back in the range of normal. I know the neurologist will want to run them again- but I don't think I will. DD is terrified of doctors and needles, and from the research on this sight, it seems titers only prove that there was a strep infection. It is not an accurate test for pandas.

 

One question? When did you find out your child was sensitive to gluten. I am wondering about this connection. My dd has had trouble with constipation since age 1. I am considering having her tested.

[Suzan]

Dear susan

You did not mention what was the response of the doctor and the nurse when you said she is on 300 mg dose

 

At that point, she had me tell her all of my concerns so she could take them back to the doctor and then he came back with wanting to retest so we didn't really revisit the 300 mg dose. I will be sure to talk about it again however. She is on some high doses of various supplements based on past testing we have done. She shows signs of malabsorbtion and mitocondrial markers, at least before we found out she was gluten intolerant......

 

Susan

[Suzan]

Hi Suzan,

 

I read your food post, and will comment on both.

 

My daughter (I think) is pretty clear cut pandas. She was "normal" until January when she had a sudden onset of behavoir issues, and a positive culture. She is 5.

 

Prior to pandas, she was always a picky eater- but in the realm of other kids her age. She had reliable foods that she loved, and I could count on her eating (yogurt, honey nut cheerios, pizza, etc) Sometime during the onset of pandas, she lost taste for everything. She would be hungry, but could not find anything that appealed to her. For about 2-3 weeks the only thing I could get her to eat were pancakes with Aunt Jemima (fake) syrup. It sounds totally like what you are describing. Fast forward to now, she has been on antibiotics for 3 months (zithromax for 2 of them). She is MUCH better. She is slowly reintroducing more foods to her diet (interestingly enough, not the ones the ones that were her favorites before). I finally feel like she is eating a somewhat balanced, nutritious diet. It has been said that pandas can cause a type of anorexia- I wonder if my dd had a 5 yr old version of that.

 

Has your daughter been on zithromax? Could you try it for a month?

 

My daughter did have a positive culture. We only had her titers done after 2 mos on antibiotic. They came back in the range of normal. I know the neurologist will want to run them again- but I don't think I will. DD is terrified of doctors and needles, and from the research on this sight, it seems titers only prove that there was a strep infection. It is not an accurate test for pandas.

 

One question? When did you find out your child was sensitive to gluten. I am wondering about this connection. My dd has had trouble with constipation since age 1. I am considering having her tested.

 

Hi and thanks for your response!

 

Regarding your gluten question, we had a celiac panel done on her while trying to determine the cause of her seizures. The test came back normal for celiac but positive for gluten intolerance (IgG). She went gluten free in September 2008. The only problem with celiac testing is it can be very unreliable. I still wonder if my dd has celiac. But, she has improved very much on the gluten free diet. I need to remember this as we go along. She used to watch TV all the time and was so tired she could not play. Now she plays and has a lot of energy. Also, she has very bad gas and diarrhea and stomach pain which has totally cleared up. She can't eat a speck of gluten without getting sick now.

 

The story of your daughter and her eating issues does sound very similar. After we went gluten free, she had an increase in the foods she would eat. I really think her food issues did get worse after her last round of strep. At least I know what to look for now the next time she gets it. Tonight I got her to eat a slice of apple, a drink of soy protein milk and a piece of GF/DF pizza. Now she's eating a bunch of popcorn that has dairy flavoring but at this point I'm happy she's getting a lot of calories.

 

We only did a z-pac for 5 days. I don't know which doctor to ask for more. If the neuro is not interested in thinking it may be pandas, then maybe her ped would do it. I fear that I'll end up with no one who will believe me until things get worse.

 

Susan

[EAMom]

Hi Susan,

 

 

Lots of PANDAS kids have low (or normal) strep titers. IMO getting/tracking ASO/anti-dnase b are unnecessary if you already have positive cultures. (In other words...if you already have positive cultures, I wouldn't bother with titers unless your child enjoys being stuck by a needle for a blood draw!) Be aware that a lot of docs are confused about this issue and will use low titers as a reason to rule out PANDAS. ASO/anti-dnase b levels rise in some kids that have had strep (not all) but are not the anti-bodies that are the source of the problem in PANDAS.

 

In other words...lots of PANDAS kids can have negative (or normal or low) strep titers. A lot of docs are confused about this issue and will claim that a child with low titers cannot have PANDAS. This is not true!!

 

Strep titers are an extremely poor "test" for PANDAS. Positive throat cultures, pattern of symptoms/exacerbations, response to antibiotics (and steroid burst), and total history is what is really important to diagnose PANDAS.

 

If your child is not on prophylactic abs I would recommend throat cultures (including family members) when you have exacerbations...not blood draws for strep titers. (I should add however, that it is posible to have a false negative strep culture...in other words, a child could have strep hiding out in the sinuses and the throat culture would be negative....so cultures, while worth doing, aren't always 100%.)

 

For comprehensive and well researched information on strep titers read Buster's (under essential threads) Aug. 24 2008 and Jan 11 2009 posts http://www.latitudes.org/forums/index.php?...art=#entry29305 All your questions (and more) will be answered.

 

This information is from one of Buster's more recent posts (this month) http://www.latitudes.org/forums/index.php?showtopic=4785

 

They were able to isolate three auto-antibodies that were created in response to Group A B-Hemolytic Streptococcal infections in patients with Sydeham Chorea and PANDAS. Now these auto-antibodies have nothing to do with ASO or Anti-DNAse B or those tests. I really want to underscore this because so much attention is often paid to ASO and Anti-DNAse B, but it appears neither of those antibodies have anything to do with PANDAS (except confirm whether you once had a strep infection -- and even then with a 33% false negative rate -- see A little bit about ASO titers and More about ASO ).

 

Unfortunately, this "test" for PANDAS (that Buster discusses in his recents post...anti-neural antibodies and CaM kinase II levels) are not commercially available (that I am aware of)...in other words, they are only done in a research setting.

 

I do agree that a z-pac for 5 days wouldn't necessarily be enough to clear up a big PANDAS exacerbation.

[bronxmom2]

Hi, I am wondering-- I can see why LOW titers don't rule out PANDAS, but do very HIGH titers tell us anything-- beyond the fact that the child's been exposed to strep?

[EAMom]

HI bronxmom2,

 

yes high titers can be evidence of a past strep infection, which may be useful "proof" of strep in the past if you can't get a positve culture. However, if you already have positive cultures, that is more than enought "proof" that you have had strep.

 

The problem with putting too much emphasis on titers is that lots of normal (non-PANDAS) kids can also have high titers (and strep). So, you really have to look at the whole picture...symptoms, history, response to abs, etc to diagnose PANDAS. To further add to the confusion, it is difficult to predict (highly variable) how quickly titers will fall. So, elevated titers don't tell you if you had strep 2 mo. ago or 8 mo. ago (or longer) and that can make it hard to correlate titers (if they do rise) with PANDAS symptoms. In other words, you don't really know what the lag time is between strep infection and rise/fall of titers, which may vary with the person, strain of strep, whether the person is on abs, and other factors.

 

I suppose one reason I'm a big non-believer in strep titers is somewhat personal...my dd has always had low titers, in spite of postive cultures and PANDAS severe enough to require hospitalization.

[EAMom]

Hi Susan,

I should also reply to your food post (under the OCD forum...lots more people will read and comment if you re-post under PANDAS).

 

Lots of PANDAS kids have food issues. My dd had full blown anorexia nervosa last year at age 7.5 years (distorted body image, fear of sugar, fear of weighing more than 50 pounds) with her PANDAS. She lost 15 % of her body weight in a 2 week period, landing her in the hospital for 6 days (diagnosed with malnutriton, acute food refusal, OCD, anorexia nervosa, strep culture positive). Others get fear of choking or other OCDish food issues that lead to weight loss and food restriction. I also vaguely remember someone saying their child had altered senses (couldn't taste?), maybe that was Diana Pohlman?

 

In any case, I would definitely get your dd cultured (do throat and also vaginal if she has that history). If they are negative (and your dd was recently on abs), I would repeat the cultures in 3 weeks (since recent abs can cause a false negative culture.)

 

On titers, I should also note that skin strep could cause PANDAS symptoms but won't cause a rise in ASO (it could cause a rise in anti-dnase B ). I don't know for sure about vaginal strep (what kind of a rise it might cause)....

 

I should also comment, if you want to help prove your PANDAS case, you need to be vigalant about getting yourself (and family members cultured) if your dd has ramping symptoms or if you suspect you/they have strep for any other reason. It isn't nearly as convincing to tell a doctor "I think I had strep 2 weeks ago and now my dd has increased symptoms" as to actually be able to say "I have/had strep with a positive culture, and now my dd has increased symptoms."

[Suzan]

Hi Susan,

I should also reply to your food post (under the OCD forum...lots more people will read and comment if you re-post under PANDAS).

 

Lots of PANDAS kids have food issues. My dd had full blown anorexia nervosa last year at age 7.5 years (distorted body image, fear of sugar, fear of weighing more than 50 pounds) with her PANDAS. She lost 15 % of her body weight in a 2 week period, landing her in the hospital for 6 days (diagnosed with malnutriton, acute food refusal, OCD, anorexia nervosa, strep culture positive). Others get fear of choking or other OCDish food issues that lead to weight loss and food restriction. I also vaguely remember someone saying their child had altered senses (couldn't taste?), maybe that was Diana Pohlman?

 

In any case, I would definitely get your dd cultured (do throat and also vaginal if she has that history). If they are negative (and your dd was recently on abs), I would repeat the cultures in 3 weeks (since recent abs can cause a false negative culture.)

 

On titers, I should also note that skin strep could cause PANDAS symptoms but won't cause a rise in ASO (it could cause a rise in anti-dnase B ). I don't know for sure about vaginal strep (what kind of a rise it might cause)....

 

I should also comment, if you want to help prove your PANDAS case, you need to be vigalant about getting yourself (and family members cultured) if your dd has ramping symptoms or if you suspect you/they have strep for any other reason. It isn't nearly as convincing to tell a doctor "I think I had strep 2 weeks ago and now my dd has increased symptoms" as to actually be able to say "I have/had strep with a positive culture, and now my dd has increased symptoms."

 

Thank you for your help on this. She is getting more blood work today, I assume more antibody tests but I have not seen the order yet. I hate to get her cultured, she freaks out so badly. But I hear you, I see that we need it. She seems much improved today but we will see. Our doctor is far away which makes it hard for frequent cultures but I see that it is important. I think I will need to rethink where we are getting care. Do urgent care places do 72 hr cultures or just the rapid? I started to wonder if I was a carrier today. Every time I get swabbed I have it but I only get swabbed when I am obviously sick.

 

Susan

[dcmom]

Suzan,

 

My local CVS minute clinic will do cultures (not just the quick test), I am sure most urgent care facilities will as well. I have found it a lot easier to go this route sometimes, than deal with appts at doubting pediatrician's offices...

[alisaber]

Suzan,

 

My local CVS minute clinic will do cultures (not just the quick test), I am sure most urgent care facilities will as well. I have found it a lot easier to go this route sometimes, than deal with appts at doubting pediatrician's offices...

Dear Suzan

I think culture is the sure tool to diagnose Strep infection .

Dear Colleagues

What type of Antibiotics did the doctor give you when your son's culture was positive?