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Blood Tests "Normal"---now what?


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Got bloodwork results from dr. T:

 

1. There is no evidence of strep infection or carriage, and she makes good antibodies to pneumococcal vaccine suggesting that she should show the titers if she were infected.

 

2. There is no evidence of mycoplasma infection or carriage ....

 

3. No evidence of Lyme

 

4. Her Immunoglobulin and IgG subclasses are normal, i.e. no evidence of immunodeficiency.

 

5. Ferritin and ceruloplasmin are normal.

 

6. Anti-pneumococcal antibody testing is normal.

 

Now what??? Is it time to throw in the towel?? STill haven't talked w/dr. t, but in the e-mail, he said her clinical presentation is suggestive. But where is infection??? She seems to be in perfect health! No signs of past infection. No signs of current infection. Unless the strep was so long ago (like years, when the mild ocd first started), and it was a virus that kicked things in. But if this is the case, and she's healthy, shouldn't the tics be subsiding, not increasing????

 

There was a p41 on her western blot IGG and IGM, but I truly don't think that is a can of worms that needs to be opened. I think all the lyme advocates might jump on me for that, but I almost think i'm just reaching here with the pandas dx now.

 

dr. t said we could try abx without knowing what we are treating, but now I'm afraid even zithromax might make tics worse? I think I've read about that happening, or also when people stop, it's worse than before.

 

So if pandas is an "out of control" immune system, why are all her immune tests normal? What now.....?

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Got bloodwork results from dr. T:

 

1. There is no evidence of strep infection or carriage, and she makes good antibodies to pneumococcal vaccine suggesting that she should show the titers if she were infected.

 

2. There is no evidence of mycoplasma infection or carriage ....

 

3. No evidence of Lyme

 

4. Her Immunoglobulin and IgG subclasses are normal, i.e. no evidence of immunodeficiency.

 

5. Ferritin and ceruloplasmin are normal.

 

6. Anti-pneumococcal antibody testing is normal.

 

Now what??? Is it time to throw in the towel?? STill haven't talked w/dr. t, but in the e-mail, he said her clinical presentation is suggestive. But where is infection??? She seems to be in perfect health! No signs of past infection. No signs of current infection. Unless the strep was so long ago (like years, when the mild ocd first started), and it was a virus that kicked things in. But if this is the case, and she's healthy, shouldn't the tics be subsiding, not increasing????

 

There was a p41 on her western blot IGG and IGM, but I truly don't think that is a can of worms that needs to be opened. I think all the lyme advocates might jump on me for that, but I almost think i'm just reaching here with the pandas dx now.

 

dr. t said we could try abx without knowing what we are treating, but now I'm afraid even zithromax might make tics worse? I think I've read about that happening, or also when people stop, it's worse than before.

 

So if pandas is an "out of control" immune system, why are all her immune tests normal? What now.....?

 

There is still a lot that is not known about PANDAS, and truthfully, all the testing of the immune system is to see if something comes up to justify insurance coverage of IVIG. No one has even looked at what a PANDAS child's immune system would/should be like.

 

My daughter's tests were all normal. However, I know she has PANDAS because of her history of positive strep throats, followed by such a complete shift in behavior. When this all started for her, the only tests run were strep titers, CBC, and thyroid. Well, her strep titers were high. However, I would say that is normal too, since we had confirmed infection(s) prior. She had an immune workup almost a year after she recovered, and that was normal.

 

Her cunningham test was run about 5 months after her first PANDAS episode, when she had no symptoms. Anti-neurals were within norms, and her cam k was 112. That cam k score actually overlaps with normal and PANDAS.

 

So, simply put, despite any test, PANDAS is still a clinical diagnosis done by a knowledgeable PANDAS doc.

 

I think at this point, a trial of antibiotics is pretty benign. If you are concerned about zithromax, perhaps augmentin or a chephalosporin (like keflex or omnicef) can be used instead. Perhaps post on the TS forum too, to see what antibiotics (if any) don't increase tics.

 

Good Luck.

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Is Dr T. still using Quest for lyme testing? He did that for us and we had a SO very false negative that cost us dearly. Also did not test for coinfections Bartonella, babesia etc.

Dr T's bloodwork was awesome other than that and he practically eradicated my son's asthma with an accurate clincal diagnosis of Mycoplasma that also showed up on bloodwork. he is a great doc and on the forefront of wanting to know more to help our kids.

Just wanted to let you know our experiences. Lyme is a clincial diagnosis as is PANDAS and Dr Jones was what we needed and DS is coming along much better than when we thought he only has Pandas. He has both at this point but the Lyme came first. Basically the antibiotics that Dr T gave us did wonders overall becaiuse Biaxin is used for Bartonella/lyme too. We wasted $30,000 on IVIG with Dr K. which didnt help much at all.

 

I think Dr T is willing to listen, has a brilliant mind and a HUGE heart for helping kids. He is financially so much more reasonable and would be happy to test further if you discuss with him.

I am still in touch with Dr T because he is such a sweet person, changed my son's life for the better and is open minded, no ego issues.

We see Dr Corson now for Lyme- its a shorter drive for us thats why.

Again, just info for you and some thoughts to think about

Jodie

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I could have written your post, except my DS6 has a very low ferritin level (not sure what that has to do w/ PANDAS)and negative Western Blot. We are consulting w/ Dr T. My DS started 250mg biaxin 21 days ago before I had blood drawn for the blood testing. The day before I consulted w/ Dr T, I took my DS to the barber for his regular haircut that we've never, ever had a problem with before, since his first haircut at 18months. He got up in the chair and tic'd so badly, blinking eyes and clearing throat, it was pitiful to watch. He became upset when the barber pulled his hair upward to cut it, he started to cry and asked me to come hold his hand. I stood there, dodging the barber, holding DS's hand so he could get his hair cut and watched him tic so badly. The barber asked me if he was sick and what was wrong w/ him. I wanted to cry but that experience made me determined to get someone to listen to me about PANDAS. That's when I called and emailed Dr T.

 

He started biaxin 21 days ago. Within a few days, the tics started to lessen in intensity and frequency. In a weeks time, we realized he had not had any angry outbursts. Then we started noticing how much happier and cheerful he was. He is still ticcing. Still has ocd's, fears, etc... but he is better.

 

Last night, we took him to dinner at a nice place (real tablecloths, lol). He used please and thank you, was very sociable, happy, sat STILL in his chair at dinner, occupied himself w/ the crayons and activity/coloring page, ate EVERY bite of his food, plus a hot fudge sunday and we had the most pleasant dinner we've had in a VERY long time. Dh and I could actually carry on a conversation w/out interruption and w/out having to ask DS to get back in his chair, stop fidgeting, get out from under the table, show manners, etc.....

 

Based on our experience, I would highly recommend starting the antibiotics. What do you have to lose?

 

The Western Blot was sent to a lab called ARUP in Salt Lake City. I suppose the local lab here in MI that did all the other levels, sent it there.

 

Wanted to add, my DS is not sick. He hasn't been sick since Feb when he had a bad ear infection and his eardrum was close to bursting. He first got sick last fall after FluMist and then a subsequent unknown infection when all this started. He got better and Dec, Jan and Feb he was back to nearly normal. Feb ear infection and its been all downhill since, even though the ear infection was cleared and he hasn't been sick since.

 

Cindy

Edited by nicklemama
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Yes, still waiting on the Cunningham test...hoping by next week.

Nicklemama---did your child have confirmed strep? Mine doesn't even have that. PLus my brother has Tourette's. As for antibiotics, she's really a pretty happy little girl -- albeit hyper. We homeschool, so she's engaged and active with sibs. Yes, she will throw something if it's not to her liking, but I would not change her little personality one bit. It's the tics that are so bad, and the ocd, while not debilitating, is there.

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DS has never had a known strep infection because he was never tested whenever we took him to the ped's when he was sick. He's rarely sick. Usually when he gets sick during the winter, it turns to a bad ear infection. He doesn't even tell us his ear is bothering until its nearly bursting, but it always follows an illness w/ nasal congestion, chest congestion and cough. Never has complained of sore throat. When he got sick last fall, I got sick after he did and my throat hurt so bad I was taking Motrin for it. Stupid me, I never even considered it might have been strep. DS never complained of sore throat even though I asked him daily.

 

Cindy

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Just Biaxin 250mg 2x day, plus the first three days, Motrin 200mg 3x day. We have a neurology appt on Monday w/ a local dr who has supposedly treated PANDAS kids and believes in it. Now, the question remains if she will be convinced by a non textbook case, as in ASO and Dnase titers negative and never had throat swab when sick. We shall see.

 

Cindy

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Yes, we did phone consult w/ Dr T and I took his recommendations to our pediatrician. She wasn't buying into PANDAS and wasn't much help but when she heard he'd given DS a tentative diagnosis based on clinical symptoms, she agreed to the recommendations and had his blood drawn. We'll see how helpful she is now that the titers and other values are normal. Hopefully, she'll look at the results we're getting from abx.

 

Cindy

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Hi,

 

have you checked family members for strep (asymptomatic carriers)? Start with throat cultures, if those are neg, then you can do titers.

 

btw, I can't wait for your Cunningham results.

 

But, I do agree with others that PANDAS is a clinical diagnosis. Lab tests don't always give you the answers. My dd has always had low low strep titers (despite positive cultures, high Cunningham tests). And, if we hadn't insisted on the throat culture, the docs wouldn't have done it. We also had to insist on a throat culture for her younger sister (also no sore throat, also positive). And these tests are just pieces of a puzzle. History, symptoms, response to antibiotics (and advil, or pred), are all very important as well. Some kids just aren't lucky to have the the titers (or positive cultures) as clues. Sometimes strep is there, but not in the throat (sinuses, skin, etc.). Sometimes, I think, it's not there anymore (or perhaps some is intracellular?) but these kids have a pitands response after an initial strep trigger months b-4.

Edited by EAMom
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Yes, still waiting on the Cunningham test...hoping by next week.

Nicklemama---did your child have confirmed strep? Mine doesn't even have that. PLus my brother has Tourette's. As for antibiotics, she's really a pretty happy little girl -- albeit hyper. We homeschool, so she's engaged and active with sibs. Yes, she will throw something if it's not to her liking, but I would not change her little personality one bit. It's the tics that are so bad, and the ocd, while not debilitating, is there.

 

just throwing this out there....maybe your brother has pandas/pitands, it doesn't necessarily go away as you enter adulthood.

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FYI - my son's bloodwork has all been normal as well, however he is a classic case. His biggest catch (other than the normal bloodwork) - the infection that started it all was impetigo, not the typical "strep throat" infection. Our son sees Dr. Murphy, who acknowledged that even with normal bloodwork, it doesn't rule anything out. Clinical presentation is just as, if not more important. The bloodwork just gives them another piece to a very complex puzzle.

 

We've been treating with abx since January, and have seen a very steady, albeit slow, progress back to normal.

 

Hang in there.

 

PS - we haven't done the Cunningham tests yet b/c he's too young...but we plan to as soon as we can!

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Airial95---what abx are you on for your son?? Does he have tics?

Cindy---wondering how your apt. went today? Did your son start suddenly? We had the ocd-ish for over a year, then a few tics, then a sudden downslide.....so I wouldn't call us a "classic" case really, which makes it hard.

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