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Hi

We are suspecting Pandas in my dd11.

 

We did some bloodwork on her, and are awaiting results. Although her behaviour is not as severe as some of the cases I have read about here, She is not doing well socially at all. ( anxiety OCD, immaturity etc.) She is doing OK academically.

 

My pediatrician sympathized with me and drew blood as recommended by Dr. K. Awaiting results. Pediatrician is clueless about this.

 

Can anyone tell me what the results should be?? (excuse my sheer ignorance) And where do we go from here?

 

Before I bumped into Pandas, someone recommended I see a specific chiropractor. On the consult visit, he said that she has significant brain stem pressure and would do manipulation to help the body self heal. Did anyone here every do something like this or similar, with positive results??

 

Thanks all. I need all the help I can get.

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Hi, and welcome.

 

While chiropractic treatment may help make your child feel more relaxed, I wouldn't put my money there. You're going to need your $$ to be frank about it. I did, however, pay for hour long massages for my son when he was at his worst with severe motor tics in his neck, shoulders, and trunk. It helped him during the worst of it.

 

I am not sure what bloodwork was ordered, but imagine it is the ASO and anti DNAse B - markers for Streptococcal infection?

 

Some of us manage with antibiotics only, some IVIG only, some antibiotics followed by IVIG, and so on. So, it really depends on how your child is doing and the doc you choose to work with. If your doc presently is willing to treat based on the labs done, he/she may prescribe an appropriate antibiotic. Sounds like he'll have a learning curve. Not really optimum for you or your child. Azithromycin and amoxicillin are the two most commonly used. Some do better with omnicef, or a couple other antibiotics.

 

Feel free to provide more details about your child so we can help more. Do you live near a PANDAS doc?

 

This forum helped me and my son so much. Look forward to getting to know you!

 

 

 

 

Hi

We are suspecting Pandas in my dd11.

 

We did some bloodwork on her, and are awaiting results. Although her behaviour is not as severe as some of the cases I have read about here, She is not doing well socially at all. ( anxiety OCD, immaturity etc.) She is doing OK academically.

 

My pediatrician sympathized with me and drew blood as recommended by Dr. K. Awaiting results. Pediatrician is clueless about this.

 

Can anyone tell me what the results should be?? (excuse my sheer ignorance) And where do we go from here?

 

Before I bumped into Pandas, someone recommended I see a specific chiropractor. On the consult visit, he said that she has significant brain stem pressure and would do manipulation to help the body self heal. Did anyone here every do something like this or similar, with positive results??

 

Thanks all. I need all the help I can get.

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Have you had positive strep cultures or rapid tests?

I don't know what tests your doc has run, but I suspect he's looking for titers (antibodies) to toxins that are excreted by groupA strep- ASO & AntiDnase. Those are blood tests that are generally run to confirm a recent strep infection. A positive result confirms that there was a recent infection. Unfortunately, a negative result DOES NOT rule out a recent strep infection, as many people do not have elevated titers even when it is certain that there has been an infection.(a positive throat culture) If you already have evidence of an infection via rapid strep test or culture...there really isn't a need to confirm with a blood test. There are many doctors who do not understand how to interpret the titers and that can sometimes cause problems for patients who are denied treatment based on negative titers.

 

Dr. K will know how to interpret the tests, though. Are you seeing Dr.K, or just consulting? I don't know what other tests may have been ordered.

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I agree that while chiropractic treatment might help with relaxation, it won't be the thing that treats PANDAS. Since the neuropsychiatric symptoms are caused by an autoimmune reaction to strep infection, the infection and the autoimmune response need to be treated/addressed. My ds has had some osteopathic manipulation treatments as part of our approach to his various neurological problems, but those treatments are not what we are using to treat his PANDAS. We are using antibiotics (azithromycin has worked the best for him so far) and a natural anti-inflammatory supplement called Enhansa. We are only about 5 weeks into his diagnosis so we have not reached the point of IVIG. There are wonderful, helpful, knowledgeable people on this forum so you are in the right place!

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Thanks for all the replies

 

I just got the preliminary results and the strep ASO is 301. The AntiDnase is over 300 too. Her last documented strep was 3 years ago. (She was observed to have significant improved behavior following the abx then, unfortunately I did not know about Pandas/ocd relationship until 3 wks ago and just decided to retest) Do these numbers indicate Pandas?

 

My pediatrician does not quite believe in Pandas; I am bullying him to prescribe abx (zithromax) and will take it from there :)

 

I do live near Dr. Susan Schulman. I was just gathering info from Dr. K. His website helped me tons.

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The titers may indicate a recent strep infection...and that's all. There is not a lab test for PANDAS. Its a clinical diagnosis. If she is having problems right now, it may be a good idea to get her swabbed. Establishing a temporal relationship between the neurological symptoms and strep is important. Redraw titers in a month or so- rising or decreasing titers will give you more information than just elevated titers. Rising titers would indicate that there is still strep activity present. But you cannot beat an actual positive strep test for evidence of strep.

Improvement in neuropsychiatric symptoms from abx is also a good indicator that there is some kind of underlying bacterial infection at the root of those symptoms.

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My ds' recent ASO and AntiDnase B titers were a little higher than your dd's and the last strep infection he had that we knew about was two years prior to those labs. He ended up with a positive swab for strep about 5 weeks after these labs were drawn. So whether or not his titers were high because he had an asymptomatic infection before the titers were checked or because an infection was present then but not yet symptomatic I do not know. You can have strep infection and have no symptoms so it could be that your dd has a current infection, or had a recent infection that you did not know about. With my son's recent infection he never did show symptoms. We had him swabbed b/c his behavior was continuing to deteriorate. I second what Peglem said about having your dd swabbed and re-checking titers, and about seeing how she responds to being on abx. If you can bully your ped into rxing zithro that's a good one to start with.

 

Thanks for all the replies

 

I just got the preliminary results and the strep ASO is 301. The AntiDnase is over 300 too. Her last documented strep was 3 years ago. (She was observed to have significant improved behavior following the abx then, unfortunately I did not know about Pandas/ocd relationship until 3 wks ago and just decided to retest) Do these numbers indicate Pandas?

 

My pediatrician does not quite believe in Pandas; I am bullying him to prescribe abx (zithromax) and will take it from there :)

 

I do live near Dr. Susan Schulman. I was just gathering info from Dr. K. His website helped me tons.

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Let me clarify.

My daughter DID NOT have a strep for the last 3 years. Interestingly my ds13 always has tics prior to a strep infection and it disappears with abx.

We have put my daughter on Omega 3 and Vitamin D and have seen dramatic difference. But, not enough for me to be perfectly satisfied yet. I could say she is in asymptomatic now, but the slight ocd with handwashing still persists. Also the social anxiety. Could it be that her strep levels were higher and the omega 3 and vit d helped bring it down a bit?

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Let me clarify.

My daughter DID NOT have a strep for the last 3 years. Interestingly my ds13 always has tics prior to a strep infection and it disappears with abx.

We have put my daughter on Omega 3 and Vitamin D and have seen dramatic difference. But, not enough for me to be perfectly satisfied yet. I could say she is in asymptomatic now, but the slight ocd with handwashing still persists. Also the social anxiety. Could it be that her strep levels were higher and the omega 3 and vit d helped bring it down a bit?

Many PANDAS kids are asymptomatic for strep (other than the neuro symptoms) so you really can't know that she hasn't had a strep infection unless you've tested for it. All I'm saying is that if you are looking for strep evidence that correlates to neuro symptoms, you are better off getting an actual positive strep test than trying to catch the titers as evidence because the titers and interpretation of them is not as solid.

 

IMHO, the omegas and vitamin D likely helped by decreasing inflammation.

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  • 1 month later...

Thanks for all the replies

 

I just got the preliminary results and the strep ASO is 301. The AntiDnase is over 300 too. Her last documented strep was 3 years ago. (She was observed to have significant improved behavior following the abx then, unfortunately I did not know about Pandas/ocd relationship until 3 wks ago and just decided to retest) Do these numbers indicate Pandas?

 

My pediatrician does not quite believe in Pandas; I am bullying him to prescribe abx (zithromax) and will take it from there :)

 

I do live near Dr. Susan Schulman. I was just gathering info from Dr. K. His website helped me tons.

 

did you ever see Dr. Schulman? I've seen her you tube videos.

 

PS Many in the NY area go to Dr. B. in Ct.

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Let me clarify.

My daughter DID NOT have a strep for the last 3 years. Interestingly my ds13 always has tics prior to a strep infection and it disappears with abx.

We have put my daughter on Omega 3 and Vitamin D and have seen dramatic difference. But, not enough for me to be perfectly satisfied yet. I could say she is in asymptomatic now, but the slight ocd with handwashing still persists. Also the social anxiety. Could it be that her strep levels were higher and the omega 3 and vit d helped bring it down a bit?

 

The Omega 3 & Vit D might have helped but they wouldn't have dropped the antibodies. The test does indicate a recent infection though, so I wouldn't worry too much about that.

 

Mostly just reiterating that a lot of, if not MOST P.A.N.D.A.S. kids are asymptomatic for strep. I won't get ANY strep-like symptoms when I get it. I just know to get tested whenever my friends start getting sick. I tested skyhigh for strep (especially a specific kind called GABHs) for the first fourteen years of my life, but only showed symptoms for the first half of that. Quite often when P.A.N.D.A.S. kids get strep our first hint is our behavior/moods/seemingly-unrelated-symptoms. I'll know to check my throat if I'm more irritable than usual, for example. Not trying to scare you, but just saying you never know!

 

It's also worth mentioning that strep isn't exclusive to the throat, although that is definitely its favorite hangout spot. Strep is especially common in the gut for us, but can be found other places too. Also, PITAND (Pediatric Infection Triggered Autoimmune Neuropsychiatric Disorders), isn't exclusive to strep either. P.A.N.D.A.S. is just a type of PITAND, but a lot of us react to a whole lot of stuff besides strep.

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Thanks all,

 

We get to see Dr. Schulman next Wednesday. She has treated over 100 kids with mild/moderate Pandas, so we are starting there. Although I've got to say, we are seeing significant differences with Omega 3 and Vitamin D supplements.

 

My daughter has been and unusually healthy child. She never had the typical childhood illness, in the traditional fashion. Looks like it affected her elsewhere...... I will keep you all updated.

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Hi BWS--I am sorry you have had to find us here. Please tell Dr Schulman that her videos online are wonderful, that at least one PANDAS mom has watched them (almost all on PANDAS) and cheered outloud while watching--thanks.

 

(ps--I am sure you have already found the "helpful threads" at the top of the PANDAS forum page here, and also the websites associated with PANDAS, hope these all help, www.pandasnetwork.org

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Thanks all,

 

We get to see Dr. Schulman next Wednesday. She has treated over 100 kids with mild/moderate Pandas, so we are starting there. Although I've got to say, we are seeing significant differences with Omega 3 and Vitamin D supplements.

 

My daughter has been and unusually healthy child. She never had the typical childhood illness, in the traditional fashion. Looks like it affected her elsewhere...... I will keep you all updated.

Hi,

That last statement reminds me of my son... he never SEEMED to get sick. Never complained of anything, but he had some mild issues that now in restrospect I can see where PANDAS. He had episodes of stammering, eye-blinking, etc. Only once did we "catch" the strep, because a sibling had it. His swab turned positive sooner than anyone elses, yet he was not in any kind of pain, no fevers, nothing. That was until he got a nasty flu (and probably strep too) and he went for a nose dive...

Anyhow, my point is, in our families strep does not present like your typical sore throat/high fever thing. It's a long story but over the last two years we have been going crazy trying to erradicate strep. Just yesterday my husband went to see his doc, his ASO was 250 (we've been cheking and it seems to be always at that). The doctor did a rapid just in case, and it was positive. So, like others have said, just because she did not have the typical symptoms, it does not mean she did/does not have strep. Also keep in mind it can be in other areas beside the throat/tonsils.

I would say as a first step, get the whole family cultured and if possible run titers on everyone. You may have a carrier and taking that out of the equation now will save you a lot of grief in the future.

The fact that symptoms subside with abxs is a strong indication you may be dealing with PANDAS. Also, considering you live in the NE, I would test for Lyme and co-infections (my son has those too, I don't know if they are causing the PANDAS or just producing the same symptoms --if you like up Bartonella in particular, the neurological symptoms are very similar), and even consult with an LLMD to rule it out.

I am glad you are seeing good results with Omega-3s and Vit D. Best wishes for complete recovery!

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