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I guess we're moving over to the PANDAS forum?!


Toms_Mom
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Titers elevate 1 to 3 weeks after infections which is typically associated with an increase in behavior. I suggest you test your Son's CaM Kinase to concretely RULE out PANDAS.

 

A five day course of antibiotics and increase in tics should never ever rule out PANDAS...... Sorry if I've offended you but I don't want anyone new to the forum to think that if I give my kid 5 days of antibiotics and his TICS increase its not PANDAS. We did see measurable results until after 30 days of Azithromycin. My child is two weeks post his second IVIG and most likely had undiagnosed Kawasaki's which is a very serious illness and UNFORTUNATELY will never be resolved with antibiotics alone.

 

 

 

 

 

he must have had the infection for a while prior to his dental appt and his tics were not increasing at all..didnt know it was infected till the dentist noticed it from the xray

 

the dentist put him on azith and he had the tic spike start that first night after taking the 2 aziths and it continued while on the antibiotic.

 

he finished the antibiotic last week and immediately the tic spike ceased(within 24 hr of the last tab)

 

seems pretty clear to me it was a spike while ON the zith

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SF mom

 

perhaps you arent aware of my son's history and that he is now 20 yo and when 11 yo we spent 6 months under the care of Dr Murphy when she was at Shands and she absolutely ruled OUT PANDAS for him

 

he has never exhibited any strep infection, and she ran comprehensive titres and other evaluations on him

 

we have a 3 generation family history of genetic TS

 

I was just posting our info re the 5 day zith, not suggesting that this was the finite way we ruled out PANDAS. Only that it settled a nagging concern in my mind and that I would have expected a decrease in his tics on azith if he had any PANDAS component, not the spike that we saw

 

in fact the only reason I posted was to let Mary know that there was a form of azith without red dye so I really dont want her thread to go off at a tangent on our results

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he must have had the infection for a while prior to his dental appt and his tics were not increasing at all..didnt know it was infected till the dentist noticed it from the xray

 

the dentist put him on azith and he had the tic spike start that first night after taking the 2 aziths and it continued while on the antibiotic.

 

he finished the antibiotic last week and immediately the tic spike ceased(within 24 hr of the last tab)

 

seems pretty clear to me it was a spike while ON the zith

Thanks for the clarification, and for indulging in my curiosity....

 

I'm glad that your son's tics decreased

 

~Karen

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Cheri, then why were you even questioning the possibility or association under the PANDAS board given your history and experience with your son's illness?

 

From my perspective you are just giving out wrong information that misguides individuals that might need serious invention. Sorry to be OFF TOPIC but you seem naive when it comes to PANDAS. AND when I see misinformation being posted, I need to be corrective for the sake of others children who are struggling with potentially very serious illnesses.

 

Again, if there is any DOUBT and that is why you are posting...... I recommend you test his CaM Kinase. I'd love to know how you concretely RULED out PANDAS.

 

NEITHER of my kids have raised Anti-DNAse-B and only one has elevated ASO. With Kawasaki's, typically there is never a positive throat culture (although there are complaints of a sore throat and swollen tonsils), raised ASO, raised Anti-DNAse-B, but shares 93 common symptoms with RF, the Japanese have identified the exotoxin of the S. pyogenes in 100% KD patients studied. It is a disease that is easily missed or misdiagnosed. IVIG or IVIG in conjunction with steroids is the only known treatment. It entered the US in the mid 70s and is now spreading like wild fire.

 

The only reason I mention the above is because my older son is 95% better and our younger son is yet to be treated. I pray every night that they will FULLY recover and never bare witness to another episode but we've had to take very aggressive measures for that to happen. AND, frankly I am angered by someone that suggests they can concretely rule out the association with a five day course of antibiotics especially given your history on these boards.

 

 

-Wendy

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I recommend you test his CaM Kinase.

-Wendy

 

Wendy,

 

I'm new here... can you explain to me what CaM Kinase is?

 

My ds had a negative throat culture and negative titers;

 

ASO 7

Dnase B- <60

 

But has moderate tics, anxiety and some OCD. No family history of TS or tics.

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Wendy

I had posted here a number of times at how so many of my son's onset symptoms matched those of kids with PANDAS and how I often wondered about whether altho he was ruled out as PANDAS, perhaps something else, maybe a PITANDS component was at work

 

I have posted many times re his having been under dr Murphy's care. SHE is the one who ruled out PANDAS in him years ago...after much testing and consultation over a 6 month period. This was just a confirmation of that for ME...

 

I thought perhaps those that had shown interest in his case may be interested to hear of the experience on azith

 

I dont see how anything I posted is "wrong information"?

I posted about my son having a five day course of azith and seeing a tic spike immediately, and that I felt that IF he had a PANDAS component there would have been a reduction in his tics NOT a spike

How is that wrong information?

 

It is an anecdotal observation based on fact...that is what happened

 

I am not sure where the aggressive tone you have toward me is coming from but I really dont have the energy to deal with it so I will just leave this thread back to Mary's info and hope that all works out well for your son Mary. Sorry that it went off track. That was certainly not my intention..I really just wanted to let you know about dye free azith

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Thanks Cheri and everyone who has responded. My dr. is out of his office today, so I think I will call in the morning and see if I can get a prescription for the dye free azith. EAMom I will suggest the full tablet/half tablet idea if he feels 500 mg is too high. Thanks again!

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Cheri,

 

I will admit your post angered me and apologize if I was aggressive in my response. I just think you should know better if you truly explored PANDAs, understand the science and tested his CaM Kinase to rule out strep related bacteria response. I will state MOST PANDAS children need much more than a 5 day course of Azithromycin. Related behavior/TIC rise as cross reactive antibodies rise/attack and sometimes there is a delayed response to infection 1 to 3 weeks. In my son's case it took six months (delayed response) for first TIC to appear and sudden ON-SET didn't happen for a YEAR after first tic.

 

Just so you know, with the S. Pyogenes (resilient strain of strep) it attacks the red blood cells, white blood cells and even IgG Subclasses making them potentially responsive to any virus/bacteria... hence PITANDS.

 

http://www.latitudes.org/forums/index.php?showtopic=6284

 

I don't know when the last time you saw Dr. Murphy was but I can assure you that the information regarding PANDAs is changing rapidly. Dr. K has always told me what I know today might not be what I know in six months from now.

 

Again, I sincerely apologize and do not want to alienate you from the world of PANDAS at all.

 

-Wendy

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Short Explanation: CaM Kinase is a protein in the blood that is elevated from cross-reactive antibodies due to strep bacteria. Best to contact Madeleine's assistant Kathy Alvarez: Kathy-Alvarez@ouhsc.edu and request to be a part of their study. Lab is closed for winter break so they will not be testing until after New Year but it doesn't hurt to contact Kathy now.

 

-Wendy

 

Madeleine W. Cunningham, Ph.D.

George Lynn Cross Research Professor

Microbiology and Immunology

Director, Immunology Training Program

University of Oklahoma Health Sciences Center

Biomedical Research Center Room 217

975 NE 10th Street

Oklahoma City, OK 73104

Tel 405-271-3128

Lab 405-271-2133 X47455

FAX 405-271-2217

email: madeleine-cunningham@ouhsc.edu

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Hi Mary,

 

We have a similar story. I started out on the other side of the board - eliminated all artificial ingredients and gluten for a period of time. My kids were doing very well and then had a relapse of tics/OCD with a strep infection. The relapse could not be attributed to anything that was eaten.

 

When you changed the diet and went all natural, how long was it before you saw improvement? How long had the tics been going on before you made the change? Was there anything else that could have explained the improvement? I am asking because in our case, we thought it was the diet that was making a difference, but in hindsight, my son had just finished a round of augmentin for a sinus infection when the improvement began. It could also be the case that the PANDAS reaction was starting to come down when you saw the improvement and that it maybe would have happened even without the change in diet.

 

Since starting antibioitics for PANDAS, we have found that we can give some artificial ingredients without having an exacerbation in tics or OCD. I still try to keep our home as natural as possible, but am not as strict about it. There have been times when they had plenty of artificial ingredients with no increase in symptoms.

 

Your pediatrician sounds great. It is wonderful that he is on your side. I hope you see immediate improvement, but if you don't, I would strongly encourage you to contact one of the experts. We have been to so many doctors who say they are familiar with PANDAS, but when we go to the appointments, we are disappointed with their limited knowledge and simplistic view of the disorder. Our pediatrician is wonderful, but he admittedly did not know what to do when 10 day courses of antibiotics did not always work.

 

Keep us posted.

Debbie

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I will state MOST PANDAS children need much more than a 5 day course of Azithromycin.

 

I completely agree with that Wendy. When we first "discovered" Azith, my dd took 6 weeks of full-strength Azith. to for her tics to go away (although OCD/mood was starting to improve within 14 days). Eventually tics returned (despite staying on Azith.) with exposure to strep and contracting viruses (eg fifth's, H1N1). They went away again with IVIG and continued full-strength Azith.

 

I guess my point is to emphasize to newbies...that if tics aren't gone in a week or two of abs, that doesn't mean it's not PANDAS. Sometimes it takes 1-2 mo. of full-strength abs (of the "right" antibiotic, Azith was antibiotic #4 for us)...sometimes even that isn't enough, then it's time to think of IVIG or PEX.

 

I also agree that low strep titers (ASO, anti-dnase b ) can be meaningless...my dd consistently tested low despite positive cultures and theoretically testing at the correct "time" post infection. When we tested her after being on abs for 1 year, her ASO was even lower (undectable) while her CaM kinase ll put her in the high PANDAS range (while she wasn't even in an exacerbtion!).

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Debbie,

 

I started the diet about a month after the tics began and saw definite improvement after 1-2 months. I don't remember any other illness at that time, but it's been so long I could be wrong. He's been on the diet for almost 2 1/2 yrs. We did try the GF/CF diet for a while, but it was so hard and I soon realized he did just as well on the Feingold- type diet. His tics have been relatively mild over the past 2 yrs. and whenever there was an exacerbation I could usually attribute it to a laxing of the diet. However, this last time I really could not figure out what was going on, so decided to try the strep test. I'm still not sure what it all means at this point of course. The main question I have is -can you have pandas with the only symptom being tics? He does not have anxiety/ OCD. He does have night terrors. And like I said before when this all began he had some anxiety/ OCD type fears. But that only lasted about 3 months thankfully. He did have nighttime bedwetting for about 2 years. But right now his main issue is the tics.

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