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Nightmare PANDAS/tics newbie - need help/advice


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Our son struggled with straight forward PANDAS and much OCD for three years without any tics. This year he had a mild fever for 1 day and the tics began right away. This time we could not figure out what he had. Our regular PANDAS doctor did not know either. A phone consult with Dr. T; he suggested to test for coxsackie virus and that is what he had. Most illnesses with him present neurologically instead of phisically, so I had no symptoms to describe. I would test for coxsackie virus and for yeast issues along with the other sugestions. Hang in there.....we ALL know how you are feeling (unfortunately)

 

blessings,

Linda

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Hi and welcome!   Good for you for testing with Igenex.   Both bands 31 and 39 are lyme specific, meaning that only an infection with borellia (lyme) will result in these bands showing up on the

Steroids are a tough one. They tend to work temporarily for PANDAS kids because they suppress the immune response causing the inflammation in the brain, as well as reduce the inflammation in general.

Just to give you a little more feed back on the Topamax. I am sure it may affect everyone different, but as I said my son takes it and he is a straight A student. In fact he is in our schools program for gifted students. I don't think it slowed him down at all. Best of luck.

 

Dedee

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@SF Mom - can you help me understand what "Cam Kinase II" test is? Is this part of the Moleculara Panel?

 

@T.Mom - I realized I had not answered your question on what symptoms preceded the sudden onset of the vocal tics. What we saw was rather subtle - a lot of allergy-like symptoms (Son never had Fall allergies) - itchy, watering eyes, sore throat and symptoms of sinusutis (in fact an allergist we took him to a week later, actually diagnosed him with sinusitis). Allergist actually prescribed PET scan but we were put off by the radiation dosage exposure. Could these symptoms be indicative of PANS/PANDAS?

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So we called up Dr J in CT for treating potential Lyme (probably gestational) - his first open appointment is 19 Sept - I dont think we can wait that long, the way sons' symptoms are progressing. Does anyone have any other recommendations on the East Coast for LLMD's? In the DC area there are a few but none of them as successful as Dr. J.

 

Advice much appreciated.

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So we called up Dr J in CT for treating potential Lyme (probably gestational) - his first open appointment is 19 Sept - I dont think we can wait that long, the way sons' symptoms are progressing. Does anyone have any other recommendations on the East Coast for LLMD's? In the DC area there are a few but none of them as successful as Dr. J.

 

Advice much appreciated.

We see a nurse practitioner who regularly works w/ Dr J. She is in DC - Kayleen Clute - http://ruthkriz.com

 

Good luck, Heather

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Thanks Heather - we will see if we can get on her calendar.

We are waiting on the Moleculara Lab results - which take 4-6 weeks unfortunately. In the meantime it is so frustrating to be losing the fight against this insidious disease. Teh antibiotics we gave our son have pushed the tics to a "new normal" - much higher than what he had before. We've had to greatly increase the dose of psychiatric drugs which is something we detest doing - just trying to get through the next dew weeks of school until summer when we can begin a blitz against whatever underlying problem exists

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OK - so we are driving up to NJ to see Dr. T since I've heard good things about him - l really hope he can figure out what the heck is wrong with our son. So far we've come up empty (though Lyme is a slim possibility and Moleculara has not yet sent us results).

 

We will also be seeing a LLMD Nurse Practitioner next week in the DC area for getting an opinion on Lyme.

 

My biggest fear is that we will be given a regimen of Antibiotics (for Lyme and or PANDAS infection) which (like last time) will push the tics up to an even higher permanent "new normal" and we will need to boost the dose of the psych drugs to counter the tics - which I hate doing....this is the most insidious disease in existence....

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I am definately able to correlate DD11's amount of ticcing (daily Excel charting and graphing) with amount of die-off and an inability to detox. The more killing we did, the greater her ticcing. During continuous tindamax treatment (which I think did the most toward decreasing her bacterial load) we saw ramping of motor/vocal tics which would not resolve. It didn't matter how much detoxing (epsom salt baths, lemon juice, psyllium) we did, the ticcing would not let up (curcumin and phosphatidylcholine did help her a little though).

 

It wasn't until we started pulsing, and her body was able to detox the die-off, that we saw a decrease in ticcing. A definate increase during the 3 treatment days, and a resolution during the 4 days off. We never tried psych drugs to counteract the ticcing - I was too scared.

 

Unfortunately, to deal with these infections the killing of bacteria and the resulting die-off has to happen. If herxing and ticcing gets too bad, I think we need to ease up a little on the abx and let the body decrease the amount of toxin buildup.

Edited by rowingmom
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Ok, just providing an update.

 

Dr. T has ordered a slew of tests. In the meantime he asked us to give our son 800 mg of Ibuprofen (400mg 2X day) per day. He took us through how this might benefit but I didn't quite follow the steps - apparently it disrupts a process (cytokines involved?) that impacts dopamine and is a "poor man's Cunnigham test".

 

Does anyone know more details about this? If it does take effect, how many days until we see a change?

 

Thanks!

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Hi Nitshel,

 

We did the Advil test with our son the end of May (just a few weeks ago) and Dr. T's urging. By day 3 of the seven day test my 4 year old was 100% tic free!

 

The first few days though we definitely saw an improvement until the day 3 breakthrough which was incredible. Amazing to see after 9 long months! This only lasted 2 days though and once completely off Advil his tics returned.

 

He is now on the second round if Acyclovir and though it seemed to help initially we are now back to some really bad days of ticcing and OCD. Not sure what happened but we did start a homeopathic that maybe is increasing the herxing.

 

I am hoping things are going better for you since your last post and please keep us posted!

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  • 2 weeks later...

So the tests came back. Son has 1:1600 titer of Coxsackie virus. He is midway through the 10 day treatment (as is DH - high titers as well) and we will now begin to wean son off of Risperdal to see if the tics are still there. Hoping and praying that they are gone.....if not - we are back to square one.....

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Hi Nitshel,

 

My son just finished his 20 days on Acyclovir for Coxsackie.

 

After the second round he was 80% better. Still had tics but definitely less.

 

Our doctor recommended another 10 days to see if we get more improvement.

 

We are also pursuing other treatments and supplements to help his detox and build his immune system.

 

Please keep us posted on your progress.

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