Does my son have PANDAS possibly?

[cara615]

We have been on the TS boards and doing holistic therapy with our son who is 5 and has had a severe onset of tics in May. Before that his tics were pretty mild and would go away for weeks or months at a time. Then in March his vocals came back and in May they got SEVERE. Many vocals and many motors all at once and constantly throughout the day. No relief.

 

We got a TS diagnosis from the neuro and he wanted to start him on clonidine. We decided to wait and try the holistic approach. We see Dr. Bhatia in Atlanta. She did tons of testing.

 

he is allergic to gluten and corn

He has poor methylation

mito dysfunction

poor detoxification

 

on paper this looks like the picture of Autism (according to what DAN! doctors see) but my son is not on the ASD spectrum at all. Just TS and OCD.

 

Could this be a case of PANDAS? If so does anyone know where i can find a doctor in the Atlanta area to treat him?

 

 

Also, what outcome is better - kids with TS or PANDAS? i have heard that the tics can go away comepletely with the right treatment for PANDAS - is this true?

 

thanks

Cara

[norcalmom]

Well, I think anything is possible and you should explore any options that may help your son.

 

Those tests may be born out of the autism world, but does not mean that other kids (and adults) with illnesses, don't have problems with them. They effect many systems. And can cause different symptoms in different kids.My child had/has methylation problems too. They can effect how your immune system deals with infection. I think that many of the items on your list are related - and you may work on one are and find that another area spontaneously improves.

 

You could try both testing through Moleculera Labs to see if he is making antibodies against his neuronal tissues, which is how many of us define the PANS/pandas phenomenon. My son was a ticcer - and this was the test that convinced me that I would not be going down the TS path.

 

Good luck and let us know how he does on whatever treatments you try.

[pr40]

also, do lyme test (western blot) with Igenex.

in our case, lyme seems to be underlying pandas symptoms.

steroid taper, abx, and/or IVIG might be helpful in addition to what you are already doing for methylation.

so, get to be seen by a PANDAS dr. I am not sure who is closest to Atlanta.

[tpotter]

also, do lyme test (western blot) with Igenex.

in our case, lyme seems to be underlying pandas symptoms.

steroid taper, abx, and/or IVIG might be helpful in addition to what you are already doing for methylation.

so, get to be seen by a PANDAS dr. I am not sure who is closest to Atlanta.

Just keep in mind, though, that even good tests like Igenex are prone to false negatives. If you suspect in any way shape or form that this could be Lyme, Bartonella, Babesia, etc, then I would suggest seeing an LLMD (Lyme Literate MD), because they can make clinical dx, even in the absence of a positive blood test. Let us know if you need the name of one in your area, and I'm sure people will share names.

 

Personally, I wouldn't accept any sudden onset of anything without confirming an underlying cause, such as infection, environmental trigger, metabolic trigger, etc.

Edited June 19, 2013 by tpotter

[rowingmom]

Our daughter was first diagnosed with a motor tic disorder. The pediatric psychologist said that if vocals showed up and lasted for 1 year that DD would have a dx of Tourettes and we could then seek help at the Tourette's Clinic in Toronto. She was also rx ritalin and clonidine, which I declined. She has had motor/vocal ticcing for 2 years now, so if I chose to pursue it, she would have a dx of Tourette's.

 

DD11's bartonella pain symptoms showed up approx 1 year later (motors and vocals were waxing and waning with bacterial/viral infections) and we started treatment with a LLMD who found positive bartonella (lyme coinfection) titers, and a MTHFR deletion. The LLMD feels that the bartonella infection is responsible for DD's Tourette's and other PANS symptoms.

 

DD11's motor ticcing is highly correlated with her toxin load and increases with herx reactions due to bacterial die-off from abx (or herbal) protocol changes. As her body is allowed to detox the ticcing decreases.

 

I chart daily using an Excel stacked column chart (symptoms (1-10) against date with drug changes/illness notations), which has been an invaluable visual representation of reactions to drugs/herbals/illnesses. Doctors love it too. One of the Moms here was kind enough to give me the template - I don't want to think about where we would be now without the help of this forum.

 

There have been times when, shortly after changing/increasing a protocol she has been unable to read and has trouble speaking because of vocals or head jerking/eye blinking.

 

After 2 years of combo abx treatment the LLMD decided to wean off abx, but continue with herbals (we are using Stephen Buhner's bartonella protocol). Within one week of weaning, her ticcing was non-existant - proof to me that when nothing is dieing off and no toxins are produced her Tourette's vanishes.

 

But now as we ramp up to treatment doses of herbs it comes back a little with each increase in the herbal procol. She seems to detox from this more easily and is back to a low/non-existant baseline within two days.

 

It has taken a long time, but it's so obvious to me now that DD's Tourettes results from die-off toxins and her inability to detoxify quickly. Her PANS symptoms seem to be associated more with inflammation.

Edited June 19, 2013 by rowingmom

[Missmom]

My son had sudden onset motor tics (one day was fine, then woke up the next day and could not stop head nodding). This started about a week after what I thought was a cold / allergy symptoms. Went to his pediatrician and had to beg and plead with him to run the strep blood tests after two throat swabs came back negative... Four days later he called and confirmed pandas. We tried several different types of antibiotics and found that augmentin seemed to work the best in getting rid of the tics. During the days we were trying to figure all this out my sons OCD also started getting much worse, and he started with some urinary frequency. I knew at that point it was pandas.

 

We are controlling all of his symptoms with antibiotics. I often wonder how many touretts patients out there actually have pandas and with the correct antibiotics they would not have to suffer so much.

 

Anyway, today my son is living pretty normal life. He is about 95-98% most days. He still tics when he is nervous or excited. His OCD is still there but manageable, he gets anxiety and still has some irrational fears but I try to help him through all of it. He goes to school and plays sports and has an A average.

 

If I were you I would at least explore the possibility of pandas. Get the lab work done and maybe a trial of antibiotics such as augmentin or Zithromax. Have you ever noticed if your sons tics subside at all when he has a fever? Or when he is taking antibiotics for anything.

When my son has a fever for some reason his tics always subside completely. When the fever is gone they returned. I don't know why but just have noticed this on several occasions with flu or viruses.

 

I hope you find the answers you are looking for. We are all here because we are desperate to find help for our children.

[coltonsmom]

Hi,

 

Last week my 4 year old son woke up from a nap with some unusaul body movements...after a trip to the ped, ER and an overnight stay at the hospital he was diagnosed with a tic dissorder. Although pediatrician and neuro say his tics are not your average tics and mentioned choreiform movements. Because of this we are being referred to a movement dissorder specialist????

 

For 2 days the tics were almost constant. They have subsided a good bit but seem to be worse at night or when he is watching tv. In the hospital we asked about PANDAS and pretty much got blown off. Here is what we have:

 

Normal EEG, MRI

Normal ASO titers

High DNASE B titers (1480)

Strep Culture Negative

 

He had Strep on January 30th. He is allergic to penicillin, so was treated with zythromax. He started clearing his throat a few months back, which we thought was just a habit. He also went through a phase of wanting to wash his hands every time he touched his nose, but that has ended. He is a little more clingy, but not excessive. He always wants to know where we are, but is fine to be on his own too. He also wants to know where his house is compared to where we are. If we go for a walk he will ask if our house is near or far. He is still very happy and smily. Our ped has never seen PANDAS and is open to talking about it, but wants a neuro to start treatment. He does not think my DS meets all requirements right now so takes the path of waiting a watching. We also had his MMR on 6/4, 6 days prior to this outbreak of tics. This was his first MMR, he had previously had the measles and ruebella separately.

 

I am not sure what my little guy has, one minute I think PANDAS and the next I am just confused. I don't want to treat for something it is not be it PANDAS or a Tic Disorder. I am grateful to have found this site, I hope someone has some insight! Thanks.

[pr40]

I am responding here to coltonsmom, indirectly to the original post as well

 

there is neither a positive proof nor cure for PANDAS/PANS.

best you can do is learn about it, start treating and see if treatment helps. If it does, that would be an indirect confirmation that PANDAS is a right diagnosis.

For instance, if symptoms lessen with ibuprofen, it is likely that inflammation is among the causes.

It is similar with steroids and IVIG.

Abx have a different role of helping organism fight bacteria like strep.

many here also need to learn about methylation and detox as that process seems to be a part of the problem as well, especially if there are other autoimmune issues.

Also, think about PANDAS this way: what other diagnosis could explain your kids symptoms?

(I am taking his tests into account.)

Edited June 21, 2013 by pr40

[3boysmom]

Coltonsmom- please begin a new thread for your topic because I don't want it to get missed! Your son's anti D-Nase titers of 1480 are VERY HIGH!!! Please seek a specialistbecause if you are new to this then you have not yet realized that your run of the mill doctors will more than likely NOT give PANDAS the time of day. You will more than likely have them throw SSRI drugs at your child and making more sick. The sooner correct treatment begins, the better the outcome. Post A new thread and mention where you live. Blessings, linda

[nicklemama]

Cara615- on paper, my son looked aspergers. No known strep infections. He had many aspergers like behaviors. I might have believed he had aspergers except for the fact that this all started literally overnight after a flumist vax. Treatment with abx for PANS, finding MTHFR mutations and treating and discovering my son has ehrlichia and anaplasma and treating that has resulted in my son no longer having any aspergers behaviors.

 

Colton's mom- please start a new thread. You might get missed otherwise. If I'd not listened to my ped and the resulting delay of a year in treatment for PANS, my son might not have gotten so bad. If you have a gut instinct, listen to it. I would urge you to follow up on the PANDAS. That's a very high titer.

[coltonsmom]

Thanks everyone...sorry Cara615...I did not mean to kind of jump in on your tread...I am new to all of this! I did start a new one! Thanks for all the help. We trying to find who we want to follow up with!

[EAMom]

The "Cunningham Test" (aka "the test for PANDAS") is now commericially available in most states.

 

Here is a link to the company's website: http://www.moleculera.com/

 

Here is a link to one of the first (and longest!) discussions on this test: http://www.latitudes...?showtopic=4834

 

The test is also discussed under FAQ's: http://www.latitudes...?showtopic=6266 , scroll down to "Tests: Antineuronal Antibodies Tests"

 

Post #1 in this thread ("Back from Oklahoma and Visiting Dr. Cunningham") also some good questions and answers http://www.latitudes...pic=9361&page=1

 

The test is very useful if you aren't sure if you are dealing with garden variety tics or PANDAS.

Edited June 23, 2013 by EAMom

[EAMom]

PS be careful of steroids if Lyme is a possibility. Also, avoid steroids if you might do the Cunningham Test as steroids will alter the results (antibiotics are okay).

Edited June 23, 2013 by EAMom