Jumped over from TS board because I think its PANDAS

[cara615]

Hi! I have posted here before but now I have some new information.

 

Brief background. Almost 6 year old son presented with vocals when he was 3.5. The tics came and went (not sure why and don't remember if antibiotics were involved). This past March the tics gradually increased until they were SEVERE. Motors, vocals, very intense and almost constant. They peaked in May.

 

We got a TS diagnosis with OCD/ADHD and Anxiety. i started treating him with diet changes, antifungals (for yeast overgrowth) and vitamin supplements via our holistic MD, Dr. Taz here in Atlanta. The outcome was pretty successful because by the time Kindergarten rolled around, his tics were barely noticable.

 

During this time he has NOT been on any antibiotics at all, just natural gut healing.

 

I got strep in September and slowly his tics started creeping back. They peaked this past week (not as severe as May but pretty loud and many different vocals and motors). They are also pretty contstant throughout the day. His OCD behaviors are not too bad.

 

Anyway, this past weekend he had a runny nose but otherwise was fine and has been in school this week. I took him to the pediatrician (our normal one) for a height measurement (completely unrelated to the tics) and on a whim decided to get a culture. It came back positive for STREP and the ped was astonished that he had no symptoms whatsoever. She asked how his tics were and I said terrible and she said, I bet he has PANDAS.

 

Meanwhile, we are waiting on results of a three day stool study that I did on my son through Dr. Taz. We should be able to tell what types of bacteria and yeast are living in his gut. I know I need to do blood work to confirm PANDAS right?

 

Do you think this could be PANDAS? I was under the impression that you need an ACUTE and sudden onset of symptoms and my son's symptoms have been gradually getting worse this past month just like they gradually got worse back in March of this year.

 

Anyway, he is on a 10 day amoxicillan regimen to see what happens to his tics. What should I expect from these antibiotics?

 

thanks for reading and taking the time to answer. We are in great hands with Dr. Taz as she is well versed in PANDAS and we will do whatever is necessary to help our son. Just praying its not too bad

[qannie47]

Sounds suspiciously like Pandas to me.....With Pandas I follow Dr. K's etiology. He says that there can be minor flairs with Pandas before a big diagnostic one. It does seem that this recent one is definitely more noticeable and could fit the criteria for abrupt. The fact that he has Strep and the worsening supports Pandas. There really is not any blood work for Pandas except the Cunningham's Panel. I have not done that because my child, like yours, followed the typical etiology for Pandas with Strep association. For us, it was the fact that he responded to the abx so well with the remission of symptoms. MAKE SURE THAT YOU RETEST FOR THE STREP TO MAKE SURE THE INFECTION IS CLEARED. IT TOOK MY SON 3 ROUNDS OF ABX BEFORE HE GOT A NEGATIVE RAPID STREP. IF your doctor feels it is truly Pandas, I would go for an IVIG. Sounds dramatic, but latest studies are indicating that IVIG adiministerd within 6 months of QUALIFIYING episode have the best prognosis for full recovery. Without knowing all your history, it sounds like this episode is your qualifier....age onset is right as well.

[cara615]

Thank you for this. I will keep you posted on how he does on the abx. I will also keep IVIG as a strong option, if in fact he does have PANDAS. Is three years a long time to do undiagnosed?

[pr40]

the reason PANDAS kids go on abx is prophylactic to prevent further infections and damage to basal ganglia.

so, 10 day course will not be enough for that purpose. also, you may but also you may not see results in those 10 days. usually, kids get worse before they get better.

you suggest that there is a PANDAS blood test. there is Cunningham test but it is not a proof of PANDAS.

since you are already doing various tests, do immune panel. see what blood count is, vitamins and minerals. if there is a deficiency as there sometimes is (d vitamin, iron, zinc, b vitamins too), that would be helpful to know.

otherwise, you may want to be seen by a PANDAS specialist.

[cara615]

We have had tons of blood work that tested levels of vit, minerals, neurotransmitters, amino acids, candida, etc. he wasn't methylating. We gave him methyl b complex and we killed the candida. He is also low in vit A, C, E and we ate supplanting. Our MD is a Pandas specialist. She is listed as the doctor to go to in Atlanta on the pandas network webpage. I feel we are in good hands. I understand what the abx are for and also about herxing. The thing is, my son had a severe flare up in May and through diet and sups and addressing his methylation and candida, I almost had him tic free until he got re infected with strep. I'm hoping I helped heal his immune system a little over the past 6 months.

 

I will opt for ivig over prophylactic abx because taking an abx for many years will destroy someone's immune system anyway. It just doesn't seem like the way to go IMO. I'm sure others may disagree. I'm still learning but I have hope that we can get past this.

[cara615]

Ok I just read the ivig post on here and it's very interesting as to why it doesn't work in some kids. I will take all this under consideration while working with Dr. Taz. Does anyone think I need to travel to see one of the 4 doctors that everyone refers to on this forum?

[LNN]

My two cents - you like Dr Taz, have had good results with her, she's open to Pandas and willing to help treat. Since you dont' want to do long term abx (and I understand why - we're fighting fungal/gut repair after 4+ yrs abx for lyme/Pandas), I think your current doctor is going to be as helpful as any of the others. The others on the east coast all use long term abx as a major component of their protocols and aren't (IMO) as up to speed on methylation, diet, gut etc as your doc seems to be. The one possible reason to see someone in addition would be if you decide to pursue IVIG and your current Dr can't help in that area. But I don't think the well-known specialists have any sort of monopoly on the "best" way to treat Pandas. Many see them more because they can't find local support. But you seem to have that.

 

As for the sudden onset - in the NIMH site http://intramural.nimh.nih.gov/pdn/web.htm you'll see the criteria for the first episode is an acute onset, but look at the graphic of the saw tooth pattern of relapsing-remitting symptoms. You'll see that over time, you aren't expected to return to a baseline of zero symptoms. So you don't necessarily go from 0-60 in 2 days. You can go from 30-60 quickly. Also, if you have not only a sudden onset strep infection but also a second chronic infection (eg lyme, mycoplasma, mold exposure), and that second infection has a life cycle, you could see a different pattern of reactions. For example, lyme has a life cycle of 3.5-4 weeks. So you could see a worsening once a month and not understand why. Or you could see a worsening when it rained or got humid and mold spores grew more rapidly. So while the sudden/acute onset is meant to help doctors distinguish between Pans and garden variety (Ha!) OCD or TS, I don't think I'd dismiss a pattern that took a few weeks to peak. There are infections/triggers that could explain that pattern.

 

Also, even if it's just strep as the trigger, it seems your son might be a carrier, since he doesn't show symptoms. So its possible his immune system is responding but then gets overwhelmed, resulting in a crescendo pattern rather than an acute pattern. Like I said, with what you've explained, I wouldn't discount Pandas on this one thing alone.

 

The "proof" will be in how he responds to his current treatment for confirmed strep. Tics may not disappear quickly, but they should diminish as the infection clears. (as someone else suggested - re-test a few weeks after abx to make sure it did clear).

 

Kudos to you for doing so much to heal him already! Hopefully the abx will help him recover!

[cara615]

I'll keep you posted. This morning was his second dose of abx and hardly and tics this morning. He complained of a headache though..... maybe that is herxing??

[cara615]

I'll keep you posted. This morning was his second dose of abx and hardly and tics this morning. He complained of a headache though..... maybe that is herxing??

[Mommy2MCL]

My daughters symptoms were remarkably better on day 8 of amoxacyllin. She also responded to Zithromax. Right now we are on Augmentin and probitoics indefinitely while we wait for blood work. I have a feeling my daughter reacts to more than just strep. And we will be heading to an ENT to get her sinuses scoped...

 

My thoughts is that if your DR. is a PANDAS Dr. Then you are in good hands. The doc we see in Houston consults with one of the big ones so that is nice.... If you have any concerns this board can help and let you know if you should seek treatment elsewhere. Everyone is incredibly knowledgeable...

[cara615]

Thanks for all your posts. I do appreciate it. It seems from what I am reading that addressing the diet/methylation/yeast issues are very important regarding the outcomes. I am hoping that the healing we have witnessed over the past 6 months (without the use of abx) has helped to strengthen his immune system. i have increased his probiotic intake now to 50bill a day while he is on the abx. I don't believe that 10 days of amoxicillan will wipe it out so I am prepared for more rounds. But I will certainly get him rechecked at the end of 10 days.

 

I would assume his headache is a herx reaction. Praying that the tics don't get worse.

 

When we killed off the yeast over the summer he had die off with increased tics for 4 days and then flu like symptoms for one day. The next day his tics reduced dramatically. I have kept him on a maintenance level of GSE (grapefruitseed extract) since then to keep the yeast at bay. He is also on a low sugar anti yeast diet, GFCF and corn free was well. He gets a Methyl B complex, glutmaine and we also give him NAC (1200mgs) for help with detoxing.

 

All I can do at the moment is pray.

[cara615]

One other thing. It never really "felt" like Tourette's to me. The gradual but dramatic increase in severity of his tics did not follow a normal waxing and waning pattern. Plus, our neuro said he had never seen such a severe case of Tourette's in his career. That put up a red flag to me back in may but I never pushed a pandas dx. I guess because he was newly diagnosed with Tourette's, it was too much for me to comprehend at the time. Now that I have 6 more months under my belt, I can see how it all makes sense now.

[cara615]

He got home from school and tics are pretty severe. Non stop Ah Ah Ah over and over. its tiring his vocal chords and he just wants to lay down and have me rub his back and calm him. Is this herxing? And if so how long will this last? Need to know if I should keep him home from school tomorrow.

 

Thanks

[pr40]

you seem to have it all down but I do have some questions. probiotic can cause tics. you just upped the dose if I get that.

1200mgs of NAC might be a lot. over time, what was well tolerated may no longer be. also if he has any sulfur processing mutations, NAC may not be the best thing.

I don't think anyone can tell you how long it will last.

i understand that you are reluctant to give long term abx but consider that you may not have a good alternative. straightening immune system is a good idea but you also want to protect basal ganglia from further damage by the T cells. I am not sure what supplement or what regime other than abx would help you in that.

 

just found this post from another tread "Nitshel, I have an 8 years PANDAS son, and to cut a long story short, since I am against antibiotics (we put him on 3 weeks with improvements but I did not want to continue sistematically) I tried O.L.E., olive leaf extract, 500mg 3 x day as I read on this forum from a member called Stephanie. My son has still vocal tics but his spitting and worse all his aggression and personality change has gone. You can try to find info on the web and on this forum. OLE saved our life and I am for ever grateful to have come across this information while we were experiencing ######! Wishing you and your family all the very best."

.

Edited November 14, 2013 by pr40

[cara615]

Very interesting. Thanks for the heads up on the probiotic. I will go back to our original dose tomorrow and see what happens. I was not planning on giving him the NAC while he was on the abx because its just too many supplements for him right now. my main desire is to get rid of the strep and see what shows up in his stool. We should get those results in about 3 weeks.

 

This has been torturous for us as a family (as i am sure everyone here can understand). This forum has been amazing and has connected me to some wonderful people. But most of all it has helped me seek out holistic healing which I think is half the picture with PANDAS.

 

i don't even know if my son has PANDAS right now. I guess I need to wait and see what its like when the strep is cleared. right?

 

As for long term abx, if it will help him recover I will do what I have to. I just don't want to destroy his immune system - but I get what you are saying. What are the alternatives.

 

I have heard of OLE when killing off candida. Very interesting. It must have anti-fungal properties. I will do some research on it.

 

Thanks for all your suggestions. I hope he is OK for school tomorrow. Its Friday so I may keep him home if he can't stop his vocals. They are very very loud and i would say over 60 a minute in bouts that last about 5 minutes long.