Nightmare PANDAS/tics newbie - need help/advice

[T_Mom]

...How does one determine if/when what your kid has is caused by an underlying infection (in which case Abx will help) - or is simply a bad genetic card in the deck (TS) - in which case Abx will simply not work? Is this determination made after trying a number of drugs over an extended period, ruling out all other possibilities? Or is there an easier, more conclusive way of doing this?

 

Thanks once again for all your suggestions! God Bless!

Hi Nitshel, my heart really goes out to you as we all understand the frustration of trying and only finding that yet another unwanted outcome occurs...(like the vocal tics.) The truth is, at this point there are few sign posts showing how to determine if there is an underlying infection--my d with our first episode showed up on the MRI with a sinusitis, voila, treated with antibiotics and steroids and gone.

 

In reading your posts the question comes to mind -- was there an obvious trigger to the first episode for your son in November? Did he get strep? Was he around kids with strep? Do you think this is a PANS reaction via lyme?

With PANS many of us see our kids flare when they are around others who are ill, even without strep.

 

Have you read the Murphy article on psych drugs and PANDAS kids? -- might be worth seeing if you have not.

I am so sorry you all are going through this and hope it comes to an end soon. Have you considered the Cunningham bloodwork>

[nitshel]

Hi T.mom - thanks for your kind words....this is taking a toll on the entire family - we're barely hanging on.......such a nightmare....

 

We are considering MOLECULARA and Cunningham panel for ruling out/in PANDAS. We just did bloodwork to check for Lyme co-infections - results back in a few days....

 

Yes son did have regular ear infections - there were a couple just before the Nov manifestation. He has not had an ear infection since we out him on gluten-free diet and a range of vitamins and supplements....

 

I'm just waiting for a positive result from these tests- any positive result - so I can at least understand what is going on inside my son!!! And give this vile thing a name......

 

We will stop abx tomorrow and see if tics drop down over following days - that would indicate it is herx - and that would be at least some clarity (i.e. not TS)

[DsMom]

The last 2 times my DS was on steroids for PANDAS symptoms his ticing went through the roof, as did all of his mental issues. I tripped over the NIMH's PANDAS detail (it's been changed since and now reflects PANS as well) and the 'concern' over treating PANDAS kids with tics with steroids due to the potential for tics not only to worsen but to increase to higher levels than they were at before the steroid 'therapy'.

 

DS did 3 trials his first year of PANDAS,& the first didn't seem to do much of anything to him, but his ticing was far more subtle during that time frame. Both a neurologist who is PANDAS savvy and our PANDAS pediatrician are the ones who suggested the last 2 trials. The 2nd was bad, but I thought it was the Zoloft he was trialing (which also was disaster) but the 3rd time, as my boy escalated in all his symptoms to a 'worse than before' level I was freaking out. We scaled him back, fast, and his symptoms stayed higher than they had been for a while, but slowly came back to the 'before' steroid level.

 

I am SO sorry you are going through all this. Sadly, so many of us can totally relate.

[nitshel]

Posting an update.

 

Lyme Co-infection (from Lab Corp) all came back negative (except Babesia which is still pending)

 

Vocal tics are still so bad. We increased Risperdal a couple days ago to 1 mg - no effect. Doc has asked to increase Zoloft from 37.5 mg to 50 mg.

 

Really scared now....I hate increasing these drug doses - but hate seeing my son in this state even more....

 

The only suspicion we have now is Lyme (based on Igenex test). Moleculara test is pending as well. If these tests all come back negative I dont know what we're going to do - what else could be causing this - I so wish we could "pin" down the cause of this - as so many have done on this forum. Son has not been able to go out anywhere - poor thing is bored and helpless and drugged - and its breaking our hearts.

 

> How long does it take Abx to clear from his system - we stopped Abx in the hope that he would "return" to baseline but the tics have not gone down...anyone has advice?

 

Thanks and Happy Mothers Day to all...

[queenmother]

TMom,

Could you tell me more about the Murphy article or post a link? I tried to google with limited info and came up with a gazillion Murphys, especially Murphy's law. The irony was not lost on me. :-)

Nitshel, I am so sorry. I wish I knew something that would help. I, too, am terrifed of those psych-pharmaceuticals. Does your son take magnesium, GABA, and B vitmains? Magnesium citrate is a MUST in my house. I don't know how these affect Risperdol or zoloft or any of his other meds but this all sounds very dopamine to me. Those neurotransmitters (dopamine and serotonin) are so affected by bacteria and viral loads. When my daughter was hospitalized, they placed her on zoloft to increase her serotonin and refused to check for PANDAS. After escaping (I meant 'being released'), our local doc did the infection panels that show active and chronic mycoplasm along with lyme, bartonella, and HHV6. As we have killed the mycoplasm et al (a work in progress) and increased vitamin D (increases serotonin, and the weather is better (sunlight increases serotonin), and she is back to eating again, I now think that her serotonin is TOO HIGH. OY! It is like walking a very delicate tightrope in a hurricane blindfolded.

QueenMother

[rowingmom]

If you have had lyme specific bands show up on the Igenex western blot, I would suggest that you seek a LLMD for clinical diagnosis. Lyme and the co-infections can suppress the immune system to the extent that antibodies do not react on co-infections tests and results return as negative. I am not sure how LabCorp results compare with Igenex, our LLMD prefers using Igenex, although she uses LabCorp for CD57.

[nitshel]

Thanks you all. We are waiting for the Moleculara tests to come through. If those come back "unlikely" then we will pursue an LLMD - Dr. J in CT has been recommended to us.

 

@Queenmother - We did see an alternative medicine dr. (Dr. V in Md) but are not happy with him - he did not prescribe GABA, 5-HTP, sAM-E - some of the common supplements that seem to have helped other folks on this forum. All he did was prescribe a large number of Vitamins and Minerals - these really have not helped much, despite months of use. Does someone know of good alternative approach doctors on the East Coast? We really need a good "detective doctor" to crack this case - a lot of doctors have tried and failed (so far)...Queenmother - Also loved your analogy of walking in a hurricane blindfolded!!

 

Thoughts and ideas from everyone much appreciated...

[sf_mom]

Nitshel: Just so you understand...

 

We did the CAM Kinase II test and my children had the following results: 138 (11 days post steroid burst which can impact results), 148, 159 and all were within PANDAS diagnoses range and one was even diagnosed with PANDAS one year prior to discovering Lyme. It turns out all three of our children have gestational Lyme et al. Unfortunately, the Moleculara test is not definitive as to what is driving auto-immunity it could still be PANS or PANDAS. If chronic infections/viruses are there they are typically treated with inner cellular and outer cellular antibiotics so a combo of antibiotics along anti-virals, etc.

 

Its a huge learning curve when the fall out happens and I feel for you. Keep reading as you seem be grasping all the concepts which is sometimes half the battle. Your prior Lyme results do indicate there is something there and I hope you pursue an LLMD to help you properly support or not support the diagnoses. There are a couple of tests that could really help you make the determination:

 

1. Provoking for Lyme: which means loading up on combo'd antibiotics to stimulate antibody response.

 

2. Advance Culture: Need to be off antibiotics for one month to run test. Looks for spirochete in blood and if positive you will get a picture of it.

 

3. Dot Blot test - Igenex: Which is very accurate when positive, again the individual is loaded on combo'd antibiotics, urine is typically collected days 3,5,7 after starting antibiotic combo and test is looking for the antigens (not antibodies) for Lyme created by die off in the urine. This is how we found Lyme for one of my children who was serologically negative via Igenex for Lyme antibodies due to congenital nature of infection.

Edited May 12, 2013 by SF Mom

[nitshel]

Hi SF Mom - thanks so much for great insights and advice. I think you may be onto something - when we treated our son with ABX combo, Clondomycin and Rifampcin, we saw wild escalation in tics which we are trying to manage now with increased dosage of Risperdal even though we have discontinued ABX. We plan to do full court press against Lyme over the summer vacation.

 

How did you determine that it was geatational? Do I need to get myself tested also?

[PowPow]

my childs vocal and motor tics always worsened on prednisone, but after the month, they would go away for several months. This has happened three or four times.

[PowPow]

my childs vocal and motor tics always worsened on prednisone, but after the month, they would go away for several months. This has happened three or four times. Also, I took another child to an Integrative medicine/llmd in Fairfax , VA. It was very pricey, many,many supplements. My child, also PANS, did the best at under her care. However, that could be the natural progression of the disease, also. you could p.m. mean for her name if you would like it.

[Dedee]

I noticed you said that someone offered you topamax. I would highly suggest that you try it. I have a friend whose son had terrible tics and their neurologist gave them topamax and not only did it help with tics but also helped some of the mood issues as well. My son takes topamax for migraines as do I. At higher doses it can have some side effects with difficulty finding your words, etc.. but for me that went away after a week or so. Also, it may affect the way soda taste but again that goes away with some time. Most of the weird side effects that you hear about are at high doses. My son is on a low dose and does wonderful. JMHO.

 

Dedee

[sf_mom]

Our older son who suffered from predominately from TICS at on-set always worsened when introducing a new combo of antibiotics, steroid we got a "brief" reprieve from TICs "after" completing 5 day burst, hd IVIG we definitely had a worsening before better, etc. For us, those increases indicated a herx response/increase in toxin load. His last remaining symptom was the first symptom he ever had and even prior to sudden on-set of a chronic cough.

Do you have any symptoms? It would be helpful to test yourself but Lyme testing can be expensive. Perhaps start with Labcorp if covered by your insurance for Lyme and Bartonella to see if anything pops up. There are many a symptomatic mothers that tested themselves for clues to their children's issues. Since we've been at this a while we had everyone in family eventually evaluated and those combined results were extremely helpful in getting our kids well.

Clindamycin is a very powerful antibiotic for strep/lyme/babesia. Rifampin is good for bartonella/strep. Combined you can really pack a punch and would expect to see an increase in symptoms. However, I am not a big fan of trying to control TICs if they are tolerable as they have been very helpful in determining herx cycles and that your child is still impacted/sick. I have seen some strange TICS come out of my son but they do get better I promise. At one point, he looked like he was doing a magic act in front of his face. At another point, he was hopping every few minutes while looking sideways... All very strange TICs but stuff that is well behind us now, knock on wood.

Edited May 14, 2013 by SF Mom

[nitshel]

Thanks All.

 

@SFMom - At this point his tics are better but still not enough to go to school / social activities, despite the increased Risperdal + Zoloft.I may need to get myself checked - especially for Lyme - I'm guessing Igenix....

 

@Dedee - many thanks for your advice. What was keeping us away from Topamax was that we were told (and had read) that it caused people to become "slow" - decrease in intelligence and such - I guess thats at high doses, as you say....

 

@ PowPow - how can I e-mail you offline for the doctor's name?

 

Many thanks all - you have been so helpful and supportive.....we need all the hope we can muster - we seem to be fighting a ghost....no test has come back positive thus far, so we are struggling to get to the bottom of this....

[nitshel]

Also wanted to ask if anyone has had experience with Dr. Stack (Vienna, VA) and his mouth appliance? I do see some posts on it over the past couple years. It seems to have helped some and not others - but we are desperate....