DS with severe motor tics

[rowingmom]

Your Ontario pediatric neurologist understands and confirmed PANDAS? Does she use any of the accepted treatments (long term abx, IVIG) or just clonidine to help with symptoms? I guarantee that she is constrained from using abx long term and our ped psych told us that IVIG could not be prescribed unless our child was completely incapacitated.

 

Our ped psych (Niagara Falls, ON) is now a PANS/PANDAS believer. I have kept her updated with DD's diagnoses, treatment and responses, and she has collaborated with Dr L in Bethesda MD on at least one project. She has gone so far as to petition the Ontario College to allow the accepted treatments. She was rejected and, practicing in Canada, she realizes there is nothing she can do to help the children she sees suffering from this syndrome. There is at least 1 family doctor in St Catharines familiar with PANDAS (from South Africa), but again is unable to treat. He sends his children to our ped psych, who is unable to treat. It's a mess.

 

From my perspective (and my perspective only) there appears to be more than one reason for the Tourette's-like symptoms associated with PANS/PANDAS. The accepted PANDAS theory suggests that antibodies crossing the BBB are responsible for an autoimmune attack on portions of the brain regulating motor response and behaviour, resulting in the inflammation, ticcing and other symptoms that are indicative of the syndrome.

 

From our experience with DD's responses (charted daily against treatment for 2.5 years) to both antibiotic and immune boosting treatments I have found ticcing to be associated with bacterial die-off, either caused by abx or the response of her own immune system.

 

I believe, in our case as the gram negative bacteria (bartonella) died, endotoxins were released which increased inflammation, both in the body (flu-like symptoms) and the brain (ticcing, emotional lability). Given several (3-4) days to recover from the buildup of endotoxins (with the help of supplements to help with the MTHFR deletion and detox protocols including epsom salt baths (magnesium), lemon juice and psyllium husk) DD's ticcing would subside.

 

Before we began treatment I think DD's ticcing was the result of her immune system causing bacterial die-off and the resulting brain inflammation from endotoxin release. During abx treatment we would consistently see increases in ticcing with increased abx concentrations or changes in protocol. We also saw increases with immune-stimulating supplements (high doses of astragalus).

 

Endotoxin release stimulates antibody production, but I don't think in our case the antibodies were the causative factor of ticcing. I think it was the endotoxins themselves. The resolution of ticcing within days of discontinuation (after the bacterial load had been decreased sufficiently by treatment) was too short a time frame to be the result of antibody fluctuation.

 

We saw the similar initial response to strep antibiotic treatment that you did. During the first 10-day round of penVK most of her symptoms (including ticcing) resolved to return approx. 2 days after discontinuation. During the second 10-day round her symptoms again resolved, but then returned before the end of the round.

 

With most of the abx protocols we have undergone I noticed an initial 1-4 day resolution of symptoms, then a flare which I associate with die-off, and a gradual resolution of ticcing as DD's body was allowed to detox. With the use of stronger abx (ie tindamax), time to flare was reduced to perhaps within a couple of hours and time needed to return to base-line was prolonged (and ultimately required pulsing off the treatment).

 

If you think your child has PANS/PANDAS and you want to treat with something other than clonipin, you will need to leave the country.

Edited November 7, 2013 by rowingmom

[chubbermommy]

We are back on amoxicillin. I took him to our family Dr's after hours clinic and a different doctor (ours wasn't in) gave us a prescription after reading his file and going through some PANDAS info. We did another throat swab too. We are going to push for long term abx so hoping for improvement again with this round.

 

Our neurologist did confirm PANDAS but she does not want to prescribe abx, instead she wants to see how the clonidine will work. However, she said if we want our family dr to give him abx, then he can take both.

 

rowingmom, from what I can understand from your signature, your daughter mainly had abx treatments? I don't know what the methyl B12, methylfolate and P-5-P are exactly - was the methyl B12 to help with the detoxing? Thanks for your input. Sometimes I'm tired of thinking and just want to do what the doctors say but I know I need to advocate for the right treatment for my son. *hugs*

[rowingmom]

I will be interested to hear whether or not you are successful with your request for long term abx. I understand that the College of Physicans doesn't allow this type of treatment. We were refused IVIG as well because DD was still fairly functional. Hopefully things have progressed in the last couple of years and you are able to find proper treatment.

 

I had no alternative but to seek help in the US. DD's PANS reactions were the result of a bartonella infection, so yes, we treated mostly with multiple combination abx with some herbal protocols/anti-inflammatories and supplements for her MTHFR deletion (methylated B's) to help the detox cycle run more efficiently.

 

I don't mean to be a party pooper, but advocating for proper treatment with doctors that don't understand is a waste of your time. For this reason most of us see lyme or PANDAS specialists.

 

Take a look at the archives for lots of information on MTHFR. LLM is our resident expert.

 

http://www.dearpharmacist.com/2013/08/08/2394/

 

And for some light reading (just kidding):

 

http://www.heartfixer.com/AMRI-Nutrigenomics.htm

 

Never give up the thinking thing. It is necessary even with the specialists.

 

I do sometimes long for the good old days when I thought our family doctor was capable of fixing all our ills.

[Mommy2MCL]

My daughter first presented with TICS. We saw the PANDAS specialist here and he put her on long term antibiotics. He wants to get her level to 0's. We haven't had blood work yet but our verbal history was enough that he saw the need to make sure we kept up using antibiotics. Our story starts in April and we have had two infections since. Each infection my daughter has presented with more severe symptoms. The tics were first just her eyes. When he examined her he said he saw 7-8 he would consider. We have also seen separation anxiety and emotional liability. The antibiotics are preventative to make sure the antibodies don't attack the area of her brain, the basal ganglia... If you can prevent the infection then you potentially prevent your childs symptoms increasing.

 

I also have read or heard somewhere that the phycosocial medicines do not help as much with these PANDAS kids... Have you started the clonodine? Has it helped... Maybe research that...

[chubbermommy]

We started the clonidine for a few days but since we were back on abx, I stopped them - wanted to see if the abx would help on its own.

 

Our doctor is willing to try him on abx for 3-6 months. Is that long term enough? We go back in a month to discuss how he is doing. I'm relieved after our appointment this afternoon; I was really ready to put up a fight. I'm also giving him some omega 3 now, and I'm going to try the lemon water and epsom salts for detox, as they seem the simplest to start with.

[Gweny]

Hello Chubbermommy,

Thank you for keeping us updated. My son is now taking Amoxicillin and symptoms have reduced considerably but the treatment ends this Saturday!

[chubbermommy]

Hello gweny. I find it really helpful to read through everyone's stories too. DS is still on abx and doing much much better . Still tics occasionally and more when he's tired/hungry, but this, I can deal with for now. I hope you manage to get him on more amoxicillin.

[qannie47]

I do compression joint therapy for my ds who has big motoric movements when flaring....it works very well.

[chubbermommy]

Thank you qannie. I will look into what joint compression therapy is.

 

We've had a setback. Our doctor suggested changing the dosing of the abx so instead of spread over three times a day, he has it twice a day (but basically the same amount over the course of the day). We tried that, but we also went away for a few days at Christmas so our routine was totally turned upside down, we were sleeping in a hotel, eating at weird times and different food and DS was very tired (but he had a great time). So his tics returned with greater severity and frequency. Large movements, windmilling arms, kicking legs. Also developed a vocal tic unlike his one before (which was throat clearing/snorting). This time, he's doing this squealing noise. Anyways, after a week, I switched him back to abx 3x/day.

 

So it's been 2 weeks+ since I made the switch back. His tics are still huge movements and he's still squealing. I'm tempted to give him the Clonidine he was prescribed at the very beginning (which we didn't take, in favour for the abx) along with the abx.

 

Does anyone have any suggestions? Has anyone tried abx with tic-reducing meds at the same time? Thanks!

[Missmom]

Have you taken him to get another throat swab? Checked for fever? Asked him if he feels bad? I would think this latest flair would have to be the result of a new illness or virus. You may need a temporary change of abx. My son got a sinus infection while taking augmentin last year and started showing some symptoms. We went and got him switched to a z-pack for the sinus infection then put him back on the long term augmentin once the z-pack was finished. This took care of the symptoms. My son is still on augmentin and it will be two years this march. I hate it but feel it is necessary to prevent any more major setbacks.

[Teri]

He may need a stronger abx than amoxicillin .?? Have you tried dosing him with Motrin?

My dd is 7 and we have been dealing with this for 2+ years now. She has been on abx the entire time - currently a combo of three different ones as she tested positive for Lyme & Bartonella too. In the beginning when this all started dd began with tics following what we thought was a viral illness and her 5 year vaccinations & flu shot. Ped. was open enough to test her for strep and suspected PANDAS but fairly conservative in putting her on abx. Dd is allergic to amoxicillin so she put her on a Azithromycin - dosing 5 days on / 5 days off for 30 days. As soon as we finished with abx symptoms would return. We also saw an ENT, Child Psychiatrist , and Ped. neurologist in the beginning. Once she had the diagnosis we saw a specialist. He has been managing her care ever since.

 

Stay strong!

[chubbermommy]

I believe he has picked up a virus or something. No fever or achiness, but a stuffy nose and this hacking cough (no throat pain or redness). So I think that is contributing to this flare. I will ask for another throat swab to be sure when we see the Dr. on Monday. I didn't think about that, as I assumed the strep would not be present due to him being on abx constantly.

 

About 2 months ago, I tried some Advil but there was absolutely no effect.

 

Teri, did you DD ever have anything like Clonodine to treat the tics?

 

Thanks for all the responses.

[Mommy2MCL]

I would also suggest you have them test for Mycoplasm Pneumonia... I believe you would want them to check IgG and IgM numbers.

[chubbermommy]

Thanks mommy2mcl.

 

So we did another throat swab and a blood test. Dr also prescribed an inhaler (Flovent) b/c of DS' wracking cough, which she suspects is viral but if he doesn't get better, we'll do a chest x-ray for walking pneunomia. It's so hard to say what it is since symptoms don't present themselves like they do in regular kids.

 

Before I give him the inhaler, I'm trying to read up on steroids and PANDAS. So far, I've seen many that have had improvements when put on steroids, but are there any bad effects?

[chubbermommy]

Just an update: The blood test from our family dr came back with ASOT at 267. I'm not exactly sure what it means, but the nurse said if it's under 280, it's good.

 

We also saw the pediatric neurologist last Thursday. We had him on the clonidine for 2 weeks but it made him super tired and didn't do much for the tics, so we are cutting back to half the dose. I brought up the possibility of other infectious agents and requested more bloodwork. We also did a chest xray. And MRI is scheduled. However, I feel like she was humouring me really. She suggested stronger meds for his tics if he got worse/stayed this bad. We are still in this flare - can I call it that if it's been like 3 weeks? I definitely do not want to do more meds, in fact, I want to take him off the clonidine. After we saw her, his tics were SO BAD, I had to literally drag him through the halls of the hospital, kicking, flailing, banging into walls.

 

Strangely enough, DS got a stuffy nose on Friday, and his tics were a lot better! How can that be?

 

So now I'm looking into some alternative methods. I'm going to schedule some body chemistry testing that this naturopathic pharmacy/clinic does. I've also started giving him a magnesium supplement and am trying to find a high EPA fish oil for him. I'm hesitant to try too much too fast, so as long as I can hold on to my sanity, we'll go slow.