That start of school and a new flare

[cara615]

DS has been doing great on BRAVO. Most vocals are gone and if they are there they are so quiet no one would notice. he still has motor tics though but they have been very mild. After about 2 weeks of school the motors started ramping up. Dr. Bradstreet believes that exposure to all the germs in school is causing the flare. DS is on azithro 2x a week and we tested him and his brother for strep and both were neg.

 

So this is just an exposure flare or a virus (common cold) causing a flare.

 

i have been treating with motrin 2x a day and its helping but that is not a long term solution. Dr. Bradstreet called in Mobic. Has anyone tried it? Is it more effective than ibuprofen? Its an NSAID too so I am not sure how much better it will be.

 

i also ordered CBD oil and I hope this does the trick.

 

my question is: How long before his immune system will calm down or will he flare all year because of all the germs in school?

 

i am of the belief now that we need to treat the inflammation. The abx just keep him strep free but managing the inflammation will keep his symptoms (tics) down to a low level.

[rowingmom]

You have tested for bartonella and mold, correct? For DD, ticcing is highly associated with bartonella die-off and the presence of mold (externally) and yeast (internally).

[cara615]

We have only tested for Lyme. No Co infections. I think we may have to do this. Bradstreet wants the 23andMe test results first. He thinks methylation is part of the picture and we need to deal with it.

 

i have sent in the kit 2x already and both times they could not get enough DNA on DS. I am trying for a third time. Any tricks to get a good sample of DNA in the test tube? Its a saliva sample.

 

i do want to test for co's and i think that will be next on our agenda. However, he does not have any typical symptoms of bart. Not sure if you need them though....

[rowingmom]

DD didn't manifest physical symptoms of bartonella until 2.5 years after her PANS symptoms started, and that included the motor/vocal ticcing. Bradstreet is up on mold. He has to be.

 

We didn't do 23andMe, just tested for the regular MTHFR things through Lab Corp, and we didn't supplement great amounts of methylated B's either. Just low doses every other day or so (except for B12 which was every day), and make sure you are not getting the unmethylated synthetic versions in prepared foods, poor multivitamins etc.. These can cause problems as well.

 

You can get just as messed up over-methylating as under-methylating; check out LLM's posts on over- supplementation.

Edited September 3, 2014 by rowingmom

[cara615]

OK hmmm. Lots to think about here. Interesting that your child has Bart but NOT Lyme. We tested neg for Lyme through Labcorp (I know, I know its not IgenX) and we didn't have any + or IND bands but i would like to get the IgenX test at some point too.

 

i will mention both Bart and Mold to Bradstreet. i am aware of mold causing tics so I do my best to remove all sources of it especially in bathrooms etc. Our house is new construction but i know mold can be anywhere.

 

i know we are missing a piece to this puzzle and for now i am trying to manage inflammation to lower symptoms. But i need to get back on the lab test train and try to get some answers to methylation and possible co infections. i hear you.

[dasu]

Funny (or not) I had a similar post on this a week ago.

 

Our doctor recommended that we keep the kids from any sources of infection to let their immune systems calm and heal. Can you take your kids out of school and homeschool?

[cara615]

Homeschooling is not an option. I work from home and would not be able to do both at all. Without my income we would not be able to afford the thousands I spend on my son to help treat this awful disorder.

[rowingmom]

I would think that if you are dealing with chronic infection / yeast / mold, no amount of removing children from external sources will help. It may cut down on flares, but the underlying problem will still exist.

[cara615]

So should I expect this flare to pass as his immune system becomes more acclimated to the infections he is being exposed to? I think we are on the path to healing right now, even though he is flaring. Its just hard to see it when the only thing controlling his motor tics is Mobic (a prescription NSAID). Hoping CBD oil is more powerful than the Mobic.

 

I do realize that we need to rule out Co-infections. But all his titres for strep, mycoP, EBV, etc are normal.

 

i just don't know what the course of healing is supposed to look like.

 

The good news is that his vocals (which used be horrific) are practically gone. Now its just motors. However, the motors are not that mild when he is flaring so we are not perfect.

 

But again, when we first started we were ADHD, OCD, TS and anxiety. Now we are just motor tics so I guess we came a long way right?

 

UGH this is so hard.....

[SSS]

If you think there are no underlying current infections, have you considered a short steroid burst?

[cara615]

I haven't but i guess its an option. i will talk to Bradstreet about it at my next consult.

[rowingmom]

Please test for bartonella, the babesias and other common coinfections first.

[cara615]

I PROMISE to test for co's before i give any steriod! I realize there is a long checklist of things to do/rule out that is in front of me right now.

[MaryAW]

I'm just wondering why Azith only 2X a week? Have you tried going to every day? My DD uses Azith, and we were able to go every other day for months, then she got sick in August and we are back to every day. Her tics are gone now. I will give it a bit more time and then try going back to every other day. ABX are not just used to treat bacterial infections in our PANS children. They have an immune modulating/anti-inflammatory effect. I would think that 2X a week would not be adequate to accomplish this.

 

I do homeschool my DD and she rarely gets sick. There are a lot of online programs. Some states even have their curriculum online for free. Just putting that out there.

[cara615]

Mary - you would need to know my history. We were on daily abx from Nov 2013 to May 2014. We tried a couple different ones. They helped but did not get rid of the tics 100% and instead destroyed my son's gut. He had yeast, bad bacteria and clostridia as well. This is with daily probiotics of 100bill and grapefruitseed extract for yeast. The daily abx were horrible for him. So under the advice of our PANDAS Dr. who is very knowledgeable in my opinion we moved to a prophylactic dose (2x a week). We started BRAVO probiotic which cleared up my son's gut within one month and all of his vocal tics went away.

 

i would really choose to stay away from daily abx because

 

1) it does not get us tic free

2) it destroys good gut flora

3) i don't see it as a PANDAS solution

 

However since I don't have the ability to home school because I work and need my salary to pay for all of DS's medical bills, he does need to be protected from infections.

 

Homeschooling is not as easy as just pulling your kid out of school. Major changes need to happen at home (like me not going to work).

Edited September 6, 2014 by cara615