Tics are back on abx, questions, etc...

[vermontmoms]

My twin boys (8yrs/60lbs) have been on 200mg of Zithro since May.  Once it was started symptoms dropped totally and it seemed like recovery started.  My boys have been free of tic,ocd, sleep issues, etc. Which has been wonderful!!!! 

 

However, since last Friday I have noticed the tics coming back along with the inflexibility, poor behavior etc.  Today my one twin had vocal & motor tics constantly from 4pm till he passed out at 9pm.  He had them earlier in the day but not as severe.  The other twin has not had any tics return but he does have nightime fears again & wanted to sleep in our bed tonight.  

 

Background...both boys tested high in the Cam K values and have tested positive for strep (rapids only), have had scarlettina, had H1N1 & H1N2 and recently had blood work for Dr. L and came back pos for MycoP.   She gave them both an official PANDAS dx this past May but we have been in and out of Neuros/Peds offices since they were 4.

 

Now for my questions.....

1. Do abx lose strength or effectiveness?  Should I increase dose to 2x a day to see if it helps?  

2.  Should we change abx?  

3.  Should we ask for a steriod trial?

4.  What do I do?

     I can't have this come back like it was last yr from Oct -Mar.  Please help!!!

 

Thanks for all your advice!

Jen

[Tamistwins]

Hi Jen,

I am so sorry that your boys symptoms are returning. I too have 8 yr old twins boy/girl. They were both taking azith 2x a day. I do believe that it can lose it's effectiveness. However, because they tested positive for mycoplasma while taking azith, you might want to switch to a different antibiotic for a while that is stronger such as biaxin. My son had recurrent positive strep infections, mycoplasma, mono and even though certain behaviors subsided on antibiotics,

his OCD and behavior especially odd was really bad. I

would not try steroids before ruling out Lyme and other tic borne illneses. Both my children have classic pandas symptoms yet with antibiotic treatment, steroid and ivig

they still weren't where I would like for them to be. Even with recurrent known strep infections,pandas range cam kinase, typical treatment wasn't doing the trick. Steroids

made them both very irritable and heightened anger and rages not to mention meltdowns galore. Via igenex my

daughter tested positive for Lyme and my son has not yet , but is clinically being treated for bartonella. I wish it was a clear cut case and we all had the answers but unfortunately cases where mycoplasma is involved are much more difficult than purely strep. I wish you you luck during this difficult and stressful journey and I hope you find the right combination of antibiotics to help your boys. If you ever want to talk feel free to pm me.

All the best,

Tami

Edited July 30, 2011 by Tamistwins

[MaxParkersMom]

My son is on a stronger dose, and he is tic free right now but if he runs into a virus or a strong strain of strep the symptoms come back for a few days and he might start ticing for a few weeks. The Azith has reduced this happening so much, but it doesn't get rid of it completely in my son. I am preparing myself for this when school starts. What the Azith does is hopefully keep them from getting strep themselves and from completely falling down the hill and bouncing back faster. Maybe I'm wrong but because they are so sensitive it is not a cure. Now for some it may be and it's going to be hard for me because my son has been tic free for at least two months. I still expect him to hit someone and have some symptoms and some tics, but bounce back. If you can handle it maybe give some Motrin twice a day and see if it remits. The tics always linger for awhile with us. Also see if someone in your house has strep or an animal. They usually start up again when strep is around. When that happens to us I check for strep and Lysol, etc. I am trying not to up Azith because I was told they are supposed to be on antibiotics until 25 so that's a long time. So sorry and hope it gets better.

[MaxParkersMom]

Oh yeah another shot in the dark. We are not swimming in chlorine. I have heard this can really bring it all back. We do the Bacquacil which is hydrogen peroxide. I have noticed since swimming in it he is a lot better. I think during the year I am going to continue with either hydrogen peroxide baths or epsom salts. I never would have believed it but it does seem to help him. I also during the school year scrub my boys down with bacterial wipes. They need to be exposed to some bacteria but I think my son was getting Empentigo or something. Have you checked their skin for bumps, rashes? This can set them off and I do believe my son had this. He might have had Mycop too but we only have so much money so I just sort of did what I could and have decided to manage the best we can. Don't lose hope. Have you started any new vitamins with fish oil? This sets my son off too. Not trying to ramble just trying to think of things that might have changed with you or set your children off again. If you need to talk write me. The journey is hard alone.

[vermontmoms]

Thanks for all the comments!  As far as changes, there have been plenty!!!  We moved across the country in June.  My father-in-law moved in with us, we found out he has stage 4 pancreatic cancer, and are now dealing with his care too.  Traveled via plane in June and in July, go swimming 3-4x a week, etc.   That all said, the boys did fine for two months with all these changes and remained tic free.  Now all of the sudden they are back...when things are starting to get back to normal.

 

Now about myco, lyme, etc... My boys tested positive for myco before Dr.L put them on abx.  She sent us for blood work and gave us the script at the same time. They came back neg for everything else (lyme, bart, etc).

 

I am just so beside myself...we had 2.5 tic, behavior free, ocd free months and now we are in it again.  I am going to try the epsom baths, and may try kids calm vitamin too.  We have not tried any new vitamins or any dietary things ( we are on feingold diet) so I am pretty strict about food.   I am at a loss where they picked it up!  For me I can handle the behavior issues, the ocd but the motor and vocal tics are just so hard for all.  They make me feel helpless and for him by the end of the day he is a mass of muscles, so tense and so sore.  

 

Quick question....has any ever tried accupuncture?

 

Well, I hear the boys up....

Thanks again!!!

Jen

Ps. Do u think I should double the zithro to see if that helps till I get Dr. L on the phone next week?

[KaraM]

 

Quick question....has any ever tried accupuncture?

 

Ps. Do u think I should double the zithro to see if that helps till I get Dr. L on the phone next week?

 

 

A few things:

 

we did try accupuncture before discovering PANDAS. We did it along with ERP therpay. Any benefit from the accupuncture was very short lived. She would get a little calmer for a day or two, but just a little. The benefit was not strong or long enough for us to justify the expense. Even the accupuncturist felt like it wasn't really helping much.

 

As for the abx, Dr. B told us that dosing can make a difference, so increasing it may be helpful. Our dd is 68 lbs. When we were just dealing with PANDAS she took 1 1/2 tsp of Zithromax/day (350mg) to start. Eventually dropped to 200. She did really well for a while, too, then symptoms returned. Her initial standard Lyme tests were negative as well. However, after her symptoms returned and could not be elimiated by resolving strep around her, trying steroids, chainging antibitiotics, etc., Dr. B tested her for Lyme and co-infections through IgeneX. Her Lyme was inconclusive, but she did test positive for Bartonella and Ehrlichiosis. Bartonella is a big culprit when it comes to OCD/tics, rages, etc. I've watched with stunned amazement as more and more people from this PANDAS board end up on the Lyme board with positive Bartonella tests. I think there was one day when three people showed up with positive tests. So would strongly encourage you to explore the Lyme and co-infection possibllities through more specialized and sensitive testing than the stanard ELISA test (if you have not already). Once we started treating for Bartonella (which was adding Bactrim to the Zith), she started to improve again. We are at about 80% right now after four months of Bart treatment.

 

I'm sorry you are going through this. It's excruciating to get the improvement and then lose it.

 

Kara

[MaxParkersMom]

Hi,

My son is 92 pounds and takes 375 Azith a day. If you feel you need to up the dose or do another antibiotic with it then go for it. I am so sorry you are having problems again. It is very hard. I had to skip two days with my because his stomach was yuck. When that happens every now and then I do back off. His emotional yuck, ocd started raging back after the second day. I gave him Motrin which helped, but I know in my heart the Azith really does help the brain in different ways. Let us know what happens. Epsom salts are awesome. You can also try the hydrogen peroxide baths. This is awesome too. I worry because my son has swam in a hydrogen peroxide solution all summer in our pool. It cleans the skin and calms him. I worry when we have to close the pool. I got solar panels so I could keep it open longer. I guess they will be swimming in my bathtub. Going under the water really cleans out his sinuses, etc. Have you checked your family, pets for strep. Like I said shot in the dark, but when my son starts someone has staph or strep. Anyway let us know what happens and we are here. That's why I love this board.

Edited July 31, 2011 by MaxParkersMom