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DS6 has been off biaxin for exactly one day. That’s two doses worth. His last dose was yesterday morning. This afternoon, he’s a little irritable. Dh took him skiing and he went down five runs, refused to do more and got a little upset. Just now, dh was taking the bottles and cans to the store to return. DS always helps dh. He decided he didn’t want to go, didn’t want dh to go, so he sat in front of the door to the garage to try and keep dh from going. I went in and asked him what he thought he was accomplishing by sitting in front of the door and he said he was sorry and got up. Then, I noticed eye blinks. He hasn’t had eye blinks since three days after we started biaxin 60 days ago. He hasn’t had any tics in more than a week now, maybe its been two weeks since the throat clearing stopped.

 

 

 

Is it possible its from no biaxin or am I imagining something here? Is he getting ready to go right back to the old PANDAS behaviors? He still has some separation anxiety and some ocd's that are not interferring. His worst presenting behaviors was severe separation anxiety, which has never fully gone away but its manageable now and irritibility, anger, rages, which disappeared w/in a few days of biaxin.

 

 

 

He has an appt w/ his pediatrician on Thurs afternoon. It was supposed to show her how well he’s doing and get her to prescribe the prophylactic azithromycin Dr T wants him to start taking twice a week.

 

What do you all think of this? He's not "sick" and has not been sick, that we are aware, since Feb 10 when his PANDAS flared up again and went unabated until diagnosis in Oct. His original episode was in Oct 09 and it cleared up on its own in Dec 09. He went a whole year w/out diagnosis and treatment.

 

Cindy

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Have you 'properly' ruled out the possibility of a chronic infection like Bartonella? See my post over on the Lyme forum from earlier today. I do not believe you are imagining anything....

 

http://www.latitudes.org/forums/index.php?showtopic=11305&pid=95578&start=&st=#entry95578

 

Your child would not appear to be physically ill with a traditional runny nose, fever, sore throat, etc and may only present neuropsychiatric symptoms of OCD, anxiety, rages, mood liability, sensory issues, etc. with this particular infection.

 

-Wendy

Edited by SF Mom
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you are not immagining things.....

another thought is he needs to stay on biaxin longer...

maybe he still has myco p or what ever biaxin may be helping...

 

i believe that my ds still has myco p...igg has never gone to normal and fluctuates

 

a couple of wise people have posted several items, where like lymes...may need treatment treatment for 6 months to 2 yrs for full recovery....and sometimes rotate abx like lymes..

 

maybe he has multiple things going on???

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We actually don't know exactly what is going on w/ him. He's never been tested by throat swab for strep or anything else when sick. He had bloodwork at the time he was diagnosed w/ PANDAS back in Oct 10. Everything was negative. Negative strep titers. Negative myco titers. Negative for lyme. The only thing he had out of whack is a very low ferritin level of 14, where the lowest range of normal at this lab was 22. He wasn't "sick" at the time of his tentative diagnosis, except for all the behaviors that had been going on since Mar 10 w/out remitting and were getting worse. His PANDAS diagnosis has come from the response to biaxin, which was quick. Within a couple of days, the anger, irritibility, rages were gone. It took about a week or so before the eye blinking went away. The ocd's have slowly remitted. He still has some but they aren't interferring. The last thing that has gone was the throat clearing tic.

 

He has not been "sick" since a double ear infection in Feb that set this whole thing off again.

 

I have mulled over in my mind if it is possible he has other infections like lyme or bartonella. I just don't know how or where he would have gotten them. Lyme disease is rare in SE MI. He's never been bitten by a tick that we are aware of.

 

All this was set off in Oct 09 by the FluMist vax, followed by an illness of nasal and chest congestion and cough, along w/ a high fever that was treated as the flu, therefore, nothing but motrin was given.

 

I was afraid this might happen. I'm going to give it a few more days and see if things level off. I do have one 10 day refill for biaxin left. It was supposed to be for an emergency. If things keep going downhill, I'll call Dr T's office and see where we go from here. I just hate calling and sounding like a crazy parent. How could he start going downhill so quickly when he was doing so well? I'm not getting help from anyone local. Only Dr T has listened and helped.

 

Thank you everyone for your ideas and suggestions. I am willing to listen to anything. I cannot stand the thought of my son going back to where he just came from.

 

Cindy

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the thing i want to reitterate...though i am not sure if i am right or even understand fully...

but i am getting my head around, and watching what is going on with my own ds...is...

intracellular...be it strep, myco p, what ever....i think there are many virus, bacteria we don'[t know about either...

and if it goes intracellular you have a longer haul...i believe...and that may be what i am experiencing here....

 

i don't negate lymes or anything anyone tells me...its all possible to me, this is a huge learning curve...

and imho...immunology will be the only doctors needed in 100yrs..other than surgeons, for accidents we have in our individual flying machines and sports injuries....

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How did you originally test for Lyme? Have you tested binding immune complexes to see you might have gotten a false negative for Lyme as a result of them? Bartonella is a separate test and most LLMDs would know how to properly test for this particular co-infection along with others.

 

REMEMBER you could have passed Lyme or Bartonella to your child while pregnant so you might not have ever seen a tick bite. This is our situation and two of our three children are serologically negative via Igenex testing and do not make antibodies for the bacteria. We found Lyme by testing for the DNA in urine. One of our children does make antibodies and is positive for Bartonella and babesia. I do not remember having a TIC bite myself but I grew up in MN and spent a lot of time up north camping.

 

Here is a map of the 'reported' cases of Lyme from CDC http://www.cdc.gov/ncidod/dvbid/lyme/ld_Incidence.htm

 

-Wendy

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We actually don't know exactly what is going on w/ him. He's never been tested by throat swab for strep or anything else when sick. He had bloodwork at the time he was diagnosed w/ PANDAS back in Oct 10. Everything was negative. Negative strep titers. Negative myco titers. Negative for lyme. The only thing he had out of whack is a very low ferritin level of 14, where the lowest range of normal at this lab was 22. He wasn't "sick" at the time of his tentative diagnosis, except for all the behaviors that had been going on since Mar 10 w/out remitting and were getting worse. His PANDAS diagnosis has come from the response to biaxin, which was quick. Within a couple of days, the anger, irritibility, rages were gone. It took about a week or so before the eye blinking went away. The ocd's have slowly remitted. He still has some but they aren't interferring. The last thing that has gone was the throat clearing tic.

 

He has not been "sick" since a double ear infection in Feb that set this whole thing off again.

 

I have mulled over in my mind if it is possible he has other infections like lyme or bartonella. I just don't know how or where he would have gotten them. Lyme disease is rare in SE MI. He's never been bitten by a tick that we are aware of.

 

All this was set off in Oct 09 by the FluMist vax, followed by an illness of nasal and chest congestion and cough, along w/ a high fever that was treated as the flu, therefore, nothing but motrin was given.

 

I was afraid this might happen. I'm going to give it a few more days and see if things level off. I do have one 10 day refill for biaxin left. It was supposed to be for an emergency. If things keep going downhill, I'll call Dr T's office and see where we go from here. I just hate calling and sounding like a crazy parent. How could he start going downhill so quickly when he was doing so well? I'm not getting help from anyone local. Only Dr T has listened and helped.

 

Thank you everyone for your ideas and suggestions. I am willing to listen to anything. I cannot stand the thought of my son going back to where he just came from.

 

Cindy

 

Did he have H1N1 vax? My dd started after an illness diagnosed as H1N1. I have also read about encephalitis post the H1N1 vax. My dd did have elevated strep titers, with no signs of strep- but she has just relapsed without strep. Alot of these children would be considered PITAND. Seems my dd gets alot of the nonspecific viral illnesses, and these always are what sets her off.

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Oh, gosh, so many things to think about. DS6 will be 7 next week. He is in first grade this year. I don't know how he managed to do so well in kindy. He was a top student and still is. 1st grade teacher sent me a message home after he'd been on biaxin two weeks to tell me how much his social skills had been improving and how much better he seemed to be (even though he's reading well above grade level and his math skills are above, as well). She did not know he'd started antibiotics or anything about his diagnosis of PANDAS.

 

He had the regular FluMist, no H1N1.

 

The original test for lyme was the Western Blot by a lab in Utah. I have no idea whether he'd be congenital for lyme. I've had no reason to believe anything was wrong w/ him until fall 09. I did not give birth to him. He was born in St Petersburg, Russia and adopted as a 6 month old infant. He began hitting milestones right away, always healthy, rarely sick, began to be ahead of his age group in gross and fine motor skills and cognitive skills at about 1 yr of age. We didn't realize it, but he is gifted. We found out last Dec when we had him evaluated by a child psychologist because of all these sudden behaviors he was exhibiting and we had no answers for. We were told he was gifted and had anxiety, common in gifted children. This also coincided w/ him getting better after his first episode. Most want to blame genetics (must have a crazy birthmom) or institutionalization. Never mind he was perfectly fine before the Flu Mist.

 

Tampicc- I will keep in touch. Our sons do seem to have a lot of similarities. I just can't go back. Our lives were so awful when he was in full blown PANDAS. He is currently on Lamictal because his raging got so out of hand at home in the spring. We thought he had some mood disorder or something. One dr told us he had Aspergers. Those symptoms disappeared on biaxin. He's been so "normal". I know he doesn't want to go back to where he was. It was awful for him, as well. He's such a sweet and wonderful little boy.

 

 

I know you all understand my fears of returning to where we've just been. We've got to figure out what is causing his PANDAS.

 

Thank you for listening. I know everyone here has their own similar story to tell and, unfortunately, live.

 

Cindy

Edited by nicklemama
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nicklemama,

 

I can share your fears - and paranoia - entirely. Dr. Murphy's office just took our son off of his Cefdinir. He took his last dose Tuesday morning. Yesterday afternoon I had to take him for a blood draw and was so surprised at how good he did!! Since he did so well, we promised to take him to see Santa. He did great there, no issues, and he asked to eat dinner at the mall - he'd been doing so well, why not. He at all his supper, so he was promised desert. He picked a cookie from the cookie shop and then it happened. I don't know what the issue was, but there was obviously something offensive about that cookie. At that moment, I knew taking him off the abx was a mistake. I had to carry a kicking, screaming, drooling, biting, hitting, little manic all the way through the mall and parking lot to the car. (My 4 year old daughter followed behind carrying my things like an excellent little soldier doing her duty in the heat of battle!)

 

It took him about an hour to settle, and only after going to see Christmas lights (one of his obsessions right now). At bedtime, the madness started again. Almost a 3 hour rage to get to bed, something we haven't seen in MONTHS!!

 

Like you, I have another 10 day course of Cefdinir I can get, I also have 2 rx for Azith from our pediatrician for emergencies. I'm just torn to see if we wait it out until our follow up appt next week, or just cave.

 

Unfortunately, there are no easy answers for any of us. We're all so paranoid of going back to where we started that we look at every little bump in the road as a landmine waiting to blow us to bits.

 

All I can say is hang in there - you're not alone, and do what your gut tells you. You know your kid better than anyone, and if that means having to sound like a crazy parent when calling the doctors, so be it. I wear my crazy momma badge with pride!! :wacko:

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Still lurking around w/ my PTSD radar on, lol! No major meltdowns. Got mad yesterday that he had to do homework before watching tv after school. The good news is, after making his anger known, he sat down in a chair quietly w/ his arms folded. A few minutes later, he got up and he read to me and then did the homework page from his reading.

 

He asked quite a few "what if" questions this morning before school. Hadn't heard these in a while. I haven't seen any more eye blinks since. Overall, he's hanging in there. We are still plotting his behavior/symtom chart. I'm taking it to show the ped this afternoon.

 

I am paranoid. I think its out of total fear that he will return to the worst in PANDAS behavior.

 

Need the Cunningham results. Arrived at her lab on Nov 10. I think our ped will be more convinced and I know the neurologist will be. She's anxiously awaiting it.

 

Have ped appt this afternoon to show her how DS is doing. She last saw him two days after biaxin started. I am going to flat out ask/tell her we need her on board and need her help. I am taking her my copy of Saving Sammy. As much as we love Dr T, he cannot be the primary go to. He's out of state for us. He's busy. He travels. He's in demand. He should be there for consulting and helping our pediatrician.

 

Wish me luck!

 

Cindy

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