no treatment for now

[SSS]

Just throwing this out there:

Regular Amoxicillin has been notorious for not eradicating strep completely.

I cringe every time I read a PANS story that starts:

'My child had a strep infection, was prescribed amoxicillin, then PANS symptoms seemed to start'

I don't know, if it were me, and it sounds like your child has hardly been on any antibiotics, and you have a Dr. who is saying 'PANDAS',

I'd ask for some Azithromycin (I'm assuming your child has no or hardly any history with this antibiotic)

and see if I could clear up what's happening.

Be sure to give a good probiotic 2-3 hours away from antibiotics.

My .02 cents.

[Dedee]

Just my experience.....my daughter had mild PANS symptoms. I was basically in denial that this was what she had. I decided to ignore it and see what happened. When she exploded, all **** hit the fan and we are more than 3 years into this and can not get her under control. My personel belief is because I let her simmer for so long with low lying infection left untreated. Every case is different. I hope things are different for you.

 

Dedee

[qannie47]

Early neurological symptoms: you might be surprised at what is neurological. sleep walking/talking is, although I am sure you already know this. Think about moments that occurred for 1 to 2 days. Odd moments that can be passed off as "kids do weird things". Spinning, motoric movements, hyper-activity that came and went, repetitive motion, thoughts, or actions. My son was a hoarder, for example: paper, block, toys, the child just liked to collect. Again, never caught my radar, but it was in hindsight that I saw the misc. dots start to align.

 

Again, perhaps your child has "topped" off. Perhaps it is not this horrible disorder.

 

In support,

q

[riffleshell]

Here's my story, if it is helpful:

 

My son burst out in a bunch of PANDAS symptoms during a step infection. I got him a second round of treatment with stronger antibiotics right away. He was much better--but never quite 100%--for months and months after. For various reasons, I was reluctant to treat with antibiotics (his titers were falling) but treated instead with the nutritionals in my signature below.

 

In April, he got strep (scarlet fever) again. And I gave him the strong antibiotics again. And boom. All better: 100% back to normal. (At least for now--crossing fingers!)

 

The nutitional stuff helped, I believe that. But the third round of antibiotics cured him. I know why I was reluctant but I wish I had done it so much sooner.

 

Good luck to you!

[librarianmom]

So I have an update of my "wait and see" to run by those of you with experience. I'm still trying to figure out if my son's symptoms fit a PANS pattern or a classic TS pattern... He is pretty much exactly the same as he was 9 months ago. He has tics. Motor and vocal. They are mild as far as disruption/interference with his life, but constant. He has had a few illnesses (including the confirmed strep in the spring) with only mild increases in the tics at the time of illness or none. Some days he has more tics than others, but none worth medicating. No return of fears, OCD-type behaviors, or sleep problems with our without illness triggers. Some triggers we have found are: sugar, caffeine, too much TV or video games, chlorine, and excitement. I now give him krill oil, a good multi vitamin, and a probiotic every day. He uses Xclear nasal spray (with xylitol) to help with nasal allergies as well as a steroid nasal spray. He sees an OT to address his sensory issues (which came with the onset of the tics). The OT sessions seem to help with sensory issues, as well as balance and concentration (which we didn't know he had issues with until the eval).

 

The neurologist felt he fit the PANS profile because we have no family history and the onset was sudden at a later age (9). We've had only the one "exacerbation" with the onset of tics, ocd stuff, sensory issues, and sleep problems happening all at once. Since then, he's just left with mild tics.

 

Has anyone who has a child with PANDAS/PANS experienced this type of course? With such long spacing? It's possible he could have another exacerbation with an illness, of course. I was just expecting it sooner. And since he has had some illnesses without worsening....

[WorriedDADNMOM]

Librarian, Just seeing this from this past spring and summer. Might I ask where your are located??? What part of the country or state??

 

Also, correct blood tests and a competent doc can check for the right infections, vitamin and mineral deficiencies.

 

 

From what I can tell, your on a decent path....figuring out food triggers.....etc,.....fish oil, nasal spray.

 

My thoughts are that until you get to a Pandas doc and get comprehensive overview, your just using a garden hose on a house fire......if you will. Not criticizing.....just pointing out that our kiddos need a ton of help......I would say the worse the tics and sensory stuff is, the more comprehensive the approach needs to be. I have three kiddos....dd's.

 

1) oldest.....no issues from 0-8 years old.......summer 2011 strange strep and EBV reaction with severe anxiety, sep anxiety....would not could not go to school.

2) Middle....no issues till 2yr MMR adverse reaction(did not realize it) ...2-6yo---very Oppositional, food averse, anxiety, some unknown OCD, very aspergerish like. 6.5 years old...very bad post strep tic..asymptomatic for strep.....amox did not help, but PenVK did.....kept her on Pen till end of School year 2011. Late summer/fall very high mycoplasma titers coupled with ticcing and more severe tremors, and chorea like arm flapping......went mute two times.......truly scary what we were dealing with.

3) youngest---severe rages after 2 and 5yo MMR vax.......2012-13 started developing slight nose twitch tic similar to middle dd. Nipped it quick with previous kiddos protocols from DAN/Integrative Pedi.

 

I say all this to say.....don't wait. Get good intervention sooner rather than later. The more you allow Pandas/Pans to dig the hole your in....the harder i think it is to get out. Every kiddo is a little different and their immune systems are too.......but they are similar. We are all dealing with slightly different situations.......but they are way too similar. I have had such a "good" mix of varying issues at different ages and varying severity of initial issues and subsequent exacerbations, that I feel like we have a good handle on things.

 

Please pm me and we can discuss further if you would like.