What could be the issue?

[cara615]

We are on day 50 of abx. 10 days of Amox, 10 days of keflex and 30 days of azithro. I have an continued rx for azithro until May. After the pos strep culture and pos titres, my son started improving steadily with his tics getting less intense and less frequent. it was a slow progression but it was without question improvement, marked improvement. He got to the point where i would say he was almost tic free. Maybe I just couldn't see or hear his tics but whatever the case, my anxiety was way down and we were back to "normal".

 

Over the past week I am noticing the frequency of his tics picking up. Not the intensity. So they are still pretty quiet, little murmurs or tongue rolls that you really need to pay attention to in order to notice but they are getting more frequent. And they ARE DRIVING ME COMPLETELY INSANE!!!! I CAN"T LISTEN TO IT ANYMORE. I AM GOING TO LOSE MY MIND!!!!!!!!!!!!!!

 

ok, that felt a little better. i know I should be SO HAPPY that he has stopped SCREAMING on the top of his lungs 80 times a minute. i know this, I really do. But WHY are his tics picking up slightly? Why are we going in the wrong direction?

 

What could be the reasons? Do I stay on the azithro? do I need another abx? is it yeast? is he missing something in his diet?

 

We are GFCF, corn free, we do probiotics,glutamine, NAC, GSE (for yeast), methylated B's in a multi vit, cook with coconut oil, turmeric, etc. What else am I missing? Will I ever get him back to baseline?

 

sorry for my rant. its been a very hard day. with all the cold weather school is out today and tomorrow and I work from home and blah blah blah.

[pr40]

we saw the same thing, first gradual improvment then set backs. it's been like that for a year now with ds. exacerbations are getting shorter and less intense, which is how I define progress. so, perhaps you are on the right track and it only takes time, a year or two.

[qannie47]

What is hard to get used to is the fact that these flares will come and go.....come and go....my son had the same pattern as well. It is said that the "T" cells, once they have crossed the BBB can stay there for 6 years (that was the theory). Any time the immune system is turned on, these T cells will start to aggravate the basil ganglia again. Sorry, I know this is hard....and defeating to see them regress, as you start to see the pattern that they do indeed return back to baseline you will start to get used to it...well, not used to it, but that assurance will help a little.

[nicklemama]

Two steps forward, one step back. You are 50 days into abx. My son is three years into abx, plus ivig twice. Little flares have been part of the package. They come and go. Sometimes, they are precursers to getting sick. Only time will tell. I'm sorry to have to say that my son is only now on the longest stretch of doing well he's had in the three years. It takes time to find the right combo. Still, illness will set him back. That is our reality.

[cara615]

Thanks ladies for the words of support. You have no idea how much they helped! Sometimes I feel like I am navigating this ship without a compass. I don't even know if the doctors full understand what the reasons are for increased symptoms. Today his tics are the same as yesterday. Not increasing from what i can tell. Just stable at this "new" level. Hoping and praying it doesn't get any worse. I can deal if i know we will go back to baseline eventually.

 

Thanks again! xo

[airial95]

He could have been exposed to someone who is sick around him, that always causes a small flare in symptoms for my son particularly. But also don't rule out that he could have strep (or another infection) just because he is on abx. Both of my kids have repeatedly gotten strep (positive throat cultures) while on full strength abx, even more than one full strength abx. It is possible. If you have an understanding pediatrician and it continues - you may want to get him swabbed.

[cara615]

We are testing titres this week. Just need to get the orders for the blood test. While I am there, i will have hi throat swabbed. You never know. Especially if his tics continue to increase. Praying we are at some sort of plateau.

[cara615]

Tell me more about these little flairs while on abx. What are they like? how severe can they get? Will it be anything like it was while not on abx? how long does it usually last?

 

Today he is the same as he has been for the past 5 days. Same little vocal tics. No increase in intensity but the frequency is still pretty contstant. Has not increased though.

 

Just want to know what to expect. Praying it doesn't go back to severe....

[cara615]

i read on ther other post that these flares tend to last only 8 days. Hmmmm. I am wondering if my son got strep again - even while on azithro! He has an itchy rash on his back. That is his only symptoms other than his increase in tics. I am taking him for a blood draw for ASO and Anti dNase-B titres and I will do a swab while i am there. I am thinking we need to go back on keflex possibly to kill the strep (if it is strep and not just a typical flare).

 

Ugh this is all so hard to naviagate and do we even know why our kids are getting PANDAS? Are there any clues yet to the source of this crazy disorder that is killing my soul?

Edited January 9, 2014 by cara615

[cara615]

One more thing. today my son had an itchy rash on his back. Did not look like eczema. Did not look like scarlet fever either. Could it still be from strep?

Edited January 9, 2014 by cara615

[pr40]

"Tell me more about these little flairs while on abx. What are they like? how severe can they get? Will it be anything like it was while not on abx? how long does it usually last?"

 

our experience: definitively flaris while on abx. they can get sever but less intense than before abx and shorter in duartion. moreover, during the year and a half, intensity is going down as is duration with our ds. dd is a bit different in that she is more stable but has more "permanent" OCD behavior

[cara615]

Went up to school to have lunch with my boys (I have twins - one PANDAS, the other not) and PANDAS son seemed fine. I talked to his teacher and she said his tics have been minimal or non existent for the past 2 days. Whew. He has been kind of clingy, giving very tight hugs but other than that and some teeth grinding, I did not notice any tics at lunch. I guess we will see what the afternoon brings. maybe the flare is petering out?

 

i still have blood tests and culture scheduled for Friday. fingers crossed we are on the backend of whatever this is.

 

If I can get through this flare with out it becoming debilitating then I will be more prepared and less anxious about the next one.

[Dedee]

I'm not sure if you are working on methylation or not or if you have done any genetic tests or not but I will just throw this out there and you can do with it what you will. I know that some Physicians will recommend glutamine for the gut but many do not methylate properly and glutamine will end up causing an increase in glutamate which causes neuroexcitablility. I would try GABA instead. Also, NAC, metylated B vitamins, and tumeric are good for some but extra methyl donors can cause problems for those with COMT mutations. Supplements are not a one size fits all protocol and what works for some causes issues for others. Just a thought.

 

Dedee

[cara615]

Dedee,

Thank you for the information. Based on our NutraEval test we know tha the has poor methylation. i don't know if he is an overmethylator or an undermethylator. We did not do any genetic testing. i would like to but have not initiated the process. Its 23andme still doing it?

 

So based on our holistic MD's advice we were giving all those supps. They really worked too! i got him almost tic free from May to Aug. Right now we are recovering from his latest episode in Nov. His latest episode was not as severe as the one in May (before we even knew it was PANDAS). We did not treat with abx in May. We just started with abx this past Nov.

 

So I really don't know. i have tried GABA before but for different reasons, to stimulate his pituitary to release HgH. it worked too!!

 

What does GABA do in relation to what you suggested?

[qannie47]

My son has had flares on abx as well. The theory is that abx should help with flares in the sense that they are a defense against infections, plus they are know to be an anti-inflammatory. I believe that they also keep the immune system from going haywire. In the sense that if the abx kiils off invaders, it is less of a chance that it will make the misguided T cells, or at least minimize it's misguided attack. Yes, I too remember the 8 day reacurrent flares...that has not been my experience at all. The duration of my ds's flares have been anywhere from 3 days to 8 weeks one flare lasted 10-12 weeks.

 

Since his IVIG he had one bad flare in September, 4 weeks long, and one mild one 3 days. I have found that for my son the first 24 hours are a good indicator for what to expect with each unique flare. If it starts out mild/moderate, that is what we can expect. If it starts out explosive/###### then we can count on that as well.