Please explain Wax and Wane

[myrose]

For those of you that have read my previous posts you know that my daughter is on her 5th day of amoxicillin for a strep throat and her tics are still 100% gone. That almost disapeared entirely a few weeks prior to this when she was prescribed nasonex.

I am working on all this now and am currenty waiting to pick up her blood work from August 07 to have someone else look at the levels for Pandas and then it will be off for some allergy testing.

Right now....I am not sure what is going on but I am not doing anything at this time. I guess I am just waiting for them to come back.

Until they do, I am not changing anything we are doing right now.

 

My post is to ask about the wax and wane period. Right before she was prescribed her nasonex her ticing was on fulll blast. I thought this was due to the wax and wane? It lasted quite a long time though.

So my question to anyone who can help is how often does the wax and wane period come about and when it does come...how long does it last??? Could my daughter be possibly in this stage now?

I never really understood this wax and wane thing and so now I am asking the BEST doctors around and those doctors (in my opinion) are all you wonderful people ON THIS BOARD!

[Chemar]

Hi Jasminsky

 

I only know about waxing and waning of Tourette tics and OCD, so I cant comment re PANDAS

 

altho we have been able to identify certain triggers that make these wax (ie increase) for my son, yet there are also times when they wax (or wane) and we cannot pinpoint anything specific having triggered it (or alleviated)

 

I have never been able to establish any clear period ie how long they stay waxing or waning.....but I do know that before my son was on his careful diet with supplements, Epsom baths, acupuncture and chiro...he would have *very* intense waxing phases that lasted for very long periods and not much waning.

Now, altho he still tics almost daily, yet the waxing, when his tics are more pronounced and multiple and 'stronger'......those phases are much reduced and usually associated for him with illness, full moon, tooth issues or if he accidentally is exposed to the food or environmental triggers. His waning phases, which are more the "norm" for him now, are characterized by tics that are so mild as to be barely noticeable by anyone not looking, a shoulder shrug, an eye blink, a head turn, an ""eh" sound etc

[P_Mom]

Jasminky,

Just something to take into consideration regarding the Nasonex. Nasonex is an anti-inflamatory 'allergy' medication, but, its main purpose is to reduce swelling in the nasal passage to allow for easier breathing. This medicine accomplishes this with the steriods that are in it. (steriods are anti-inflamatory and they supress the immune system) Just for you info., steriods can have a DRAMATIC effect on NOT safe to use long term. Although the Nasonex has only a small amount of steriods in it, perhaps there was enough to get into your daughters bloodstream and cause this reduction in tics. Just a thought I had when I read your post. Being she has responded to antibiotics, I would personally lean to the PANDAS side of things. My older son ticced and had mild ADHD issues, and when he took antibiotics, it all went away. When he stopped the 10 day course, he still did well and ticced occasionally. He got sick again, tics majorly increased, went on antibiotics, and they went away. After the course, again, he still did pretty well, ticced occasionally. Blood work showed only borderline aso,(6 months after strep), still considered normal titers for strep. But, based on symptoms and how the onset of it all occured, (not necassarily the subsequent waxing with any illness), and because of his response to antibiotics, he is considered PANDAS. He has been on prophylaxis PenVK since January, and he is doing fantastic. It will be coming up on two weeks without one single tic or ADHD behaviors, (that is a long time for us so far), and the best thing about this is that he is ill right now with fever, cough, stuffy nose, etc. and he still has shown no symptoms of PANDAS or tics, etc. This is the first time for no symptoms with illness, but, it is the first time he has been on the prophylaxis while ill. My younger son is doing great, too. He has very mild behaviors, no one would notice, but, he is also ill, too, and this is what I attribute the behaviors to. But, they are so mild, I really am overall quite grateful how well they are doing. By the way, he is also on Pen VK.

 

Take care.

Kelly

[ad_ccl]

Just stopping in quickly...PANDAS is different than Tourettes - the tics and more spiky/sawtoothed - they come on quickly - often overnight then it takes a while for them to settle down - a at least that is what I have read and what our experience is. I have found as time has gone on and my son is doing better and better - that the spikes are not at all as extreme as they once had been - and the time it takes to get better is much quicker. To give PANDAS moms lots of hope - our son is doing amazing - we had strep in our house in October and things got pretty bad - he missed a bit of school - but things got better (after a few full rounds of antibiotics) - and he has been doing really well since Christmas. Interestingly we ran out of probiotics and fish oil over the holidays and that was when he stabilized the most - we have not added them back in to his vitamins. When we first added probiotics and fish oil we did see improvements - so I think it just shows that the body does change and what worked in the past may not work now for some reason. He is happy and no noticeable tics.

[P_Mom]

Great news and it does help to hear these success stories. One question..is your son on preventative antibiotic?

[ad_ccl]

He is on azith every 5 days.

 

Jaminsky - when my son was first diagnosed with PANDAS the antibiotics made everything go away - but within a few days being off the 10 day round the tics all came back - keep a journal of symptoms - as it is easy to end of forgetting the sequence - if tics do return (with hope they won't - I have heard that can be the case for some) then ask the doctor about prophylactic antibiotics.

Good Luck.

[P_Mom]

Did he actually contract the strep while on Azith or did the symptoms increase just from the exposure? I have read of reports of Azith starting to become resistant to strep in the mid-west.

[trubiano]

I just wanted to say that my son's tics have not come back in over six months! He is taking PCN daily and he started ticcing only once because he was off his meds for three days.(was at grandmas house and she forgot) I really think daily antibiotic is needed in our PANDAS kids.

[P_Mom]

From what I have seen with my own eyes, I agree completely. Plus, the Doc told us the risks of what srtep could do to these kids far outweighs any risks from the antibiotics...I give it with confidence.

[ad_ccl]

Kelly,

 

He did not test positive for strep - but his brother did. His symptoms increased tremendously. He has not tested positive for strep since the initial onset of symptoms 3 1/2 years ago- the doctor has told me that since he is already on antibiotics it can skew the results. He has been on antibiotics since the initial onset. First amoxycillin then we went off it as he was doing so well - and things went so downhill - we went back on amox and it no longer worked -he was not getting better - we then tried many different antibiotics none worked - azith was the final one the doctor was willing to try - it was a miracle -and we have been on it for almost 2 years. His strep titers have been tested every 6 months or so - They slowly came down over the years - from about 1500 to 600 then last summer we tested and they were around 300 - we have not tested since.

[bmom]

One question while I have all you PANDAS moms ear. I believe my son is PANDAS. His initial symptoms came after sore throat-1 week after. Possibly strep, but doctor didn't know of connection-so no test. 3 months after initial symptoms he contacted strep again. Began with frequent urination and sore throat. This time I had him checked and started Pen V. Urination frequency stopped and no tics-all well. Now I see a few tics with illness non strep related, but I don't really see tics otherwise, only once or twice for one day oover the whole year. Would you push for daily or weekly antibiotics or wait and see? Would you push for antibiotics during unstrep illness?

[faith]

bmom,

I only would if he was having tics everyday. Just my opinion.

 

Right now mine is ticcing with alot of vocal sounds, wish I had more antibiotic in the fridge just to experiment with, now that I think about it I do, but probably only two teaspoons left. You know, I'm just crazy enough to try it. I'll let you know. (reminder, we are not PANDAS, but have had one episode that cleared with antibiotic last year).

 

Faith

[kkver]

Jasminsky

 

My kid Tics stop when on antibiotics which i have use for 10 days and then mild tics come back . Last time it took some 8 to 12 weeks to completely vanish. Right now he's getting better from the one he got from the strep during thanksgiving and are very mild and visible only when he visits any new place or meets someone new due to excitement. I don't keep him on continues antibiotics after initial 10day ( double the normal zithromax) course. Hope this helps.

[trubiano]

One question while I have all you PANDAS moms ear. I believe my son is PANDAS. His initial symptoms came after sore throat-1 week after. Possibly strep, but doctor didn't know of connection-so no test. 3 months after initial symptoms he contacted strep again. Began with frequent urination and sore throat. This time I had him checked and started Pen V. Urination frequency stopped and no tics-all well. Now I see a few tics with illness non strep related, but I don't really see tics otherwise, only once or twice for one day oover the whole year. Would you push for daily or weekly antibiotics or wait and see? Would you push for antibiotics during unstrep illness?

Are tics your only issue? My son get's focus issues, OCD, and becomes very emotional while in an "episode". If you are not dealing with all the other stuff and the tics have gone I would just keep watching for strep.

[ad_ccl]

If tics are not noticeable to others and not a bother to him I would let it ride. Remember there are risks to ongoing antibiotics too - for us there is no question the benefits outweigh the risks - but it sounds like your child is pretty much tic free - if I am reading correctly.

 

Faith - I posted a while back about our amazing success with L-Carnitine for vocal tics (thanks Chemar). After our exposure to strep my son had a terrible vocal tic - non stop and loud - it cleared up with L-Carnitine. It was a mini miracle!