Where to start

[technodad]

I posted this on TS forums and someone advised I may want to post over hear as well.

 

My son just turned 6 and this last week had an explosion of tics. Throat clearing, grunting, head jerking, stomach jerking, looks almost like he has the hiccups that won't stop. I don't know where to start. He has always had made some noises while eating off and on for a few years, but never was to concerned with it as my older daughter did it a little to, but she grew out of it. He and she also display some minor OCD like after showing not wanting to be touched by someone who has yet to take their shower for the night because they are clean and person who has not takin it yet is not. They get that from seeing me and my wife act the same way sometimes about being clean. I watch them pretty close as I was diagnosed with tourettes about 35 years ago when I was 3, fairly mild case. Some tics would get worse some days. Not to bothersome now, but still bothered by the OCD (another reason I am freaking out about my son). I have been reading these forums for a couple days and now think what if it is Pandas? He just got his tonsils removed 9 months ago. When he was two he got tubes put in his ears for ear infections. That helped with the ear infections, then he started getting sore throats to the point where every two weeks he would be getting 104 fevers and be up all night. I think he tested positive may have tested positive for strep at least once, don't remember so much just know his throat was infected a lot and had bad fevers. However, I never noticed any difference in tics when he got the sore throats or when he was taking antibiotics. So last fall we got his tonsils out. Doc said they were infected when removed. He said with a lot of kids the tonsils never really clear all the way up and kind of stay infected all the time even though they don't show symptoms. Well he recovered well from the tonsilectomy (had adnoids removed also) and last winter was much better. I think he only has gotten 1 or two sore throats since compared to about every 2-3 weeks before removal. I did not notice any changes in tics or behavior until last couple weeks (9 months after). Only tics he had shown until this last week were noises when eating or maybe watching TV. They seemed to only get worse couple days before Christmas, Easter, vacation. Which seemed normal to me as I get worse when I am excited about something. Now 9 months later the noises are 10 times worse and the jerking/hiccuping is terrible, he is urinating frequently, and a lot more hyper. It did not happen over night. Seemed like the noises got worse first only when eating, then some more when not eating over the course of the last 2 weeks. Now the last 2-3 days is when the jerking started and the noises ramped up significantly. This last week it is like he changed into a different kid. Since I was diagnosed with TS, I figured he inherited from me, however maybe I have Pandas also? When I was a kid I had tonsils removed because of chronic sore throats and I continued to get a lot of sore throats into my 20s. Now I generally only get flu once and some sinus infections a couple times per year. Now rarely get a sore throat. Things that made/make it worse for me as mentioned was being excited like Christmas morning, going to ballgames that I am excited about, video games (for this reason I avoid them), driving, and eating.

 

I don't know what to pursue first.

 

Should I look into Pandas? As I mentioned above I never noticed him getting worse when he had strep or better when he took antibiotics. Also he got high fevers when he had his sore throats, on the Pandas website it says most people who get pandas did not get high fevers or bad symptoms other that the tics.

 

Should I just wait and maybe see if he is just excited about his first year of Kindergarten starting this week?

 

I have been trying to look for potential triggers over the last month or so. He has been swimming more (about half in salt pool and have in traditional pool). We got two cats in June which he plays with a lot. Fertilized grass in June. We were sprayed for ants in July. How long after being exposed to a trigger until symptoms flare?

[Agnes26]

When we suspected PANDAS for my DD7, we did blood work (ASO, DNASE and Streptozyme) and started her on an antibiotic. Have you looked at PANDAS Network?

 

http://pandasnetwork.org/diagnostic-tests/

 

http://pandasnetwork.org/treatment-2/

[Missmom]

One of the major pandas experts (I can't remember which one, I think either dr.t or dr. K) said that he believes most Tourette's cases result from either untreated or under-treated pandas. So with your history it is very likely you could have had pandas as a kid. Please be aware that a lot of doctors still don't take this very seriously so even thouugh you need to go in and request these tests be done, they won't always agree to do the tests. Also, many times when they do agree to run the tests they don't know how to interpret all of the results, so always get copies of everything. This way you can do some research yourself and also you can show these to other doctors. You will eventually find one who will listen to you. If you feel in your heart that there is more going on than basic childhood tics or Tourette's then go with your gut. My son also presents with mainly tics and with each exasperation they have gotten worse. This last strep infection also brought along with it the major hyperactivity, fidgetyness, moodiness, and urinary frequency. Pandas is so difficult to figure out because so many of these children present with different symptoms. If you really dig deep on this forum you can find lots of helpful information. You can also go to the helpful threads.

[LNN]

My Pandas/lyme son was once a huge ticcer. Local doctors were ready to give him a TS diagnosis immediately and had their script pads ready. Within 2 weeks, we were offered 4 different psychotropics but not one "expert" (we saw 3) would give us antibiotics despite a recent case of scarlet fever.

 

In our case, there were probably two factors contributing to my son's symptoms. The first was some sort of auto-immune response that's Pandas. The second was an inability to rid his body of cell damage caused by his immune system waging war - toxins released by dying bacteria, oxidative stress damage from inflammation, a backlog of junk that his body couldn't clear fast enough.

 

Ignore that comment about Pandas kids not getting high fevers. That's never been a criteria or diagnostic tool. I think it's there to let parents know that if their kid didn't get a high fever, it doesn't mean they're not sick. But my son always got high fevers that could last 5-6 days and make him delirious.

 

You may want to try motrin for a few days. It has to be ibuprofen, not tylenol. Give the age-appropriate dose every 6-8 hours on a steady basis - upon waking, again in the afternoon and then at bedtime. Do this for a few days and see if you notice an improvement in behaviors. Not that they'll disappear, but you may see better mood, less defiance, less anxiety, less impulsiveness. You probably won't see any change in tics. But if you see any change, it's a sign that inflammation is playing a role.

 

You say you don't notice any improvements from antibiotics. It's possible that this isn't Pandas. It's also possible that there's a chronic infection - like mycoplasma, lyme, chronic sinus infection...that a 10 day course of abx wouldn't eradicate. This has been the case for many kids and one reason behind Pandas being expanded to PANS, which is a bigger umbrella of infections that can trigger the same set of symptoms.

 

No one here can say what you should do. As you know, living with TS is really hard but doesn't doom you from living a good life. However, it seems like pursuing the possibility that infections could be behind these symptoms could save your family from a lot of struggles. What have you got to lose, except for a lot of money

[Dedee]

The frequent urination and additional hyperness are extremely common in PANDAS. I could always spot a flare in my son because of his frequent trips to the bathroom. I would absolutely request strep titers and while they are at it request titers for Mycoplasma P. also. As mentioned above, even if those are normal it doesn't rule out other infectious triggers. This is simply a place to start.

 

Dedee

[AmySLP]

Antibiotic trial would be my recommendation to see if it eliminates Or reduces symtoms. You can give ibuprofen as well and see if the anti inflammatory has an effect. It's been so long since we've tried a new abx or dosage that I'd ask the question on the forum for what to ask his pediatrician for. Also recommend an appt. with a PANDAs doc.