starlygirl

My 4 year old had not been bothered by his tics previously, but the other night, he was in quite a bit of distress about the "itch" in his throat. I assume this is the premonitory urge that he is recognizing. I was ignoring the throat-clearing tic, as always, but he randomly said "Mom, I feel an itch in my throat that makes me want to say [insert throat-clearing sound], but then it keeps itching again". He was so upset about the itch & I didn't know what to say or do for him. I tried giving him a sip of water but he freaked out & said that made it feel worse. I thought it was interesting that a child so young would even recognize a premonitory urge and also that it was the premonitory sensation that bothered him so much, moreso than the tic itself. Any ideas on how to handle it if/when this happens again?

Don't have any tips, although I don't think the magnesium would hurt anything. Just wanted to say my son is 4 and he started 5 days a week of Pre-K this year. He'd gone all summer with minimal tics but has had an increase since he started school this week. I figured it was probably connected to anxiety about the new routine, even though he seems to be enjoying school. Interesting to hear something similar going on w/ your son.

My son has had some tics in the past that were obviously tics, but I can't figure out if this is complex tics or something else. His hands are on his face & head a lot (2-3 times per minute), but it's not like the same repetitive movement or sequence of movements, which is what I would expect if it was tics. I'm wondering if it could be more of a sensory problem, like he notices every little itch & has to touch/rub/scratch at it? He'll rub/itch his nose (in many different ways, not the same motion each time), itch his head in various places as if maybe his hair is bothering him, rub at different parts of his face, etc. I actually saw a video of a child with Asperger's syndrome on YouTube and he was doing the exact same things. Sound familiar to anyone? It's been going on for about 3-4 months. I'm not sure if I should just continue to ignore it.

This is so interesting. My son has tics & we haven't determined yet if it is PANS or just plain old tics/tourette's. We visited Dr. M in Tampa who was such a huge advocate of using fish oil. I asked about other supplements, but she only really recommended the fish oil specifically for kids with tics. I've given it to my son a couple times, but I'm afraid to stick with it since I read about so many adverse reactions.

Thanks for the post. From someone who is very new to dealing with all this (and hasn't handled it too well thus far), I really appreciate hearing your perspective.

My son is having problems with allergies and the usual OTC antihistamines have not helped, so we visited his pediatrician today. He was prescribed Flonase, a steroid nasal spray. I'm debating whether to fill the prescription since I think I've read that steroids could increase tics in people w/ Tourette's. This is a nasal spray, rather than an oral steroid, but I'd imagine it could still be an issue. Would love to hear from anyone who has either used Flonase with no problem or anyone who noticed that it triggered tics. Thanks!

I had a weird experience the other day. My son's only tic right now is a vocal tic which has been quite mild (maybe 5-10 times per day) for the last 2 months. We went swimming & he ended up w/ gas pains and a stomach ache from gulping air & swallowing pool water. He actually vomited up a bunch of pool water. After coming home from the pool and 30 minutes prior to throwing up, he suddenly started doing his vocal tic CONSTANTLY - every few seconds for half an hour. Then he threw up & the ticcing stopped about 5 minutes later. It was so weird to see him have a reaction like that. Has anyone seen anything similar happen to your child where they react to something so obviously and with such intensity? I'm still not sure if it was the chlorine in his digestive system that caused it or if it was just the fact that his stomach was upset, or perhaps it happened because he was stressed out that his tummy hurt. Maybe a combination of all those things?

I need suggestions on how to get Natural Calm (magnesium citrate) into a 4 year old who will not drink it mixed w/ OJ. I mixed 1/2 tsp into an entire glass of OJ, but he refused to drink any more after the first sip. I thought it tasted fine - a little "lemony", but he won't go for it. Any ideas on ways to mask it?

Hi Fixit, He's not 100% tic free, but he only has about 5-10 tics per day (a vocal tic "cough" type of sound) - it's been mild like this for the last 2 months. It was only for that 30 minute period after we got out of the pool & before he threw up that he was ticcing every few seconds. There was definitely something in that pool water that did not agree w/ his system (both digestive & neurological!). So, that's crazy that both your son and Hugs2Day's son's tics disappear for a while after throwing up!

Thanks for the replies. FixIt, that's weird that your DS doesn't tic if he's throwing up. Why do you think that happens exactly or is it just a mystery? I'd have guessed with a PANS child that if they were ill with a stomach flu, their immune system would be activated & they'd tic more. Guess there's no hard-and-fast rules. I've been searching google for information about chlorine having an effect on the nervous system, but am not coming up with much. That was just the weirdest event ever - the tic explosion was obviously somehow connected to either the upset stomach or the chlorine. He's been "normal" ever since but now I'm afraid to take him swimming again! Maybe what happened doesn't sound so weird to people that have been dealing with Tourette's or PANS for a while, but it's really making me scratch my head trying to figure out what the heck happened to cause it.

Regardless of whether it's labeled Tourette's, chronic motor tic disorder, or whatever, it does seem you have a genetic predisposition to developing tics among your family members. My son is in a similar situation to yours in that he's had some tics come & go for a bit over a year (although my son started w/ one motor tic which was replaced by a different motor tic which was replaced by a vocal tic, so I believe he does fit the diagnostic criteria for Tourette's already). I'm still not sure if we're dealing w/ PANS either. His motor tics were mild, but the vocal tic came on very sudden & severe after an illness. It's frustrating when you can't tell if it was caused by the illness or just coincidental timing. Anyway, sorry I haven't much to offer, but thought I'd reply since this board doesn't seem to get much traffic (I wish it did!). The PANDAS board is pretty active, but it's lonely over here for those of us who may not be PANDAS! Stacy

My son has a tic disorder, but we haven't determined if there is a PANS component to it yet or not. He had a sudden, severe onset of vocal tics 4 months ago after an illness. He'd had some mild motor tics intermittently prior to that. The vocal tic was severe for about 2 months, then slowly improved to the point that it is still there, but has been quite minimal for the past 2 months (anywhere between 5-20 vocal tics per day). So, something weird happened today. He's just starting to learn how to swim & he keeps gulping air & swallowing pool water which results in a stomachache & gas pains after swimming. Today, the pains were very bad and he actually ended up throwing up a bunch of pool water. 30 minutes prior to throwing up, he suddenly started doing the vocal tic CONSTANTLY - every few seconds for 30 minutes. Then he threw up & the ticcing stopped about 5-10 minutes later. Would something like this happen with a PANS child? I'm leaning towards this not being PANS, because it wasn't a virus or bacteria that caused him to throw up, so it wouldn't have been an autoimmune reaction. Also, the tics went away very quickly afterwards. It was so strange how the severe tics were clearly connected with the upset stomach. Does this sound like more a Tourette's type of reaction? I'm wondering if he was ticcing so badly just because he was upset/stressed that his tummy hurt? Or maybe it was a physical reaction to the chlorine? Thanks for any insight anyone might offer!

This is the product I'm using with my son: http://www.coromega.com/products/omega3d-squeeze/ If you hover your mouse over "ingredients", you'll see a list of what is in it. They make one without the added vitamin D, but my son's vitamin D levels are a little low also, so I got the one with added D. I gave this to him for a couple of weeks & don't think I noticed much difference one way or another, but I was so nervous about the possibly of it making things worse that I stopped...I haven't used any supplements with him yet except for the fish oil & I'm paralyzed with fear by the knowledge that some supplements could actually make things get worse.

Thanks, Chemar. We just started the fish oil yesterday, so we'll see how it goes. Our doctor specified to use fish oil with a higher amount of EPA than DHA. I'm not sure what the medical reasoning behind that is, but wonder if perhaps those who've had trouble with increased tics may have been using oil w/ more DHA? The fish oils I looked at that were made specifically for kids seemed to contain mostly DHA. I ended up getting one made for adults (Coromega Squeeze) to get the higher EPA levels & he only needs half a packet per day to get the correct dosage.

My son has a tic disorder, probably Tourette's, possibly PANS. Either way, his Dr. has highly recommended that he take fish oil (Omega 3 only with higher EPA than DHA). I'm only finding stories on the forums about fish oil exacerbating tics. Has anyone used it & found that it was helpful? Thanks!

Deedee, thanks for sharing your story. We have a first appointment with Dr. M coming up in May. I'm trying to sort out whether my son has Tourettes or PANDAS & hoping she can help us nail down the correct diagnosis. Stacy

Can anyone share what blood tests are helpful in diagnosing PANDAS? I've seen a "PANDAS Panel" mentioned, but not sure which tests this is specifically comprised of? Thanks! Stacy

My son has a few of these things to a certain extent, including some little things that could possibly be considered OCD behavior, but these are things that just appear to be part of his personality, meaning they didn't happen suddenly overnight like the tics did. Stacy

My child had a sudden onset of severe vocal tics about 6 weeks ago after he was sick (no strep test was done). He has always had a slightly obsessive personality & that hasn't changed or gotten any worse. The sudden & severe tics are his main symptom. Does anyone out there have a PANDAS child who has tics, but not OCD? Did anyone start out w/ tics & then OCD showed up later? Stacy