Did anyone's tics start as a baby?

[kpt]

Hi everyone-

 

My son is now 7 and has had what I believe is a tic since he was approximately 4 months old. Does anyone have any info. on babies with tics? At 4 months (maybe earlier, but noticed at 4mths) Jack started pulling his arms up into his body and making a grimace whenever he was really happy or excited. At 2 he added pacing to the other movements. It seems to be a pleasant thing for him, so maybe it's more of a stim? Now he mostly just does it when he is very happy, excited or really tired- but he will do it multiple times a day for up to 10 minutes at a time if he isn't interrupted. I have yet to find a doctor that has helped and until recently the movements haven't been that big of a deal for him academically or socially, but they are now interferring with Jack's ability to get school work done. The school sent home ADHD paperwork to give to the pediatrician, but the attention issues seem to be more of a result of the tic, and no one seems to have any idea of why it's happening. We've been to a variety of regular pediatricians, a neurologist, developmental pediatrician, OT's, PT's, and no one has had any idea as to what is happening.

 

Any guidance?

 

Thanks-

Kristin

[Chemar]

hi Kristin and welcome

 

I think my son had a vocal tic (a clucking noise) when he was an infant, tho the doc dx it then as a "floppy larynx"

 

at age four he had what we now know were eye tics, again misdx

 

it wasnt until he was 10 that he was correctly dx with TS and associated disorders

[michele]

Hi everyone-

 

My son is now 7 and has had what I believe is a tic since he was approximately 4 months old. Does anyone have any info. on babies with tics? At 4 months (maybe earlier, but noticed at 4mths) Jack started pulling his arms up into his body and making a grimace whenever he was really happy or excited. At 2 he added pacing to the other movements. It seems to be a pleasant thing for him, so maybe it's more of a stim? Now he mostly just does it when he is very happy, excited or really tired- but he will do it multiple times a day for up to 10 minutes at a time if he isn't interrupted. I have yet to find a doctor that has helped and until recently the movements haven't been that big of a deal for him academically or socially, but they are now interferring with Jack's ability to get school work done. The school sent home ADHD paperwork to give to the pediatrician, but the attention issues seem to be more of a result of the tic, and no one seems to have any idea of why it's happening. We've been to a variety of regular pediatricians, a neurologist, developmental pediatrician, OT's, PT's, and no one has had any idea as to what is happening.

 

Any guidance?

 

Thanks-

Kristin

 

My son first started making finger movements (chorea) and blinking at thirteen months after strep and high fevers. We did EEG and cat scans immediately. I was given a paper on PANDAS almost immediately after he started the same symptoms when he got the next infection. Scary but the ped neurology Dr. was right on. At age five after every virus and infection he gets OCD, tics and hyperness. It never really goes completely away but it is definately worse during epeisodes. We already have an ADHD diagnosis but have not tried meds for it yet. We are on long term penicillin tablets. It does help him with the behaviors but just the start of a cold virus brings it all on again and penicillin doesn't keep them viral free. We did allergy testing by blood and were neg to all. This is surprising because he is very hyper from sugar, color additives and preservatives. We give him cod liver oil and primadophilus everyday plus penicillin and a multivitamin. I don't know if anyone else has meds for PITANDS which his seems to be since it is viral induced.

[kpt]

Chemar and Michele-

Thank you both for your replies. We've been relocated twice since Jack was a baby- I'll have to go back and track down more detailed medical records to see if there is any correlation. This has been a long road for us, especially because the response I usually get is "I don't know why he's doing that, but it seems unusual." Then it's usually suggested that he's trying to get attention. Given that he started at 4 months- I'm having a hard time buying that explanation.

 

Do either of you know if you can have PANDAS without regularly getting obvious strep infections? This past year many of Jack's friends seemed to get strep repeatedly, but he never had any of the usual strep symptoms. Looking back though, the time when he seemed to be having the most trouble was pretty much around the same time his friends were sick. I'm probably grasping for straws, but we're headed to a new dr. next week and I'm hoping for any ideas beyond what's already been explored.

 

Michele-

Did the EEG and CAT scan show anything for your son? Jack had an EEG at 2, but it was negative. We've not done a CAT scan.

We are also on daily probiotics, multivitamins and Omega 3's (which definitely help him), as well as magnesium, b complex and zinc. He's a trooper- never questions me because bedtime has always been like pharmacy time for him! We also notice a link to preservatives and color- especially color.

 

Thanks again so much for your replies!

 

Kristin

[Chemar]

Chemar and Michele-

 

 

Do either of you know if you can have PANDAS without regularly getting obvious strep infections? This past year many of Jack's friends seemed to get strep repeatedly, but he never had any of the usual strep symptoms. Looking back though, the time when he seemed to be having the most trouble was pretty much around the same time his friends were sick. I'm probably grasping for straws, but we're headed to a new dr. next week and I'm hoping for any ideas beyond what's already been explored.

 

 

Kristin

 

Hi Kristin

yes! I know of PANDAS kids who have never exhibited any obvious symptoms of strep infection and yet have been either continuously ill and or shown tics and or sudden OCD symptoms. The first I learned about PANDAS and PITANDS was when our doc told me of "stealth" strep and other microbes that make people ill despite not necessarily showing the typical symptoms that one would be expecting to see for that bug. There is usually a history of exposure to the microbe.

 

PLEASE dont let ignorant albeit well meaning people make you think that your child is ticcing for "attention" .....hear it from a mom who has been through having to explain that my child was not being intentionally making sounds and movements to get attention or out of willful disobedience when asked to stop

Then they become like it is a death sentence when one mentions it is neurological *sigh* ):

 

my best advice to you is follow that mother's instinct and, without succumbing to some of the questionable stuff out there of "miracle cures"..................

check out all things that make you go "aha! that seems to fit" and try to find a doctor who is either knowledgeable or willing to work with you and learn along the way as you look into the natural options for treatment of the various things that can be at the root of tics, whether TS or transient or any of the other tic disorders.

[kpt]

Chemar-

Thanks so much for your reply! I feel energized to meet with the dr. next week . I went through Jack's baby book and saw that around the time we noticed him beginning his movements he had been treated for 2 different "infections". I had not at the time written down any more info. than that, so I will be contacting the old pediatrician to see if I can get more info.

 

Thanks again! I appreciate it.

 

Kristin

[michele]

Chemar and Michele-

Thank you both for your replies. We've been relocated twice since Jack was a baby- I'll have to go back and track down more detailed medical records to see if there is any correlation. This has been a long road for us, especially because the response I usually get is "I don't know why he's doing that, but it seems unusual." Then it's usually suggested that he's trying to get attention. Given that he started at 4 months- I'm having a hard time buying that explanation.

 

Do either of you know if you can have PANDAS without regularly getting obvious strep infections? This past year many of Jack's friends seemed to get strep repeatedly, but he never had any of the usual strep symptoms. Looking back though, the time when he seemed to be having the most trouble was pretty much around the same time his friends were sick. I'm probably grasping for straws, but we're headed to a new dr. next week and I'm hoping for any ideas beyond what's already been explored.

 

Michele-

Did the EEG and CAT scan show anything for your son? Jack had an EEG at 2, but it was negative. We've not done a CAT scan.

We are also on daily probiotics, multivitamins and Omega 3's (which definitely help him), as well as magnesium, b complex and zinc. He's a trooper- never questions me because bedtime has always been like pharmacy time for him! We also notice a link to preservatives and color- especially color.

 

Thanks again so much for your replies!

 

Kristin

 

Our EEG and CAT scans were normal. Yes it could be linked to illnesses. PITANDS is viral not just strep related like PANDAS. My favorite is when people try to tell me it is a boy thing since I had two girls first. They say boys are different or if only you were more consistant or gave him a spanking. One piece of advice I got from Cleveland Clinic is try not to focus so much on labeling the diagnosis but on the now what do we do. It can be a combination of things. What exactly does your son do that interferes at school? Do you watch his diet? How does he do with sugars? My son gets crazy with sugar. Have you given him Child's Calm it is an herbal drop? We are doing it twice a day. Who prescribed the meds he takes and how long has he been on them and how have they helped? You sound like me with the medicine shop.My son does well too with all the pills!

It is interesting to talk to you. I have never came across one other PANDAS child/parent in person where we live.This message board is so helpful. I feel very alone on this some times.

Michele

[kpt]

Hi Michele!

Jack is actually on no medication at the moment, and has never been on any other than for periodic asthma flare-ups. We have to be really careful with even asthma meds, because he has a very strong reaction to anything with any type of steroid. I feel like the school is pushing for meds for ADHD, of course they cannot come right out and say that, but we've had enough evaluations for me to catch on

 

The main problem in school is that quite honestly whatever it is that Jack does, be it a tic or stim, is actually pleasant for him. It's not rapid fire, it's more like the relaxation technique where you tense parts of your body for 10 seconds and then release. It's calming to him. There are times when he starts up, and I know he can't control it, but there's no incentive to, because he says it makes his tummy feel better and helps him think. He had a great teacher this year, but she said there were times it was really hard to pull him out of it. So even though he is very bright, at various points of the year he would start to fall behind in his work. Just yesterday it occurred to me that his worst period was just after winter break, at which point illness was rampant in his school. I was so glad he never got strep when his best friend had it about three times. Maybe it just showed up differently in him?

 

We tried OT for a long time- because he did have sensory issues as a young boy and we hoped these were related. We went dairy free for about 6 months, I used to really regulate sugars, colors and preservatives. Other than making him healthier overall, the dietary stuff didn't do anything for the tic. I haven't checked corn, soy, gluten- I know I should, but the task seems overwhelming and I can't seem to get everyone in my family to buy into dietary changes. He has had this every day since he was 4 months old- there has never been a day he hasn't "jigged" (his term other than when he has a fever. As soon as the fever breaks- it's back, which is how we can tell he's better. I don't care about the label at all, I would like to find just one dr. who has any clue as to what to do to help and doesn't think I'm nuts.

 

It's nice talking to you, too! Thanks for your response.

 

Kristin