Sudden onset of TICs/OCD behavior

[sriramcs]

just want to chime in and offer encouragement too. Stay connected with forums like this for support and information. I've learned (am learning) so much her myself. My son is dealing with lyme, and so his stuff has been a lyme triggered PANS situation.

I remember when my son first had a sudden onset blinking motor tic last year. I can relate to sriramcs post about feeling so upset and loosing sleep. I remember last year when the tic started I just wanted to back time up. It was so sudden, like the name says "sudden onset". There were no other signs or warnings (well, that I recognized then). It started on a Wed. and I remember thinking for days, I just wanted to go back to that Tuesday. And wondering what had happened, what in the world was going on. Then you dig and dig and research and find a good dr. and support and learn, and realize that it can get better.

My little guy is just about 99% symptom free and doing really well overall, feeling good. He stopped ticcing last year after 6 weeks;

he did unfortunately start again this past fall and it still hasn't resolved 100%, but it is usually minor and I believe full heartedly that it will go away as we work through the triggers (we're detoxing, combating yeast, and infections). This isn't easy to see the ones you love the most go through these things, but hang in there! There are answers and there is another side to this; I believe it!

 

Thank you all for the encouragement!!!

 

To me, it is too co-incidental that once she got the flu and had Tamiflu prescribed, she starts the tics a few days after coming off it. The docs tested her for strep first and then the flu next. Strep tests came negative and the flu came out positive. I have heard of side effects of Tamiflu on young ones (after I researched in hindsight and have been in touch with a Mom whose son had tics post Tamiflu) but at that point, all I knew to do was follow my pediatrician doctor's advice. Sometimes, I wish in hindsight to just let her endure the flu by controlling temps with just Tylenol and Advil but I cannot go back in time, can't beat myself up in hindsight. I can't even for certain say that Tamiflu is the cause but that is the only thing introduced into her system at that point.

 

Here are some questions for parents:

 

1. If it is virus and flu related shock to my 7 year old girl's system and not bacterial, can it still be classified as PANDAs?
2. I tried 4 days of dairy free but the biggest difference I saw was when was well rested and not stressed. When she is well rested, she tics lesser (more like once in half hour) but when she is tired or stressed or competing in a game, her tic frequency go up like 3 or 4 times a minute and it is very very hard for me to watch her ticcing and keep smiling from across the table on and off though it is what I have been doing. Even if I do not see improvement within a few days, do I still keep her dairy free or try gluten free (different things at different times) to see what she responds to. She has NEVER been allergic to any foods, so do I just wait for her body to work out the Tamiflu in a few months? I am keeping her hydrated and on a healthy diet with 99% of her stuff organic and keeping her sugar and dairy intake to a minimum. Periodic intake of boiled eggs for folic acid, organic apple sauce with cinnamon and probiotics mixed in them, regular spinach salads, unscented stuff used for washing her clothes, fish for Omega-3, epsom salt baths for magnesium relaxation, plenty of oranges and organic apples, and occasional garlic in her food too are all I have incorporated. Her mood tantrums have been no different than what they were a year ago, so ability wise and mood wise, she behaves fine. I do have a DLP TV and she watches about an hour of TV a day during school days and a couple of hours during the weekends, and this has been cut down from several hours before.
3. Her motor and math/reading/social skills are still top notch and working at 100%, she is entering week 5 of her tics. We have taken her to a chiropractor that specializes with kids and he found misalignment around her C1 vertebrae in her neck, right where the tics can originate. We hear a pop whenever she jerks her neck that goes away after a series of adjustments and then the body goes back to its badly aligned state and over the weekend, the pop is back. The chiro feels he can really help her, and we are hopeful he can. Her facial grimacing part of the tics that we saw over Christmas has virtually gone down, however her neck and head movement part of the tics still remain. Is patience my best ally? Am I doing enough here? Do I consider homeopathic treatment if I am reluctant to introduce allopathic medications at this point?
4. I live in Indiana and am taking her to Riley Children's hospital's neurologist on January 20th. So far, all we have told my 7 year old girl is that we are getting her neck checked out making sure there is nothing wrong with it. We haven't used the words tics or sickness to describe any of it. Her physical was top notch from her pediatrician. Her eyesight was 20/20 (though she keeps rubbing her eyes on and off, has happened for the last 4 months though 3 eye tests have revealed 20/20). My first line of thought is that I will refuse any medication that the neurologist advocates because all it does is mask the symptoms and not treat the causes, I am pursuing the natural means as long as possible, I have had enough of medicines in my daughter's system, especially after the recent Tamiflu episode. Do I finally tell her that post flu, she has been having these neck jerks that will go away eventually but we have to keep an eye on it? She is an anxious Type A child (goes back to kindergarten more than a year and a half ago, she is in first grade now) and worries she will be a failure/abnormality if something is wrong with her. I have been told that the less attention you bring to it, the easier the stress on the child and the quicker it will go away. I know parents have to play the fine line. That is why I am asking for parents' advice as to how to tactfully get across to my child.

 

Any advice on the above would be GREATLY appreciated.

Edited January 12, 2015 by sriramcs

[BeeRae22]

In response to your questions...

 

1. "If it's virus and flu related shock and not bacterial can it still be classified as PANDAS?"-- well, PANDAS- Pediatric Auto-immune Neuropsychiatric Disease Associated with Strep is, by definition, an autoimmune disease that is triggered by a strep infection. PANS- Pediatric Acute onset Neuropsychiatric Syndrome, is again an autoimmune disorder with triggers other than strep. So, no. This would technically not be called PANDAS, it would be PANS, but from where most of us sit, that's 6 of 1 and 1/2 dozen of another. Both are really clinical diagnoses. PANDAS is (a little) more accepted in the mainstream medical community than PANS. I stress little.

 

2. First, I am the first to point out that I am not qualified to give any medical advice, but I've done a LOT of research. I'm going to go out on a limb and guess that the Flu itself was more of an issue than the Tamiflu. I've not done any research on it- hw long does it remain in the system? If you're dealing with a PANDAS/PANS issue and symptoms, than the infection is likely what triggered the immune system- although I have heard of vaccines causing issues, I haven't (yet) heard of post infection medications "triggering" Pans... (Anyone can feel free to jump in here on that one!)

 

--re: gluten free/dairy free diets, etc.... Many have shared great successes with modifications for allergy and anti-inflammatory diets. My dd's onset of PANS began with restricted eating so I've not had the luxury of altering her diet in any way (anything she is willing to eat she is allowed) but again, I'm going to go out on a limb here and guess that this is likely not your dd's main issue (if it's an issue at all), and while it might help some, with everything else you're dealing with I'm not sure I would really focus on it right now- especially since she's not had any allergies or issues with it in the past.

 

I do have a friend who's son developed a gluten allergy at the age of 7, and one interesting thing I did learn from her about that, was that gluten, even the tiniest amount, can stay in the system for WEEKS. So if you're going to attempt experimentation going "gluten free", keep that in mind.

 

3. "Is patience my best ally? Am I doing enough here? Do I consider homeopathic treatment if I am reluctant to introduce allopathic medications at this point?" Patience is a wonderful ally when applied at the right times. (Crappy answer, I know!) I can't speak to tics because dd never REALLY had them, although she did have some facial grimacing and unusual repetitive movements when things were at their worst. --So, I'm not sure how to respond in regard to the chiropractor's methods, but I do know now that if I were considering this as a treatment plan, I personally would go with an integrative DO and not a chiropractor. Which leads me to your "reluctant" question... I think first you should have your dd tested to see what, if anything, is revealed before ou decide the course you're going to take. Only you can make that choice for your dd regarding her treatment, but my advice would be to keep an open mind especially about the things you're "reluctant" to do. I remember giving my dd her first doses of abx, and how nervous I felt about it. Here I am, a full year later, giving her 3 intracellular abx 2x a day, and I'm now "reluctant" to wean her off of them. Your perspective may change a lot through a journey like this. My dd's integrative DO doesn't "like" prescribing abx, but it's the best course of treatment in my dd's case.

 

"Am I doing enough here?" -- yes. My answer is yes, because you're here on this board, asking questions, learnign, researching, and doing your best to help your child. That's all you can do really.

 

4. Just a gentle heads up that as a rule, most neurologists, even ones that "acknowledge" Pandas/Pans, unfortunately don't typically prove to be very useful. I haven't heard anything about Riley Children's, so I'm not sure if they're "Pandas friendly" or not? I can tell you that my state's excellent children's hospital proved to be completely useless in this regard, along with another facility that was actually once headed by a leading Pandas researcher I guess what I am trying to say is to be cautious with any "professionals" in the beginning-- most that claim to "know all about" this one probably don't.... This is an incredibly complicated disease.

 

As far as telling your daughter, go with your gut- you know her best. I would give her some amount of explaination but keep it simple like you mentioned. If she's having neck jerking than she's likely aware of that already. You may want to ask her about it in a casual way. "Is your neck bothering you today? Sometimes when you get the flu..."

 

Does she have ocd? Sounds like you're mentioning tendencies already. Most Pandas and Pans kids have had tendencies in the past that become severe during exacerbations. Keep a close eye on her if you suspect. Ocd doesn't always look like what people expect it to (hand washing, neatness, organizing, etc.) when my dd's Pans exacerbation started, she kept saying her throat hurt and she couldn't swallow well. Naturally we thought she had something wrong with her throat. She eventually even had an endoscopy, which of course revealed nothing. Turns out, it was ocd talking, telling her she would choke if she ate anything. This came out if nowhere, and we had no idea. And she didn't express it that way either, she just kept saying her throat hurt (much later she did reveal that she was scared to eat). Ocd is a sneaky, lying, cheating anxiety monster. Be careful of it.

 

Best if luck on the 20th. Keep reading and asking... You're doing the right things.

[pr40]

perhaps I am tired and did not read sriramcs's post carefully enough. is the neck movement the only symptom? if it is, it may not be PANS. Pans usually comes with a few symptoms at the same time.

how about frequent urination? separation anxiety? ocd in any form?

[sriramcs]

perhaps I am tired and did not read sriramcs's post carefully enough. is the neck movement the only symptom? if it is, it may not be PANS. Pans usually comes with a few symptoms at the same time.

how about frequent urination? separation anxiety? ocd in any form?

 

Since you asked, let me list them out pre-flu and post-flu:

 

1. Tics - neck and head jerking along with facial grimacing
   1. None before flu and Tamiflu
   2. Started once she went off Tamiflu and got over the flu
   3. Have reduced to neck and head jerking probably once in 15 or 30 minutes and increasing in frequency during times of stress or high activity. Facial grimacing has pretty much died down, just the neck and head jerking remain. If not for the tics, I would not even be here.
2. OCD tendencies
   1. Like I said, she has been an anxious kid for the last 2 years, very conscious of what teachers think, doing things by the book so that she does not want to get in trouble. We have re-iterated more and more that it is OK to not be perfect and have requested that teachers say that once in a while too so that she can hear from them. She has responded well so far and is not too worried about it since she went back to school after the winter break but we will keep an eye on it.
   2. My wife volunteers at school every Monday and one mean boy in my daughter's 1st grade class told my daughter that her Mom is fat and so is his. Go figure, kids are nasty at every age. That has led her to ask more often if she is fat. I tell her that she is just fine for her age and is in the 50th percentile in weight and 75th in height. I tell her it is best to eat healthy and re-evaluate every few months instead of worrying about it daily. I think it is more a factor of that boy joining her class in October and making those comments than OCD. I told the teachers to keep that boy away from her to reduce her stress levels.
3. Separation Anxiety
   1. My wife or I always have slept with her for the first 10 minutes before letting her sleep by herself and she normally falls asleep fast enough when we do that, no different before flu, no different after flu. We realized the Epsom salt baths were getting her actually energized and she had a harder time sleeping, so we are saving it for the weekends and Fridays. Her sleep patterns are pretty much the same. Maybe we have enabled her but I do not see a reason to change it up at this point while she is having tics to introduce more stress.
4. Frequent Urination
   1. Nope. She sleeps through the night without the urge to go to the bathroom despite us increasing her water intake.

So, given these facts, I am not jumping to conclusions towards PANS since all her abilities (math, puzzle solving, reasoning, cognitive skills) are all 100% functional. I will get her tested and see if she is deficient on any front. I will explore some essential oils that I have heard work for kids with tics and then go down the integrative medicine route if that does not work. I will keep you all posted how it goes. I will keep an open mind as advised and wish all parents on here luck with their kids as well. You parents are a big source of my strength, let me stress that .

[bws1565]

We have taken her to a chiropractor that specializes with kids and he found misalignment around her C1 vertebrae in her neck, right where the tics can originate. We hear a pop whenever she jerks her neck that goes away after a series of adjustments and then the body goes back to its badly aligned state and over the weekend, the pop is back. The chiro feels he can really help her, and we are hopeful he can.

Is this a "specific chiropractor"? (specializing in brain stem / spine alignment?)

 

I have taken my daughter to one for an evaluation several years ago. He said that there is significant stress in her brain stem area. My pediatrician laughed from it, and I never followed up.

I am interested to know more about this. With my pediatrician not being of much help, I am thinking if we should take her anyway.

[pr40]

so you have sudden onset of tics but no other symptoms. i'd go with that.

 

"I will get her tested and see if she is deficient on any front." -- do you mean cognitively? I am not sure you need this. Cognitive impairment is usually obvious -- like kids who were excellent in math suddenly can't do basic addition, heand-writing skill disappears, and alike.

 

i would suggest doing comprehensive blood work for any auto-anti bodies. Again, I am not convinced this is PANS. have you consulted tic forum?

[sriramcs]

so you have sudden onset of tics but no other symptoms. i'd go with that.

 

"I will get her tested and see if she is deficient on any front." -- do you mean cognitively? I am not sure you need this. Cognitive impairment is usually obvious -- like kids who were excellent in math suddenly can't do basic addition, heand-writing skill disappears, and alike.

 

i would suggest doing comprehensive blood work for any auto-anti bodies. Again, I am not convinced this is PANS. have you consulted tic forum?

 

Yes, that is what I meant. Blood testing to see if there are any auto antibodies. Can you get blood tested without a doctor's approval?

 

When I first brought it up to the pediatrician 2 weeks ago, she asked me to wait till the neurologist appt. on the 20th and let them determine if she needs that. My gut says I need the blood testing done. I have never had her blood tested whatsoever since she was a baby, during the first 3 months for serious ailments, and that is about all she has had done on the blood testing front.

[sriramcs]

 

We have taken her to a chiropractor that specializes with kids and he found misalignment around her C1 vertebrae in her neck, right where the tics can originate. We hear a pop whenever she jerks her neck that goes away after a series of adjustments and then the body goes back to its badly aligned state and over the weekend, the pop is back. The chiro feels he can really help her, and we are hopeful he can.

Is this a "specific chiropractor"? (specializing in brain stem / spine alignment?)

 

I have taken my daughter to one for an evaluation several years ago. He said that there is significant stress in her brain stem area. My pediatrician laughed from it, and I never followed up.

I am interested to know more about this. With my pediatrician not being of much help, I am thinking if we should take her anyway.

 

 

Yes, this chiro specializes in spine alignment. They do an X-ray followed by EMS (electro magnetic scanning) that shows their neck curvature (and spine too), how much it deviates from the normal 45 degrees (my daughter's was 23 degrees) and work on correction. The C1 vertebrae had some issues, and that is an area connected to the Otic ganglion, a nerve responsible for so many of the head and neck movements and logically might have some impact on tics too. That is why I went down that path.

 

I have a co-worker with 2 boys - one who has juvenile diabetes and another who has had seizures in his life, this chiro treats them both and has done so for a couple of years. My co-worker told me that he was skeptical in the beginning too but once he took his 2 boys and his adopted girl to that chiro for the last 2 years, they rarely get sick since their nervous system (which is connected to several organs in the body and controls pretty much everything) and even if they do get sick, get out of it fast. The situation my co-worker dealt with his boys is what prompted me to give that a shot for my daughter's tics.

[pr40]

 

so you have sudden onset of tics but no other symptoms. i'd go with that.

 

"I will get her tested and see if she is deficient on any front." -- do you mean cognitively? I am not sure you need this. Cognitive impairment is usually obvious -- like kids who were excellent in math suddenly can't do basic addition, heand-writing skill disappears, and alike.

 

i would suggest doing comprehensive blood work for any auto-anti bodies. Again, I am not convinced this is PANS. have you consulted tic forum?

 

Yes, that is what I meant. Blood testing to see if there are any auto antibodies. Can you get blood tested without a doctor's approval?

 

When I first brought it up to the pediatrician 2 weeks ago, she asked me to wait till the neurologist appt. on the 20th and let them determine if she needs that. My gut says I need the blood testing done. I have never had her blood tested whatsoever since she was a baby, during the first 3 months for serious ailments, and that is about all she has had done on the blood testing front.

 

if you want to get her tested, make sure to go to the apt prepared. make your case that this is Pans like auto-immune reaction. argue that you want to rule it out, if nothing else. (this if the neurologist is not PANS friendly)

point to family history -- tics run in families as do autoimmune conditions.

have a list of blood tests you want performed ready.

[sriramcs]

 

 

so you have sudden onset of tics but no other symptoms. i'd go with that.

 

"I will get her tested and see if she is deficient on any front." -- do you mean cognitively? I am not sure you need this. Cognitive impairment is usually obvious -- like kids who were excellent in math suddenly can't do basic addition, heand-writing skill disappears, and alike.

 

i would suggest doing comprehensive blood work for any auto-anti bodies. Again, I am not convinced this is PANS. have you consulted tic forum?

 

Yes, that is what I meant. Blood testing to see if there are any auto antibodies. Can you get blood tested without a doctor's approval?

 

When I first brought it up to the pediatrician 2 weeks ago, she asked me to wait till the neurologist appt. on the 20th and let them determine if she needs that. My gut says I need the blood testing done. I have never had her blood tested whatsoever since she was a baby, during the first 3 months for serious ailments, and that is about all she has had done on the blood testing front.

 

if you want to get her tested, make sure to go to the apt prepared. make your case that this is Pans like auto-immune reaction. argue that you want to rule it out, if nothing else. (this if the neurologist is not PANS friendly)

point to family history -- tics run in families as do autoimmune conditions.

have a list of blood tests you want performed ready.

 

 

Went to the neurologist. They did their cognitive and motor tests. My 7 year old daughter tested fine on all fronts. I asked about OCD, they said that they did not recognize anything from our answers that can pinpoint to OCD but did say to keep an eye on her anxiety. They said girls are more likely to get out of this than boys based on data for transient tics, however anxiety and OCD reduces those odds. Though we told them and they observed that she had only motor tics, they asked her about if she had any urges to make weird noises or clear her throat (I understood why they wanted to confirm). She said No to both those.

 

I talked to them about PANs and PANDAs and they said if we did not know exactly what we are looking for, we may be asking the wrong questions, especially when there was no family history of tics. They did schedule a follow up in 6 months. I am a little torn on what to do but I have not exhausted all non-medication possibilities yet in terms of diet and essential oils, which is probably what I will focus on heavily the next six months.

[BeeRae22]

Did you have any blood testing done? Regardless of how you decide to go forward, I wouldn't stop until you had blood work done. If nothing shows up and her symptoms and/or tics don't worsen, then great- do what you think is best and follow up later. But if something does show up, it will give you a direction to go in.

 

If she has issues later and you didn't at least get a work up, I think you'll regret not pursuing it.

 

I would also keep a close eye on her. OCD can be sneaky, and often times its victims are afraid or ashamed to "tell" their thoughts or fears. Hopefully she doesn't have any though! does she seem to be improving as time goes on?

[sriramcs]

Did you have any blood testing done? Regardless of how you decide to go forward, I wouldn't stop until you had blood work done. If nothing shows up and her symptoms and/or tics don't worsen, then great- do what you think is best and follow up later. But if something does show up, it will give you a direction to go in.

 

If she has issues later and you didn't at least get a work up, I think you'll regret not pursuing it.

 

I would also keep a close eye on her. OCD can be sneaky, and often times its victims are afraid or ashamed to "tell" their thoughts or fears. Hopefully she doesn't have any though! does she seem to be improving as time goes on?

 

The grimacing of the mouth I saw post Christmas is pretty much gone now. All that is remaining is neck jerking or a slight head rotation. That has been over the last 3 weeks since we cut down the sugar and ramped up our healthy eating habits.

 

I will keep a close eye on it, of course. She just came back home scoring 98% in her weekly math class test. As a first grader in high ability, she added numbers in the thousands in her class test last week. It is mighty hard looking at everything with a cynical eye but I am trying my best to be objective and not jump to conclusions. I get weekly updates from her class teacher regarding her tics and mood too, and so far so good.

[Grateful3]

My daughter "I" 10 years, has been battling eye tics (didn't even know what they were). Since her MMR,Tdap and Hep A immunization boosters this past late March. Only now after a month of seeing an Ophthalmologist to Neurologist to joining a support group have I begun to put the puzzle pieces together. Waiting to consult with a PANS doctor in NorCal after going the traditional PC, then Specialist route...they can't help me at all! Haven't heard of PANS or PANDAS and when I finally got a specialist who was supposed to be a PANS doctor, I drove to LA and end of the day..complete waste of time. He had never even diagnosed a single PANS/PANDAS patient...I am convinced it was due to her immunizations. That was so significant as we were trying to find out why the sudden eye movements. After a month of appointments at the Eye Doctor. I told my daughter there was nothing wrong with her eyes and to just stop the movements! Will regret that forever. She can not help making those movements and she is in constant pain with her eyes because of the tics. One night I just typed in eye movements, and learned about PANS myself! Wow! I can not believe how many children this is affecting and yet, the medical community in NOT recognizing this as a true syndrome! I am here to ask for help and guidance. It feels good to know that many have been here before me. I am reading rowingmom and it could be MY daughter that I am reading about....so scary! I would love to get in touch with people to consult, compare and learn!! Thank you!!