8 yr old boy just diagnosed with tics - new member

[littleDaniel]

I am new to this Forum and just registed today.

 

My son's name is Daniel and he just turned 8 years old 1 month ago. Approximately two weeks ago, a blinking eye and rolling eye tic emerged. Now its become a blinking eyes with a head jerk and he's moving his hands a lot. The rolling eye re-emerges with reading. His tics become more frequent with frustration, anxiety, stress, being tired and he has become extremely photosensitive. He cannot watch tv or go to the movies...the tics become extreme. Also video games make it worst.

 

I took him to the doctor who says it is just transient tics and they should pass in a month. I have trouble believing her.

 

A few other notes: he has many phobias; fear of darkness, spiders, being alone, failure, peeing on himself (so tries to go 3 to 4 times a night even though nothing comes out). He also has trouble sleeping (insomnia) and sleeps about 8 to 8.5 hours a night. I don't think that is enough for a child his age??

 

Just prior to the tics, he was blinking and rubbing his eyes a lot. He told me yesterday that he blinks because he feels something hard and dry behind one of his eyes. He also said that he jerks his head when he swallows.

 

Because we felt that stress appears to be one of the things making the tics occur, we just switched schools to an all English school. He was previously going to an Immersion program (English and Spanish). It appeared to us that the program was too stressful and difficult (because of his tic and his reaction to homework) so we feel this should eventually reduce the stress.

 

Daniel is very active: he plays piano, takes martial arts, and just started little league (per his request). He loves soccer too.

 

A few other things to mention: we just installed a new tile floor..not sure what that would do; he just started baseball and baseball practice in a baseball field; his diet hasn’t been great during the summer (lots of junk food); he just started school; we stopped giving regular multivitamins (because we were too busy);

 

However, the tic is alienating him from other kids and it breaks our heart that he is getting a complex (hiding his face with his hand).

 

We called the doctor again today and requested some blood and urine analysis to try to rule things out. Initially the blood work with be tested for basic allergies (milk, wheat, dust, pollen, etc.), potential lingering strep, and magnesium.

 

Because of this forum, we have elected to try a few things…we have increased his magnesium intake solely through diet (with spinach & halibut), and we are trying to wean him off of dairy products, reduce sugar (no candy) and remove all foods with artificial coloring or flavors. We started this in the last 2-4 days.

 

My wife and I are heartbroken by what we are seeing and are praying and hoping that this does just pass or we find a solution.

I signed up with this forum in hope of finding an answer to his condition and guidance to get there.

 

Please help!!!

[kim]

Welcome littleDaniel,

 

Could you say if the phobia's started at the same time as the tics or were these present before? When you mentioned hand movements, I immediately thought of PANDAs which I'm sure you have read about here. Have you had him close his eyes and stand with his arms straight out in front of him? Do his fingers move in a piano playing fashion? I know that I have read that this is something to look for in strep induced movement disorders, but I don't really remember many PANDAS kids parents commenting on it. Has he been ill recently?

 

Glad you found the forum. Many of us have gone through what you and your wife are now. I'm sure you will find many avenues to explore here!

[littleDaniel]

Welcome littleDaniel,

 

Could you say if the phobia's started at the same time as the tics or were these present before? When you mentioned hand movements, I immediately thought of PANDAs which I'm sure you have read about here. Have you had him close his eyes and stand with his arms straight out in front of him? Do his fingers move in a piano playing fashion? I know that I have read that this is something to look for in strep induced movement disorders, but I don't really remember many PANDAS kids parents commenting on it. Has he been ill recently?

 

Glad you found the forum. Many of us have gone through what you and your wife are now. I'm sure you will find many avenues to explore here!

Hi Kim,

 

He has always had phobias but they have been increasing as he's become older. He had a sore throat in the summer but the doctor's did a throat culture and dismissed the strep possibility. My daughter did have strep throat in the summer.

 

One of the blood tests that will be done is suppose to reveal if he does have strep. We'll find out shortly. Could he have PANDAS even if the blood test returns negative????

 

Thank you for your suggestion on the Pandas fingers test. I'll be sure to try it out today when I get home.

 

Thank you again for the quick reply!

[Caryn]

Little Daniel,

Our son had a similar onset at 3 1/2. We later found out that he is celiac. You can read our story at: http://healthy-family.org/caryn/289

We saw a lot of disturbing tics and OCD-like symptoms at onset. He has been stable and happy for over a year. He had one small setback this fall after getting three freeze pops at school over the course of two days. This gave him a chronic blinking tic for about 1 1/2 weeks. He is now back to himself again. He has no phobias and is doing great socializing at school.

If you have any more questions, let me know. I have to go now and haven't got much time.

Caryn

BTW-- dairy will resolve in 7-10 days, but gluten takes at least a month for improvements to be seen. In our case it was nearly 5 months, but we were also eliminating corn and I was feeding him foods with corn inadvertently in the beginning because I didn't know better.

[lynnie1264]

Hi...

 

My son started having his noticable tics just after he turned 8 in April this year. I can honestly say that they have never been that bad since. He had the neck jerk to the side, a twirl, and a facial grimace... all overwheling to me. however, looking back over the past year or so there were little things that were tics too, but we just didn't put it together.

 

Things like, he would smell his fingers after he touched something {not weird really for a kid}, and he did have a bit of an eye blink, again not obvious enough to worry about.

 

It wasn't til he was playing soccer one day and the head jerk started that it all fell into place. So it seemed at first that it was out of the blue but perhaps it wasn't really. I have started him on magnesium and Kalm Kids... but as I said his tics are mild and are usually brought on by excitement. but I have tried to cut out artificial flavourings and colours, choc etc... but I'm still trying to find a way of helping him. It's overwhelming but there is alot of help here.

 

All the best,

Lyn.

[ilovedogs]

We have a similar story to Lyn's. I think my ds(9) started tics before I really noticed them. He started with eye blinking and eye winking almost a year ago. We have seen other tics since then but the eye tics seem to stick around.

I think you're doing the right thing with the magnesium, etc. I'd add the multivitamin back in and make sure it doesn't have any preservatives or colorings. Try a vitamin B6 tablet, maybe 25 mg to start? We have seen this help quite a bit. My ds had phobias and fears before his tics started. Then after the tics came on he started having more OCD type anxiety. We have found great relief from using a naturopathic doctor and getting him counseling for the anxiety. My ds plays football, tennis, and golf and he is a great kid! We have not done any elimination diets, we just keep things healthy: I buy nitrate free meats, natural sodas, and try to add in lots of fruit and veggies. Many folks here have found dietary changes to be helpful but we have not taken that route yet.

As for the sleeping??? Hmmm, my ds was never much of a lengthy sleeper. He gets about 9 hours a night but he seems happy most days and not tired or overstimulated.

You'll find lots of information here so I hope you stick around and get your questions answered!

B

[CSP]

Welcome L.D.

 

I know it is hard to wait when you are watching your child doing things he normally does not do, but if this all happened 2 weeks ago you do have good reason to be hopeful.

 

I did want to encourage you on the athlete your son seems to be. That is wonderful he has so many things he enjoys. Thse things will help him release and keep him happy.

 

My son is a wonderful athlete too, he is doing wonderful in baseball. His team won a wood bat tournament this summer, and this fall ball season started out so good for him, coach says he has good hands. My son also take a martial arts class and is doing great in that. He did his wrist stretches he learned in the martial arts before he pitched a game 2 weeks ago and threw 6 pitches to get all three outs. He does not play football because his mother (me) thinks he is too small, but a friend told me he has a bullet for an arm throwing the football. He just went to his first high school football game, as he is in 9th grade, and he had a ball. Thought there was 2 thousand people there, and he just ran around with his buddies having the best high school experience.

 

Keep him doing what he loves to do he will be happy and you will be happy for him knowing he is still enjoying his childhood, even if he does twitch a little.

 

Good luck to you and your wife, it can be hard, but everyday with every effort you put towards helping him is a conformation you love him more then yourself.

 

God Bless,

CP

[EAMom]

Hi,

 

I would repeat the strep test and have them do a 72 hour culture if the rapid is neg. I think it is possible he got strep from his sister after he cultured neg. Some kids show no symptoms (other than tics or behavior changes) when they get strep. It wouldn't hurt to get titers too, but you have to take them with a grain of salt. My then 7.5 year old dd had severe PANDAS (anorexia nervosa, ocd, psychotic behavior, tantrums, tics) and her titers were low/normal both times they were drawn (2 and 3 mo. after FEVER/original strep infection in Jan)...but, her 72 hour throat culture was positive 2 mo. after FEVER. In addition, her 5 year old sister was also strep positive (a carrier, no symptoms) when we figured out about PANDAS in March.

 

Some kids don't make a lot of titer when they get a strep infection, but for those that do it can be helpful information, esp. if the culture is no longer postive.

 

IMO, you should also reculture his sister (plus other siblings) as well, to make sure she is neg and not a strep carrier (who could reinfect your son). Some kids (carriers) will still culture positive after a course of antibiotics. This is what happened to my 5 year old...she was still positive after a course of Augmentin. We finally cleared her with azithromycin (but that doesn't work for everyone.)

[littleDaniel]

Hi,

 

I would repeat the strep test and have them do a 72 hour culture if the rapid is neg. I think it is possible he got strep from his sister after he cultured neg. Some kids show no symptoms (other than tics or behavior changes) when they get strep. It wouldn't hurt to get titers too, but you have to take them with a grain of salt. My then 7.5 year old dd had severe PANDAS (anorexia nervosa, ocd, psychotic behavior, tantrums, tics) and her titers were low/normal both times they were drawn (2 and 3 mo. after FEVER/original strep infection in Jan)...but, her 72 hour throat culture was positive 2 mo. after FEVER. In addition, her 5 year old sister was also strep positive (a carrier, no symptoms) when we figured out about PANDAS in March.

 

Some kids don't make a lot of titer when they get a strep infection, but for those that do it can be helpful information, esp. if the culture is no longer postive.

 

IMO, you should also reculture his sister (plus other siblings) as well, to make sure she is neg and not a strep carrier (who could reinfect your son). Some kids (carriers) will still culture positive after a course of antibiotics. This is what happened to my 5 year old...she was still positive after a course of Augmentin. We finally cleared her with azithromycin (but that doesn't work for everyone.)

Thanks,

We are getting the ASO Titers blood test...still waiting for the result. Is the culture more accurate than the blood test? We'll also see if we can get the others tested....sometimes the doctors don't want to test on parents investigative work.

 

Is your daughter OK now??

 

Thanks again.

[kim]

littleDaniel,

 

Buster has some excellent info on titers. Here is one of his posts

 

http://www.latitudes.org/forums/index.php?...amp;#entry25312

 

When you get to this, click on his name and it will give you an option of something like "read members posts." I think you will find it really helpful.

 

You can also use the search box here. Just type in PANDAS and you will get A TON of threads.

 

Please keep us posted!

[littleDaniel]

Hi...

 

My son started having his noticable tics just after he turned 8 in April this year. I can honestly say that they have never been that bad since. He had the neck jerk to the side, a twirl, and a facial grimace... all overwheling to me. however, looking back over the past year or so there were little things that were tics too, but we just didn't put it together.

 

Things like, he would smell his fingers after he touched something {not weird really for a kid}, and he did have a bit of an eye blink, again not obvious enough to worry about.

 

It wasn't til he was playing soccer one day and the head jerk started that it all fell into place. So it seemed at first that it was out of the blue but perhaps it wasn't really. I have started him on magnesium and Kalm Kids... but as I said his tics are mild and are usually brought on by excitement. but I have tried to cut out artificial flavourings and colours, choc etc... but I'm still trying to find a way of helping him. It's overwhelming but there is alot of help here.

 

All the best,

Lyn.

[Hi Lyn,

Your boy sounds a lot like what I am seeing. Have you seen any improvement with the magnesium and Kalm Kids??

Also, it seems as if many of our children are having the same issues after a certain b,day (in our case 8) which makes me wonder if all of this is related to vaccination shots.

 

thanks again for your comments,

Dan

/quote]

[littleDaniel]

We have a similar story to Lyn's. I think my ds(9) started tics before I really noticed them. He started with eye blinking and eye winking almost a year ago. We have seen other tics since then but the eye tics seem to stick around.

I think you're doing the right thing with the magnesium, etc. I'd add the multivitamin back in and make sure it doesn't have any preservatives or colorings. Try a vitamin B6 tablet, maybe 25 mg to start? We have seen this help quite a bit. My ds had phobias and fears before his tics started. Then after the tics came on he started having more OCD type anxiety. We have found great relief from using a naturopathic doctor and getting him counseling for the anxiety. My ds plays football, tennis, and golf and he is a great kid! We have not done any elimination diets, we just keep things healthy: I buy nitrate free meats, natural sodas, and try to add in lots of fruit and veggies. Many folks here have found dietary changes to be helpful but we have not taken that route yet.

As for the sleeping??? Hmmm, my ds was never much of a lengthy sleeper. He gets about 9 hours a night but he seems happy most days and not tired or overstimulated.

You'll find lots of information here so I hope you stick around and get your questions answered!

B

Have you seen any improvement with the B6 and magnesium? Have the tics gone away or diminished? How long has your child had these tics? My son also has a lot of OCD type behavior...he can't stay still for a minute.

Where can I find a naturapathic doctor and are they expensive?

 

thanks again,

D

[littleDaniel]

Welcome L.D.

 

I know it is hard to wait when you are watching your child doing things he normally does not do, but if this all happened 2 weeks ago you do have good reason to be hopeful.

 

I did want to encourage you on the athlete your son seems to be. That is wonderful he has so many things he enjoys. Thse things will help him release and keep him happy.

 

My son is a wonderful athlete too, he is doing wonderful in baseball. His team won a wood bat tournament this summer, and this fall ball season started out so good for him, coach says he has good hands. My son also take a martial arts class and is doing great in that. He did his wrist stretches he learned in the martial arts before he pitched a game 2 weeks ago and threw 6 pitches to get all three outs. He does not play football because his mother (me) thinks he is too small, but a friend told me he has a bullet for an arm throwing the football. He just went to his first high school football game, as he is in 9th grade, and he had a ball. Thought there was 2 thousand people there, and he just ran around with his buddies having the best high school experience.

 

Keep him doing what he loves to do he will be happy and you will be happy for him knowing he is still enjoying his childhood, even if he does twitch a little.

 

Good luck to you and your wife, it can be hard, but everyday with every effort you put towards helping him is a conformation you love him more then yourself.

 

God Bless,

CP

Thank you for your very kind words!!! We were thinking of pulling him out of baseball because all of this is so overwhelming for me and my wife, but after reading your words...we will merely reduce his baseball practice and allow him to do what he enjoys.

 

Thanks again,

D

[littleDaniel]

I would definitely do the cultures, not just titers. Also, it's better to do both titers, ASO and anti-DNase-b, not just ASO.

 

In my dd's case, her titers were low/normal. I don't think the docs (in hospital, eating disorder clinic, stanford) would have thought to do the cultures if we hadn't insisted. She had rare growth on the 72 hour culture. Her sister was positive on the rapid. If we hadn't done the cultures, nobody would have believed that she was PANDAS. Also, if the cultures are positive then you *know* you need antibiotics to erradicate a current strep. infection. If there is no current infection, your doc could consider the use of antibiotics for PANDAS to be contraversial.

 

Cultures aren't 100% accurate but they are pretty good. Titers are less accurate IMO than cultures since a good percentage of kids with strep will not have elevated titers. Check out a post by Buster called "A little bit about titers" (or something like that)...the post is from August 2008 I think. Really, it's best to do both.

 

You don't need elevated titers to get a PANDAS diagnosis but you do want some evidence of a strep infection...and titers can give you that if the culture is neg. Some kids will culture negative a couple weeks after a strep infection (even w/out treatment with antibiotics) since their body will fight off the strep (but they still could be having a PANDAS reaction). Other kids will "carry" the strep for months or years. And "yes" IMO a "strep carrier "can have PANDAS. My dd would probably be considered a "strep carrier". Per Dr. Ed Kaplan (WHO strep expert) ...evidence is mounting that the strep carrier state is not as benign as we once thought it was.

 

By the way, when we wanted to test everyone else in the family (mom, dad, younger sister) for strep b/c of suspected PANDAS in dd there was absulutely no problem, none of the docs gave us a hard time. (But don't be afraid to ask and put your foot down if necessary.)

 

My dd is doing well since we discovered Azithromycin (in June). She is still on it. We're keeping our fingers crossed that she continues to do well. Not all kids do well on antibiotics and some end up needing IVIG. Her eating is back to normal 8 year old eating, no more tics, behavior back to normal, plays with other kids, enjoys school, cheerful...

Thank you for all the info...I will definitely keep this in mind during our search for answers.

 

D

[ilovedogs]

We have a similar story to Lyn's. I think my ds(9) started tics before I really noticed them. He started with eye blinking and eye winking almost a year ago. We have seen other tics since then but the eye tics seem to stick around.

I think you're doing the right thing with the magnesium, etc. I'd add the multivitamin back in and make sure it doesn't have any preservatives or colorings. Try a vitamin B6 tablet, maybe 25 mg to start? We have seen this help quite a bit. My ds had phobias and fears before his tics started. Then after the tics came on he started having more OCD type anxiety. We have found great relief from using a naturopathic doctor and getting him counseling for the anxiety. My ds plays football, tennis, and golf and he is a great kid! We have not done any elimination diets, we just keep things healthy: I buy nitrate free meats, natural sodas, and try to add in lots of fruit and veggies. Many folks here have found dietary changes to be helpful but we have not taken that route yet.

As for the sleeping??? Hmmm, my ds was never much of a lengthy sleeper. He gets about 9 hours a night but he seems happy most days and not tired or overstimulated.

You'll find lots of information here so I hope you stick around and get your questions answered!

B

Have you seen any improvement with the B6 and magnesium? Have the tics gone away or diminished? How long has your child had these tics? My son also has a lot of OCD type behavior...he can't stay still for a minute.

Where can I find a naturapathic doctor and are they expensive?

 

thanks again,

D

Hi there! I see the B6 helping more than the magnesium(we were using the Kids calm at night). We didn't have OCD behavior but had OCD intrusive thoughts. I found our naturopath from a member here that happens to live in my area, but you can look online or ask friends in your area. Yes, the tics are diminished even without cutting out wheat or being super perfect with the diet restrictions. Every once in a while I allow him to eat some HFCS or some nitrated meats and I don't see him reacting at all to them. I think our problems are more allergy related and sensitivities to environmental things as well as vaccinations.