3 year old just started severe head tics, suspected of TS - in need of

[DebbieB]

My name is Debbie. I have two sons, one is 10 and the other is almost 3 and a half. My three year old Justin has a nuerological speech disorder called apraxia, as well as other issues such as hyperactivity and some sensitivity issues like constant biting of the nails, overstimulation in certain atmospheres and impulsivity issues, etc. He has just started a preschool program and special ed program which he has been doing wonderful in.

 

Justin came down with a mild fever this Wednesday and he came home from school shaking his head periodically like he would to say "no" and we first thought this was weird, but thought he was just doing some weird imitation of a cartoon like he has done before.

 

The next day he stayed home with my mother and she noticed more of this. His fever came back later that evening and he fell asleep. He woke up after about an hour and he started to jerk his head upward. Over the next hour, he progressed and did this more frequently and more severly.

 

It started to look like a seizure so I took him that evening to the CT Children's Hospital where they thought he was having mild seizures. They did a CT SCAN on him and it came out normal. The nuerologist was called and they presumed it was a movement disorder in which we are set up for an MRI and EEG sometime in the next week or so.

 

The ticks have now worsened in just a short time to facial, neck, head, shoulders, and what I believe to be stomach ticks. He is laying on the cold kitchen floor with his shirt up. I think what I felt were similar to muscle spasms.

 

I have done so much research and advocating for him when it comes to all of the other disabilities he has. I have worked with him intensely for the last year and a half, but I am extremely scared when it comes to this. This poor kid has so much to deal with and has come so far this year and to have something like this thrown at him where there seems to be so little that can be done seems too cruel. I feel so helpless except to learn as much as I can to help. But from everything that I have read so far in the last 24 hours, it seems like there isn't much that can be done for something like this. Is this right or am I just not knowledgeable enough yet?

 

Any help in understanding this or ways I can help would be greatly appreciated. I don't know what else to do right now except cry. I have honestly never felt so helpless before as a mother.

[Chemar]

Hello Debbie and welcome to Latitudes/ACN

 

I am so sorry to hear of the dramatic onset of your child's tics

 

I cant post very long right now but I want to highly recommend that you start researching PANDAS - Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. and PITANDS-Pediatric Infection-Triggered Autoimmune Neuropsychiatric Disorders

 

there are a number of threads here on the forum about this

 

Some children, when exposed to streptococcal and other bacterial, viral or other microbial infection, can react with a characteristic sudden onset of tics, OCD or other problems

 

This does not just refer to strep throat, although that is always a good point to start checking

 

There is a special blood test done for PANDAS...again the info is in other threads here

 

 

I will be back later but hope that others who have PANDAS/PITANDS info can offer you more advice

 

Cheri

[DebbieB]

Thank you for your input Chemar. The hospital did a rapid and blood test for stept as well as other blood tests, but I will ask for a Panda's test to be done. Thank you for that information.

 

Unfortunately, I do not think this was the first of his ticks, just the first of the tics we noticed. I think the worst of it is that within 24 hours of the hospital, we are seeing a dramatic increase in types of tics, as well as the severity of some of them. This morning I woke up to him whipping his neck back with such force that I am worried he will give himself whiplash or something else. Sometimes these tics throw him off balance and I am now afraid of him going up and down stairs. Anyone of us would have the potential to fall down the stairs if we were constantly whipping our head up and down.

 

I have noticed that he does do more of this when he watches TV. I have turned off all of our TV's off today and I am trying to make a game plan. I read that LCD's are better for tics, but I still need to get more info on this as well as so much more.

 

I haven't read too much about this happening to many three year olds and especially at this degree that it is very upsetting.

 

I thank you for your help and support.

 

Debbie

 

 

Hello Debbie and welcome to Latitudes/ACN

 

I am so sorry to hear of the dramatic onset of your child's tics

 

I cant post very long right now but I want to highly recommend that you start researching PANDAS - Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. and PITANDS-Pediatric Infection-Triggered Autoimmune Neuropsychiatric Disorders

 

there are a number of threads here on the forum about this

 

Some children, when exposed to streptococcal and other bacterial, viral or other microbial infection, can react with a characteristic sudden onset of tics, OCD or other problems

 

This does not just refer to strep throat, although that is always a good point to start checking

 

There is a special blood test done for PANDAS...again the info is in other threads here

 

 

I will be back later but hope that others who have PANDAS/PITANDS info can offer you more advice

 

Cheri

[patty]

Debbie B,

 

So sorry that your son is having trouble with his neck tic. I know it is alarming for a mom to see her child with acute jerky movement.

 

My son had an acute case of head nodding tic about 6 months ago and my ped. and ped. neurologist offered no solution, other than just wait and see.

 

What work for us is acupuncture and chiropractic. Acupuncture to relax his nervous system and chiropractic for headache, neck pain and realign the neck. My son started out 2 sessions a week then tapered off to once a week. I notice a slight decline in tic after the 1st session. I am currently looking into accupressure, becuz my son developed a fear for needle after 7 sessions of acupuncture and from having many blood tests.

 

In the meantime, try giving him Epsom Salt Bath Daily for 20 minutes ( 2 cup for a tub of water ). Someone on this board also do Epsom Salt foot soak in addition to the daily bath. You may also consider giving him a 2:1 of Calcium & Magnesium appropriate to his age.

 

Since your son tics more while watching TV, he may be sensitive to radiation. If he uses a computer, make sure that it is an LCD screen to avoid flickering. No TV viewing is a good start. My son also tic more while watching TV, so we switch to LCD screen, stop using the mircowave, switch from cordless phone to good old fashioned cord phone and no cell phone.

 

Does your son have any food or environmental allergies? If so, eliminating those offending food would be a good idea, along with artificial food coloring, perservatives, flavor and MSG, as they have neurological effect. I know it sounds overwhelming, but when you are ready to do it, I can offer some tips and advice. I cried when I find out how many food my son is sensitive to because wheat & dairy is in everything.

 

As for environment allergy, you can take simple measures like using a mattress & pillow cover, removing stuff animals on bed, eliminating carpet if possible and keeping the room clutter-free to reduce dust. And of course a good air purifier.

 

Please let me know if i can be of further help. I, like you is still finding ways to help my son. It is a process but I believe we will get there.

 

Patty

[Chemar]

Hi Debbie

 

a PANDAS dx doesnt only come for kids with newly developed tics...it can also be the cause of an explosion of tics and/or OCD in kids who already have a TS or transient tic dx

The fact that you child is so young, and that you reported a fever prior to the escalation of tics, just truly makes me wonder if their is not an infective agent causing this.

 

In order to fully rule out strep as the cause, you should have a blood test to assess elevated streptococcal antibodies (Anti-DNAse B and Antistreptolysin titers (ASO)

Be sure to include a throat culture of group A B-hemolytic strep. Ask that the specimen be cultured, not just the rapid test.

 

re PITANDS

Quoting from a recent post from Ronna, who knows waaaaay more about PANDAS & PITANDS than I do

"PANDAS" is an acronym for "Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections." Another acronym that appears less frequently in the literature is PITANDS (Pediatric Infection-Triggered Autoimmune Neuropsychiatric Disorders). The terms "PANDAS" and "PITANDS" may not be not wholly interchangeable. A. J. Allen, MD, distinguishes between PANDAS and PITANDS, where PITANDS includes triggering by bacterial or viral infection. In his usage, PANDAS would be a subset of PITANDS [personal communication, November 25, 2000]. While research has focused on bacterial infections, there are clinical reports of viral infections also being associated with acute onset or dramatic exacerbation of OCD or Tourette's Syndrome [see, for example, Budman et al., 1997].

 

 

If you start reading thru threads here you will find so much info on what can be dont to help people with tics, whether Tourette Syndrome or any other tic disorder

 

here is what we did to help my son

http://www.latitudes.org/forums/index.php?showtopic=687

 

Claire has some comprehensive excellent threads too accumulated info from out members on the things that have worked for them, and also on the tests that can be dont for all the warious issues that may underly the tics

 

Just keep reading here and ask questions as you go....we have a very varied member base with lots of experience in many different areas

 

It is good that you are here Debbie........it's very hard when one is trying to deal with this alone and having a support group is really important. We are always here for you

 

Cheri

[kim]

Debbie,

 

I was wondering if you could answer a couple of questions?

 

Did your son exhibit any neurological issues at birth? Did he meet milestones such as rolling over, on time?

 

Was there a point where you would say he "regressed?"

 

Did your son have a lot of antibiotic use as an infant/toddler?

 

Also, is he taking any medications currently? (for hyperactivity or anything else)

 

In addition to the excellent advice others have offered, I would just like to add, that while this new development must be VERY upsetting, it just may be, that as you find some answers to help manage the tics, you may notice improvements in the other areas too.

 

While neither of my son's had apraxia, my oldest son did confuse pronouns at an early age. For instance he might say "are you going with he?" He also had trouble with L's and R's, and fine motor skills were off (preschool...cutting, pasting etc.)

 

For others that may not be familiar with apraxia;

 

http://home.ica.net/~fred/anch10-5.htm

 

Apraxia is a motor disorder in which volitional or voluntary movement is impaired without muscle weakness. The ability to select and sequence movements is impaired. Oral apraxia affects one ability to move the muscles of the mouth for non-speech purposes. Someone with oral apraxia would have trouble coughing, swallowing, wiggling their tongue or blowing a kiss when asked to do so. Verbal apraxia, or apraxia of speech is an impairment in the sequencing of speech sounds.

 

Apraxia is different from dysarthria in that there is no muscle weakness. The errors heard in dysarthric speech and usually consistent and predictable, while errors in apraxic speech are unpredictable. Apraxic speakers "grope" for the correct word; they may make several attempts at a word before they get it right.

 

Acquired Apraxia

 

Apraxia that happens as a result of a incident causing brain damage is said to be "acquired". This can result from stroke, head injury, brain tumours, toxins, or infections. It can so severe that the individual is unable to initiate speech or so mild that an individual only has occasional difficulties in conversation pronouncing multi-syllabic words.

[Andy]

My oldest had severe tics and what worked best was the following:

1. Was tested for delayed food allergies and then placed on a restrictive diet.

2. Was tested for yeast overgrowth and was given supplements to deal with it.

3. Was tested for vitamin and mineral decifits and was given the vitamins and minerals needed based upon

his weight.

4. Was tested for toxic heavy metals and has gone thru chelation.

 

We were told that our then pre-school son would at best be in Special Ed and may need home schooling by conventional doctors.

4 YEARS LATER, He is currently in the gifted class in his school district.

All treatments were based upon medical procedures. However, the procedures were not mainstreamed services at the time. Since then quite a few have been given insurance approval.

[Chemar]

Hi Andy

 

how good to see you here again and with such encouraging updates!!

Isnt it wonderful when all the research and careful attention to improving health optimally pays off!

 

[DebbieB]

Hi Kim,

 

I dont think he exibited any nuerological issues at birth, but I have always been concerned with the medications I was on during my pregnancy. I had extreme vomitting from heartburn so they gave me reglan. At about 27/28 weeks, I was in preterm labor two times in one week. The first two meds were the routine meds and they didn't work so they used Nifedipine to stop my labor and continued with it for 2 1/2 months until I had my son at 37 weeks.

 

Most of his milestones seemed on time except things to do with talking. I would say that he may have regressed at about 1 1/2 yrs old. He had tubes at 13 months due to constant ear infections which wouldn't go away with medication. I think the ear infections were the only antibiotic use really.

 

No meds now, ear infection few wks ago amoxicillan given ok after that.

 

He's never gotten meds for hyperactivity, etc.

 

I am going to look more into the pandas, and especially the pitands. His fever has been on and off (which was only 100.8 at the highest) and it has become a cold with a cough. He has been checked three days in a row for this cold. He is extremely tired which is never the case with him. He is telling us that his eyes, his stomach, his neck all hurt. (at different times) He talks about going to sleep a lot. I am wondering about mono or maybe something else. I am going to talk to the doc tomorrow.

 

Just for the record, my son has verbal apraxia which was diagnosed by his therapist almost immediately.

 

Thank you Kim and everyone else who has responded.

 

Debbie

 

 

Thank you Patty, Chemar and Andy,

 

I have read all of your recommendations and post and these will be looked into if they haven't already. I have always wanted to know where and how to go about having him tested for allergies and sensitivities. Do you go to a regualr doctor or is it the type of doctor that is into alternative medicine? Is this ever covered by insurance? And does it require giving him a needle for each item? That is out of the question for now. He panics over needles and doesn[t

 

 

 

 

Debbie B,

 

So sorry that your son is having trouble with his neck tic. I know it is alarming for a mom to see her child with acute jerky movement.

 

My son had an acute case of head nodding tic about 6 months ago and my ped. and ped. neurologist offered no solution, other than just wait and see.

 

What work for us is acupuncture and chiropractic. Acupuncture to relax his nervous system and chiropractic for headache, neck pain and realign the neck. My son started out 2 sessions a week then tapered off to once a week. I notice a slight decline in tic after the 1st session. I am currently looking into accupressure, becuz my son developed a fear for needle after 7 sessions of acupuncture and from having many blood tests.

 

In the meantime, try giving him Epsom Salt Bath Daily for 20 minutes ( 2 cup for a tub of water ). Someone on this board also do Epsom Salt foot soak in addition to the daily bath. You may also consider giving him a 2:1 of Calcium & Magnesium appropriate to his age.

 

Since your son tics more while watching TV, he may be sensitive to radiation. If he uses a computer, make sure that it is an LCD screen to avoid flickering. No TV viewing is a good start. My son also tic more while watching TV, so we switch to LCD screen, stop using the mircowave, switch from cordless phone to good old fashioned cord phone and no cell phone.

 

Does your son have any food or environmental allergies? If so, eliminating those offending food would be a good idea, along with artificial food coloring, perservatives, flavor and MSG, as they have neurological effect. I know it sounds overwhelming, but when you are ready to do it, I can offer some tips and advice. I cried when I find out how many food my son is sensitive to because wheat & dairy is in everything.

 

As for environment allergy, you can take simple measures like using a mattress & pillow cover, removing stuff animals on bed, eliminating carpet if possible and keeping the room clutter-free to reduce dust. And of course a good air purifier.

 

Please let me know if i can be of further help. I, like you is still finding ways to help my son. It is a process but I believe we will get there.

 

Patty

 

 

Thank you Patty, Chemar and Andy,

 

I have read all of your recommendations and post and these will be looked into if they haven't already. I have always wanted to know where and how to go about having him tested for allergies and sensitivities. Do you go to a regualr doctor or is it the type of doctor that is into alternative medicine? Is this ever covered by insurance? And does it require giving him a needle for each item? That is out of the question for now. He panics over needles and doesn' sit still for anything like that.

 

Debbie

 

Oh and by the way, I noticed something different tonight. I know that many tics stop when they are really focussed on something, but would that include crying? My son's tics completely went away when he was crying. Weird.

[Sunshine]

Hi Debbie,

 

I couldn'thelp but notice that, although your son is sick now, he was also sick a few weeks ago.

 

You wrote, "No meds now, ear infection few wks ago amoxicillan given ok after that."

 

I can't help but wonder if the antibiotics contributed to a yeast issue. Yeast overgrowth seems to cause tics in many children. Did you use probiotics with the antibiotics??

 

Perhaps now that your son is sick again, his immune system is weak and the yeast is flourishing. It might be worth investigating, in addition to other possibilities.

 

Sunshine

[DebbieB]

Hi Sunshine,

 

That is a very interesting point. I don't knowanything about yeast growths and what they cause or may cause. My son's tics are better than they were, but I don't what the reason for that is. i don't know if it is because he has PITANDS and the tics are slowing down or if it is because we have kept all tvs off since Sunday morning, or some other reason.

 

We have a nuerology appointment at the children's hospital on Monday and he had an EEG done on Tuesday. Hopefully these can shed some light on the issue.

 

Thanks again for everyone's help.

 

 

 

 

Hi Debbie,

 

I couldn'thelp but notice that, although your son is sick now, he was also sick a few weeks ago.

 

You wrote, "No meds now, ear infection few wks ago amoxicillan given ok after that."

 

I can't help but wonder if the antibiotics contributed to a yeast issue. Yeast overgrowth seems to cause tics in many children. Did you use probiotics with the antibiotics??

 

Perhaps now that your son is sick again, his immune system is weak and the yeast is flourishing. It might be worth investigating, in addition to other possibilities.

 

Sunshine

[Chemar]

Debbie

the yeast overgrowth in the gastro-intestinal tract that Sunshine is referring to is Candida albicans (similar to thrush, and vaginal yeast infections)

 

if you do a search here for candida you will find much info

 

as this is a parasite, it produces toxins in the body and also robs the body of nutrients

 

many people have candida overgrowth, and certainly we have much anecdotal evidence here for it contributing to tics, OCD etc etc

 

One of the prime causes of candida infection is antibiotics, which deplete the gut of its good flora (ie probiotics) and so allow the yeast to overgrow

[patty]

Debbie B,

 

Our Naturopath doctor recommended 3 tests; food sensitivity (blood test), Comprehensive stool anaysis and heavy metal test.

 

There are quit a bit of references on this board on where to get various tests.

 

Patty

[kim]

Debbie,

 

Please read this article. It gives so much information on the immune system, especially as it pertains to younger children. Even if you think that vaccines had nothing to do with your son's condition, there is so much information on the immune system and gut flora etc. that can be learned from reading vaccine research. I think this also has information on why vaccines should NEVER be given close to the time an antibiotic was taken. Since your son is so young, you will need to become as informed as possible regarding vaccines anyway, as you have more decisions ahead.

 

http://www.whale.to/m/butler14.html#DIFFER...N_OR_COW’S_MILK

 

hmmm. Just checked that link, it works fine, but not when I try to click on it from this site. This is another paper that is similiar

 

http://72.14.205.104/search?q=cache:MkNJmE...11&ie=UTF-8

 

You might want to go back to your Pediatrician, and ask to have your son's lead levels checked, and just mention that you would like his zinc and copper levels checked too. If they say that they can't check copper, tell them just to do zinc then. I doubt they will give you any problem with at least those two (zinc and lead). Request a copy of any labs that are done on your son, and keep them. If you use the search box at the bottom left of the first page (just type in Zinc or zinc/copper), you should bring up threads on why this might be important. It appears that many of our kids are low in zinc.

 

If you are interested in the PITANDS/PANDAS connection, it's important to get some basic knowledge of the immune system.

 

Again, with your son's age, I'm so glad that you are doing your own reseach now. It appears the younger you get started, the better, in many cases.

 

Please keep us updated on how he's doing.

[DebbieB]

Thank you everyone for you help and support. We are going to the neurologist this morning and I am hoping he has some answers. My son's tics have subsided about 80% or so. In addition, I will be doing what I can about the questions of yeast, metals, and food sensitivty.

 

Debbie