New here, onset of tics in daughter

[LisaM]

I am new here and have found some very interesting information here. My 4 year old daughter began having a shoulder shrugging tic and then an eye blinking tic at the end of March. Her little brother had strep at the time (she did not have the common symptoms at that time so we didn't bring her in with him). When the eye blinking didn't go away after a few days we brought her in to our pediatrician who did run a bunch of blood tests including an ASO titer which came back as normal (below 200). We went to a pediatric neurologist, who, although very nice, didn't help much saying we just have to wait and see. He did tell us though that perhaps she is predisposed to tics or Tourette's and something triggered it, like strep, or stress/anxiety or even a medicine. We had been giving her benadryl at night for a cold. He did also notice a puckering she was doing with her lips and asked how long that had been around (a while) that could have been a tic that has been around for a while and didn't know it.

 

She had a very minor sore throat last week and I brought her in right away for a strep test (whereas otherwise I probably wouldn't have but since reading about PANDAS/tics etc. I did) and she was positive and just finished her antibiotics.

 

I have so many questions I really don't know where to start. The fact that she tested positive for a minor sore throat that she really mentioned in passing to me makes me worry that I have missed strep in the past. She does not have any of the common OCD characterictics as I know them, but she does have many of the other symptoms that Susan Swedo lists in her description of PANDAS - so I am thinking I should definitely explore this possibility. We live in the Chicago area.

 

Any advice or opinions would be very much appreciated.

 

Lisa

[Caryn]

Lisa,

I also have a 4 year old with onset of tics last January, and we live in the Chicago area too. So much in common! I really can't comment too much on the Pandas, but there are so many others out there that can. We did a titer test on our son after he complained of a sore throat and the test came back normal. Then I got strep throat two weeks later. It is always in the back of my mind, but I don't know that much about Pandas. Right now my son is doing great (five months after onset.) We took the Alcat test for allergies and began a strict elimination diet that really seems to be working. Who is your doctor? Mine hadn't ever even heard of Pandas.

Caryn

[LisaM]

Lisa,

I also have a 4 year old with onset of tics last January, and we live in the Chicago area too. So much in common! I really can't comment too much on the Pandas, but there are so many others out there that can. We did a titer test on our son after he complained of a sore throat and the test came back normal. Then I got strep throat two weeks later. It is always in the back of my mind, but I don't know that much about Pandas. Right now my son is doing great (five months after onset.) We took the Alcat test for allergies and began a strict elimination diet that really seems to be working. Who is your doctor? Mine hadn't ever even heard of Pandas.

Caryn

Hi Caryn,

 

I thought about seeing an allergist and I read some of your earlier entries and will definitely do it now. I will have to read up on the Alcat test and the others as I have never heard of them before. Did you bring your son to an allergist? You also mentioned vitamins. What do you give him and what doses and where did you learn about them?

Lisa

[Caryn]

Lisa,

We did not visit an allergist. I contacted all the allergists in our group (BCBS) and none of them worked with TS symptoms. We have to be frugal with our choices as we pay for our own insurance and the coverage isn't all that great. I read this and other forums and asked a lot of questions. I got in contact with another mother who told me about the Alcat and how successful it was for her. Armed with this info I went to a naturopath to see if she would assist us in having our son tested for sensitivities. The appointment proved a disaster when we discovered she had never worked with any patients who suffered from TS! (Contrary to what we were told over the phone). She wanted to put him on a blood-type diet and do a liver cleanse. We opted not to do the cleanse right away, as we were leaving for a vacation and it would probably make him feel not so great. We started the diet but saw no improvement over our initial efforts. Frustrated, I just called Alcat directly and they helped me out. They called my pediatrician to write a prescription, but he refused. Then they called my chiro and he said no problem. With a prescrip the insurance covered part of the cost. You can order the test yourself without a prescrip. The test is very pricey. We had the results back in 10 days. When we got them back we learned that five of the foods on his "highly beneficial list" for his bloodtype diet were actually reactive. We eliminated them and his ticks waned. My concern right now is how do I get him back on a more normal diet without setting off the ticks again. This elimination period is supposed to last three months for mildly reactive foods and six months for highly reactive foods. Now I'm in limbo, trying to figure out what to do next. From what I am learning it sounds like I need to do some sort of treatment to heal my son's immune system and supplements to keep him functioning so that the tics don't reappear in another six months time. Read a lot of Claire's posts. I have found them very informative. I am desperately trying to find doctors that we can work with long-term. Let me know if you find one that is really good. I did look up the Pfieffer Treatment Center that Claire mentioned in one of her posts. It is in Wheaton. They do free seminars on Weds nights and I have made reservations for a talk and have mentioned we want to learn about TS. We are going on the 16th. The center has not had a lot of success treating TS compared to other diseases, however, they have a lot of insight on the different causes and treatment options.

Caryn

p.s. we are using Bontech vitamins. They worked great to reduce tics in the beginning. We have greatly reduced dosage since the tics waned. They have improved our son's overall mood in addition to tics. He is much calmer with vits.

[LisaM]

Lisa,

We did not visit an allergist. I contacted all the allergists in our group (BCBS) and none of them worked with TS symptoms. We have to be frugal with our choices as we pay for our own insurance and the coverage isn't all that great. I read this and other forums and asked a lot of questions. I got in contact with another mother who told me about the Alcat and how successful it was for her. Armed with this info I went to a naturopath to see if she would assist us in having our son tested for sensitivities. The appointment proved a disaster when we discovered she had never worked with any patients who suffered from TS! (Contrary to what we were told over the phone). She wanted to put him on a blood-type diet and do a liver cleanse. We opted not to do the cleanse right away, as we were leaving for a vacation and it would probably make him feel not so great. We started the diet but saw no improvement over our initial efforts. Frustrated, I just called Alcat directly and they helped me out. They called my pediatrician to write a prescription, but he refused. Then they called my chiro and he said no problem. With a prescrip the insurance covered part of the cost. You can order the test yourself without a prescrip. The test is very pricey. We had the results back in 10 days. When we got them back we learned that five of the foods on his "highly beneficial list" for his bloodtype diet were actually reactive. We eliminated them and his ticks waned. My concern right now is how do I get him back on a more normal diet without setting off the ticks again. This elimination period is supposed to last three months for mildly reactive foods and six months for highly reactive foods. Now I'm in limbo, trying to figure out what to do next. From what I am learning it sounds like I need to do some sort of treatment to heal my son's immune system and supplements to keep him functioning so that the tics don't reappear in another six months time. Read a lot of Claire's posts. I have found them very informative. I am desperately trying to find doctors that we can work with long-term. Let me know if you find one that is really good. I did look up the Pfieffer Treatment Center that Claire mentioned in one of her posts. It is in Wheaton. They do free seminars on Weds nights and I have made reservations for a talk and have mentioned we want to learn about TS. We are going on the 16th. The center has not had a lot of success treating TS compared to other diseases, however, they have a lot of insight on the different causes and treatment options.

Caryn

p.s. we are using Bontech vitamins. They worked great to reduce tics in the beginning. We have greatly reduced dosage since the tics waned. They have improved our son's overall mood in addition to tics. He is much calmer with vits.

Caryn,

I do have a name of an allergist that my friend has taken her children to for food allergies - not knowing what the Alcat is exactly - is it a blood test? - couldn't this doc do it for us? I will have to look into the Pfieffer center. Did you happen to order the book that is listed on this site? the Tic and Tourette's book? Where did you hear of your vitamins and where do you get them? Do you use a fish oil?

Lisa

[Chemar]

welcome to Latitudes, Lisa

 

from what you are describing I would certainly say that it is worth having comprehensive PANDAS blood testing done

it has been reported that all the supplements and diet modifications will work so much better once the underlying issue of the strep antibodies is addressed, so if there is a chance that your child does have high strep titres (which can be the case even if throat swabs are neg) then that needs to be the primary focus for everything else to be optimal

[Mustang Carole]

HI,

Check your messages.

M.C.

[LisaM]

welcome to Latitudes, Lisa

 

from what you are describing I would certainly say that it is worth having comprehensive PANDAS blood testing done

it has been reported that all the supplements and diet modifications will work so much better once the underlying issue of the strep antibodies is addressed, so if there is a chance that your child does have high strep titres (which can be the case even if throat swabs are neg) then that needs to be the primary focus for everything else to be optimal

 

Chemar,

What exactly is comprehensive PANDAS blood testing (another ASO titer and the second type of titer?) and how often do I have it done and who does it? Can someone other than a pediatrician do it like a Naturopath? What is a DAN doctor?

 

Lisa

[faith]

Hello Lisa M and welcome.

I believe you already had the testing for the PANDAS. You mentioned you had blood tests done for ASO titer. That is it. If you say it was below 200, then that is considered normal, I believe. We had that doen for my son too, just to rule out. If you already had that done, I wouldn't get too stuck on that aspect, although just watch for any exacerbations when she is ill, especially with sore throat.

 

As far as vitamins and supplements, you will have to read alot. I will tell you that the first supplements most try are the magnesium and many here like the Kid's Calm. I would slowly introduce any others, like B vits, which are good for nerve health, and fish oil (or flax oil) which is supposed to help with inflamation. Those are the ones that naturo's will give first, although supplementation is usually tailored to an individual's unique case.

 

With dietary restrictions, the obvious is to cut out as much as you can artificial foods. Forget the processed foods for now and stick to whole foods. Try to cut out one group every week or two to see if it has any beneficial effect. Use your intuition for this. You think milk is a problem? Then cut out dairy for a while. I'd start with that. And then all obvious fake sugars, like aspartame, and especially high fructos corn syrup. This requires alot of reading of labels. It may be expensive to buy from the health food store, but then you WON'T be buying the junk either, so there's some savings there.

 

It will take a lot of reading, and alot of questions. Everyone here wants to help each other, so ask anything you like.

 

Good Luck

Faith

[Cum Passus]

Hi Lisa,

 

I wanted to welcome you. I don't have much to add that hasn't already been said, other then my son also tested very low for the PANDAS titers test.

 

The only thing that I can add is my son's Dr. said it seemed to her (from his lab work) his body was fighting off some kind of virus or something. I guess it could be from the shots he had in 2005. I did think it was PANDAS for a while. My husband has Ts so your post is the only one I have read where a Dr. said the child could have had Ts triggered by strep. Thanks for sharing that. Keeps giving me something to think about.

 

C.P.

[Caryn]

C.P.

Could you elaborate on this?

"The only thing that I can add is my son's Dr. said it seemed to her (from his lab work) his body was fighting off some kind of virus or something. I guess it could be from the shots he had in 2005."

 

My son also had the titer test for strep antibodies and I was told they came back normal. I don't know how to read the report and I never asked the doctor what his number was exactly, but I think it was 100 (I have it right in front of me). My mom works as a med. recs. tech and when I got the report back on the CBC I showed her and she said that everything looked good, but something in the blood test showed he was fighting off some kind of infection. (Which the doc. never meantioned to me). He had gotten a Comvax shot and also Varicella in October for preschool. Symptoms of TS began just after Christmas, but if I really think about it, he was sniffing a lot during the holidays and didn't appear to have congestion or a runny nose. My pediatrician really didn't guide us well at all throughout this, only to send us to his recommended ped. neur. He had never even heard of Pandas. My son does not have all his vaccines yet. I have been postponing MMR. The naturopath said I shouldn't vaccinate him anymore. What do you think?

[Cum Passus]

Hi Caryn,

 

WOW, I'm so glad someone else has hear that line.

 

My son's Intergrative Dr. took blood, hair and urine tests. when she was going over the tests she made that comment. She said she might want to test vaccine titers. She seem to think his body was not distributating the vaccines through the body the way most kids do. I was so confused and overwelmed with all the tests in front of me, and it made me think the shots really had an effect on his system.

 

He was given his shots in oct 2005 and by Thanksgiving his body was out of control. A week later he was yelling. Shortly after the shots I had his picture taken with his sisters and he looks yellow in the photo. His older sister had the shots on the same day, she is fine.

 

I never knew my son had anything wrong before he exploded. Now when i look back some of the things he did were tics I just thought they were boy stuff.

 

I agree do NOT give him any shots,

 

My son's PANDAS titers came back 6 and less then 60 for the other, but I don't have those tests, Dr just told me.

 

i would love to talk to you more about this, I have to take him to Baseball now.

 

C.P.

 

C.P.

[LisaM]

This is all becoming very overwhelming to me. My daughter is due for her 5 year old pre kindergarten check up and shots soon. We have always had faith in the "regular" medical system. That was all we knew really. As I said in my very first post, my daughter may have had the puckering tic for a while now. I could never place it with a vaccine or flu shot necessarily.

 

I took my daughter to an allergist today. She had scratch tests for many out door and indoor allergies as well as the top 5 food allergies and all came back negative. I still don't know what the Alcat test is.

 

C.P what did you mean by regular boy things? My son screams alot too.

 

Caryn, is your naturopath in chicago?

[Cum Passus]

Lisa,

 

My son would play loud, and was the clown out of my three children. (other two are girls) He plays very competively so you can hear him on the field yelling out comands. We use to think he was taking charge of the game, telling the out field how many outs, or where the next play should be. Now I believe that is his way of covering up his vocal tics. Making them sound like normal. My husband has Ts too and he talks very loud, he also covers up his vocal tics. He did it so well for 15 years of marrage I had no idea he had tics.

 

I think when my son turned 12 he no longer could control or cover up the tics like in the past.

 

I believe because my son's TS was passed down, the shot really did a number on him.

 

C.P.

[LisaM]

Lisa,

 

My son would play loud, and was the clown out of my three children. (other two are girls) He plays very competively so you can hear him on the field yelling out comands. We use to think he was taking charge of the game, telling the out field how many outs, or where the next play should be. Now I believe that is his way of covering up his vocal tics. Making them sound like normal. My husband has Ts too and he talks very loud, he also covers up his vocal tics. He did it so well for 15 years of marrage I had no idea he had tics.

 

I think when my son turned 12 he no longer could control or cover up the tics like in the past.

 

I believe because my son's TS was passed down, the shot really did a number on him.

 

C.P.

 

C.P.

 

What shot exactly are you talking about? How old was he when he got it? Or are you talking about all of his vaccines?

Lisa