New here 12 yr old daughter with tics?

[sparky]

I have a 12 yr old daughter who will be 13 next month. Since she was around 4 months old she has had what a neurologist diagnosed, when she was 2-3 yr old, as stereotypes. He said these are seen in developmentally dealyed children but sometimes seen in "normal" kids. She has always been very smart child and does not fit the Autistic Spectrum accroding to her ped.

 

The movements are only when she is excited. She can be thinking about something that she likes or anitcipating doing something and she will have the movements.

They mainly involve her hands/wrists where she rotates them back and forth in unison and sometimes will move fingers with it. These are done very rapidly. When she was younger as infant and toddler she would also mover her feet/ankles sometimes while she was moving her hands/wrists if she was sitting down. She would also do this when riding in a vehicle. She will sometimes hold her breath and have a facial grimace and sort of have an intense stare into space momentarily like she is focusing on something.

 

The neuro doc told us she would outgrow this most likely but hasn't. She says she doesn't even realize she is doing it.

 

She has had food allergies since infancy. She had celiac testing and came back negative and she is higly sensitive to Gluten though thru IgG testing.

 

It seems thought that she mainly does this when she is doing something she likes or is tinking of something she likes.

 

I am interested in knowing if any others here have kids with similar history.

 

Thanks

 

Sparky

[CSP]

Welcome sparky,

 

I'm sorry your dd is having to go through this at this age. My son also started ticcing at 12yo. Something you said about the gluten, have you tried a gluten free diet yet? I think even if she does not have CD her brain could be reacting to the gluten in the blood. What you would call a brain allergy from the gluten.

 

I was wondering what diet she is on and what you have tried in the past with what kind of results.

 

Hope to hear from you soon,

cp

[sparky]

Something you said about the gluten, have you tried a gluten free diet yet? I think even if she does not have CD her brain could be reacting to the gluten in the blood. What you would call a brain allergy from the gluten.

was wondering what diet she is on and what you have tried in the past with what kind of results.

Hope to hear from you soon,

 

 

Cp,

 

She was diagnsoed with an eating disorder last year. We had discussed a gluten free diet with her ped and decided against it. SHe has gained a significant amount of weight but still needs to gain more. She is taking an enzyme that helps to break the gluten down per her ped's recommendation.

 

I have been looking into magnesium info here, and I'm convinced she has magnesium deficiency and the mag we've been giving her has mostly been mag oxide which I read was not good at being absorbed. I gave her epsom salt bath last night and started using mag citrate.

I want to try one thing at a time to see what will help. Thanks

[CSP]

sparky,

 

I remember reading a year or two ago that eating disorders cause seratonin levels to drop. I'm foggy on that info, but have you looked into the neurotransmitters and tics? I know some Drs. I have been to think my son's tics are more related to seratonin then dopamine.

 

I have not had good luck giving him 5-htp to help his seratonin so I have no results to share with you.

 

Just a thought,

CP

[sparky]

sparky,

 

I'm foggy on that info, but have you looked into the neurotransmitters and tics? I know some Drs. I have been to think my son's tics are more related to seratonin then dopamine.

 

I have not had good luck giving him 5-htp to help his seratonin so I have no results to share with you.

 

Just a thought,

CP

 

CP,

Yes, you are correct, for anorexia serotonin is a player. For binge eating or bulimia it may be dopamine. She has been on these supplements:

 

IntraKid

NeuroReplete (these are the 5-htps)

Glutenzyme

Super Nu Thera (Kirkman)

Drenamin and Paraplex (Standard Process)

Primadophilus Reuteri (Probiotic, just recently)

Evening Primrose

Cal, Mag (was magnesium oxide but recently switched to the mag citrate)

Inositol (Kirkman)

 

She was on these supplements most of them during school. She had a lot of pills to swallow and thu summer I have lowered the amount significantly. She only takes the Neuros 1/2 dose now instead of full. No IntraKid, 1/2 the SuperNu Thera, taking the probiitcs, glutenzyme, drenamin and paraplex (started again recently) ALl of these are under the supervision of her ped.

 

These are the tests she's had in past year:

 

Celiac negative

Pyroluria positive

histamine -High Histamine

Copper/zinc- higher on copper

Comprehensive Digestive Stool Analysis from Genovia ( no lactobacillus found, some other positive findings)

Salivary Cortisol Test ( very blunted coristol during day, very low (IGA Secretory) Not sure if it was IGA or IGG but related to gut mucosa protection

 

 

She had a theatre production she was in in May and she seemed to be ticcing ( if this is the proper term for her behavior) after I'd pick her up. There were bright lights during practice on stage or could have been mold in bldg. During her performance (she was the lead role) she could prvent the tics, and control them. But when everyone came out at end to bow, I could telll she did it some then. She seemed very wound up in June, new symptoms of tongue sticking out and wiggling from side to side, tapping on counters, tables, beating with hands at table, like she was in constant motion . The tongue and beating/drumming were new, she was revved up.

 

So, I took her off some of the supplements thinking something was revving her and it subsided. But the past several weeks she has been ticcing more. The ped swabbed us all ( in our family) for strep tested in office. My one son came back with positive to NON group A. He is being treated with antibiotics.

 

We are also doing NAET, ( I work for chiropractors), and she keeps checking positive to strep vial x 3 now and not clearing. She also tested postive to serotonin last time.

 

Thanks

[CSP]

sparky,

 

Some of the supps. I have never heard of, so forgive me if this is a stupid question. Are any of these Omega 3s? If not have you tried them and does your dd react well or is it a trigger?

 

My son took a B vit. from Standard Process and he went nuts.

 

When my son was 12yo he exploded with tics. Age 13 and 14yo he was on and off waxing, but more waxing then waning. this past year at 15 has been the best year so far since 12yo. waxing is less. I stopped all supps and just gave him a good diet because I could not see and good results with the supps. He has had a pretty good summer except for a few days leading up to a camping trip. I'm holding my breath for school to start.

 

One other thing did her test results say anything about yeast?

 

Glad to hear you have had a good start to all this.

CP

[Chemar]

But the past several weeks she has been ticcing more. The ped swabbed us all ( in our family) for strep tested in office. My one son came back with positive to NON group A. He is being treated with antibiotics.

 

We are also doing NAET, ( I work for chiropractors), and she keeps checking positive to strep vial x 3 now and not clearing. She also tested postive to serotonin last time.

 

Thanks

 

Hi Sparky

sorry cant post more right now but I did notice the references to strep in your post....have you checked out our PANDAS board as some of what you describe is also seen in kids with PANDAS dx

http://www.latitudes.org/forums/index.php?showforum=17

[sparky]

Hi Sparky

sorry cant post more right now but I did notice the references to strep in your post....have you checked out our PANDAS board as some of what you describe is also seen in kids with PANDAS dx

http://www.latitudes.org/forums/index.php?showforum=17

 

Yes, I came to this board from another member who posted about PANDAS on another forum I am on. I have checked the PANDAS info, thanks.

I have been in touch with Dr. Cunningham and have fwd the info on the study to my ped. I will talk to her about it next week when she sees my d. My ped is very familiar with PANDAS. My d was checked when she was 2-3 to the antibodies as where we live, at the time Dr. Murphy was in our area, and my ped knew about it years ago when it was being studied. Since then, she has been checked twice with negative blood work. My ped feels even though her blood work negative, there may be a good chance she has reacted. She has had many allergies in general all of her life, I know PANDAS is autoimmune.

 

The son that had non group A strep thru throat culture was adopted last year and new in our family when she was diagnosed with the eating disorder copule months later. She had fears of fat, carbs, wt gain, etc.. He did have strep throat after her diagnosis, one time. and had cellulitis several months ago with skin bacteria but didn't get tested for it.

 

I had Group B strep at time of her delivery. This may be a factor for her early onset tic like behavior..not sure. She had a recent stool analysis and strep was found, not group A, and strep can be found in normal. Whether or not her tics are related to all this I don't know. I would like to have her tested thru Cunningham study though.

Glad I found this forum.

[MichaelTampa]

This may sound funny question, but I've been wondering long enough, so I'll ask it. All the discussion of PANDAS I hear relates to children, and quick onset. I am 41 years old and have Tourette's, likely since about age 5. (I was just diagnosed about a year ago, but, the symptoms now being related to Tourette's were definitely there by age 10, but probably more like age 5.) Should I be considering any kind of testing related to PANDAS or Strep? Is that the same or different? Is this a regular medical doctor blood test kind of thing?

 

Thanks,

Michael

[Chemar]

Michael, my husband has had tics/OCD/depression etc all his life. when my son was dx with TS my husband finally found a name for what he had

 

however, he has recently remembered that around age 5 he had severe strep infection sooooooo

who knows the ramifications of that!

 

you would be best to ask on the PANDAS forum as parents there are more clued up on the testing etc.

[lss]

Strep/Tourettes

 

I believe if you contact Dr. Leckman at Yale he will tell you that there are people who are beleived to have tourettes, actually started out with strep/Pandas.

 

Linda

[faith]

sparky,

could I ask what the treatment was for the pyroluria? what amounts of vits was suggested? was there any improvement from that?

 

I'd like to understand a little better your daughter's symptoms. Are you saying she only just started tics at age 12? or has just had excitable movements like the wrist movement you described, mostly? is this like stimming? She is not on the autistic spectrum? but she does have some tics now? sorry, just trying to get the history. Is the anorexia under control now?

 

we have had some discussion on older threads about the strep B that you mention. several of us here have had that positive b strep while pregnant. I wonder if that means anything? but we were treated with antibiotic at the time, so the bacteria wouldn't or couldn't pass to the baby, right? don't know there, but I find it interesting.

 

Have you found anything remarkable regarding the NAET treatments? I had been doing that with my son for 5-6 months without any positive effect on his tics or any of his behaviors. We had not got to the strep yet tho. I'd be interested to know what happens when she clears that.

 

Thanks

Faith

[faith]

Michael,

You could have a blood test that checks the strep titers. I think its callecd ASO titers. I'm sure your doctor could order that for you if you ask about it and that you've read some things re PANDAS and strep being related to tics and ocd and that you want to have your levels checked.

 

Faith

[sparky]

CP,

 

Yes, she has used the Carlson Salmon Oil in past..seems like it made her mentally worse, but will try again.

 

The stool analyssis recently from Genova said no candida yeast but mild to rhodotorula yeast. no parasites.

[sparky]

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