New here

[JudyLV]

Hi,

 

I am new here and searching for information to help my son. I have lots of questions and will probably start some new posts but I wanted to give a little background information. My 12 year old son has always had some "quirky" behavior but it has recently become disruptive for the family.

 

My son had lots of sinus infections when he was very young which required lots of antibiotics and removal of his tonsils and adnoids before he was 2. When he was in 2nd grade he had Lyme disease and was treated with antibiotics. After the initial treatment he had unrelenting nausea and we learned gluten was a trigger for this. He has been gluten free for over 4 years. Over one year ago he developed GI symptoms again and we learned he had increased eosinophils in his blood and colon. We started to work with a nutritionist and learned he had delayed food allergies to dairy, soy, eggs, legumes, nuts (he is also RAST 5 to peanuts), citrus and a few other foods. Once we removed these foods (in addition to gluten) his GI symtoms cleared up. He takes a good multivitamin, probiotics and digestive enzymes. He eats a good diet compared to most kids. It is mostly a whole foods diet with very few processed foods. He got dental braces last May.

 

Over the years he has had some anxiety, obsessive compulsive behaviors and tics. I did not know that some of these things, such as sniffing and blowing on his fingers, were tics until I started to read about them. At night he has always had a series of questions he has to say to either me or my husband before going to bed. This summer this "routine" increased to multiple checking of the doors and temperature and repeating the questions 3 times to each of us, I have to go last. Then some things in his room need to be checked and just right and everyone in the house has to be quiet. He is afraid he will not be able to sleep. So now I must be home at bedtime or he starts to panic. He also does not want his 16 year old sister to have any friends over after 9 pm because they might keep him awake.

 

He has had vocal tics off and on for over the past year and 1/2. They were pretty bad in the spring but they went away over the summer. As soon as we came home from vacation, 2 weeks before school started, they came back. They are quite bad when he comes home from school. He makes a variety of sounds including deep "whoo" when he is excited, a squeaking sound, a nasal clearing and almost a deep purring. I am not sure he is even aware that he is making them so often but has told me he has to make the sound until it "feels right". I have to assume that he does not make them at school because I think someone would have contacted me.

 

I will be going through the Tic trigger checklist over the next couple of weeks. I already think the computer/TV is a trigger. I mentioned to him that we wanted to take him to a therapist who could help with some of his problems since they were disruptive to our family and he became very anxious and refused to go. I am starting with some books instead while doing a search for a therapist. I have convinced our pediatrician to run the strep titers so we will know where we stand with regard to PANDAS.

 

Thanks for making all of the information on this site available. It looks like a very good resource.

 

--Judy

[Cum Passus]

Hi Judy,

 

Welcome, my son was dx at 12 with TS. He had almost no tics before age 12, very little ones that we did not notice as tics. I think you are smart to have the pandas test done. Check into his diet a little deeper, Carolyn posted a good one on hidden MSG today. This could also be because of his age, and for us it seemed nothing helped until he pasted the puberty stage.

 

Good luck,

C.P.

[amy1]

I have just posted some questions on nutrition.

i do think there is an allergy and/or strep link. Also, my daughter asks each night where i'll be in the morning...she also fixates on when i'm going to pick her up somewhere and has some irrational fears, major separation which she has never really had. my neuro is open minded and is doing alot of testing with her blood. the OCD came on right when she had significant tics this spring. the spring prior we had noticed the tics. it's all new to me and i live with the fear of tomorrow...what if it goes back to the way it was, etc.

her triggers i think are caffeine, stressful situations, crowds/new things, group events. i never believed it before but i think that supplements are the way to go as well as providing a secure environment at home. i used to get mad at her for being so anxious and now i have to be a little firm but loving. the neuropsych i saw said that the fears are almost worse than the tics!

[JudyLV]

Thanks C.P. By passing the puberty stage do you mean the "just entering puberty stage"? I read in another post your son is 14 and things have settled down. So hopefully this will not last throughout puberty. Thanks for pointing me to the MSG thread. Since my son can not have eggs, some of the baked goods I make have unflavored gelatin in them. It never would have occurred to me that I was adding MSG to his diet.

 

Thanks Amy. Do you know what type of blood tests your neuro is doing? I am also interested in if there is a possible nutritional deficiency. My son's tics seemed worse in the spring and I am wondering if the seasonal allergies put him over some threshold. He was fine at the beach on vacation this summer and when we returned home it all started again. Someone mentioned that the ragweed was very bothersome this fall so maybe that also had something to do with all of this. We will keep searching because there is a way to help our kids. We just have to find it.

 

--Judy

[Cum Passus]

Hi Judy,

 

I'm not sure what you would call the stage he was/is in. Not to be gross, but when he was 12 he had no pubic hair. The last year and a 1/2 he has become a man in that area. However he still has a cracking voice, and no body odor, no hair under the arm or face. He is very small for his age, and has always been a slow grower.

So I'm a little confused on what stage you would call him.

 

You might want to chart his growth. we did that and he was growing faster during the time of the explosion, and the year to follow.

 

C.P.