Jump to content
ACN Latitudes Forums

can't seem to get answers


Recommended Posts

hello,

 

i am new to latitudes and soooo glad i was told about this site from a friend. my son is now 9 and has had tics since he was 5. it started when he was in kindergarten and his teacher was unable to control him in class. he was sick alot that yr with sore throat,strep infections and ear infections. around christmas his teacher called me while i was at work and told me he was acting up in class and pretty much told me he needed to be checked for ADHD. soooo being the worried parents we were we took him to his pediatrition and they just gave us adderall and sent us on his way. yes it helped with hyperness but made my happy 5yr old a zombie at christmas and it broke my heart. our dr then put him on focolin and we kept him on that until march that yr. then that march we noticed he started having small tics. so his dr told us to take him off the meds so we did and the tics to this day have never gone away. the following year we moved across town and switched schools and decided to keep him back in kindergarten being he didn't have a great yr the yr before. we then were referred to one of the best hospitals in our state that deals with tic disorders and adhd. we were told while we were there after describing how our yr had been that he seemed to have a mild tic disorder that the adhd medicine brought out and that if he wasnt given the meds at that time the tics would have come out anyway. he also has a horrible time going to bed so they did blood work and found his iron level was extremly low and called out a liquid iron supplement he had to take for 3 months. we didn't notice any change in the bedtime issues. this hospital called him out klonipon which seemed to help for about 2 months then the tics came back and were horrible. his tics consist of a throat clearing noise, a head pop like he is saying yes,rolling his eyes. new this yr (past 3 months) popping knuckles, and when walking he hops a lil . these don't all happen at the same time. they always seem to start the same time of yr. he goes months were things are fine then all the sudden he will start back up with the humming/ throat clearing noise then that one stops then the eye rolling begins and so on. the hospital we went to said that being his grades were good and no complaints from teachers over behavior over the last 2 yrs they dont think he had ADHD at all that maybe he just wasn't ready to start kindergarten when we started him the first time. this breaks my heart and i feel sooo bad for him. i don't know what else to do to help him.

however he was recently swabbed for strep throat being he had strep throat 6 times in 1 yr and finally had tonsils out 2 summers ago when he was 7 . it has helped with him not getting sick but i have noticed that when is sick with sore throat the tics get really bad. i was told about PANDAS did some research and got with his pedi. his 5yr brother had strep about 4 wks ago and his tics got really bad at that time and she said that is a sign being someone in the house could have strep and he could start tics from that. she did a throat culture on him and it was negative so she told me he didn't have it.

i am sooo lost and don't know where to turn next. he is scheduled to have his allergies tested this wednesday being dr has seen links in tics and some food allergies.

 

if anyone out there can give me some advice i would love it. i know deep down i am probably looking at tourettes but he has never been diagnosed with that. it is always told to us he has a mild tic disorder. i just want to cry because being a mom you want to fix your child and help them when they are sick or hurting and i just can't. please help me out if you can and if you are from texas and know of any dr's that come highly recommended for tic issues please let me know.

 

thanks

Link to post
Share on other sites

Hi and welcome :)

 

so sorry to hear of yet another child prescribed these strong drugs without the doctors doing sufficient testing to rule out other things, and when so many of these drugs can actually cause many of the worst symptoms...it is a pet peeve of mine as it happened to my son too :angry:

 

but

 

time to move forward and so, given this clear history of strep infections and symptoms intensifying, I would strongly suspect PANDAS

 

the best place for you to get up to date info and advice on this is our PANDAS forum...just copy and paste your post over there and also read the Helpful Threads pinned to the top of that forum for excellent info

http://www.latitudes...hp?showforum=17

Link to post
Share on other sites

just noticed you have already posted on the PANDAS forum so that is good!

 

if you are interested in the treatments that helped my son, click on the link in my signature

 

altho he has Tourette, not PANDAS, there are areas of overlap and the healthy dietary modifications etc are good for all kids with neurological probs IMHO

Link to post
Share on other sites

just noticed you have already posted on the PANDAS forum so that is good!

 

if you are interested in the treatments that helped my son, click on the link in my signature

 

altho he has Tourette, not PANDAS, there are areas of overlap and the healthy dietary modifications etc are good for all kids with neurological probs IMHO

 

 

thank you so much for you help. my question is how do you tell the difference in tourrettes and just a mild tic disorder then if he does have pandas could it have been giving him these symptoms for the past 4yrs. i get so confused on the tourrettes information because i am like well he has had a vocal tic for 4yrs now off and on and if he has no tics for a while when they start back up it is soemthing different. i just have so many questions but never get any good certain answers. i am going to click on you link and check it out.

 

thanks again!!!

Link to post
Share on other sites

Hi

 

altho Tourette tics wax and wane, they never completely go away.

 

when you have a hisotry of strep and noted waxing when there is strep exposure, even if he himself doesnt have the strep symptoms, that is a big rewd flag warning re PANDAS being a very real possibility

 

also, with tourette there is usually a family history of tics

 

mild tic disorders usually are not accompanied by OCD or other behavioral/emotional issues

Link to post
Share on other sites
he also has a horrible time going to bed
wa

 

Do you mean trouble getting to sleep? My son was like that alot, plus tics similar to you're describing. (he's 25 now...this was awhile ago...and, on a hopeful note, he did apparently "outgrow" them during his teen years).

 

Anyhow, this board has great info re: *natural* things to do to decrease tics, etc.

 

If you decide to stay with some pharmaceutical meds....ask about clonidine (catapres = trade name). (note: this is different than klonapen). It works on mild tics, and also makes you kind of sleepy, so giving it at bedtime was great because my son FINALLY could get to sleep easily.

 

i am sooo lost and don't know where to turn next. he is scheduled to have his allergies tested this wednesday being dr has seen links in tics and some food allergies.

 

This is good. (FWIW....removal of all allergens did almost as much to help my son as the clonadine.......unfortunately it was very difficult to avoid all of the allergens.....so eventually we resorted to the drug...). Read all you can here, and know that not all food allergies show up on blood or skin tests. I'm glad to hear your physician is at least looking into that.....

 

{{{{{{{{{hugs}}}}}}}}}} and best wishes!

 

Much good support will be found here :)

Link to post
Share on other sites

I do just want to mention that for some people, clonidine can have horrible side effects and can induce psychosis in susceptible individuals!!!

 

 

my son was put on klonipin at the end of his 1st grade yr and it was fine for about 2 months then the tics got way worse. he still has trouble going to sleep and what i have noticed is that he is trying his best to not do the eye rolling but can't be still to go to bed. he squirms and makes the humming noises at bed time. i tried melatonin which tx childrens hospital told us to try and it worked for a while as well but recently this past yr (2nd grade) started giving him nite mares.

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...