Knock Knock?

[faith]

Hi all,

just wondering how everyone is doing these days. this board is kind of lagging. wondering if everyone is just well enough, or that we've talked about topics til blue in the face and are all petered out?

 

or maybe most of us have enough knowledge to get us by?

 

or new posters don't post much because it looks like there isn't enough company?

 

just curious. miss all you guys. I'm confused as the rest, and looking into other things as well, but I'm glad to help if anyone needs it.

 

Blessings,

Faith

[Chemar]

things usually slow down as well here over the holidays

 

I have also heard from some newbies who get confused at being PMd to check into the PANDAS forum as soon as they post here, so hopefully we will be able to see a balance of providing the info needed so that new parents can check into the very real possibility of PANDAS, while not making them feel that is the only possible dx and so causing them to miss out on also learning about the other potential tic triggers and treatments

 

 

 

hope things are going well for your family, Faith

 

my son is doing really great since having a troublesome wisdom tooth pulled. Both tics and OCD are very subdued which is great as Dec/Jan has always been a waxing time for him. He recently had his 20th birthday so hopefully he is also now entering into the post teen waning that many people with TS seem to experience

[Fixit]

things usually slow down as well here over the holidays

 

I have also heard from some newbies who get confused at being PMd to check into the PANDAS forum as soon as they post here, so hopefully we will be able to see a balance of providing the info needed so that new parents can check into the very real possibility of PANDAS, while not making them feel that is the only possible dx and so causing them to miss out on also learning about the other potential tic triggers and treatments

 

 

 

hope things are going well for your family, Faith

 

my son is doing really great since having a troublesome wisdom tooth pulled. Both tics and OCD are very subdued which is great as Dec/Jan has always been a waxing time for him. He recently had his 20th birthday so hopefully he is also now entering into the post teen waning that many people with TS seem to experience

[Chemar]

Hi Fixit

not sure if you meant to post a reply but all that came thru was a quote of my post?

[Fixit]

my son is doing really great since having a troublesome wisdom tooth pulled. Both tics and OCD are very subdued which is great as Dec/Jan has always been a waxing time for him. He recently had his 20th birthday so hopefully he is also now entering into the post teen waning that many people with TS seem to experience

 

I don't know if i can make it to 20 ds is 9 to be 10 soon........

well we were in a calm but the the last 5 days he started with nose air and a ch ch.....and just now it sounds like he's going to hock up a loogy...gas typiing could sound a little gruntish

2 days before this he almost no tics at all

12/21 went to see dr G almost didn't want to go because things were ok...and he wouldn't tic for the first 20-25 minutes when he woke...well that evening a ramp up but on 22, and 23 virtually nothing...now he was not in sight alot but we needed to eat and run errands and i had to hyper focus on him to find something maybe 2 times..so i thought we made it, and he has never tried to surpess his tics..

mind you at his cousins house on the evening of the 21st ,those days he only ate cookies, pop tarts, candy i let him be a total kid.

 

-so it coud be diet

-change of weather from ga to va and snow

-they had real dyeing Christmas tree with cats and dogs

-could it be the adjustment

-staying up late

-could he be catching an actual throat thing,but seems more ticcish

 

SO i ask the above questions and

was it l-caratine for vocals?

scared to ask because i think vocals the worst tic you could have, how long do they last, when do they subside?

 

do most peope with tics get a vocal at some point?

 

at what point do you do meds????????? I HATE THIS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

i hope this will be in another day of so...he can morph in hours...this is one f?up condition

I will wait a few weeks before the vocals make he and I crazy

I still think this is all triggered by 15 or so cases of strep he's had that make him subseptible

 

which med is the less of all evils

tenex , intruve or what ever, cholodine, topomax....something i haven't heard of........which would be best for vocals?

[Fixit]

one more thing i heard him and so did a relative, in the middle of the night with the throat thing

oh he is also doing rasberries sounc

[ilovedogs]

Hi Faith! We're doing Ok but ds just started a shoulder shrugging tic and I'm tired of trying to figure out why b/c I'm caught up in my own medical issue right now. As a matter of fact, I could use some prayer as I'm going to a specialist in the morning and I'm hoping they can help interpret my blood work results. My naturopath wants to put me on heavy duty meds without issuing an MRI so I decided to go the conventional medicine route for now and, quite frankly, I'm frustrated already in dealing with doctors and I haven't even been to the office yet, LOL!

 

I have to admit that I'm now focusing more on myself and I'm not as concerned about ds and the tics or anxiety. I really feel very selfish right now but I think it's good in a way b/c he doesn't have me hovering over him watching every tic he makes(even though I try to hide the fact that I'm watching!).

[Chemar]

[

I still think this is all triggered by 15 or so cases of strep he's had that make him subseptible

 

are you having him checked by a PANDAS doctor if he has that much strep history?

I would think that in a case where strep is so prevalent in a child, then first evaluating for PANDAS would be where to start...apologize if you have already done this and posted about it on the PANDAS forum...I dont get time to read all posts there so may have missed an update from you

[Chemar]

I have to admit that I'm now focusing more on myself and I'm not as concerned about ds and the tics or anxiety. I really feel very selfish right now but I think it's good in a way b/c he doesn't have me hovering over him watching every tic he makes(even though I try to hide the fact that I'm watching!).

 

hope and pray you get a clear dx and effective treatment Bonnie

 

good that you are focusing on you as you cant be at your best for him if you arent well ((((Bonnie))))

[Fixit]

still working on finding a pandas doc in ga

i called dr k's this morning and they suggested i start with a detailed email prior to a phone consult as he may suggest more tests prior to that

 

was there a vitamin or herb for vocals someone suggested

 

thanks for your help Chemar

[Fixit]

I'll be praying for you!

[Chemar]

was there a vitamin or herb for vocals someone suggested

 

thanks for your help Chemar

 

l-carnitine

[Tattoomom]

I have also heard from some newbies who get confused at being PMd to check into the PANDAS forum as soon as they post here, so hopefully we will be able to see a balance of providing the info needed so that new parents can check into the very real possibility of PANDAS, while not making them feel that is the only possible dx and so causing them to miss out on also learning about the other potential tic triggers and treatments

 

 

I have to wonder myself if my son has TS and I'm chasing a PANDAS diagnosis for no good reason... I guess that's what prompted me to start this thread a few weeks ago---

http://www.latitudes.org/forums/index.php?showtopic=6310

http://www.latitudes.org/forums/index.php?showtopic=6309

 

Personally, to me, it seems like parents of kids who tic are suspecting PANDAS over TS. Wonder why that is? Is PANDAS more common than TS?

 

Or is it that PANDAS is more treatable per se, so they feel the need to diagnose or eliminate it. I guess that's how I'm feeling at the moment.

[faith]

I think its perfectly reasonable to do the research and what you can to see if this is your child's issue. but I also think other reasons or treatments should not be ignored. whatever it is called, I don't care, cause I don't owe anyone an explanation, you still want to find out if there are triggers or thihgs you can do to alleviate or manage your childs issues, tics or otherwise. even those that feel they are properly diagnosed PANDAS do not have a clear path ahead, they travel a rocky road as well. I guess the lucky ones are those that catch it early and antibiotics seem to clear up the problem. persue what you must, but if there is another way to lessen your child's symptoms, I say look at that too. As far as PANDAS goes, I am only going as far as I'm confortable with.

 

Faith

[mommyof2]

Hello Faith

I have been here off and on but haven't posted in awhile...Update my son is doing VERY Well at the time. Do you remember me having issues back at the beginning of the summer and lasted up until about Sept. Well all done. I was not sure what started it all off again since we did the movies for the first time in a LONG time, generic topamax or teeth coming out well I am thinking it was the topamax because over school break we did the movies and he lost 2 teeth in the last few weeks and still doing great. We are only giving him 25mg topamax and I have been told by a few people that observed how well he is doing. I do see tiny things here and there but nothing major. He is also fighting a cold/allergy not sure which it is but everytime he goes to my neices for a long period of time to play or overnight he seems to come home with a running nose or something, one time his eyes were pink and itchy---not pink eye just allergies in them....it usually takes him a week or so to be better and still no ticcing.

I am so thankful for this board and all the helpful people and the courage to figure this out for him...hoping he grows out of it one day... he is soon turning 12 and it has been it's worse for him from 8-10....

Mary