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Everything posted by mommyof2

  1. I am not sure, I know it is not a blood test. They are doing a scratch test, as they call it, on his arm. Wonder if that will tell anything ??? Mary
  2. Char we are doing food allergy testing...will that tell us the same as a IGG to see if a food is not tolerated by our son...or are the two different things...thanks Mary
  3. I am not quite sure why they didnt' do it....but normally I am VERY HAPPY with our ped. He has helped us greatly with our son and looks at all the research I send him, answers my emails when i am rantling over somthing that has me worked up...... I am not sure why they chose to not do the strep test, but normally he does do what I ask to make me feel better. When I told him of the hair analysis I was having done, he told me to forward him a copy so he can look at it and see what would help him...that made me feel good to know he looks at that as helpful. When I told him of the healer I took him too...he also thought it was a good avenue to take. He does look outside the box.... again maybe it was my faught...he could have just forgot it...heck they almost forgot he needed a shot that day At the nose, ears and throat doctor he put something up Travis nose so he could see his throat, maybe what he saw showed no signs of strep...not sure...but when we go back for the testing, I will bring it up again and insist on it. thanks for your responses Wendy hope today is going better for you!!!!!!!!!!!!!! Mary
  4. Wendy Hoping today is a better day for you and the antibiotic kicks in. Funny again the similiarity to my son and your daughter....he is making the same type vocal right now, even on the topamax. He did the same noise last year, started in the summer and went on until about when the topamax started. It was not as constant in the fall but it was still there. It is not really loud and it is just a sound I catch me and my husband making when in a convesation and agreeing with someone but ours is controllable and his is not. I had hm at the ears, nose and throat doctor monday and we are taking him back for food and allergy testing in Sept. but he did say from checking him out that his tonsels are a bit enlarged, not enough to take out and he saw a sign that he does have allergies---has some white dots back in-- so I am hoping that once we do the testing and find out maybe that is a problem for him. I asked for a strep test but didnt' get one done...they sounded like they would do it and then didn't.... I then went to our pediatrician yesterday for his last shot he needed and a checkup and asked him for one and explained the PANDAS idea but again he didn't do one, he said he talked with a well know doctor about the PANDAS and they just don't buy into it..... not that it doesn't exist but the antibiotic could be helping something else in the body and not the strep... .IDK guess next time he gets a little sore throat I will take him in and then they will have to do on.... Again Wendy hugs are coming your way,please take care of yourself so you can take care of your little girl....words my mom is always telling me when she sees the stress I go through wanting to help my son and not much I can do. mary
  5. Abbe I have it here, I will try again and stick with it and hope it takes it away...other than that things are good right now....how is your son doing. I am anxious to get the hair analysis done just to see what nutrients my son is missing and just what is going on in his tiny body [ I will let you know if it ever stops...do you remember if this took weeks or months for you...just wonder the road I am on...thanks Mary quote name=abbe' date='Jul 27 2009, 03:33 PM' post='35383]
  6. Linda I meant the topamax...that was the only medicine we ever tried and i hated to do it but we tried so much stuff and he just needed to have a break. He was so happy when he was tic free. I am just hoping the small dosage will be okay for him. We never really had any side effects other than a little sleepy in the evenings, which was okay since he went to bed at a good time that wore off though.... When we went on the topamax back in the winter the vocal went awqay along with the motor....but then I wonder if it is just a seasonal thing because last summer was the first he had vocals and again this summer he has them... we will see if they stop again in the end of the year and then we will know it is something else causing it. Could be the pool he swims in---i know chlorine is a trigger or maybe something he is eating, seasonal fruits.... Mary
  7. abbe yes I tried the L-cartine and the aceytl l carnitine, didn't seem to do anything...do you know if it takes awhile to kick in, maybe I didn't give it enough time...just hate overwhelming him with pills...he loved it when he only had a multivitamin in the morning and the 2 topamax at supper....now it seems we keep trying things. Linda I just wonder if it was the generic that caused you not to see a change.... I am on the brand name because our son did great for months on the brand and then they sent me the generic and within 2 weeks vocal, 3 weeks motor. Now he still has a few facial...eyebrows mostly but notice most of it happens when the vocal happens...can't get that one to stop. It is not real loud but i can hear it and it is not constant, he does have some quiet times. Before topamax we had no time when he was not ticcing so I do think it is helping him. mary
  8. Fatih I thought it was a seizuer medication... when we went on it our pediatrician did it with the thought that we will be stopping some day so I am hoping it is not something that has to be continued...i have an appt. with him next week, i will ask him mary[ quote name=faith' date='Jul 24 2009, 11:32 AM' post='35264] my question about topomax is what kind of med is that? Is that a siezure med? I was under the impression that once you take a siezure med, it is not supposed to be discontinued and you have to take it forever. I could be wrong, but I thought someone I know who has siezures told me that. (don't know what drug he was taking, however,).....Has anyone heard that? thanks Faith
  9. Wendy I just wanted to mention to you that it does seem to take a bit of patience for the topamax to really work. I wish I would have kept a journal back when i first put him on the topamax to see exactly how long it took to get in his system completely but I do think it took over a month to be at their best. I noticed change by alittle over two weeks but I think that was because they were so BAD for so long stopping alittle had me so excited. He would tic constantly.... only time he was still was when he would sleep so getting some still time was wonderful for me. Then when we went to the generic it took about two weeks for the vocals to start...that was about how long your daughter was off when things started.... then about a week and the facial started to go. Now he was on the brand topamax for 5 weeks and we still have vocals and the eyes but he also has some periods where he does nothing at all. I know when back in the spring he still did the hand hitting his leg but only when exciited and it didn't really stand out to others and we just took it as his personality. Now he has not done that since the other things started so maybe the topamax does not completely take them all away it just decided to move as it is normal for tics to change. If we could get the vocal to stop i would say what he does is so mininimal it is not concerning to me....and it is not like a loud nose as i hear of some talking about just a hmmm but I guess to me it drives me nuts because I just like quiet and it is easier for me to concentrate whenit is quiet andI just get concerned about when school starts if it will be distracting to the student beside or in front of him....maybe not... he plays with his cousins, friends and sister and they are not bothered by it or at least don't complain about it. We experiemented with the topamax a bit.... went to one capsule morning and two evening and then went back to just one morning and one evening but yesterday i decided to go back to two in the evning like it was when things were good....maybe he needs that boost at one time instead of spreading it around....we will see in a bit to see how it goes...like i said it worked like that before, now to just get it back. I ? the whole PANDAS thing also and am having a strep culture done hopefully next week to see how that goes but wonder if it is something my son has since from what I read the tics come and go with sickness...no kids with PANDAS have them for months at a time with no change....before topamax our son never had any on or off time...they were constant. Just wanted to share our experience with you..... Mary
  10. Hi Kathy...sorry to hear you have having a tough time.... know how you feel. We put our son on topamax around Christmas and he did very good up until about 1 1/2 months ago--not sure if it was the switch to generic or not but he was on that for a month and after two weeks vocals started and about a week later facials.... and now for about 5 weeks on the topamax. We were not very strict with his diet--just the obvious things like we tried to keep red candies away from him....he had a pretty bad outburst of them after eating a box of Hot tamolis(sp?) on our way to the beach last year. He is still ticcing...a vocal hmmm and usually a face tic goes with that....but he was really bad back before he was on it...never stopped ticcing...not for a day or an hour...now he does have some still times....like if he is telling me a story and concentrating on it...he does nothing...but if watching tv, playing cards or just running around he does them I never did the antibiotics for him........not sure if that would help.... but i do have an appt. with a nose,ears and throat doctor to get a strep and some allergy testing done to see if there is anything there. HTH Mary
  11. Faith it is great to hear how detailed you got with your visit. You gave so much valuable information...thank you so much. It is a scary thing not knowing and hoping not to so more damage. I just pray each day that my son is able to grow out of most of his tics. A few is not bad....makes them who they are....but quietness would be lovely...waiting for that to happen again. vanessa thank you also for all you have done with asking the medical field about these pilot studies.... we try to understand as best we can but hearing from a medical person and their opinion is so helpful. Thanks to everyonw for their updates... I am following this along to see where we would like to go next. Mary
  12. Which video was that Wendy......... Was it with Dr. Sims mary
  13. I come from a family of 10 and the most any of us had was I was a brother who blinked alot growing up and now he does some shoulder moving and such but that is about it and he gets alot of caffeine in a day so that might have something to do with his moving alot and another brother who drives truck and does some head and shoulder things but we always thought of that from driving his tractor trailer and the jerking it does... My husband comes from a family of four and has a ssiter who is manic depressent, I believe is the term, and his nephew we were told had a few tics he outgrow years ago--will be 18 soon--none of his were as obvious as our son has had. Also his sister did the blinking and minor things that were not very obvious. No one in my family has any signs of OCD or anyother conditions. My husband and i exhibit no forms of tics or OCD as our daughter has no symptons of OCD or tics..... Wish I knew why my son got this so badly....... If it is genetic....wonder where it came from.......maybe all the very mild things just piled up in him. Mary
  14. Deanna I was wondering the same question. My son is 11 weighs 70 lbs. We started him on 25mg at Christmas time...10 days later went to 50 mg and within the month the tics were pretty much non existant. We started the generic topamax May 18 and within 2 weeks vocal tics started and about a week later some motor tics. Put him back on the real topamax on June 19 and we did change from 2 pills in the evening to one i the morning and 2 in the evening on July 3 for about 2 weeks. He is now back to one morning, one evening...we just wanted to get things moving again for him. Right now things are better, but can't get the vocal to calm down. He barely does any motor tics at all. So I am not sure what changed for him..... I put the blame on the generic topamax...but I could be wrong I figure I will just pay the difference and be on the safe side for now. He still has no visable side efffects from the medicine. I do have an appt. with a nose, ears and throat doctor to see about a strep test (72 hr kind) and allergy testing, esp. food and also have the paper work to do for a hair analysis and at a nutritionist(with a RN background)...just trying to figure this all out. HTH Mary
  15. thanks vanessa for your input...it is greatly appreciated. Please let us know if you hear from your other sources. Mary
  16. when my son wea on 50 mg at night he was pretty much tic free for about 5 months. He never had any tic free times before we started the medicine....he was constantly doing it and very noticably so I think it helped. I am just convinced the generic had some sort of an inactive ingred that messed things up, now we just can't get it back again. He doesn't do alot just a few eye brow lifts and a head morement once in a while...and the hmmm sound he makes is pretty constant which i think causes some jerks he makes with his breathing. Mary My son takes 45 mg. of Topamax (15mg. in the morning and 30 mg. at bedtime). He still waxes and wanes while taking it which makes me wonder if it really works. The tics have been much milder since being on it and does have tic free times.
  17. My son is 11 and weighs 70 lbs and I have been giving him lately 2 200 mg tablets of mag. citrate tablets. One in the morning, one at night. I think the key is if his bowels are loose it is too much. How much topamax are you giving your son? I was giving mine son 50 mg at night until they changed me to generic and it seemed to start the tics up again.... then I when I got the right stuff after two weeks I added one in the morning for about 2 weeks and then a few days ago i only give him one at night and one in the morning. I haven't done the omegas but I do know alot of people without tics use fishoil for better brainhealth and alot of people here with tics says it helps them alot. Mary
  18. Faith What I did was cut the sticks small enough so they fit in his mouth and go over this back teeth and then I told him to keep his jaw forward so he does not have an overbite. That is how they did it for me when i had my TMJ treatment if I remember correctly.... I don't think just holding his mouth open would work because you also have to have the jaw forward and him pressing on the sticks helps it stay where it should be...jmo I have talked to different people chiro, ect and told them about what he believes with the nerves in the jaw and causing this to happen and ones I spoke too seemed to think that makes sense so I am thinking there is a pediatric dentist that I might call that does work with TMJ and give them some info and see what they think. I know when I had TMJ I was possibly going to have to have braces afterwards but got lucky and only was given a retainer which i stopped using at night years ago. Mary
  19. Well I did the at home test and cut down some wide popsicle sticks and had my son bring his lower jaw forward and went up to 5 sticks on each side. Right now we have some vocals...not really bad just a hmm sound but very often. After a few minutes it stopped and i asked him if he is controlling it, which he can usually for a bit of time, and he said no....he said wierd I don't feel the urge..... I will have him try this a few times just to see if it is him wanting it to work or really works. Like I said before he gets so many headaches, said his jaw does hurt when chewing awhile (maybe that is normal, don't know) He doesn' t really complain of jaw pains. Also I do know he took a hard fall to his chin when he was younger...so much that my sister scared me by telling me his tooth went all the way through his tongue...ran him to the emergency rooom since the blood would not stop but they said it will heal on its own. I know I had TMJ a few years after falling from my bike and hit my chin still have a scar from it. We have TMJ specialists in our area, the same one I went to is still doing it from 20+ years ago... Wonder by going to one of them if they would be able to diagnosis it and have an understanding of it. I remember the appliance I wore and it was a clear retainer covering my upper teeth and the front had a groove in it that would hold my bottom jaw forward.... Wonder if this is the same appliance he is using. What would be wonderful is my brother actually works for a dental lab that makes crowns and such for doctors and wouldn't it be sweet if I had a dentist that would work with him and he would make it for me.... I know he was able to help out some siblings with their crowns.... okay want to test this a bit more in the next few days and see what happens..... ahhh it would be so nice if this would stop the tics and the headaches for him Mary
  20. I get this from iherb http://www.iherb.com/Doctor-s-Best-Quercet...Capsules/7?at=0 and it works great for my allergies and a few family members use it. When my son started back with some tics i started to give it to him also for a few days but then noticed it had magnesium stearate and wasn't sure if that was the good kind of magnesium to give to him so I stopped. Mys son also gets headaches when out in the sun for awhile, but then I think I would too if I was out for that long...I am not a sun person This is what I think causes my son's headaches. He has been sneezing and congested and has been complaining of a mild headache. In other words, it's a bit bothersome but not enough to make him want to take pain meds for it. I need to take him back for NEAT and get him back on the quercetin(which I think helped with his allergies a bit). I also think he gets sun headaches and headaches possibly from dehydration. He played 4 hours of tennis yesterday in temps over 100 degrees and said a headache started last night. As long as he's not whining about it, I don't treat it except with having him drink lots of water! B
  21. Wendy I am so sorry things are going so badly right now for you... . My son is going through a tough time right now also, but getting a bit better. He was taking the generic topamax and within 2 weeks of it he was making vocal sounds and about a week later started with some head and eye movements. It took me 32 days to get the regular topamax for him and now it has been a month on it. After about 2 weeks and not much change i did up to 75 mg- 1 morning 2 at night just to get it back in his system, once things get better i plan to drop a pill. Through the generic time he had lost two molars, got hit on the head with a baseball at practice and we went to the movies (which we seldom do)...not sure if any of that has a bearing on it or not. He also put himself under alot of stresss since he was picked for the allstars baseball and just wanted to do good so badly. Right now we still have the sounds but facial tics seem to only happen with the hmmm noise he makes. he can control it when he needs to but when relaxed watching tv, playing cards ect... he does them. Things are not nearly as bad as they were back last year before the topamax but not like they were after it either. he complains alot of tightness in his chest and burning. Not sure if that is do to the sounds he is making or if that is causing the sounds. We took him to the chiropracter this week, hie seems to always have his head tilted when sitting and wanted to see if he was out of alignment causing his headaches. She said his head faces forward more than it should and gave him so neck exerices to do.... We also have an appt. with the nose, ear and throat doctor to see if he has any sinus problems...gets really stuffy alot and flemmy.... want a strep cultture done also because he had been around kids alot with strep and had bad sore throats but usually got better before having to go to the docture...want to do some allergy testing with him. And lastly we are going to a lady that will do a hair analysis and is an RN nutritionist to see if he is lacking any minerals or vitamins. Funny last summer was when he started making the noises and then he started this summer again...not sure if there is a connection or not. It is so hard when things happen all at once to figure this out. I was so happy the last few months when things seemed to settle down, so much more relaxed...now this seems to occupy my thoughts constantly. My prayers are with you to give you the strength you need to get through all of this.
  22. Wow that was more than I thought they were saying...thought it was only about 3000.00 Waiting to hear back from our ortho. also Char, I called Dr. Sims office and was told that at your first visit which costs $312, they actually will determine if the device would work for you, and if you decide at that point to continue then you would order the device made especially for you, which takes about 1 week. If at the first visit you decide the device doesn't really work to your satisfaction and is not for you then, your expense is only the initial $312. Total cost is $5,057. She also said Dr. Sims could do the x-ray or your dentist could do it. I actually took the papers to my dentist this afternoon to see what he thought of the device and Dr. Sims' theory as to why this would work. I am waiting to hear back from him. Linda
  23. goes from me too... I keep checking hoping to see an update from her... prayers going to her and her family!!! Mary
  24. Wendy just hinking of you...hope things are getting better. mary
  25. well maybe it is something else causing the headaches then. I know his nose always seems clogged, maybe it is sinuses....
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