Jump to content
ACN Latitudes Forums


  • Posts

  • Joined

  • Last visited

Everything posted by rysmom58

  1. i know I am in the minority on this board, but chose to medicate my son after his tics were interfering with his school work, peers, and other things. It has been one of the best decisions I have made for him and it has been great for us. Ryan started ticcing when he was 3 and TS runs in my exhusband's family. I tried the natural route, but alone nothing changed. By first grade his tics were affecting his abilitly to get his school work done and he was having a hard time with his peers because honestly his tics were so annoying. Ryan started on clonidine when he was almost 7. He started on a very small dose and worked his way up as he has grown to what he takes now. At first the side effects were there. He would take his pills and be asleep within 30 minutes. Also, he was much more emotional and would get angry quickly. Through trial and error I adjusted his dosage (slowly) and the time of day he takes it. He has been pretty much tic free for 2 years, has no side effects and is doing very well. He also has severe adhd and last year we started him on Strattera. Once again, it changed everything for him when it comes to his focusing and hyperactivity. He has made so many marked improvements. Along with the clonidine and straterra I give him Vitaspectrum mulitvitamins and B12. the vitamins are designed for children on the spectrum. With the combination of the clonidine, straterra, and vitaspectrum I have happy, healthy, 9 year old boy!
  2. I watched it today and felt that it showed different ways families are trying to deal with it and actually all families said that medication did not help at all. One family is going the all natural route, one did deep brain stimulation, and the other two were not on meds for tourettes but for the comorbid issues. It didn't tell me anything I didn't already know, but it was interesting to see how other children cope with it.
  3. My son is 8 and has been on clonidine for a year and a half. it has been such a great medication for us b/c he is pretty much tic free since I've figured out his dosing/ timing of it. it does make him tired, so he takes the larger dose at night and a small dose in the morning. He's gained 20 pounds and grown 5 inches this year and I think that has made a huge difference of him not being tired anymore in the morning. We just started Straterra a week ago b/c his ADHD is pretty severe. He takes his Straterra at night along with his clonidine. I haven't seen any really change with the adhd yet, but straterra usually takes 3-6 weeks to build up in the body before having an affect. so far we have been 99 percent tic free (with both pills that was a big worry) and he has had no side effects from the Straterra. We did the natural route, but his tics/adhd were interferring with school and friends too much to not seek medication. I know most people on here are really against it, but the clonidine totally changed so much for my son b/c he isn't ticcing much anymore (sometimes at night before bed and he's watching t.v. he will tic a little). I do give him a teaspoon of Kids calm at night too. For him, it's been a successful combination. He is happy, smart, and almost tic free. I did try lowering his clonidine dose a little at a time this summer and his tics came back, although I did manage to get him down by a 1/2 of pill without the ticcing. He now takes 2 pills of clonidine at night along with 25mg of Straterra and 1/4 a pill of clonidine in the a.m. with no side effects (except at night he will get sleepy about an hour after taking the pill). I do stick to giving him the pills at the same time each night and morning, for Ry I found this helped a lot with the tiredness. Good luck.
  4. There's both. I get Kid's Calm by Peter Gillingham and I order it off vitacost.com
  5. Ryan gets 1 tsp at night with his clonidine and it has worked well for us. He is still pretty much tic free (I see the small ones b/c I look for them) since I started the clonidine/kid's calm. Maybe I'll try breaking up the dose for morning and night. Ryan has adhd along with his tics and I'm thinking the kids calm in the morning would help him focus. I'll have to try it next weekend. If it's not one thing, it's another
  6. Wow....I recall noticing an improvement the first day already.....and about the full effect by day 2-3. Maybe rye started on a low dose and had to work up, so it took a few weeks??? My son started on 0.1 mg am and pm , as I recall, by day 2 tics were mostly all gone, and by day three he was more drowsy, and so started backing off on am doses. Ryan did start a on a very low dose and we worked up from there.
  7. With my son it took about 3 weeks to notice a difference. From there, it too almost 6 mos. for me to figure out what dose, time etc.. worked best for Ryan. Like I said in my previous post, we've been 99 percent tic free since the beginning of Aug. Up until then, Ryan had a tic in some form or another since he was 3.
  8. clonidine is extremely sedating. My son takes the majority of his dose at night and he is asleep within an hour of taking it. After about 5 mos. on it I broke up his dose and he takes 1/4 of a pill about an hour before school (and he's fine) and the rest of his dose at night. I know that when my son takes his 2 pills at night, he is out and does not wake up for much of anything. This is the only side effect we have experienced. He is not sleepy at all with his 1/4 pill in the morning, but he's been on clonidine for a year and its used to it. as for his tics, he hasn't had any for at least 7 mos.
  9. Absolutely! I agree it's not always the case, it's just what is working for my son right now. If he didn't need medication to be successful in school and with his peers I wouldn't do it. Of course it affects everyone differently. We are lucky that Ry has done so well with it. I know many people feel it's too sedating for them to function well. However, for Ry, the routine of having his 2 pills at night and the 1/4 in the a.m. is good for him. FYI, we started slow and worked up slow too.
  10. Hi, I just wanted to give you all an update on my son b/c a few have been asking and we are at the year mark since he started his medication. Just a little background. Ry is 71/2, 78 pounds, and almost 5 ft tall. Ryan has had tics since about the time he was three and tourettes runs in the family on his dad's side. He's had all kinds of tics and of course they waxed and waned. Last year (at this time), his tics started to interfere with his shool work both academically and socially. He ticced a lot and I finally decided to bring him to a neuro. I brought him up to children's in boston and the neuro wrote us a script for clonidine. I started him on it and have increased the dose from 1/4 a tablet to the 2 1/4 he gets now. It was a process for the both of us to see what worked, what doses worked, and how he handled it. Since the beginning of August we have found the right amount/time to give it to him and it has worked wonderful! Now, it's been 7 months of 99% tic free living. The only time he tics is at night when he's watching t.v. or playing the wii and still it's not a lot. People have asked me about how's he doing and if we're still tic free. We are, and he's a happy well adjusted 2nd grader. He takes 2 pills at night and 1/4 in the morning. This breakdown has worked great for him, but it took me awhile to figure out this is what worked. At night he take ths 2 pills around 7:00 and by 8:30 he's sleeping. Of course this does have a sedetive effect and that's why he gets it before bed. He gets his 1/4 pill around 7 a.m and he's good to go. He's not tired and he's happy to go off to school at 8:30. I did find that the meds have to be spaced out by 12 hours for it to work the best for him. If he takes it a 8 p.m. I wait until 8 a.m. b/c I like to keep him on a schedule. He's successful in school and has a bunch of friends. Overall, it's been a very positive experience for us. As for vitamins he takes a multi with iron, vitamin c with echanicia, and has kid's calm at night. Feel free to ask me any questions, I don't mind answering them honestly.
  11. yes, he did. Honestly that is what prompted me to seek out a neuro b/c they were interrupting his class and it was starting to affect him socially. He would make a constant raspberry sound and say the word "oregano" over and over again. Odd tic... His vocals are gone. On occasion one will slip out here or there (it's a gulping sound). But, it's only once in awhile now.
  12. my son has been on clonidine for about a year now and it's been great for us. He started on the smallest dose and it worked up from there. He takes his largest dose before bed and a very small dose in the morning before school. Whe he takes his evening dose he is ready to pass out an hour later. This works for us though b/c it's bedtime. He takes a small dose about an hour and a half before his school day begins and he is FINE. It took him about a month to get over feeling tired after his morning does, but his body has adjusted and he's doing great. I do keep the a.m. and p.m dose 12 hours apart so that it stays in his system. Another side effect I noticed is that it made him more emotional. This lasted for about 3 weeks and then his mood evened out. He is the same happy child he was before meds, but without the tics. He is basically tic free and has been since August (It took me 6 mos to figure out what dose and what times work best for him). He notices it too. Once in awhile he'll make a comment about how he doesn't do his tics anymore.
  13. Hi, Each tablet is 0.1 mg. He has been on it since last Jan. and it took me a while to figure out the doses/ times etc.. He would do great for a month or two and that his tics would come back (not as much before the pills). It was a process. I also waited to give him the 1/2 tablet in the morning until the summer b/c I was worried about his being tired in school. It did take him a couple of weeks for his body to adjust to this. Ryan was very emotional at first and a bit spacey about an hour after taking the pill. However, he now does not experience that at all. I hope things work out for you. My experience is that you need to give it time so that your child can adjust and if it's not working I would talke to the neuro. GOOD LUCK.
  14. I don't know his blood pressur off the top of my head, but the last time he was at the ped. it was fine. As for it being " a lot" it's what his nuero at Boston Children's hospital perscribed and we worked up to it. He's been doing more than great. The next time we go to a cvs I'll check his blood pressure and post it here. Sorry I can't give you more specifics.
  15. Ryan (who's 7 ;65 or so pounds) takes 1/4 a tablet around 7:15 a.m. and 2 and 1/4 tablets at 7:15 p.m. He also takes Kids Calm at night (1tsp) along with a flinstone's vitamin and a gummyvites echinachia/ vitamin c. When I say he's been tic freee since August, he's been almost totally tic free. It's actually improved even more since I last posted. It is very rare that I notice him ticcing at all. I was worried that his tics would get a bit crazy with school starting (they have for the past 2 years), but nothing. I am almost scared to type this b/c I don't want to jinx this. It did take him a while to adjust to taking the morning pill. He was tired and a bit moody. I've found that if I give it to him at 7:15 am and 7:15 pm, its enough time between doses where he's not tired in the morning. Also, it seems to be staying in his system. He is really tired about an hour after his p.m. dose, but that's b/c it's the majority of the medicine and he's been active all day long.
  16. He is doing very well. School starts here it two weeks too, but I really haven't mentioned it to him. He gets very anxious so I'll let him know a few days before it starts. No reason to get him nervous now. usually at the beginning of the school year (for about the first 2 weeks) his tics get very active. This is the first back to school while he is on clonidine, so we'll see how it goes. As for Claritin, my son can't handle it, it makes his tics come out. We have been using Zyrtec for allergies with a much better result.
  17. Hi, I've gotten a few pm's about how my son has been doing so I thought I would update you all... Ryan started clonidine in Jan. and has been on it since then. His tics have been under control unnoticeable most of the time since starting the clonidine. I have had to change the dose since starting and also the times he gets it so that it works best for him. Now he gets 1/4 tablet in the morning and 2 at night. This seems to be the magic formula for him. He is happy, not ticcing, and not tired with the 1/4 pill in the morning (I tried a 1/2 and he was emotional and exhausted). With this I don't notice any ticcing during the day, maybe a few here and there in the evening. It took us a while to get here though. Towards May (after he'd been on clonidine for 2 mos) the ticcing seemed to come back. I waited until the summer to spread out the dose b/c it does make him very tired. It did take him about 2 weeks after starting the morning dose for his body to get used to it and not be tired or emotional. Now, he's great! I'm sure I'll notice some tics when school starts, this always brings them out. Just thought I'd give an update on our experiences with the clonidine.
  18. I was wondering if anyone has used with any success the Bontech TS plus vitamin. I have a 7 year old son who has tourettes. Right now he's on clonidine and he's been doing very well on it. However, in the last 2 weeks his tics have reappered. I would love to hear your experiences with this vitamin and wondering if anyone has taken it with clonidine? thanks in advance.
  19. Hi, My son has pretty bad seasonal allergies. I gave him some claritin for about a week and it increased his tics a lot. Does anyone have any suggestions for a decent over the counter allergy medicine? Thanks in advance.
  20. [Ryan takes claritin in ths spring/summer and it doesn't aggravate his tics.
  21. I'm not really sure, but both clonidine and natural calm can cause you to feel sleepy. My son is on clonidine, but he talkes 1mg at night. I stopped the kids calm b/c i didn't want him to feel way too tired. But, now that he's been on the clonidine and doing well with it, I'm adding back the kids calm. you should call your nuero if you are worried. When I asked mine about using the two he said that it "shouldn't be a problem"
  22. I stopped giving ryan kids calm. that was the only thing he was on when I started the medication. He still takes his child's multivitamin. As for adhd and clonidine, I don't think it's used for treating it. but, it has calmed him down a lot and he is able to focus better.
  23. RY's (before starting his meds) nose in fingers rasperry sounds holding breath sniffing fingers saying oregano over and over and saying shut the door over and over itching knee touching the ground when he walks rubbing left eye grunting head tilt back nose twitch spitting burping saying I love you touching things wiping his mouth arm flapping hitting his hand to his chest of course these all kept coming and going and onlyl a few at the same time.
  24. just an update... We are on week two and so far so good. Ryan's tics have pretty much gone with the occasional one here or there. However, when it's close to the time to take another pill I notice the ticcing comes out a bit. He's not tired and is his happy old self. In fact, I've noticed a change in his behavior too. He's able to focus more and is a bit more calm. So far, I'm happy with the choice to give him the meds. He still takes it at night before bed and wakes up with no problems around 6/6:30. I'll keep you posted on the good and the bad.
  25. Hi, I started my son on clonidine 7 days ago. He's been ticcing since he was 3 and until now I tried the all natural route. My line in the sand (so to say) was that if his ticcing started affecting his schooling (academically) then I would explore medication. Well, his teacher and I have kept in constant contact throughout the school year and is eye rubbing tic is really affecting his reading and writing. So, after speaking with the neuro I decided to put him on medication. 7 days in his tics are nearly gone and he hasn't experienced any side effects. He only take .05 mg at night, about a 1/2 before bed and he's been fine during the day.
  • Create New...