Ibbygirl Posted March 4, 2011 Share Posted March 4, 2011 can you please tell me what the doctor prescribed and if it is working for you?? My dd has all of the three above, but the doctor said that prescribing meds is tricky for her because the meds for the one condition exacerbates the symptoms of the other. I'd just really like to hear from some people that have BTDT that could tell me how it worked for their child and what medication they are taking. I'd like to do some more research and having the drug name would be helpful. Also if anyone is doing any natural remedy that has been helpful, I'd really love to hear about that as well. Basically, I'm open to all options. Thank you so much to all who reply. :) Quote Link to comment Share on other sites More sharing options...
specialmama Posted March 4, 2011 Share Posted March 4, 2011 My boy has autism and OCD, and many people think he has ADHD but he does not. This is because he is constantly moving and hyper but we know it is sensory, not ADHD because every ADHD med we try creates the opposite effect that it should (ie: he gets more hyper) therefore they say he does not have ADHD. Sorry if that is confusing. :tongue_smilie: Anyhooo, for the OCD we have tried a few meds, but Fluvoxamine/Luvox is working beautifully. He's on a low dose for his body weight, but it is a miracle drug for him. He now owns his obsession, it does not own him. Instead of him writing the same words over and over for 4 hours, crying because he hates it, he now loves to write a sentence and go play. He'll come back occasionally just to look at it, then he is free to move on. It is beautiful to see! I hope you find something that works for your special muffin. :grouphug: Quote Link to comment Share on other sites More sharing options...
Ibbygirl Posted March 4, 2011 Author Share Posted March 4, 2011 My boy has autism and OCD, and many people think he has ADHD but he does not. This is because he is constantly moving and hyper but we know it is sensory, not ADHD because every ADHD med we try creates the opposite effect that it should (ie: he gets more hyper) therefore they say he does not have ADHD. Sorry if that is confusing. :tongue_smilie: Anyhooo, for the OCD we have tried a few meds, but Fluvoxamine/Luvox is working beautifully. He's on a low dose for his body weight, but it is a miracle drug for him. He now owns his obsession, it does not own him. Instead of him writing the same words over and over for 4 hours, crying because he hates it, he now loves to write a sentence and go play. He'll come back occasionally just to look at it, then he is free to move on. It is beautiful to see! I hope you find something that works for your special muffin. :grouphug: :grouphug: Thanks sweetie. Has the drug had any impact on his Autism for better or worse?? BTW, my title should say "an" Aspie, not "any". lol I can't correct it though. Quote Link to comment Share on other sites More sharing options...
specialmama Posted March 4, 2011 Share Posted March 4, 2011 :grouphug: Thanks sweetie. Has the drug had any impact on his Autism for better or worse?? BTW, my title should say "an" Aspie, not "any". lol I can't correct it though. Funny, I read "an". :lol: Well, it has impacted his autism in the sense that now he is free to pursue other interests. He never played with toys until he was on these meds. The day we tried it he played the piano for the first time and did a lovely job of Mary Had a Little Lamb. :001_wub: He also played with dominoes for the first time ever, and was much calmer in general. He was able to sit and PLAY with toys appropriately. That is just huge for him. He still has his obsession (drawing and writing) but now he owns it. He can walk away after a minute of engaging in his obsession instead of it owning him for hours. The negatives... well, he skips a meal occasionally, which isn't good for our kids who self-limit to begin with... but still worth it IMO. So about once a week he will skip lunch or dinner. That's about it, really. I'm sure there are other side effects for other kids, but that is all we've noticed. I'm wondering why your dr is saying that. Perhaps she's just afraid? Ignorant? I don't know... is she a GP/family dr or a paediatrician? Is there someone else you can see that is more knowledgeable? Meds have been proven to help OCD in so many of our kids. It's just really odd that she is saying that. It is true that ADHD meds can exacerbate symptoms if the child does not genuinely have ADHD, as I mentioned above. That is because sensory dysfunction found in autism can LOOK like ADHD but it is not. I wonder if that is what she is thinking about? Is it the OCD that you are trying to medicate or the ADHD? What symptoms would you like help for in your dc? Maybe that is a good angle to go from... Quote Link to comment Share on other sites More sharing options...
Ibbygirl Posted March 4, 2011 Author Share Posted March 4, 2011 Funny, I read "an". :lol: Well, it has impacted his autism in the sense that now he is free to pursue other interests. He never played with toys until he was on these meds. The day we tried it he played the piano for the first time and did a lovely job of Mary Had a Little Lamb. :001_wub: He also played with dominoes for the first time ever, and was much calmer in general. He was able to sit and PLAY with toys appropriately. That is just huge for him. He still has his obsession (drawing and writing) but now he owns it. He can walk away after a minute of engaging in his obsession instead of it owning him for hours. The negatives... well, he skips a meal occasionally, which isn't good for our kids who self-limit to begin with... but still worth it IMO. So about once a week he will skip lunch or dinner. That's about it, really. I'm sure there are other side effects for other kids, but that is all we've noticed. I'm wondering why your dr is saying that. Perhaps she's just afraid? Ignorant? I don't know... is she a GP/family dr or a paediatrician? Is there someone else you can see that is more knowledgeable? Meds have been proven to help OCD in so many of our kids. It's just really odd that she is saying that. It is true that ADHD meds can exacerbate symptoms if the child does not genuinely have ADHD, as I mentioned above. That is because sensory dysfunction found in autism can LOOK like ADHD but it is not. I wonder if that is what she is thinking about? Is it the OCD that you are trying to medicate or the ADHD? What symptoms would you like help for in your dc? Maybe that is a good angle to go from... Oh Karyn!! That's so great about your son! :) :grouphug: I actually had 3 different doctors tell me the same things about the meds. One was the pediatrician, the other two were pediatric neurologists. Basically they all said that any meds to help with the symptoms for the Asperger's would exacerbate the OCD and any meds for the OCD would exacerbate the Autism symptoms. Apparently the way the medication works for the one condition heightens the problems with the other. :confused: For the record they all were willing to write a prescription for her, they just kind of gave me the caveat that she would be tricky to medicate and that I would likely experience a negative effect in the other symptoms. They basically just asked me what was the most important condition that I was wanting control with and saying let's just go with that. The problem is, it's hard to separate them out because they all work together to impact her functioning which I guess is why we haven't medicated her yet. :( Quote Link to comment Share on other sites More sharing options...
specialmama Posted March 4, 2011 Share Posted March 4, 2011 (edited) Oh Karyn!! That's so great about your son! :) :grouphug: I actually had 3 different doctors tell me the same things about the meds. One was the pediatrician, the other two were pediatric neurologists. Basically they all said that any meds to help with the symptoms for the Asperger's would exacerbate the OCD and any meds for the OCD would exacerbate the Autism symptoms. Apparently the way the medication works for the one condition heightens the problems with the other. For the record they all were willing to write a prescription for her, they just kind of gave me the caveat that she would be tricky to medicate and that I would likely experience a negative effect in the other symptoms. They basically just asked me what was the most important condition that I was wanting control with and saying let's just go with that. The problem is, it's hard to separate them out because they all work together to impact her functioning which I guess is why we haven't medicated her yet. :( I understand. It is hard to sort out, and it is hard to find the right med for the right child. I'm pretty sure that is where they are coming from. It took us 4 tries until we found the right med. I should have mentioned that. I tend to block that part out. :glare: But I am willing to bet that they have experienced many upset kids/parents fuming and demanding answers when the meds cause bad side effects so now they are quite gun-shy. It is true, these kids ARE difficult to medicate. But really hon, they're throwing the baby out with the bath water. Once you find one that works, it WILL be worth the aggravation of having a few failed trials, which is quite likely. We went through one afternoon that was beyond horrible. But the meds were fast acting, so we stopped giving them immediately and within 12 hours it was out of his system. Perhaps that is what you should consider, fast acting med trials. Nothing permanent. Just a 3 or 4 day trial. Take detailed notes about any and all side effects and go from there. If there were no benefits or side effects that are negative, then go on to the next med trial. ETA: the computer goblins ate my last few sentences! ARG! I mentioned that I know how scary this is, and it took us a few years to decide to take the plunge. As soon as our ped mentioned a trial, it made all the difference. We also had a prayer chain going for him during the trial, so that was very comforting. Please keep us in the loop so we can lift your family up... Edited March 4, 2011 by specialmama Quote Link to comment Share on other sites More sharing options...
Ibbygirl Posted March 4, 2011 Author Share Posted March 4, 2011 I understand. It is hard to sort out, and it is hard to find the right med for the right child. I'm pretty sure that is where they are coming from. It took us 4 tries until we found the right med. I should have mentioned that. I tend to block that part out. :glare: But I am willing to bet that they have experienced many upset kids/parents fuming and demanding answers when the meds cause bad side effects so now they are quite gun-shy. It is true, these kids ARE difficult to medicate. But really hon, they're throwing the baby out with the bath water. Once you find one that works, it WILL be worth the aggravation of having a few failed trials, which is quite likely. We went through one afternoon that was beyond horrible. But the meds were fast acting, so we stopped giving them immediately and within 12 hours it was out of his system. Perhaps that is what you should consider, fast acting med trials. Nothing permanent. Just a 3 or 4 day trial. Take detailed notes about any and all side effects and go from there. If there were no benefits or side effects that are negative, then go on to the next med trial. ETA: the computer goblins ate my last few sentences! ARG! I mentioned that I know how scary this is, and it took us a few years to decide to take the plunge. As soon as our ped mentioned a trial, it made all the difference. We also had a prayer chain going for him during the trial, so that was very comforting. Please keep us in the loop so we can lift your family up... Thanks sweetie. We're exploring the possibilities. DH just told me to start researching drugs and side effects so I figured I would start by posting here and getting drug names from people who have BTDT. I really like the idea of trials. That is MUCH less scary. Did you know right away with each of the meds you tried on him?? I will definitely let you know if/when we start meds. I'll need all the prayer I can get. I always do. :D hehehe Quote Link to comment Share on other sites More sharing options...
specialmama Posted March 4, 2011 Share Posted March 4, 2011 Thanks sweetie. We're exploring the possibilities. DH just told me to start researching drugs and side effects so I figured I would start by posting here and getting drug names from people who have BTDT. I really like the idea of trials. That is MUCH less scary. Did you know right away with each of the meds you tried on him?? I will definitely let you know if/when we start meds. I'll need all the prayer I can get. I always do. :D hehehe :grouphug: Yes, trials are much less scary. :grouphug: All the meds we tried were fast acting, so we knew within a few hours at the earliest, or within a day at the latest. When the bad side effects showed up, we stopped the trial. It was important for us to stay home during those days and not have company over at all. I'm anxious to hear from other parents, too, to see what has worked for them. Both here and on FB. :grouphug: (hint hint, hop on Fb girl!) Quote Link to comment Share on other sites More sharing options...
Ibbygirl Posted March 4, 2011 Author Share Posted March 4, 2011 :grouphug: Yes, trials are much less scary. :grouphug: All the meds we tried were fast acting, so we knew within a few hours at the earliest, or within a day at the latest. When the bad side effects showed up, we stopped the trial. It was important for us to stay home during those days and not have company over at all. I'm anxious to hear from other parents, too, to see what has worked for them. Both here and on FB. :grouphug: (hint hint, hop on Fb girl!) LOL I can't remember if we're "friends" on FB or not. I rarely am on there anymore and I'm sure there's a bunch of people mad at me and my farm is all taken over by my neighbors. lol That's really good news about the trials. Thanks so much hon. That puts me a little more at ease. :) I'm always home pretty much anyway, except for when I'm not and we don't have any friends. lol We're too weird! :tongue_smilie::D hehehe Quote Link to comment Share on other sites More sharing options...
specialmama Posted March 4, 2011 Share Posted March 4, 2011 LOL I can't remember if we're "friends" on FB or not. I rarely am on there anymore and I'm sure there's a bunch of people mad at me and my farm is all taken over by my neighbors. lol That's really good news about the trials. Thanks so much hon. That puts me a little more at ease. :) I'm always home pretty much anyway, except for when I'm not and we don't have any friends. lol We're too weird! :tongue_smilie::D hehehe LOL You are a riot! :lol::lol::lol: And your FB page is full of Beautiful Woman awards from your friends! ;) Quote Link to comment Share on other sites More sharing options...
Ibbygirl Posted March 4, 2011 Author Share Posted March 4, 2011 LOL You are a riot! :lol::lol::lol: And your FB page is full of Beautiful Woman awards from your friends! ;) hehehe Is it really? Ay, now I feel terrible! :( I haven't been on FB in MONTHS. My friends will probably revoke my award and send me hate mail instead! :lol: I guess I'd better get on there then. Tomorrow. (maybe ;) :D ) hehehe Quote Link to comment Share on other sites More sharing options...
HeidiD Posted March 4, 2011 Share Posted March 4, 2011 can you please tell me what the doctor prescribed and if it is working for you?? My dd has all of the three above, but the doctor said that prescribing meds is tricky for her because the meds for the one condition exacerbates the symptoms of the other. I'd just really like to hear from some people that have BTDT that could tell me how it worked for their child and what medication they are taking. I'd like to do some more research and having the drug name would be helpful. Also if anyone is doing any natural remedy that has been helpful, I'd really love to hear about that as well. Basically, I'm open to all options. Thank you so much to all who reply. :) Clonidine and Luvox (for over ten years, with good results). Dosages were fine-tuned over time. Previously she had been on Ritalin, Tenex, an anti-psychotic prescribed by a navy doctor after she massively flipped out, and others that I can't recall. All either didn't work or exacerbated the problems. Finally we were able to find an autism specialist at the children's hospital who prescribed an effective combination and dosage for her. Quote Link to comment Share on other sites More sharing options...
ClassicMom Posted March 4, 2011 Share Posted March 4, 2011 My son sees an autism specialist for his autism, OCD, adhd, etc. He is on Risperdol, Zoloft and Vyvanse. We are fine tuning the Zoloft right now but all in all, the meds are working pretty well. I've been very happy with the results of the Risperdol and Vyvanse. Just need to get the OCD a bit more under control. While it is very difficult to see my son on these medications, the results not only for the family but for him have been overwhelmingly positive. He knows when it is about time to take them and will tell me that he can't think or that he needs to see the doctor (time for a change). Quote Link to comment Share on other sites More sharing options...
kaf5kids Posted March 4, 2011 Share Posted March 4, 2011 I am the mother of an 11 year old who begin to manifest OCD at 7. She is diagnosed high functioning aspergers with complications of OCD. We reached a very scary point before pursueing medication and I will say that with some kids it is necessary and literally changes the lives of the entire family. I have found that you have to form a relationship with a good doctor, therapist and psychiatrist and work with all of them. Our therapist was able to get us seen by the psychiatrist quickly due to the severity of my daughters problems. Anytime you start to use psychiatric medications you begin a process of observation and adjustment. We have been through many different medications. Some have worked for several years (fluoxetine) before becoming ineffectual or the side effects (elevated prolactin levels, grinding of teeth) manifest. It is well worth seeing the psychiatrist because they are more familiar with how medications work for given ages and given diagnosis. They also are familiar with non medical techniques and can recommend resources for these. Our psychiatrist usually gives us samples to try then a plan for the coming month on implementing changes in medication. She is also available for us to call to adjust medications over the phone between visits. Quote Link to comment Share on other sites More sharing options...
ClassicMom Posted March 4, 2011 Share Posted March 4, 2011 It is well worth seeing the psychiatrist because they are more familiar with how medications work for given ages and given diagnosis. They also are familiar with non medical techniques and can recommend resources for these. Our psychiatrist usually gives us samples to try then a plan for the coming month on implementing changes in medication. She is also available for us to call to adjust medications over the phone between visits. :iagree: Quote Link to comment Share on other sites More sharing options...
cjbeach Posted March 4, 2011 Share Posted March 4, 2011 My son is now 10 and definitely OCD but like someone else mentioned when you address one issue, the other issue seems to increase. Originally we were going to put him on something just for anxiety - Buspar. But I was concerned about the anxiety so the psychiatrist wanted to try Zoloft for the obsessive behavior and anxiety. I find it helpful with anxiety, not too helpful with the obsessive behavior though. He actually calls it his crying pill because without it he is definitely more teary. When we doubled the dose he was off-the-wall hyper, more aggressive, and seemed to have lost his sense of compassion (if that makes sense). We're sticking to the 50mg. I asked about ADD meds with the Zoloft but the psychiatrist felt that most ADD meds worsen the anxiety. I have been having him drink caffeine in the a.m. before schoolwork for a bit more focus. Quote Link to comment Share on other sites More sharing options...
Ibbygirl Posted March 4, 2011 Author Share Posted March 4, 2011 THANK YOU!! What wonderful replies. Thank you all so much for sharing your experiences. They are so helpful to me. I'm going to talk to the pediatrician and see if she can recommend a good psychiatrist for the kids. The neurologist she recommended was wonderful and she's been their doctor since I was pregnant with my first so I completely trust her. Thank you all again for your replies. I can't tell you how much it means to me. Thank you, thank you, thank you. :) :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Cortana Posted March 5, 2011 Share Posted March 5, 2011 I agree with the others who recommend working along with a psychiatrist/psychologist. I have a 9yo w/high-functioning autism w/OCD and ADHD. He takes a high dose of Strattera and a low dose of Ritalin to combat the ADHD symptoms (extreme hyperactivity). The meds are a life saver, they allow him to function much better. W/o the meds, he is literally bouncing off the walls, off furniture, becomes physically aggressive and sometimes violent, his emotions are out of control and he cannot do anything. He is still a very active child even with the meds, but as he says "they help me think better". :) We tried other stimulants and had the issue of the ADHD getting better but the OCD getting much worse. The combination he is on is so far the only combo that works well for him and keeps the ADHD and OCD symptoms in balance. He also has major anxiety issues and is showing signs of depression. At this time, both his ped and psychologist agree that anti-anxiety and anti-depressants aren't something we want to consider right now. This is where the psychologist plays a vital role in our lives, she focuses on the OCD and anxiety issues and how to work with him w/o using meds. Are these meds in our future? Most likely, but for now we are trying to keep the meds as minimal as possible and use other techniqes and methods. So far he is responding well and we'll continue this way until the time comes to make changes. :) Quote Link to comment Share on other sites More sharing options...
ChiMomNP Posted March 5, 2011 Share Posted March 5, 2011 When my son was on meds he took zoloft and risperdal. We tried a lot of different combos but that worked best for him. The risperdal curbed the agitation/rigidity of the aspergers and the zoloft eased the anxiety/ocd type symptoms. He has been off meds for a year now and doing great but those were the top choices for him when he needed them. Quote Link to comment Share on other sites More sharing options...
Misty Posted March 6, 2011 Share Posted March 6, 2011 My Aspies have all of the above and two of them take Zoloft for the OCD. It works very well for them. One of my daughters (7yr old) has severe OCD and the Zoloft did wonders for her along with going GFCF. They are unmedicated for the ADHD at this time. However, we did a trial with Concerta while my 7yr old did a brief stint in public school. Let's just say the teacher was not happy if dd came to school without her meds on board! It's tempting to give it to her every day at home, but it causes loss of appetite and sometimes headaches.. Especially if she went a couple of days without it and then went back on it. It also causes her to be VERY wired in the evening when she "comes down" off of it and she can't sleep for anything. So no stimulant meds here. Quote Link to comment Share on other sites More sharing options...
Wendi Posted March 6, 2011 Share Posted March 6, 2011 We've tried a number of things. Currently, my son takes Paxil and Strattera. The stimulant-type ADHD medicine made him feel bad and act agitated and weepy. But Strattera works differently, and does seem to help. Wendi Quote Link to comment Share on other sites More sharing options...
Guest momk2000 Posted March 6, 2011 Share Posted March 6, 2011 Dd (age 10) was diagnosed with PDD-NOS (about a year ago) and also has anxiety. She is taking Risperdal and Celexa. The medication has worked wonders for her, she is doing wonderfully. The meds were prescribed by a psychiatrist. Quote Link to comment Share on other sites More sharing options...
Ibbygirl Posted March 6, 2011 Author Share Posted March 6, 2011 :grouphug: :grouphug: Thank you ladies so much for being so willing to help and to be open about sharing your experiences with me. I really really appreciate it. :grouphug: You've given me a good direction to start my research. Thank you so much. :) When my son was on meds he took zoloft and risperdal. We tried a lot of different combos but that worked best for him. The risperdal curbed the agitation/rigidity of the aspergers and the zoloft eased the anxiety/ocd type symptoms. He has been off meds for a year now and doing great but those were the top choices for him when he needed them. May I ask why you took your son off the meds?? Thanks. :) Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted March 7, 2011 Share Posted March 7, 2011 Let me first say that I don't think dd is an aspie but if there is a category for kids who are slightly aspie but more adhd, she would be this. Let's say if she could get a diagnosis of slight aspie, she would probably have it. SHe is quite literal though she is smart enough to know that others aren't and changes her way of thinking for them. She also is very repititious when not medicated and also has the high interest in certain subjects like an aspie. Where she isn't like one is that she reads people well if she is paying attention. Casual observers never think anything is wrong with her but everyone who gets to know her for a while realizes she is different. Now with that warning, I will tell you what has worked wonders for us- high doses of ADHD medicine (70 mg of Vyvanse followed by 10 mg of Ritalin in late afternoon) plus Lexapro. The Lexapro was initially prescribed to try and stop a 3 month long head ache and it did. A second dose was added more than a year later during half the month to help with PMDD. I realize that the OP's child is much younger but looking back I can see that the worse failures as a parent and homeschooler I had with this child was not to push hard enough for adequate dosing. All kids are different and my dd, with severe ADHD and possibly other issues as described above, needs the larger dose of medications.I just know that with her, when she is medicated, the things I see being closest to autistic spectrum behaviors almost completely disappear. It probably is because she isn't on the spectrum really or just slightly so but I have found that properly medicating her on a few of the issues has incredibly helped with the others. It is as if we can treat the hormonal issues and the impulsivity and distractedness of ADHD, the phobias, anxieties, obsessions, etc. disappear. SO I only have problems for a short period in the morning and a somewhat longer period at night. Quote Link to comment Share on other sites More sharing options...
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