Guest guest Posted October 23, 2010 Report Share Posted October 23, 2010 - Anyone present with torticollis at all? **Yes, Olivia had torticollis, plagiocephaly and a left subluxed hip. > - Someone mentioned that a CT Scan seemed unusual. How many of you have > gotten a CT Scan? **Liv has had 2. It does seem a little soon for a CT, but what do I know? Im no doc...Just a mum. > - I buried this in my introduction. Anyone have experience with Juvenile > Xanthogranuloma (JXG)? **I have not. Can you give us a brief definition? Thx, HRH > Thank you everyone for the warm welcomes, and the wisdom you've shared. > Reading your notes has given me hope, and scared me a little. But not in > a > bad way. It's definitely opened my eyes to a couple of things. I shared > a > few things last night, and hearing about your experiences definitely > helps. > > I talk to our ortho's nurse this morning. And then we're going to visit > 's pediatrician just to make sure she's up to date on what's going > on, get some more questions answered (including seeking a second opinion, > and where we might be able to go for that). > > A couple more questions for everyone - > > - Anyone present with torticollis at all? > - Someone mentioned that a CT Scan seemed unusual. How many of you have > gotten a CT Scan? > - I buried this in my introduction. Anyone have experience with Juvenile > Xanthogranuloma (JXG)? > > Thanks, > > > Father to , 2 1/2 years old, 47*, just beginning the journey > > > >> >> ------------------------------ >> *From:* Toney <gotmaps@...> >> *To:* infantile scoliosis treatment >> *Sent:* Wed, October 20, 2010 2:05:52 PM >> *Subject:* Introduction >> >> >> >> Hello everyone, >> >> The quick introduction: I'm the father of a 2 1/2 year old girl named >> . We're with Rady Children's Hospital in San Diego. At 6 months >> old >> (August 2008), showed a 10 degree curve. Last year (November >> 2009), >> she was at 15 degrees. This month, she was x-rayed at 47 degrees. Her >> doctor is recommending an MRI and CT Scan, and Casting. We are visiting >> her >> pediatrician tomorrow to discuss everything and get her thoughts. >> >> My wife is 37 years old, and was diagnosed with Infantile Scoliosis at >> birth. She endured bracing growing up, and at 9 years old, had two >> surgeries at ish Rites in Texas (1982). >> >> We're dealing with a lot of issues - not only what is about to >> go >> through, but dealing with all of the issues my wife has, reliving the >> experience. It's hard to separate herself from 's experience. A >> lot >> of time growing up was dealing with doctors that wanted to 'practice' >> medicine on her. She remembers vividly getting intubated, being put >> out, >> being left in hallways, and being taken from her parents, kicking and >> screaming. So, as we enter this experience with , it's hard to >> not >> feel like those will also be 's experiences. We're worried all >> of >> that plus needles, IV, anesthesia, the necessity of the MRI and CT Scan, >> bracing vs casting, etc. There are anger issues related to what she >> went >> through, and how her parents handled it. >> >> The longer story: >> >> Prior to birth, my wife received an ultrasound that showed no evidence >> of >> scoliosis (as I said, she was diagnosed at birth). At 3 months old, >> >> was diagnosed with juvenile xanthogranuloma (JXG), hip dysplasia and >> torticollis. Dermatologist watched the JXG (curious if anyone else has >> experience with JXG?), and we did physical therapy for the hip dysplasia >> and >> torticollis. At 6 months, we did an x-ray, and since she was only at 10 >> degrees we did a 'let's watch and see what happens with the scoliosis'. >> >> In November of 2009, we did another x-ray, and was at 15 >> degrees. >> The doctor agreed to continue with a 'wait and see' approach, but >> referred >> us to a geneticist for additional review. >> >> February of 2010, we did visit the geneticist. We were pretty >> disappointed >> in the appointment. He felt that 's scoliosis wasn't genetic, >> and >> that she wouldn't progress any further. I've pinged them a few times >> for >> their findings, but they haven't been forthcoming. >> >> This past month we went to visit the ortho, and got the x-ray showing 47 >> degrees. At that point, her doctor is recommending casting (no further >> info >> yet on what kind of casting), an MRI and a CT. >> >> As I mentioned before, these are difficult things for us to accept, not >> just from the 'we don't want anything to happen to our child', but from >> the >> perspective of my wife's experiences. We are scared of the procedures >> (casting, MRI, CT), and of putting her under. >> >> Let me end it by there that I'm interesting in reading about your >> experiences, and appreciate any advice/guidance that you can provide. >> >> >> >> >> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2010 Report Share Posted November 4, 2010 Welcome ! My son is 11yrs old and also had severe self abuse. He started Rispredal aka risperedone 3 yrs ago and it helps tremendously! This is a great group of people and I'm sure you will get great advice. L <kslemieux@...> wrote: >Wow, I joined just in time to read the put your child in jail thread. Must say that one scared me. Right now we are facing more issues with significant self-abuse. My 5yr old daughter punches her face almost as a habit anymore. It worsens whenever she is stressed (which is a good deal of the time). She will draw blood, leave bruises, split her lips without being bothered. She has also started using her heels to bruise her legs from midthigh down to her feet. Once in a long while, if she is really upset, she will go for the face of the nearest caretaker with her nails. She was finally started on rispiridone recently. Ciara is nonverbal, just learning a bit of sign language, MR and has multiple physical problems which have led to a trach, a ventilator at night and a feeding tube. She can walk with a walker but hasn't got the balance to stand on her own and has never pulled herself to a stand without help. We have only been working on the behavioral issues for the past year even though they have been present in a milder form since she came to our home at age 34months. The first few years were just devoted to keeping her alive. I feel like this has put her so far behind in everything. Consider me a beginner and tell me what I don't know that I don't know. Thanks. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2010 Report Share Posted November 4, 2010 Hi! I have to agree that all of the recent posts about jail or removing the child from the house have made me scared as well. My prayers go out to the parents having to go through that. That decision has to be every parent who has a child on the spectrum worst nightmare. I'm not sure if I can help, but my experience has been that finding out the cause of the stress that starts the behavior is the first step (and there might be multiple stressors). The other thought I had was visual cues like storyboarding. Can be simple, handmade that she can point to when something is bothering her. A way she can communicate with you. Or maybe a story about why we don't hurt ourselves or others? This spectrum is so confusing and I live it as well every day with my son. I've found getting down on the floor and rocking him and talking about 'why you are upset' helps. I'm not sure if I've helped at all. Maybe you've done all of these things. I feel for you...we are all, in some capacity, in this together!My best, Sent on the Sprint® Now Network from my BlackBerry®From: "L" <kslemieux@...>Sender: autism Date: Thu, 04 Nov 2010 02:24:27 -0000<autism >Reply autism Subject: Introduction Wow, I joined just in time to read the put your child in jail thread. Must say that one scared me. Right now we are facing more issues with significant self-abuse. My 5yr old daughter punches her face almost as a habit anymore. It worsens whenever she is stressed (which is a good deal of the time). She will draw blood, leave bruises, split her lips without being bothered. She has also started using her heels to bruise her legs from midthigh down to her feet. Once in a long while, if she is really upset, she will go for the face of the nearest caretaker with her nails. She was finally started on rispiridone recently. Ciara is nonverbal, just learning a bit of sign language, MR and has multiple physical problems which have led to a trach, a ventilator at night and a feeding tube. She can walk with a walker but hasn't got the balance to stand on her own and has never pulled herself to a stand without help. We have only been working on the behavioral issues for the past year even though they have been present in a milder form since she came to our home at age 34months. The first few years were just devoted to keeping her alive. I feel like this has put her so far behind in everything. Consider me a beginner and tell me what I don't know that I don't know. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2010 Report Share Posted November 4, 2010 , Ciara has sib that is different from anything that I have dealt with. Karac would just bite himself when he was frustrated, and I gave him something else to bite. Would boxing gloves keep her from injuring her face or could she be redirected to punching a pillow instead of her face? Hopefully the Rispiridone will help calm her down. I have been praying for you daily. blessings, Pat K Introduction Wow, I joined just in time to read the put your child in jail thread. Must say that one scared me. Right now we are facing more issues with significant self-abuse. My 5yr old daughter punches her face almost as a habit anymore. It worsens whenever she is stressed (which is a good deal of the time). She will draw blood, leave bruises, split her lips without being bothered. She has also started using her heels to bruise her legs from midthigh down to her feet. Once in a long while, if she is really upset, she will go for the face of the nearest caretaker with her nails. She was finally started on rispiridone recently. Ciara is nonverbal, just learning a bit of sign language, MR and has multiple physical problems which have led to a trach, a ventilator at night and a feeding tube. She can walk with a walker but hasn't got the balance to stand on her own and has never pulled herself to a stand without help. We have only been working on the behavioral issues for the past year even though they have been present in a milder form since she came to our home at age 34months. The first few years were just devoted to keeping her alive. I feel like this has put her so far behind in everything. Consider me a beginner and tell me what I don't know that I don't know. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2010 Report Share Posted November 5, 2010 Hi and , I know your pain because we have lived with SIB and aggression for years. My son has severe SIB as well. It started at age 2 but didn't start being a real problem until age 8. Abilify helped for a while but not long. All other meds did not help, and in fact I think some made it worse. We've done ABA with a major behavioral component since age 4 but those behavior plans only helped with behaviors triggered by external things (frustration, attention, etc). Well about 3 years ago(age 12) we started neurofeedback and that has made a huge difference in his moods, his behavior, his tolerance, his language, etc. It helps improve the functioning of the brain and in the area of SIB, we saw those behaviors that came from internal triggers completely disapeared. Since those behaviors were not improved by our ABA behavior plans, this was huge. I highly recommend this for kids with SIB. My son is still not aggression-free but it's very low and it gets better all the time. We went from over 200 incidents/week to less than 1 incident/week. Unfortunately my son managed to hurt himself to the point of being blind in one eye (detached retina) but I think the days of serious injuries are over. Don't think you can't do this if your child is non-verbal and has few skills. Some providers won't take non-verbal kids but there are those who will and at least one group that will set up a distance program if you need it. Let me know if you need more info. Jill > > >Wow, I joined just in time to read the put your child in jail thread. Must say that one scared me. Right now we are facing more issues with significant self-abuse. My 5yr old daughter punches her face almost as a habit anymore. It worsens whenever she is stressed (which is a good deal of the time). She will draw blood, leave bruises, split her lips without being bothered. She has also started using her heels to bruise her legs from midthigh down to her feet. Once in a long while, if she is really upset, she will go for the face of the nearest caretaker with her nails. She was finally started on rispiridone recently. Ciara is nonverbal, just learning a bit of sign language, MR and has multiple physical problems which have led to a trach, a ventilator at night and a feeding tube. She can walk with a walker but hasn't got the balance to stand on her own and has never pulled herself to a stand without help. We have only been working on the behavioral issues for the past year even though they have been present in a milder form since she came to our home at age 34months. The first few years were just devoted to keeping her alive. I feel like this has put her so far behind in everything. Consider me a beginner and tell me what I don't know that I don't know. Thanks. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2010 Report Share Posted November 5, 2010 Jill, Can you explain a little more about nuerofeedback? Thanks! a Jill <jgmangus@...> wrote: >Hi and , > >I know your pain because we have lived with SIB and aggression for years. My son has severe SIB as well. It started at age 2 but didn't start being a real problem until age 8. Abilify helped for a while but not long. All other meds did not help, and in fact I think some made it worse. We've done ABA with a major behavioral component since age 4 but those behavior plans only helped with behaviors triggered by external things (frustration, attention, etc). > >Well about 3 years ago(age 12) we started neurofeedback and that has made a huge difference in his moods, his behavior, his tolerance, his language, etc. It helps improve the functioning of the brain and in the area of SIB, we saw those behaviors that came from internal triggers completely disapeared. Since those behaviors were not improved by our ABA behavior plans, this was huge. > >I highly recommend this for kids with SIB. My son is still not aggression-free but it's very low and it gets better all the time. We went from over 200 incidents/week to less than 1 incident/week. Unfortunately my son managed to hurt himself to the point of being blind in one eye (detached retina) but I think the days of serious injuries are over. > >Don't think you can't do this if your child is non-verbal and has few skills. Some providers won't take non-verbal kids but there are those who will and at least one group that will set up a distance program if you need it. > >Let me know if you need more info. Jill > > >> >> >Wow, I joined just in time to read the put your child in jail thread. Must say that one scared me. Right now we are facing more issues with significant self-abuse. My 5yr old daughter punches her face almost as a habit anymore. It worsens whenever she is stressed (which is a good deal of the time). She will draw blood, leave bruises, split her lips without being bothered. She has also started using her heels to bruise her legs from midthigh down to her feet. Once in a long while, if she is really upset, she will go for the face of the nearest caretaker with her nails. She was finally started on rispiridone recently. Ciara is nonverbal, just learning a bit of sign language, MR and has multiple physical problems which have led to a trach, a ventilator at night and a feeding tube. She can walk with a walker but hasn't got the balance to stand on her own and has never pulled herself to a stand without help. We have only been working on the behavioral issues for the past year even though they have been present in a milder form since she came to our home at age 34months. The first few years were just devoted to keeping her alive. I feel like this has put her so far behind in everything. Consider me a beginner and tell me what I don't know that I don't know. Thanks. >> > >> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2010 Report Share Posted November 6, 2010 Jill, I would also love any information on neurofeedback. Ciara is very low functioning but trying to hold her arms and legs down most of the time is getting old. > > > > >Wow, I joined just in time to read the put your child in jail thread. Must say that one scared me. Right now we are facing more issues with significant self-abuse. My 5yr old daughter punches her face almost as a habit anymore. It worsens whenever she is stressed (which is a good deal of the time). She will draw blood, leave bruises, split her lips without being bothered. She has also started using her heels to bruise her legs from midthigh down to her feet. Once in a long while, if she is really upset, she will go for the face of the nearest caretaker with her nails. She was finally started on rispiridone recently. Ciara is nonverbal, just learning a bit of sign language, MR and has multiple physical problems which have led to a trach, a ventilator at night and a feeding tube. She can walk with a walker but hasn't got the balance to stand on her own and has never pulled herself to a stand without help. We have only been working on the behavioral issues for the past year even though they have been present in a milder form since she came to our home at age 34months. The first few years were just devoted to keeping her alive. I feel like this has put her so far behind in everything. Consider me a beginner and tell me what I don't know that I don't know. Thanks. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2010 Report Share Posted November 16, 2010 Have you considered biomedical treatment? Sent from my iPhoneOn Nov 16, 2010, at 3:53 PM, drissia wright <ritzywright@...> wrote: I live in NC. My son is 18 and last year started having SIB, then aggression toward parents. It seemed to me that he was having pain. It became more frequent through the spring and summer months. We found that he had impacted wisdom teeth and had them removed. As long as he was on pain meds and antibiotics he was his old sweet self. All the doctors knew to do was drug him. I noticed that ibuprophen would lessen or stop the behaviors if given in time before the meltdown. We have a family history of migraines, even though I don't have them. Also, I suspect that my husband has migraines that he deems sinuses. Our son is now under the care of a pediatric neurologist that he went to when he was 10. He is on Abilify and prozac and klonopin. They tried a trial of Elavil with him, but he never got up to the maximum dose. At that point the pediatrician had him on Risperdal for the behaviors. We had an MRI and an EEG that showed no abnormalities. Pediatric neurologists wouldn't see him because of his age and adult neurologists wouldn't treat him for the autism. Now we are left with a drugged 18 year old that has side effects an adverse reactions to the drugs. Is there anything we can do to help him? Drissia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2010 Report Share Posted November 16, 2010 Mon son's SIB and aggression also seem to start from internal triggers such as pain or maybe miniseizures. We also thought maybe cluster headaches? After a huge effort with neurologists, psychrists, neuropsycho hospital, tests, drugs, etc I ended up holding an empty bag. No answers and no improvement. In fact it kept getting worse. Understand our ABA program wasn't solving it either. Finally I turned to alternative medicine. I think several things helped but the big one was Neurotherapy. He's a different kid and those internal triggers, I just don't see them any more. His ABA program started working again and he's happy again. Recently I've written a few posts on neurotherapy in this group. Read those if you are interested. If you want to talk, call me. I really want to help families that are living in the nightmare of SIB. I thank God that he led us to the right solution. I got my son back. He's still has very significant autism but I don't mind that at all. After living with violence every day for 5 years, I feel like I'm on vacation now. Jill 907-775-2244 > > I live in NC. My son is 18 and last year started having SIB, then aggression toward parents. It seemed to me that he was having pain. It became more frequent through the spring and summer months. We found that he had impacted wisdom teeth and had them removed. As long as he was on pain meds and antibiotics he was his old sweet self. > > All the doctors knew to do was drug him. I noticed that ibuprophen would lessen or stop the behaviors if given in time before the meltdown. We have a family history of migraines, even though I don't have them. Also, I suspect that my husband has migraines that he deems sinuses. Our son is now under the care of a pediatric neurologist that he went to when he was 10. He is on Abilify and prozac and klonopin. They tried a trial of Elavil with him, but he never got up to the maximum dose. At that point the pediatrician had him on Risperdal for the behaviors. > > We had an MRI and an EEG that showed no abnormalities. Pediatric neurologists wouldn't see him because of his age and adult neurologists wouldn't treat him for the autism. Now we are left with a drugged 18 year old that has side effects an adverse reactions to the drugs. Is there anything we can do to help him? > > Drissia > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2010 Report Share Posted November 17, 2010 How do I look for neurotherapy or even alternative medicine? Is it the same as integrative or homeopathy? Thanks. From: Jill <jgmangus@...>Subject: Re: Introductionautism Date: Tuesday, November 16, 2010, 6:57 PM Mon son's SIB and aggression also seem to start from internal triggers such as pain or maybe miniseizures. We also thought maybe cluster headaches? After a huge effort with neurologists, psychrists, neuropsycho hospital, tests, drugs, etc I ended up holding an empty bag. No answers and no improvement. In fact it kept getting worse. Understand our ABA program wasn't solving it either.Finally I turned to alternative medicine. I think several things helped but the big one was Neurotherapy. He's a different kid and those internal triggers, I just don't see them any more. His ABA program started working again and he's happy again. Recently I've written a few posts on neurotherapy in this group. Read those if you are interested. If you want to talk, call me. I really want to help families that are living in the nightmare of SIB. I thank God that he led us to the right solution. I got my son back. He's still has very significant autism but I don't mind that at all. After living with violence every day for 5 years, I feel like I'm on vacation now.Jill907-775-2244>> I live in NC. My son is 18 and last year started having SIB, then aggression toward parents. It seemed to me that he was having pain. It became more frequent through the spring and summer months. We found that he had impacted wisdom teeth and had them removed. As long as he was on pain meds and antibiotics he was his old sweet self. > > All the doctors knew to do was drug him. I noticed that ibuprophen would lessen or stop the behaviors if given in time before the meltdown. We have a family history of migraines, even though I don't have them. Also, I suspect that my husband has migraines that he deems sinuses. Our son is now under the care of a pediatric neurologist that he went to when he was 10. He is on Abilify and prozac and klonopin. They tried a trial of Elavil with him, but he never got up to the maximum dose. At that point the pediatrician had him on Risperdal for the behaviors.> > We had an MRI and an EEG that showed no abnormalities. Pediatric neurologists wouldn't see him because of his age and adult neurologists wouldn't treat him for the autism. Now we are left with a drugged 18 year old that has side effects an adverse reactions to the drugs. Is there anything we can do to help him?> > Drissia> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2010 Report Share Posted November 17, 2010 Yes. I have looked on line and started some things on my own. I am now looking for a Dan doctor, but there are none in the area. Problem is I need guidance with this too. I have bits and pieces but not enough knowledge to feel confident about it. Right now he is on vitamins, probiotics, and CLO once a day. I know that is not enough, but I don't really know where to go or what to give for the behaviors. I live in NC. My son is 18 and last year started having SIB, then aggression toward parents. It seemed to me that he was having pain. It became more frequent through the spring and summer months. We found that he had impacted wisdom teeth and had them removed. As long as he was on pain meds and antibiotics he was his old sweet self. All the doctors knew to do was drug him. I noticed that ibuprophen would lessen or stop the behaviors if given in time before the meltdown. We have a family history of migraines, even though I don't have them. Also, I suspect that my husband has migraines that he deems sinuses. Our son is now under the care of a pediatric neurologist that he went to when he was 10. He is on Abilify and prozac and klonopin. They tried a trial of Elavil with him, but he never got up to the maximum dose. At that point the pediatrician had him on Risperdal for the behaviors.We had an MRI and an EEG that showed no abnormalities. Pediatric neurologists wouldn't see him because of his age and adult neurologists wouldn't treat him for the autism. Now we are left with a drugged 18 year old that has side effects an adverse reactions to the drugs. Is there anything we can do to help him?Drissia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2010 Report Share Posted November 17, 2010 I know where you are coming from. We're low on services here too (Alaska) but finally a naturopath in our area went to a DAN conference and started treating autistic kids. When the normal biomedical treatments didn't help my son, he did the research and decided to try neurotherapy. Unfortunately my insurance doesn't pay so I've had to do some rework on my budget to make this happen. Do some internet searches for neurofeedback or neurotherapy. Then search on other buzz words. Our doctor is associated with Crossroads Institute. http://www.crossroadsinstitute.org/home.html I will pray that God will provide a resource for you. It's not too late. My son is 15. He's showing very good improvements. Jill > > > > >  > > I live in NC. My son is 18 and last year started having SIB, then aggression toward parents. It seemed to me that he was having pain. It became more frequent through the spring and summer months. We found that he had impacted wisdom teeth and had them removed. As long as he was on pain meds and antibiotics he was his old sweet self. > > All the doctors knew to do was drug him. I noticed that ibuprophen would lessen or stop the behaviors if given in time before the meltdown. We have a family history of migraines, even though I don't have them. Also, I suspect that my husband has migraines that he deems sinuses. Our son is now under the care of a pediatric neurologist that he went to when he was 10. He is on Abilify and prozac and klonopin. They tried a trial of Elavil with him, but he never got up to the maximum dose. At that point the pediatrician had him on Risperdal for the behaviors. > > We had an MRI and an EEG that showed no abnormalities. Pediatric neurologists wouldn't see him because of his age and adult neurologists wouldn't treat him for the autism. Now we are left with a drugged 18 year old that has side effects an adverse reactions to the drugs. Is there anything we can do to help him? > > Drissia > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2010 Report Share Posted November 17, 2010 I would recommend you check out the TACA website and group. I am just starting this stuff too, so I can't recommend specific things. I would definitely recommend the book "Special needs kids eat right" Judy Converse. She has a list by symptom, and it is easy to understand with common sense approach to nutritional health. I've learned a lot just by reading others' posts on the TACA group. Sent from my iPhoneOn Nov 16, 2010, at 5:08 PM, drissia wright <ritzywright@...> wrote: Yes. I have looked on line and started some things on my own. I am now looking for a Dan doctor, but there are none in the area. Problem is I need guidance with this too. I have bits and pieces but not enough knowledge to feel confident about it. Right now he is on vitamins, probiotics, and CLO once a day. I know that is not enough, but I don't really know where to go or what to give for the behaviors. I live in NC. My son is 18 and last year started having SIB, then aggression toward parents. It seemed to me that he was having pain. It became more frequent through the spring and summer months. We found that he had impacted wisdom teeth and had them removed. As long as he was on pain meds and antibiotics he was his old sweet self. All the doctors knew to do was drug him. I noticed that ibuprophen would lessen or stop the behaviors if given in time before the meltdown. We have a family history of migraines, even though I don't have them. Also, I suspect that my husband has migraines that he deems sinuses. Our son is now under the care of a pediatric neurologist that he went to when he was 10. He is on Abilify and prozac and klonopin. They tried a trial of Elavil with him, but he never got up to the maximum dose. At that point the pediatrician had him on Risperdal for the behaviors.We had an MRI and an EEG that showed no abnormalities. Pediatric neurologists wouldn't see him because of his age and adult neurologists wouldn't treat him for the autism. Now we are left with a drugged 18 year old that has side effects an adverse reactions to the drugs. Is there anything we can do to help him?Drissia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2010 Report Share Posted November 18, 2010 I am the grandmother of an 18 year old grandson. He has had SIB and aggression. He isn't on any meds. All the meds made him worse. His SIB consisted of once in awhile biting himself. It has been several years since Karac has attacked me. I have learned to avoid him when he is agitated and he has learned to do the things that calm him down. He will go outside and pace; he will go to his room until he calms down; he will ask for one of his comfort foods and if he is having a really hard time calming down he will ask for a shower or a bath. An Epson Salt bath always works. Before Karac and I both learned how to take care of ourselves I had many many times of being so afraid that I would lock myself in the bathroom. Pat K Introduction I live in NC. My son is 18 and last year started having SIB, then aggression toward parents. It seemed to me that he was having pain. It became more frequent through the spring and summer months. We found that he had impacted wisdom teeth and had them removed. As long as he was on pain meds and antibiotics he was his old sweet self. All the doctors knew to do was drug him. I noticed that ibuprophen would lessen or stop the behaviors if given in time before the meltdown. We have a family history of migraines, even though I don't have them. Also, I suspect that my husband has migraines that he deems sinuses. Our son is now under the care of a pediatric neurologist that he went to when he was 10. He is on Abilify and prozac and klonopin. They tried a trial of Elavil with him, but he never got up to the maximum dose. At that point the pediatrician had him on Risperdal for the behaviors. We had an MRI and an EEG that showed no abnormalities. Pediatric neurologists wouldn't see him because of his age and adult neurologists wouldn't treat him for the autism. Now we are left with a drugged 18 year old that has side effects an adverse reactions to the drugs. Is there anything we can do to help him? Drissia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2010 Report Share Posted November 18, 2010 From: drissia wright <ritzywright@...>autism Sent: Tue, November 16, 2010 6:08:19 PMSubject: Re: Introduction Yes. I have looked on line and started some things on my own. I am now looking for a Dan doctor, but there are none in the area. Problem is I need guidance with this too. I have bits and pieces but not enough knowledge to feel confident about it. Right now he is on vitamins, probiotics, and CLO once a day. I know that is not enough, but I don't really know where to go or what to give for the behaviors. I live in NC. My son is 18 and last year started having SIB, then aggression toward parents. It seemed to me that he was having pain. It became more frequent through the spring and summer months. We found that he had impacted wisdom teeth and had them removed. As long as he was on pain meds and antibiotics he was his old sweet self. All the doctors knew to do was drug him. I noticed that ibuprophen would lessen or stop the behaviors if given in time before the meltdown. We have a family history of migraines, even though I don't have them. Also, I suspect that my husband has migraines that he deems sinuses. Our son is now under the care of a pediatric neurologist that he went to when he was 10. He is on Abilify and prozac and klonopin. They tried a trial of Elavil with him, but he never got up to the maximum dose. At that point the pediatrician had him on Risperdal for the behaviors.We had an MRI and an EEG that showed no abnormalities. Pediatric neurologists wouldn't see him because of his age and adult neurologists wouldn't treat him for the autism. Now we are left with a drugged 18 year old that has side effects an adverse reactions to the drugs. Is there anything we can do to help him?Drissia Where do you live? There should be a doctor to help you. Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2010 Report Share Posted November 18, 2010 Oh. I am so sorry. I do know how that feels. My son went through some years of biting his hand when he got frustrated. so we let him wear gloves. Worked for a long time. Then he started banging his head in his room, then last year against the tv or computer screen. I had asked his doctor about behavioral therapy. Said there was none. The docs said it sounded like temporal lobe seizures, so the MRI and the EEG were done last spring. I still think he is having some kind of pain. He has gut issues and a family history of migraines, as well as bad allergies and supersensitive hearing. He can see dust in the air. Unfortunately, he has no comfort foods, no calming techniques and hates a bath worse than anything. Has a phobia about water. The only thing left was the drugs. The anxiety has tripled. He chews on his lip, licks his chin, plucks out his beard. When he was on an ssri previously for anxiety he pulled out his eyelashes and eyebrows. That was during the hand biting stage. I do rub magnesium cream on his feet at night. From: mother <pkuenstler@...>Subject: Re: Introductionautism Date: Wednesday, November 17, 2010, 11:40 PM I am the grandmother of an 18 year old grandson. He has had SIB and aggression. He isn't on any meds. All the meds made him worse. His SIB consisted of once in awhile biting himself. It has been several years since Karac has attacked me. I have learned to avoid him when he is agitated and he has learned to do the things that calm him down. He will go outside and pace; he will go to his room until he calms down; he will ask for one of his comfort foods and if he is having a really hard time calming down he will ask for a shower or a bath. An Epson Salt bath always works. Before Karac and I both learned how to take care of ourselves I had many many times of being so afraid that I would lock myself in the bathroom. Pat K Introduction I live in NC. My son is 18 and last year started having SIB, then aggression toward parents. It seemed to me that he was having pain. It became more frequent through the spring and summer months. We found that he had impacted wisdom teeth and had them removed. As long as he was on pain meds and antibiotics he was his old sweet self. All the doctors knew to do was drug him. I noticed that ibuprophen would lessen or stop the behaviors if given in time before the meltdown. We have a family history of migraines, even though I don't have them. Also, I suspect that my husband has migraines that he deems sinuses. Our son is now under the care of a pediatric neurologist that he went to when he was 10. He is on Abilify and prozac and klonopin. They tried a trial of Elavil with him, but he never got up to the maximum dose. At that point the pediatrician had him on Risperdal for the behaviors.We had an MRI and an EEG that showed no abnormalities. Pediatric neurologists wouldn't see him because of his age and adult neurologists wouldn't treat him for the autism. Now we are left with a drugged 18 year old that has side effects an adverse reactions to the drugs. Is there anything we can do to help him?Drissia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2010 Report Share Posted November 18, 2010 I don't understand why there could be no behavioral therapy. Everything that karac has learned has been with ABA. Pat K Introduction I live in NC. My son is 18 and last year started having SIB, then aggression toward parents. It seemed to me that he was having pain. It became more frequent through the spring and summer months. We found that he had impacted wisdom teeth and had them removed. As long as he was on pain meds and antibiotics he was his old sweet self. All the doctors knew to do was drug him. I noticed that ibuprophen would lessen or stop the behaviors if given in time before the meltdown. We have a family history of migraines, even though I don't have them. Also, I suspect that my husband has migraines that he deems sinuses. Our son is now under the care of a pediatric neurologist that he went to when he was 10. He is on Abilify and prozac and klonopin. They tried a trial of Elavil with him, but he never got up to the maximum dose. At that point the pediatrician had him on Risperdal for the behaviors. We had an MRI and an EEG that showed no abnormalities. Pediatric neurologists wouldn't see him because of his age and adult neurologists wouldn't treat him for the autism. Now we are left with a drugged 18 year old that has side effects an adverse reactions to the drugs. Is there anything we can do to help him? Drissia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2010 Report Share Posted November 18, 2010 I don't know either. I live in a small town in NC. The doc says there are no behavior therapist here worth anything. He says to go to Charlotte and they are based on talk groups. They don't know what to do with Autistic people who can't talk. From: mother <pkuenstler@...>Subject: Re: Introductionautism Date: Wednesday, November 17, 2010, 11:40 PM I am the grandmother of an 18 year old grandson. He has had SIB and aggression. He isn't on any meds. All the meds made him worse. His SIB consisted of once in awhile biting himself. It has been several years since Karac has attacked me. I have learned to avoid him when he is agitated and he has learned to do the things that calm him down. He will go outside and pace; he will go to his room until he calms down; he will ask for one of his comfort foods and if he is having a really hard time calming down he will ask for a shower or a bath. An Epson Salt bath always works. Before Karac and I both learned how to take care of ourselves I had many many times of being so afraid that I would lock myself in the bathroom. Pat K Introduction I live in NC. My son is 18 and last year started having SIB, then aggression toward parents. It seemed to me that he was having pain. It became more frequent through the spring and summer months. We found that he had impacted wisdom teeth and had them removed. As long as he was on pain meds and antibiotics he was his old sweet self. All the doctors knew to do was drug him. I noticed that ibuprophen would lessen or stop the behaviors if given in time before the meltdown. We have a family history of migraines, even though I don't have them. Also, I suspect that my husband has migraines that he deems sinuses. Our son is now under the care of a pediatric neurologist that he went to when he was 10. He is on Abilify and prozac and klonopin. They tried a trial of Elavil with him, but he never got up to the maximum dose. At that point the pediatrician had him on Risperdal for the behaviors.We had an MRI and an EEG that showed no abnormalities. Pediatric neurologists wouldn't see him because of his age and adult neurologists wouldn't treat him for the autism. Now we are left with a drugged 18 year old that has side effects an adverse reactions to the drugs. Is there anything we can do to help him?Drissia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2010 Report Share Posted November 18, 2010 Hi Drissia,There are a number of board certified behavior analysts in NC. Go to www.bacb.com and click on "consumer information" on the left. You can enter your zip code, city and/or state and a list of behavior analysts will pop up, along with their location.HTH,Heidi Introduction I live in NC. My son is 18 and last year started having SIB, then aggression toward parents. It seemed to me that he was having pain. It became more frequent through the spring and summer months. We found that he had impacted wisdom teeth and had them removed. As long as he was on pain meds and antibiotics he was his old sweet self. All the doctors knew to do was drug him. I noticed that ibuprophen would lessen or stop the behaviors if given in time before the meltdown. We have a family history of migraines, even though I don't have them. Also, I suspect that my husband has migraines that he deems sinuses. Our son is now under the care of a pediatric neurologist that he went to when he was 10. He is on Abilify and prozac and klonopin. They tried a trial of Elavil with him, but he never got up to the maximum dose. At that point the pediatrician had him on Risperdal for the behaviors.We had an MRI and an EEG that showed no abnormalities. Pediatric neurologists wouldn't see him because of his age and adult neurologists wouldn't treat him for the autism. Now we are left with a drugged 18 year old that has side effects an adverse reactions to the drugs. Is there anything we can do to help him?Drissia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2010 Report Share Posted November 19, 2010 Google "bcba certification" you should find a website like bcab.comYou can search by stateSent from my iPhoneOn Nov 18, 2010, at 3:18 PM, drissia wright <ritzywright@...> wrote: I don't know either. I live in a small town in NC. The doc says there are no behavior therapist here worth anything. He says to go to Charlotte and they are based on talk groups. They don't know what to do with Autistic people who can't talk. From: mother <pkuenstler@...>Subject: Re: Introductionautism Date: Wednesday, November 17, 2010, 11:40 PM I am the grandmother of an 18 year old grandson. He has had SIB and aggression. He isn't on any meds. All the meds made him worse. His SIB consisted of once in awhile biting himself. It has been several years since Karac has attacked me. I have learned to avoid him when he is agitated and he has learned to do the things that calm him down. He will go outside and pace; he will go to his room until he calms down; he will ask for one of his comfort foods and if he is having a really hard time calming down he will ask for a shower or a bath. An Epson Salt bath always works. Before Karac and I both learned how to take care of ourselves I had many many times of being so afraid that I would lock myself in the bathroom. Pat K Introduction I live in NC. My son is 18 and last year started having SIB, then aggression toward parents. It seemed to me that he was having pain. It became more frequent through the spring and summer months. We found that he had impacted wisdom teeth and had them removed. As long as he was on pain meds and antibiotics he was his old sweet self. All the doctors knew to do was drug him. I noticed that ibuprophen would lessen or stop the behaviors if given in time before the meltdown. We have a family history of migraines, even though I don't have them. Also, I suspect that my husband has migraines that he deems sinuses. Our son is now under the care of a pediatric neurologist that he went to when he was 10. He is on Abilify and prozac and klonopin. They tried a trial of Elavil with him, but he never got up to the maximum dose. At that point the pediatrician had him on Risperdal for the behaviors.We had an MRI and an EEG that showed no abnormalities. Pediatric neurologists wouldn't see him because of his age and adult neurologists wouldn't treat him for the autism. Now we are left with a drugged 18 year old that has side effects an adverse reactions to the drugs. Is there anything we can do to help him?Drissia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2010 Report Share Posted November 19, 2010 Thanks. I found one just a few miles from me. From: mother <pkuenstler@...>Subject: Re: Introductionautism Date: Wednesday, November 17, 2010, 11:40 PM I am the grandmother of an 18 year old grandson. He has had SIB and aggression. He isn't on any meds. All the meds made him worse. His SIB consisted of once in awhile biting himself. It has been several years since Karac has attacked me. I have learned to avoid him when he is agitated and he has learned to do the things that calm him down. He will go outside and pace; he will go to his room until he calms down; he will ask for one of his comfort foods and if he is having a really hard time calming down he will ask for a shower or a bath. An Epson Salt bath always works. Before Karac and I both learned how to take care of ourselves I had many many times of being so afraid that I would lock myself in the bathroom. Pat K Introduction I live in NC. My son is 18 and last year started having SIB, then aggression toward parents. It seemed to me that he was having pain. It became more frequent through the spring and summer months. We found that he had impacted wisdom teeth and had them removed. As long as he was on pain meds and antibiotics he was his old sweet self. All the doctors knew to do was drug him. I noticed that ibuprophen would lessen or stop the behaviors if given in time before the meltdown. We have a family history of migraines, even though I don't have them. Also, I suspect that my husband has migraines that he deems sinuses. Our son is now under the care of a pediatric neurologist that he went to when he was 10. He is on Abilify and prozac and klonopin. They tried a trial of Elavil with him, but he never got up to the maximum dose. At that point the pediatrician had him on Risperdal for the behaviors.We had an MRI and an EEG that showed no abnormalities. Pediatric neurologists wouldn't see him because of his age and adult neurologists wouldn't treat him for the autism. Now we are left with a drugged 18 year old that has side effects an adverse reactions to the drugs. Is there anything we can do to help him?Drissia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2010 Report Share Posted November 19, 2010 There is a pediatric behavioral health clinic at Duke in Durham. If you are close enough to get an appointment you could get some good advice. > > > From: mother <pkuenstler@...> > Subject: Re: Introduction > autism > Date: Wednesday, November 17, 2010, 11:40 PM > > >  > > > I am the grandmother of an 18 year old grandson. He has had SIB and aggression. He isn't on any meds. All the meds made him worse. His SIB consisted of once in awhile biting himself. It has been several years since Karac has attacked me. I have learned to avoid him when he is agitated and he has learned to do the things that calm him down. He will go outside and pace; he will go to his room until he calms down; he will ask for one of his comfort foods and if he is having a really hard time calming down he will ask for a shower or a bath. An Epson Salt bath always works. >  > Before Karac and I both learned how to take care of ourselves I had many many times of being so afraid that I would lock myself in the bathroom. Pat K > > > > > > Introduction > > >  > > > > I live in NC. My son is 18 and last year started having SIB, then aggression toward parents. It seemed to me that he was having pain. It became more frequent through the spring and summer months. We found that he had impacted wisdom teeth and had them removed. As long as he was on pain meds and antibiotics he was his old sweet self. > > All the doctors knew to do was drug him. I noticed that ibuprophen would lessen or stop the behaviors if given in time before the meltdown. We have a family history of migraines, even though I don't have them. Also, I suspect that my husband has migraines that he deems sinuses. Our son is now under the care of a pediatric neurologist that he went to when he was 10. He is on Abilify and prozac and klonopin. They tried a trial of Elavil with him, but he never got up to the maximum dose. At that point the pediatrician had him on Risperdal for the behaviors. > > We had an MRI and an EEG that showed no abnormalities. Pediatric neurologists wouldn't see him because of his age and adult neurologists wouldn't treat him for the autism. Now we are left with a drugged 18 year old that has side effects an adverse reactions to the drugs. Is there anything we can do to help him? > > Drissia > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2010 Report Share Posted November 19, 2010 My 11 1/2 yo son has had ABA out the whazoo and he still has SIBs and aggression. ABA does a lot but if there is an underlying medical condition, it's not going to touch it. Drissia, it seems like you've investigated a lot in terms of what is causing his pain. I encourage you to keep trying to find out if something medical is causing the behavior. The fact that you suspect he is in pain... well, " they " always say we know our kids best, don't they? The fact that ibuprofen helps may mean that he has an inflammation somewhere, as it is an anti-inflammatory. We've had two episodes of really bad aggression and SIBs, once in the spring and we're hopefully coming off of one right now in the fall. Antibiotics and an immuno globulin help significantly decrease the behaviors but we don't really know what we're treating. We just know that the intervention works. Risperdral didn't touch the behaviors, nor did the very comprehensive behavioral plan put in place by the school. Drissia, please let me know if you have any success with finding out what is causing your son's behaviors since it sounds similar to my son's. I'm on a quest to figure out what the medical condition is underlying my son's recent behavior. I didn't see in the thread, do you have DAN! doctor? They might have a new perspective for you. > > > From: mother <pkuenstler@...> > Subject: Re: Introduction > autism > Date: Wednesday, November 17, 2010, 11:40 PM > > >  > > > I am the grandmother of an 18 year old grandson. He has had SIB and aggression. He isn't on any meds. All the meds made him worse. His SIB consisted of once in awhile biting himself. It has been several years since Karac has attacked me. I have learned to avoid him when he is agitated and he has learned to do the things that calm him down. He will go outside and pace; he will go to his room until he calms down; he will ask for one of his comfort foods and if he is having a really hard time calming down he will ask for a shower or a bath. An Epson Salt bath always works. >  > Before Karac and I both learned how to take care of ourselves I had many many times of being so afraid that I would lock myself in the bathroom. Pat K > > > > > > Introduction > > >  > > > > I live in NC. My son is 18 and last year started having SIB, then aggression toward parents. It seemed to me that he was having pain. It became more frequent through the spring and summer months. We found that he had impacted wisdom teeth and had them removed. As long as he was on pain meds and antibiotics he was his old sweet self. > > All the doctors knew to do was drug him. I noticed that ibuprophen would lessen or stop the behaviors if given in time before the meltdown. We have a family history of migraines, even though I don't have them. Also, I suspect that my husband has migraines that he deems sinuses. Our son is now under the care of a pediatric neurologist that he went to when he was 10. He is on Abilify and prozac and klonopin. They tried a trial of Elavil with him, but he never got up to the maximum dose. At that point the pediatrician had him on Risperdal for the behaviors. > > We had an MRI and an EEG that showed no abnormalities. Pediatric neurologists wouldn't see him because of his age and adult neurologists wouldn't treat him for the autism. Now we are left with a drugged 18 year old that has side effects an adverse reactions to the drugs. Is there anything we can do to help him? > > Drissia > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2010 Report Share Posted November 19, 2010 No, we don't have a Dan doctor. I've looked for one but the nearest to me is in Ashville, a pretty long drive. I called a few years back and asked if they took insurance. They didn't and the receptionist said I needed to have several thousand dollars in hand. Since we didn't have the money, it pretty much stopped there. From: Delilah <mary_alisa_rock@...>Subject: Re: Introductionautism Date: Friday, November 19, 2010, 10:44 AM My 11 1/2 yo son has had ABA out the whazoo and he still has SIBs and aggression. ABA does a lot but if there is an underlying medical condition, it's not going to touch it. Drissia, it seems like you've investigated a lot in terms of what is causing his pain. I encourage you to keep trying to find out if something medical is causing the behavior. The fact that you suspect he is in pain... well, "they" always say we know our kids best, don't they? The fact that ibuprofen helps may mean that he has an inflammation somewhere, as it is an anti-inflammatory.We've had two episodes of really bad aggression and SIBs, once in the spring and we're hopefully coming off of one right now in the fall. Antibiotics and an immuno globulin help significantly decrease the behaviors but we don't really know what we're treating. We just know that the intervention works. Risperdral didn't touch the behaviors, nor did the very comprehensive behavioral plan put in place by the school.Drissia, please let me know if you have any success with finding out what is causing your son's behaviors since it sounds similar to my son's. I'm on a quest to figure out what the medical condition is underlying my son's recent behavior. I didn't see in the thread, do you have DAN! doctor? They might have a new perspective for you.> > > From: mother <pkuenstler@...>> Subject: Re: Introduction> autism > Date: Wednesday, November 17, 2010, 11:40 PM> > >  > > > I am the grandmother of an 18 year old grandson. He has had SIB and aggression. He isn't on any meds. All the meds made him worse. His SIB consisted of once in awhile biting himself. It has been several years since Karac has attacked me. I have learned to avoid him when he is agitated and he has learned to do the things that calm him down. He will go outside and pace; he will go to his room until he calms down; he will ask for one of his comfort foods and if he is having a really hard time calming down he will ask for a shower or a bath. An Epson Salt bath always works. >  > Before Karac and I both learned how to take care of ourselves I had many many times of being so afraid that I would lock myself in the bathroom. Pat K> > > > > > Introduction> > >  > > > > I live in NC. My son is 18 and last year started having SIB, then aggression toward parents. It seemed to me that he was having pain. It became more frequent through the spring and summer months. We found that he had impacted wisdom teeth and had them removed. As long as he was on pain meds and antibiotics he was his old sweet self. > > All the doctors knew to do was drug him. I noticed that ibuprophen would lessen or stop the behaviors if given in time before the meltdown. We have a family history of migraines, even though I don't have them. Also, I suspect that my husband has migraines that he deems sinuses. Our son is now under the care of a pediatric neurologist that he went to when he was 10. He is on Abilify and prozac and klonopin. They tried a trial of Elavil with him, but he never got up to the maximum dose. At that point the pediatrician had him on Risperdal for the behaviors.> > We had an MRI and an EEG that showed no abnormalities. Pediatric neurologists wouldn't see him because of his age and adult neurologists wouldn't treat him for the autism. Now we are left with a drugged 18 year old that has side effects an adverse reactions to the drugs. Is there anything we can do to help him?> > Drissia> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2012 Report Share Posted May 17, 2012 Hello, my name is . I served as first full time NFP Coordinator in the Diocese of Madison from 2007-09 until my family relocated. I've been blogging about NFP, fertility and family life issues at NFPworksblog.com since 2007, and currently serve as the Mission Development Coordinator for the Edith Stein Foundation. Thanks to Dr. Dominic Pedulla for introducing me to this list. -- Real Love. Real Natural.Natural Family Planning Blog Quote Link to comment Share on other sites More sharing options...
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