Guest guest Posted March 15, 2010 Report Share Posted March 15, 2010 Margie, I am the grandmother of a 17 year old autistic boy. He was very much like your daughter in that he knew his ABC's and could count before he was two; he would cry or scream when we took him to public places. When he was three I started doing an ABA program with him and he learned to be calm and quiet in public places. When he started to school his mother put him on Ritalin and that made him wild; no meds have helped Karac and he is no longer on any meds. The only thing that helped was ABA therapy. Karac had a pediatric psy. who put him on a couple of meds that caused him to be aggressive and gave him Tardive Dyskinesia; so I don't have a lot of confidence in doctors. I understand what you are going through. Pat K Desperate for answers Hi, I am the grandmother of an almost four year old little girl who has severe problems and I am looking for some advice. Teiana was diagnosed with herpes encephalitis when she was a week old and was in DeVos Children's hospital for five weeks. She has some damage in her temporal lobes. I became concerned about Teiana when she started showing signs of Autism, walking and running in circles for long periods of time, spinning things, not talking, etc. The neurologist is no help and says he can do nothing unless she starts having seizures. We have had psychiatrists working with her with our local Community Mental Health here in Muskegon. The psychiatrist doesn't think Teiana is autistic, he thinks she is ADDHD. She doesn't talk, but knows her ABC's, can count to ten, she can say the alphabet just saying every other letter, she will sing the end word in every line of a song we sing with her. She will look us in the eye, and loves to interact, so that is not typical of Autism. They first put her on Trileptal (oxcarbazepine) one teaspoon morning and night to help her sleep and calm her down. That did help her fall asleep and sleep longer than usual. Then they added Ritalin which didn't seem to do anything at all. She is large for almost four--she weighs 55 pounds. They've increased the Ritalin to 20 mg. three times a day, added Tenex three times a day plus bedtime. Now we have a child that just cries most of the time. The worst thing is the aggression she is showing. She has always (even before meds) scratched and bit and pinched us, but now it is so much worse. We can be playing with her and all of a sudden she reaches up and scratches our faces. We have tried time out, and everything else--nothing works. It is almost like she is unaware of what she is doing. She doesn't have a temper, never throws temper tantrums and easily sits in time out, just to get up and scratch us again. Does anyone have any suggestions for us? My daughter just called...she is past her breaking point because she took Teiana to Walmart and she cried and scratched her the whole time. We cannot take her anywhere, not out to eat or anything because she just cries. I think we need a new doctor because this psychiatrist is telling us there is nothing he can do for the aggression. Is there a good doctor in Grand Rapids that anyone knows about? Does anyone have any help for us? Thank you so much....Margie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2010 Report Share Posted March 15, 2010 I have no info for you as far as local help but can tell you that you are doing the right thing by asking questions...just keep asking....you will find the help she needs. I do not understand a neuro that wont help unless she has seizures!!! stupid man! I have no experience with meds but know enough to know that they can be more harmful than helpful at times. You need to find the right doctor to help you thro this maze. That being said I would try an ABA approach to the behaviors and see what results that gives you. Maybe start with an ABC( Antecedent..Behavior..Consequence) chart and track her scratching. Over a couple of weeks I bet you will find a pattern and then will be able to help her target a more approapriate behavior. I would try reenforcing the positive behavior and ignoring the negative...I know ..easier said than done..LOL. Sometimes you have to be really quick to find some positive to reenforce but make it worth her while!! party time for "gentle hands"..or whatever term you choose. Oh I am sorry to ramble and be so disjointed but am rushing out the door and wanted to get something off to your quickly. Bottom line is dont get discouraged. The parents on this site will have lots of suggestions for you I am sure and together we will work thro this. Hang in there Desperate for answers Hi, I am the grandmother of an almost four year old little girl who has severe problems and I am looking for some advice. Teiana was diagnosed with herpes encephalitis when she was a week old and was in DeVos Children's hospital for five weeks. She has some damage in her temporal lobes. I became concerned about Teiana when she started showing signs of Autism, walking and running in circles for long periods of time, spinning things, not talking, etc. The neurologist is no help and says he can do nothing unless she starts having seizures. We have had psychiatrists working with her with our local Community Mental Health here in Muskegon. The psychiatrist doesn't think Teiana is autistic, he thinks she is ADDHD. She doesn't talk, but knows her ABC's, can count to ten, she can say the alphabet just saying every other letter, she will sing the end word in every line of a song we sing with her. She will look us in the eye, and loves to interact, so that is not typical of Autism. They first put her on Trileptal (oxcarbazepine) one teaspoon morning and night to help her sleep and calm her down. That did help her fall asleep and sleep longer than usual. Then they added Ritalin which didn't seem to do anything at all. She is large for almost four--she weighs 55 pounds. They've increased the Ritalin to 20 mg. three times a day, added Tenex three times a day plus bedtime. Now we have a child that just cries most of the time. The worst thing is the aggression she is showing. She has always (even before meds) scratched and bit and pinched us, but now it is so much worse. We can be playing with her and all of a sudden she reaches up and scratches our faces. We have tried time out, and everything else--nothing works. It is almost like she is unaware of what she is doing. She doesn't have a temper, never throws temper tantrums and easily sits in time out, just to get up and scratch us again. Does anyone have any suggestions for us? My daughter just called...she is past her breaking point because she took Teiana to Walmart and she cried and scratched her the whole time. We cannot take her anywhere, not out to eat or anything because she just cries. I think we need a new doctor because this psychiatrist is telling us there is nothing he can do for the aggression. Is there a good doctor in Grand Rapids that anyone knows about? Does anyone have any help for us? Thank you so much....Margie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2010 Report Share Posted March 16, 2010 Margie, Welcome! I am mom to JJ age 22 with autism. Sorry-but at that age JJ had some small sentences but knew the alfebet and would sing the end of songs too. The difference is that J didn't have agression......then. he got his at puberity. You might want to try the DAN! Dr. approch since she is so young. Lois Desperate for answers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2010 Report Share Posted March 16, 2010 I agree with Pat. Our son was on meds that just made it worse. when we got to med number 17 I told them we will stop everything. gradually we took him off and now have a young man who is much better to handle. he is 19 and lives in a residential school for autistic children. his gains are so huge. unbelievable. teachers and para's in the home could not believe brady when he was taken off his meds. there was a wonderful person under all that. he was super aggressive from the time he could reach out and touch us. it had more to do with having to touch things and experience them in a tactile way then with true aggression. he did have a temper however and we did not have a good way to handle it. anyway, this is getting long. just wanting to say that meds are not the answer for many of our kids . a good behavior therapist will be very helpful. Christiane Bayes From: pkuenstler@... Sent: Monday, March 15, 2010 9:22 AM autism Subject: Re: Desperate for answers Margie, I am the grandmother of a 17 year old autistic boy. He was very much like your daughter in that he knew his ABC's and could count before he was two; he would cry or scream when we took him to public places. When he was three I started doing an ABA program with him and he learned to be calm and quiet in public places. When he started to school his mother put him on Ritalin and that made him wild; no meds have helped Karac and he is no longer on any meds. The only thing that helped was ABA therapy. Karac had a pediatric psy. who put him on a couple of meds that caused him to be aggressive and gave him Tardive Dyskinesia; so I don't have a lot of confidence in doctors. I understand what you are going through. Pat K Desperate for answers Hi, I am the grandmother of an almost four year old little girl who has severe problems and I am looking for some advice. Teiana was diagnosed with herpes encephalitis when she was a week old and was in DeVos Children's hospital for five weeks. She has some damage in her temporal lobes. I became concerned about Teiana when she started showing signs of Autism, walking and running in circles for long periods of time, spinning things, not talking, etc. The neurologist is no help and says he can do nothing unless she starts having seizures. We have had psychiatrists working with her with our local Community Mental Health here in Muskegon. The psychiatrist doesn't think Teiana is autistic, he thinks she is ADDHD. She doesn't talk, but knows her ABC's, can count to ten, she can say the alphabet just saying every other letter, she will sing the end word in every line of a song we sing with her. She will look us in the eye, and loves to interact, so that is not typical of Autism. They first put her on Trileptal (oxcarbazepine) one teaspoon morning and night to help her sleep and calm her down. That did help her fall asleep and sleep longer than usual. Then they added Ritalin which didn't seem to do anything at all. She is large for almost four--she weighs 55 pounds. They've increased the Ritalin to 20 mg. three times a day, added Tenex three times a day plus bedtime. Now we have a child that just cries most of the time. The worst thing is the aggression she is showing. She has always (even before meds) scratched and bit and pinched us, but now it is so much worse. We can be playing with her and all of a sudden she reaches up and scratches our faces. We have tried time out, and everything else--nothing works. It is almost like she is unaware of what she is doing. She doesn't have a temper, never throws temper tantrums and easily sits in time out, just to get up and scratch us again. Does anyone have any suggestions for us? My daughter just called...she is past her breaking point because she took Teiana to Walmart and she cried and scratched her the whole time. We cannot take her anywhere, not out to eat or anything because she just cries. I think we need a new doctor because this psychiatrist is telling us there is nothing he can do for the aggression. Is there a good doctor in Grand Rapids that anyone knows about? Does anyone have any help for us? Thank you so much....Margie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2010 Report Share Posted March 16, 2010 My son became more aggressive/cried on Ritilin - in fact, he cried nonstop. He also has slight brain damage. My understanding is that organic brain damage makes meds even trickier - kids often have atypical reactions when they have brain damage, even if its slight. We have been told to stay away from stimulants absolutely. Our son has been helped by Risperdal - it has calmed his aggression - but your granddaughter may simply need to get off the ritilin and hopefully the aggression will stop or lessen. Re the autism concerns: she probably needs a full neuropsychological evaluation, which should be covered if she has health insurance. Even if she doesn't meet the criteria of full blown autism, she's probably PDD which is an important diagnosis as it guarantees certain interventions as she becomes school age (preschool too - sounds like she would qualify for speech/language therapy right now through your county's preschool services). Hope this helps - http://whenrainhurts.wordpress.com > > > Hi, I am the grandmother of an almost four year old little girl who has > severe problems and I am looking for some advice. Teiana was diagnosed with > herpes encephalitis when she was a week old and was in DeVos Children's > hospital for five weeks. She has some damage in her temporal lobes. I became > concerned about Teiana when she started showing signs of Autism, walking > and running in circles for long periods of time, spinning things, not > talking, etc. The neurologist is no help and says he can do nothing unless she > starts having seizures. We have had psychiatrists working with her with our > local Community Mental Health here in Muskegon. The psychiatrist doesn't > think Teiana is autistic, he thinks she is ADDHD. She doesn't talk, but > knows her ABC's, can count to ten, she can say the alphabet just saying every > other letter, she will sing the end word in every line of a song we sing > with her. She will look us in the eye, and loves to interact, so that is > not typical of Autism. They first put her on Trileptal (oxcarbazepine) one > teaspoon morning and night to help her sleep and calm her down. That did > help her fall asleep and sleep longer than usual. Then they added Ritalin > which didn't seem to do anything at all. She is large for almost four--she > weighs 55 pounds. They've increased the Ritalin to 20 mg. three times a > day, added Tenex three times a day plus bedtime. Now we have a child that > just cries most of the time. The worst thing is the aggression she is > showing. She has always (even before meds) scratched and bit and pinched us, but > now it is so much worse. We can be playing with her and all of a sudden > she reaches up and scratches our faces. We have tried time out, and > everything else--nothing works. It is almost like she is unaware of what she is > doing. She doesn't have a temper, never throws temper tantrums and easily > sits in time out, just to get up and scratch us again. Does anyone have any > suggestions for us? My daughter just called...she is past her breaking > point because she took Teiana to Walmart and she cried and scratched her the > whole time. We cannot take her anywhere, not out to eat or anything because > she just cries. I think we need a new doctor because this psychiatrist is > telling us there is nothing he can do for the aggression. Is there a good > doctor in Grand Rapids that anyone knows about? Does anyone have any help > for us? Thank you so much....Margie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2010 Report Share Posted March 17, 2010 Why not locate a behavioral pediatrician who can evaluate her, and also give you the referrals for all the areas of specialty she would need to be evaluated in? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2010 Report Share Posted March 18, 2010 Hello, I would think seriously about finding one of the best BioMed doctors available (Perhaps a DAN in your Area) and begin treatment. Judging from your post, you are relying on your traditional doctors who know next to nothing about Nutrition and Metabolism and will be clueless when it comes to intervening in the viral realm as well. Your description of what is " typical autism " may actually not be very accurate. My sons had much of the same symptomology and I have found that these days, there are " autisms " and not one autism that is neurological driven or clinically consistent. I have taken calculated risks with my 3 year old and 2 year old sons and have recovered one and halfway there with the other. Don't take my word for all of this...just go to the Autism One conference in May and talk to the parents and doctors who have recovered their kids. Their stories hold the seeds to your success. Also, you might consider that you have been afforded a gift in that your child is only 4. You have some time to intervene early while most parents get a late start and by then, regardless of neuroplasticity, they have lost out on many of the important developmental windows. Best of luck to you. > > > Hi, I am the grandmother of an almost four year old little girl who has > severe problems and I am looking for some advice. Teiana was diagnosed with > herpes encephalitis when she was a week old and was in DeVos Children's > hospital for five weeks. She has some damage in her temporal lobes. I became > concerned about Teiana when she started showing signs of Autism, walking > and running in circles for long periods of time, spinning things, not > talking, etc. The neurologist is no help and says he can do nothing unless she > starts having seizures. We have had psychiatrists working with her with our > local Community Mental Health here in Muskegon. The psychiatrist doesn't > think Teiana is autistic, he thinks she is ADDHD. She doesn't talk, but > knows her ABC's, can count to ten, she can say the alphabet just saying every > other letter, she will sing the end word in every line of a song we sing > with her. She will look us in the eye, and loves to interact, so that is > not typical of Autism. They first put her on Trileptal (oxcarbazepine) one > teaspoon morning and night to help her sleep and calm her down. That did > help her fall asleep and sleep longer than usual. Then they added Ritalin > which didn't seem to do anything at all. She is large for almost four--she > weighs 55 pounds. They've increased the Ritalin to 20 mg. three times a > day, added Tenex three times a day plus bedtime. Now we have a child that > just cries most of the time. The worst thing is the aggression she is > showing. She has always (even before meds) scratched and bit and pinched us, but > now it is so much worse. We can be playing with her and all of a sudden > she reaches up and scratches our faces. We have tried time out, and > everything else--nothing works. It is almost like she is unaware of what she is > doing. She doesn't have a temper, never throws temper tantrums and easily > sits in time out, just to get up and scratch us again. Does anyone have any > suggestions for us? My daughter just called...she is past her breaking > point because she took Teiana to Walmart and she cried and scratched her the > whole time. We cannot take her anywhere, not out to eat or anything because > she just cries. I think we need a new doctor because this psychiatrist is > telling us there is nothing he can do for the aggression. Is there a good > doctor in Grand Rapids that anyone knows about? Does anyone have any help > for us? Thank you so much....Margie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2010 Report Share Posted March 18, 2010 One more thing. I am taking a chance here because this is my second post on this board which is biased toward a behavioral approach but here goes. You probably should join a group that looks more at metabolic issues such as the ambd group or beyondgfcf group. By the nature of the interventions used on your child such as Ritalin and those other anxiolytics, I can tell your daughter has been relying on doctors with limited knowledge. Whenever you hear " We can not do anything else " this is your first clue that you are in the wrong place. YOU CAN ALWAYS DO SOMETHING ELSE.....and should. My children get both ABA and RDI so I believe strongly in behavioral intervention. However, such intervention is nearly useless on a child that is suffering metabolically. In most cases, employing a behavioral solution to a problem behavior makes sense to me and I do it. However, my 2 year old for a very long time would just strike out at his mother and I... not just when he was frustrated but at really awkward and seemingly senseless times. No amount of timeouts were going to be effective with him (and yes, we have been painfully consistent in our execution of those timeouts). He even learned to go to time out and sit quietly only to rise up and reflexively strike out again. It was not until we " cleared the fog " that he was able to link up that hitting another was not going to work for him. We hammered him with test after test, nutrient after nutrient, and rounds of chelation and IVIG. Now we have normal development again. Now we have a child who seems to have a grasp of himself within time and space. If your daughter cannot make it her job to save this kid, perhaps you can. For me, I have had to put aside advancing my career as a corporate and clinical psychologist, as well as put aside a possibility of finding love in order to handle the scourge of autism. My sense is that someone in your family will have to make similar sacrifices in order to find the appropriate solutions. A > > > Hi, I am the grandmother of an almost four year old little girl who has > severe problems and I am looking for some advice. Teiana was diagnosed with > herpes encephalitis when she was a week old and was in DeVos Children's > hospital for five weeks. She has some damage in her temporal lobes. I became > concerned about Teiana when she started showing signs of Autism, walking > and running in circles for long periods of time, spinning things, not > talking, etc. The neurologist is no help and says he can do nothing unless she > starts having seizures. We have had psychiatrists working with her with our > local Community Mental Health here in Muskegon. The psychiatrist doesn't > think Teiana is autistic, he thinks she is ADDHD. She doesn't talk, but > knows her ABC's, can count to ten, she can say the alphabet just saying every > other letter, she will sing the end word in every line of a song we sing > with her. She will look us in the eye, and loves to interact, so that is > not typical of Autism. They first put her on Trileptal (oxcarbazepine) one > teaspoon morning and night to help her sleep and calm her down. That did > help her fall asleep and sleep longer than usual. Then they added Ritalin > which didn't seem to do anything at all. She is large for almost four--she > weighs 55 pounds. They've increased the Ritalin to 20 mg. three times a > day, added Tenex three times a day plus bedtime. Now we have a child that > just cries most of the time. The worst thing is the aggression she is > showing. She has always (even before meds) scratched and bit and pinched us, but > now it is so much worse. We can be playing with her and all of a sudden > she reaches up and scratches our faces. We have tried time out, and > everything else--nothing works. It is almost like she is unaware of what she is > doing. She doesn't have a temper, never throws temper tantrums and easily > sits in time out, just to get up and scratch us again. Does anyone have any > suggestions for us? My daughter just called...she is past her breaking > point because she took Teiana to Walmart and she cried and scratched her the > whole time. We cannot take her anywhere, not out to eat or anything because > she just cries. I think we need a new doctor because this psychiatrist is > telling us there is nothing he can do for the aggression. Is there a good > doctor in Grand Rapids that anyone knows about? Does anyone have any help > for us? Thank you so much....Margie > Quote Link to comment Share on other sites More sharing options...
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