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| Name: curtis | Date: Aug 26th, 2006 9:48 AM |
| Karen, Thanks also for advicd about benadryl. We will also give it a try. Curt has sensations inside his brain every day. He also has a lot of noticeable facial tics and twitches. Curtis ↑ |
| Name: KAREN SCHIMPF | Date: Sep 3rd, 2006 2:31 PM |
| SUNDAY SEPT3,2006 10:15 am Hi Curtis and Family, Sorry I haven't written. Here is why. Cliff graduates next June 2007 and so I bought him a surprize dvd recorder/vcr combo and went tp hide it in the back of the hall closet. I reached into the crowded closet and when I tried to move the box in the corner, it was loaded with....termites! Did you here my scream? It was last fri ? No? My brother up in n.y. said he thought he heard me! To make a long story short, we had to pull everything out of the closet (can't believe how much fit in such a small space) and check out all the closets in the whole house, (including Cliff's room which he wants no one in) TALK ABOUT STRESS!!!!! How is Curtis and his brother doing? Is Curtis in a DAY PROGRAM? You wife needs the break I'm sure! Come next June if Cliff is not in a program, I'll be in big trouble. He vents on me and I'm done with that. We'll have to come up with a plan well in advance (not optional) At 60 I can't keep this up. Did you get to try out the clear liq.Benedryl yet? I've had to use it a number of times when Cliff been off from school and his stress level builds. We couldn't life in the same house with Cliff without it. Clifford's tremor/seizures or what ever they are seem to be getting more intense (right arm and now the right leg as well) When I'm sitting next to him I can feel it go through him, down the whole right side of his body! When I mentioned it to Cliff's doctor just this past fri. she looked at me as if I were from outer space. I'm tired of the doctors and their LACK OF KNOWLEDGE AND CONCERN! It's as though we are mute to them. Sorry about the venting but only another family going through the same thing would understand. Chins up Karen ↑ |
| Name: curtis | Date: Sep 9th, 2006 2:02 PM |
| Dear Karen, Sorry to hear about your termite problem. That must have been quick a shock. We had termite problem in our basement when we bought our house which was an older house some years ago. Here is a link for you that might help. http://www.nativeremedies.com/au tism-aspergers-rett-pdd.shtml Thi s is a company that sells various natural, non addictive, non side effect herbal type medications. We took a chance and bought the "Pure Calm" in liquid form. We are using this to detox our son Curt Jr. off the prescription drug Ativan that our family doctor prescribed which had the side effect of making Curt Jr. extremely aggressive and destructive around the house as I have told you about. Once we reduced his dosage of the ativan and substituted the Pure Calm for one of his dosages, he immediately stopped his aggressive and destructive behavior. Two psychiatrist agreed that the high dosage of the ativan was the culprit making him act in such a destruction, angry way. I was skeptical that the Pure Calm would work but took a chance and asked my son if it calmed him down a bit and helped him to sleep(we give him the pure calm at night) and he said it did calm him down a bit(a little bit is better than nothing and better than psychotropic drugs). He still has the "nervous, panic disorder triggers" but they seem to not be as disabling as before. We just took him down to Philadelphia to the neurological dept. of Jefferson Hospital in downtown Philadelphia. The doctor there believes Curt Jr. may have hidden seizure activity which is causing his panic disorder in the first place. We are awaiting results. We also have him scheduled for a visual EEG which takes a 7 day in hospital stay where he is hooked up to a visual EEG monitoring system, 24 hours for 7 days. They used this to find hidden seizure activity that may go unnoticed in a regular one hour EEG. Also because of our seeking help outside of our family doctor's opinion, this has caused a bit of a riff in our relationship with our family doctor who I can tell thinks that my wife and I are off the wall and gone over the edge. We also recently found out that he was misdiagnosing our younger son and also wanted to put him on ativan which I refused. He felt our younger son's problems were emotional stemming from his reaction to watching his older brother's angry and destructive behavior in the house. That was only part of it and we recently took him to two different specialist and found out for one that he has mild asthma and some gasterol intestinal problems. Like you I am also put off by some doctor's opinion that parents of autistic children are off into space and over the edge. We are now looking to change family doctors. Also, when the time does come(for us also) and you find that it becomes necessary for possible placement of your son in a setting outside the home, you might want to keep this for future reference. This place comes highly rated but requires some working of maintaining the expense through state and local funding programs. www.devereux.org This is something we are storing away as an option when the time comes when our energy is no longer there and we have to realize we have to seek other options. I send this to you only for some future time, so you and your husband would at least have a possible option if and when the time ever does come. It seems like a very advanced program but still one would have to travel to check it out. Any other helpful information on the internet that I can find, I will forward to you. Let's face it, we our all in the same boat here. I had a talk with a very nice, helpful woman in my area who works for a non profit organization called SAFE which is an organization in my area that deals in helping parents and educating the public about autism. Their main thrust is in dealing with children. I brought up to her that I understood that direction because of so many children now being born autistic but to also remember that they do grow up and become adults and older people who are still autistic. She told me "You know, you right." But she was the one to point me to Devereux facility as one of the top residential facilities in the state for normal living for autistic adults and others with mental disability when parent's could no longer provide for their children. Good luck and be talking to you soon. Curtis ↑ |
| Name: KAREN SCHIMPF | Date: Sep 10th, 2006 4:47 PM |
| SUN SEPT 10,2006 12:pm Hi Curtis and family. Thankyou for all the data exchange! We've learned over these many years, the so called people, who we thought knew all the data.....didn't know more than we all do. If they would just listen to parents .... I mean really listen instead of fighting us, We might be able to work on the same team and get more done. POINT 1:Once I found out (as I've said in all our e-mails) that 30-50% of autistic kids develope seizures, I decided at that moment, if I had not heard in 22yrs,maybe others didn't as well. I was going to tell every parent I met so they can could (catscan/ emotionally and really study their child and pay attention to any odd feelings or sensations the child might be having. Start studing the pattern ! In our son's case we thought we were watching him having an allergic reaction to dyes, additives,meds, stress.....WRONG! By studing our son behavor, WE NOW REALIZE.................. all these things were........ INTENSIFYING THE SEIZURES AND TRIGGERING PANIC ATTACKS !!!!!!!!!!! Seizures we knew nothing about but now CAN SEARCH FOR. POINT 2:Also: WE KNEW NOTHING about the BRAIN/GUT connection for the past 22yrs. Almost all autistic kids have intestinal systems that don't work right. We've watched Cliff suffer after he eats but never knew what was wrong....until now! POINT 3: WE NEVER KNEW that autistic kids can't engage all their senses at the same time, like most people. They taught us 22yrs. ago: get down on your hands and knees, grab hold of the child and say,"LOOK AT ME!" Now we know the child can't LOOK AT YOU and HEAR YOU at the same time! POINT 4: We never knew Autistic Traits appear to run in families but after careful study and honesty.....there they were. Anyway, I am grateful for any new data we can all exchange and look foreward to any data that might help us, in these trenches! It's like we have to all share the data, so we'll know what questions to even ask. Sounds like you and your family are well on your way, to get much needed answers, for not only your family but all of ours as well! Keep us all posted. GRATEFULLY KAREN SCHIMPF ↑ |
| Name: KAREN SCHIMPF | Date: Sep 11th, 2006 1:11 AM |
| P.S. Hi Curtis it's me karen. Just type in autism/seizures on the web and it will bring you to great sites. KAREN ↑ |
| Name: JAN | Date: Sep 11th, 2006 3:01 AM |
| Hi Curtis, I have been conversing recently with Karen on another thread and have read your conversations on this thread. My son is 29 and sounds a great deal like your son and Karen's. I'm struck by the similarities when you talk about the aggressiveness and the quick change in mood that can occur. It's like my son is two people. He can be the wonderful, relaxed, funny Andrew and he can also be the physically and verbally agressive, tense, paranoid Andrew. It truly is like he is two different people. He lives in a group home near me for the past year. That has been both good and stressful. Mostly, I have to say things are better than they were a year ago. Ofcourse I'm saying that tonight because we have just had the most fabulous weekend with Andrew imaginable. Did the new meds kick in or is he just in the good cycle of Bipolar Disorder? Sometimes when I read different things I get to thinking, oh yeah, I bet that's it, but then I continue reading and am more confused than when I started. Andrew has been seeing the same psychiatrist for about 10 years. The behavior problems started about then. So it seems on these web sites psychiatrist and psychotropic meds are dirty words. I just don't know anymore. I really try to make intelligent and informed decisions but am not sure I know anything anymore and am not sure anyone does when it comes to this subject of autism. Have heard the theories related to food allergies for years, but there doesn't seem to be any study to back that up, just anecdotal evidence. Guess I try to go day to day and try to stay open minded about different therapy options. One thing I need to get serious about is trying to make some appointments with legislators to discuss the sorry state of funding for group homes..I work in a job that puts me in contact with people who have no physical or medical disabilities and are on public aid. I see on a daily basis the decision of how our tax dollars are spent..If it is true that 1 out of 166 children will have autism, then we need to make some changes. Well, I could really get going on this. Better I go bask in the glow of this wonderful weekend. Last weekend I couldn't have imagined that I would ever feel this good again. Ofcourse this great feeling is tempered by the knowledge that it most certainly won't last Hope you are having a peaceful time right now. Your son sounds quite talented in many ways. It is so nice to hear from other families who are facing similar challenges. Maybe together we can make things a little easier for all of us. Jan ↑ |
| Name: curtis | Date: Sep 12th, 2006 5:08 PM |
| Karen and Jan, I sure would like to be able to say my wife and I were on our way to finding answers. We could sure use the rest. No one but the parent of an autistic person could understand how exhausting and frustrating this type of life can be. Doctors, unless they are in the same situation, with all their medical knowledge and some time so called medical knowledge, have not the faintest, real clue how hard this is and the depths of sadness this brings to both the autistic person and family. Right now I believe because of recent events, we will probably be changing our family physician because he now acts as though my wife and I have gone off the deep end. Well, even though he obviously has far more education in the medical field than we simple laypersons, in this situation, we proved to be right. The Neurologist in Philadelphia suspect that Curt Jr. may be having hidden seizures which would account for his sudden, aggressive behavior and they also concur that the psychotropic meds he was taken was too great a dosage and was the root of his angry, destructive behavior in the house. so like all parents we continue the search for the right answers which I guess will go on until we find that particular "House" type doctor who is able to look outside the box and say" I know what this is and what's causing this." Until the day we find that doctor, the search continues. It is very sad for us to watch our son who used to run a mile every day in running track of our local park, who used to create his own video games and used to laugh a lot become another person who no longer has the interest in doing these things. He also no longer wants to go to public places and turns down offers to go the movies which he always loved to do. He spends most of his time now in his room isolating to himself. and of course, with my wife and I quickly approaching 60, our energy reserves are not the same when we were younger. And for me personally, I work as a counselor with a non profit organization that manages group homes for MR and MH residents. So I'm like dealing with the same problems at work and then dealing with problems when I get home which is now burning me out at work. I'm surrounded on both sides with persons with some form of mental disability problems. At my work we have some very sad cases. I think after the first of year, I may look for another type of employment because I'm now surrounded with too much sadness and I need some part of my life that is free from that. Sorry for the vent but it helps. Here's hoping for the both of your sons to progress and also find some answers. After all, as parents, we all have to continue on and seek whatever hope we can. It's out there somewhere. The trick is finding it. Curtis ↑ |
| Name: curtis | Date: Sep 12th, 2006 5:09 PM |
| One last thing, I am very grateful for this website and very grateful to meeting you all. Nice to meet someone who totally understands what we are dealing with and going through. Curtis ↑ |
| Name: KAREN SCHIMPF | Date: Sep 15th, 2006 7:45 PM |
| FRI SEPT. 15,2006 HI CUTIS AND FAMILY, Our doctors have not been listening to us. We all have been going through torture for 28 and 21yrs watching our sons in great emotional pain, all because of doctors lacking the data. Guess what: THE DATA BOTH OUR FAMILIES NEEDED to answer our many questions, as to what's wrong with our beloved sons Curtis and Cliff, we now are impowered with! Do you know what The hidden seizures (subclinical & clinical seizures) might be? At ( autism/seizures ) sites #3,7,21,26 it says: it could be epileptic seizures. That nonconvulsive epilepsy may cause SUDDEN FITS OF EXPLOSIVE AGGRESSION......(with remorse afterward) THATS MY SON!!!!! It says there are some natural products we can try without all those (side effects). B-6,Dimethylglycine(DMG) (can be found by typing it into the web under dimethylglcine dmg) Magnesium and milk thistle (helps detox liver) Things that can trigger a seizure are: milk, sheese, cit.fruits, wheat, art. color, dyes, eggs, tomatoe, pork and choc. ! Also at the site: autism/ irritable bowel it says our autistic kids guts are down and that they need ZINC, Digestive Enzymes and Acidophllus. Our son always gets ill after eating fattey things like potatoe chips, french fries, etc. I'd say he only eats 30-40% of what most growing boys eat, now I know why and can give him things to help him digest foods. Anyway I'm very excited to finally get some answers and know......we don't have to keep waiting for answers that were never coming! Families can help famlies by sharing .....DATA! I can fight better.... when I know what I'm up against! Great talking to you Curtis. Say hello to your family GRATEFULLY , KAREN ↑ |
| Name: JAB | Date: Sep 17th, 2006 4:14 AM |
| As I read your entries, my heart is so heavy. I do know of something that I highly recommend. If it helped your loved ones as it is helping others that I've heard about, it would be so worth your time to look into it. [email protected] ↑ |
| Name: KAREN SCHIMPF | Date: Sep 17th, 2006 2:11 PM |
| SUNDAY SEPT. 17,2006 10:15 am JAB I tried this web site and can't get through....why? KAREN ↑ |
| Name: JAN | Date: Sep 30th, 2006 4:29 AM |
| Dear Karen and Curtis and anyone else, Have been feeling so smug recently because Andrew has been wonderful for about three weeks. Yesterday when I called him I heard the change in his voice. Today he hit people at work and at the group home. Got a call from the behaviorist, the ER and a police officer I know stopped by to tell me Andrew had been transported to the ER by the medics and police. I guess it helps that I know these people and know who to talk to, but I sure don't have any answers. Things are looking pretty bleak. They will admit Andrew tonight because the group home staff can't control him, not because it's therapeutic in any way. The group home administration was well aware of Andrew's behaviors before they accepted him. They assured me they could handle him. Told me they had other clients with worse behavior problems than his. In retrospect, I suppose they thought I just didn't know how to handle him. At least he was never to the ER or admitted to the hospital in the 27 years he lived at home. Maybe that wasn't such a good thing. I don't know. I am alone and beaten down tonight. Am worried that Andrew will end up in jail or something worse. One of the staff from the group home asked me tonight if I knew what triggered these outbursts. If only we all knew. I don't know how this can continue. Nothing else in my life matters at times like this. I wish I could be a bit more philosphical about this stuff. When things are good I know it won't last and I always try to remember that and imagine how I will get through the bad times. It never works for me. I'm devestated everytime. Maybe I actually hope each time that things are good that it will continue forever. Tonight at the ER they brought in a 20 year old paramedic student that was killed in a car crash. I know that other people have problems much worse than mine, but i'm just feeling hopeless tonight. I should be sharing something helpful with you. I should be trying to encourage other people. I'm old enough to know that things usually get better, but tonight I just can't feel it and I'm grateful to be able to have a place to share my little pity party. I feel absolutely pathetic and wish someone would save me. Sometimes it just sucks to have to be a responsible adult. but I know tomorrow morning that's exactly what I'll have to be. I should erase this . Instead I'll submit it because maybe there's someone out there who will feel a connection and know they are not the only one with these crazy thoughts. ↑ |
| Name: mondo | Date: Sep 30th, 2006 3:10 PM |
| Hello all !,As you have all said in one word or another, what a luxury this forum is !! I have read most of the entries here and responded to a few and concur with the difficulties but as someone said, the answers are out there only to be found. Perhaps the answers we are looking for aren't so much to find a cure but a way to help our kids be healthy and happy. Leave behind the special ways they all have but rid them of the anger, aggression and fears they have. My son is 19. Non-verbal but we use ASL with him. I resisted medications for him until he reached the age of about 12 when school staff (SpEd) were unable to deal with him easily- much of the behavior issues at that time is due to the ignorance and inexperience with Autism of school officials/staff- i don't blame them other than some schools treating them as 'cases' and are assigned to 'case worker' in lieu of 'teacher'- being overloaded with spcial need children so much so that the kids are left in the hands of the aides which know a great deal less on how to help these kids. We spent much time meeting with teachers, principals, ST,OT, outside advocate case workers to get the school to 'comply' with delivery of "special education"- we would meet bi-weekly or as needed, kept tabs on daily progress, ups and downs,etc.. some schools and staff are better than others, the truth remains that Autism was still a rather unknown issue back when my son was in grade school. His HS back home (we have since moved) was excellent: staff, teachers, aides,- top of the line people. Jonathan succeeded. I'm interested in asking other parents what -if any- medications, Vitamins, diets, etc. have your kids tried, are on and if you saw benefit in them? ↑ |
| Name: mudanzapr | Date: Nov 3rd, 2006 7:33 AM |
| As I read the stories here, I cannot even begin to imagine what your lives and those of your children have been like for so many years...As I type, I can't help but hold back the tears thinking of the pain that you have endured seeing your children/young adults do things that you had no control over and for which doctors seemed to know little about. I have a 5yr old son who is just now being diagnosed possibly with autism...I say possibly because there is no final diagnosis yet, however, for at least a year we have read about autism and suspected, but as many parents, listened to doctors and family members who told us we were wrong. Our new pediatrician also suspects autism (and she does have other kids with autism who she takes care of) I cannot say that I have tried every single biomedical treatment out there, but I can say this...please, please, take dairy/milk away from your sons...For at least the past two years we could not go to any store, restaurant, mall, or anywhere were there were large crowds, etc...without my son at some point "losing it"...at 3-5, it was just a "tantrum", or so we were told...until I began reading about milk, and decided to take away all dairy for a while...his response was IMMEDIATE...it was no longer a "tantrum" with a cry with "I'm so sorry" afterwards, but no "tantrum" at all...ever...about 3 weeks ago, we bought some milk and he had a glass...my husband was not 100% convinced that it was the milk that caused the tantrums, as we also were giving him natural vitamins and probiotics (to help with his gut)...that day he threw another "tantrum" which had NOT happened in at least 2 or more months. With that said, I've today reading on the DAN doctor webpage realized that his "tantrum" was possibly NOT a tantrum, but actually a "seizure" instead...Needless to say, I will definitely NOT give him milk ever again or dairy... After numerous pediatricians, we have been fortunate enough to find one recommended by someone with a 4yr old child with autism who now attends a typical private school...She has ordered numerous tests for our son, including the following: hearing (he covers his ears with some noises and we believe he has sensitive hearing), a hair/mercury test, an MRI (to check for tumors), a vitamin test (Quest Diagnostics does these in the US) which will tell us if he needs additional vitamins which are causing "autism like symptoms" and some general blood work to check for magnesium, etc...I can get the names of the bloodwork tests if anyone is interested... Her belief is that she will treat ALL biomedical needs first and THEN, she'll check with the pshychologists, etc...and we agree. By the way, we have a yahoo groups (there are many and we live outside the continental US), for parents/children with autism...and about two weeks ago a mother of a 21yr old autism child wrote to us to tell us that she had tried the dairy (casein) free/gluten (wheat, etc) diet and her son who is still basically non-verbal began to say more words than he ever has, that his character has changed, etc... Believe me that I do not write to give false hopes...And it might be true that this does not work for everyone, but I speak from my heart...and I hope that now with the internet and the DAN doctors, etc... (ASU in Arizona - university is also doing much research on autism, etc...) you can find the answers that for many years your doctors were not able to provide you with. By the way, our last pediatrician told us our son just needed a good beating if he didn't listen to us...hmmm...this after we told him he didn't listen, but we weren't sure if it was because he didn't care or if he truly could not understand and/or hear us... ↑ |
