Guest guest Posted January 10, 2001 Report Share Posted January 10, 2001 Hi new ! Going to get confusing with 2 Gails and 2 s! LOL Sounds like you have a good little fellow there. I'm sure after 8 years of experience, you have a lot to share with us. And, I'm sure we will all benefit from it too! The posts are acting weird this week, so you may have to introduce yourself again, as not all the posts are going through to everyone. I sometimes only get responses and not the original message, so don't be discouraged if you don't get a lot of replies right away! LOL Well, you get a big WELCOME from me am\nd can't wait to hear more from you. Yes, I think dangling is a universal thing with our kids! LOL Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2001 Report Share Posted January 10, 2001 At 12:45 PM 1/10/01 -0800, you wrote: > >I just signed on to this list yesterday and I already >feel like there are other people out there who know >what I go through! I can't tell you how glad that >makes me. When I read about dangling socks and shoes, >I knew I was in the right place. Welcome Michele! I'm glad you found us. I guess that makes me glad I posted on Down-syn and added my most important " credentials " ! Dangling socks, eating soap, dangling all things that are able to dangle in just the right way, are all things you will hear about, and more. I'm glad has you given all that you've shared about his mother. It's a lot, but everyone deserves to be loved for who they are wherever they live. I've put the newsletters out to be mailed to you tomorrow along with a CD-ROM with all the issues to date so you can read them all or print them off. Welcome to our corner of the world. Warmly j Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2001 Report Share Posted January 10, 2001 --- In egroups, Vaughan <mmgraybill@y...> We tested about 2 or 3 years ago and found out > that had a significant amount of autistic > characteristics but not enough to give him the > diagnosis. > We have had practically every behavior problem there > is > with but thank God he really is getting better > now. I think our family is a lot more stable and he is > an excellent school situation now which makes such a > difference. In fact he is quite a joy now. He is > pretty verbal but I don't think he'll ever be able to > read. He just recently started drawing (he had no > interest in it before) and his drawings are absolutely > fascinating. It's like a little snapshot of his mind. > > Anyway, I am very happy to have joined this list and > I'm sure I'll learn a lot. Hi . I only started coming here back in september. I usually lurk every day and read the boards but not always a daily poster. Theres a wonderful group of people here i will say that...with good senses of humour:) My son is almost 9 with DS, been dxed once with autism but i am not 100 percent convinced of that however. He is going to be reevaulated the end of this month and i am starting to suspect the probability of bi-polar disorder, but not sure. I do know i feel like i fit in more here than on regular DS boards. so welcome and its good to meet you:) Marie aka chickiemom1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2001 Report Share Posted January 11, 2001 Marie, We started to wonder last year if was bipolar of schizophrenic or we didn't know what because of all the weird things he was doing. We put him on Clonidine and he is so much easier now! He is able to think much better than before. He doesn't tantrum as much and he is more easy going. Clonidine is an anti-hypertensive that they found helps some people's brains to work better. they don't know why. It doesn't work for everybody but I am so glad our doctor started cautiously with a medication that is not harmful and doesn't change 's personality or anything. I don't know if this is helpful but I know I was thinking like you are and this helped us. Good luck. Mom to 11 --- chickiemom1@... wrote: > --- In egroups, Vaughan > <mmgraybill@y...> > > We tested about 2 or 3 years ago and found > out > > that had a significant amount of autistic > > characteristics but not enough to give him the > > diagnosis. > > We have had practically every behavior problem > there > > is > > with but thank God he really is getting > better > > now. I think our family is a lot more stable and > he is > > an excellent school situation now which makes such > a > > difference. In fact he is quite a joy now. He is > > pretty verbal but I don't think he'll ever be able > to > > read. He just recently started drawing (he had no > > interest in it before) and his drawings are > absolutely > > fascinating. It's like a little snapshot of his > mind. > > > > Anyway, I am very happy to have joined this list > and > > I'm sure I'll learn a lot. > > Hi . I only started coming here back in > september. I usually > lurk every day and read the boards but not always a > daily poster. > Theres a wonderful group of people here i will say > that...with good > senses of humour:) My son is almost 9 with DS, been > dxed once with > autism but i am not 100 percent convinced of that > however. He is > going to be reevaulated the end of this month and i > am starting to > suspect the probability of bi-polar disorder, but > not sure. I do know > i feel like i fit in more here than on regular DS > boards. so welcome > and its good to meet you:) > > Marie aka chickiemom1 > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2001 Report Share Posted January 12, 2001 >Hi , so you didnt get a definitive answer concerning bi- polar? I was just curious. I am HOPING that a med is going to help and again it may turn out thta this doc dxes autism too...at this point who knows LOL....i just want him to get better ya know? I am so glad the med helped your son. I look forward to getting to know you. thanks for your response and have a good evening:) Marie Marie, > We started to wonder last year if was bipolar > of schizophrenic or we didn't know what because of all > the weird things he was doing. We put him on Clonidine > and he is so much easier now! He is able to think much > better than before. He doesn't tantrum as much and he > is more easy going. Clonidine is an anti-hypertensive > that they found helps some people's brains to work > better. they don't know why. It doesn't work for > everybody but I am so glad our doctor started > cautiously with a medication that is not harmful and > doesn't change 's personality or anything. I > don't know if this is helpful but I know I was > thinking like you are and this helped us. Good luck. > > > Mom to 11 > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2001 Report Share Posted January 12, 2001 Marie, The doctor did not test . She just listened to what we said was going on with him and prescribe a med she thought might help those things. I had taken a few years back to another doctor who was supposed to know what he was doing ( I don't really think he did) and he said that there was no way to test for any type of disorder so he had to just start trying drugs out on him and see how they worked. Well, the drug he prescribed was Melleril (I think that was the name) which is a hardcore anti-psychotic drug with some very frightening and dangerous side effects. When I tell anyone who knows anything about these drugs that was prescribed that they can't believe it. I gave one does of it and I was so scared that something was going to happen to him that I never gave it to him again. I also never went back to that doctor. It turned out that the reason that 's behavior was so bad then was because his school environment was a nightmare and he was freaking out because of it. I don't know if your son is exhibiting new behaviors, if he is you might want to investigate and see if there is anything different going on in his life and if school is going ok because he might be reacting to something he doesn't know how to deal with. My suggestion is to trust your instincts in dealing with doctors and drugs. Ask them to be conservative in their prescriptions. You know, to try the least harmful drugs first. Good luck Marie I hope everything works out. Mom to 11 --- chickiemom1@... wrote: > > >Hi , so you didnt get a definitive answer > concerning bi- > polar? I was just curious. > I am HOPING that a med is going to help and again it > may turn out > thta this doc dxes autism too...at this point who > knows LOL....i just > want him to get better ya know? > I am so glad the med helped your son. I look forward > to getting to > know you. thanks for your response and have a good > evening:) > Marie > > > > Marie, > > We started to wonder last year if was > bipolar > > of schizophrenic or we didn't know what because of > all > > the weird things he was doing. We put him on > Clonidine > > and he is so much easier now! He is able to think > much > > better than before. He doesn't tantrum as much and > he > > is more easy going. Clonidine is an > anti-hypertensive > > that they found helps some people's brains to work > > better. they don't know why. It doesn't work for > > everybody but I am so glad our doctor started > > cautiously with a medication that is not harmful > and > > doesn't change 's personality or anything. I > > don't know if this is helpful but I know I was > > thinking like you are and this helped us. Good > luck. > > > > > > Mom to 11 > > > > > > > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2001 Report Share Posted January 12, 2001 Hi , I'm glad that you found this e-group. I hope that you learn from it, and that you share your experiences also with the group. The group shares everything from when their kids wake up in the morning to the tantrum. That's good that your a stepmom, my stepsister had a child, and before the child was 1 or 2 she(my stepsister) and her husband divorsed. She is now happy married again 2 years ago, with a dad who was also divorsed, and has a son. So by that I know what divorce is, and what the children go though; 2 sets of families, etc. Yeah it's sad that she has the other children who are normal and not . I think their mother needs to accept who all the children, and their needs. So if you need to talk about divorce or whatever I kind of know a little about it. I know a autistic kid and I didn't realize that he was autistic till his parents told me. _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2001 Report Share Posted January 13, 2001 Its great to hear when someone finds a med that helps! As for us we are still looking for ways to calm nathan down, and deturb that autism shell, and the persistent obsessing. The clomipramine turned out a nitemare, but hte docs found a pattern with increases of meds his behaviors became worse and worse, so now they are trying a low dose of luvox nightly, and the biobehavioral management team are going to do another inpatient series with him, it really helped when he was younger for us and school, so prayers for those couple weeks that i dont go nuts, dont know the dates as of yet, but soon, prabably in feruary with other appts. shawna. > >Reply-To: egroups >To: egroups >Subject: Re: Re: Introduction >Date: Thu, 11 Jan 2001 19:08:36 -0800 (PST) > >Marie, >We started to wonder last year if was bipolar >of schizophrenic or we didn't know what because of all >the weird things he was doing. We put him on Clonidine >and he is so much easier now! He is able to think much >better than before. He doesn't tantrum as much and he >is more easy going. Clonidine is an anti-hypertensive >that they found helps some people's brains to work >better. they don't know why. It doesn't work for >everybody but I am so glad our doctor started >cautiously with a medication that is not harmful and >doesn't change 's personality or anything. I >don't know if this is helpful but I know I was >thinking like you are and this helped us. Good luck. > > >Mom to 11 > >--- chickiemom1@... wrote: > > --- In egroups, Vaughan > > <mmgraybill@y...> > > > > We tested about 2 or 3 years ago and found > > out > > > that had a significant amount of autistic > > > characteristics but not enough to give him the > > > diagnosis. > > > We have had practically every behavior problem > > there > > > is > > > with but thank God he really is getting > > better > > > now. I think our family is a lot more stable and > > he is > > > an excellent school situation now which makes such > > a > > > difference. In fact he is quite a joy now. He is > > > pretty verbal but I don't think he'll ever be able > > to > > > read. He just recently started drawing (he had no > > > interest in it before) and his drawings are > > absolutely > > > fascinating. It's like a little snapshot of his > > mind. > > > > > > Anyway, I am very happy to have joined this list > > and > > > I'm sure I'll learn a lot. > > > > Hi . I only started coming here back in > > september. I usually > > lurk every day and read the boards but not always a > > daily poster. > > Theres a wonderful group of people here i will say > > that...with good > > senses of humour:) My son is almost 9 with DS, been > > dxed once with > > autism but i am not 100 percent convinced of that > > however. He is > > going to be reevaulated the end of this month and i > > am starting to > > suspect the probability of bi-polar disorder, but > > not sure. I do know > > i feel like i fit in more here than on regular DS > > boards. so welcome > > and its good to meet you:) > > > > Marie aka chickiemom1 > > > > > > > > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2010 Report Share Posted July 16, 2010 Hi. My name is and I am the proud mother of 5 children (24, 13, 12, 7, and 3). My 7 year-old has a diagnosis of MDS (50%) and a suspected diagnosis of ASD. We have not bothered to go through another neuro-psyche in order to get the *official* diagnosis because there are no services in my area and anywhere we go is a long ways out of the way. Getting *the diagnosis* won't help in his education because he is homeschooled at present (and homebound per MD order with limited contact time with outsiders due to immune dysfunction). We are on a GFCF diet. He has beeen GF since about age 2, and we recently removed casein. Overnight, we saw tremendous results with removal of casein (never realized how much he consumed until I read all the labels). My eldest daughter has a severe milk allergy that comes from my side of family, but her symptoms were more along the lines of high fever and vomitting and so we did not recognize his symptoms as a casein allergy. In 24 hours, he ceased lining up videos and toys (something he methodically did every day at all times during the day). He no longer walks on tiptoes. He now has eye contact. And he even noticed that there were houses in our backyard and came to tell us. (Something he never would have done before removing casein.) Many of his autistic signs disappeared very quickly when we removed casein. His speech has even improved and has literally shocked the SLP. (He had profound verbal apraxia.) He now can sing (say) Happy Birthday Song, complete with verbage and sign language). He is beginning to act like a typical boy. He accomplished other milestones at the same age as my other children and some infant milestones were accompished ahead of the typical. We knew something else was the issue and doctors continued to focus on his Down Syndrome, which to us was merely a chromosomal count. They failed to look beyond that *diagnosis*. Luckily (for him), I continued to look beyond the diagnosis of Down Syndrome (btw, he was misdiagnosed with 100% Trisomy 21 on a mere 20-cell count at birth and got rediagnosed with MDS 50% at age 3 1/2, which is how long it took me to find a geneticist to do a quantitative 500-cell count.) Anywho, we are coming along better now, and he turns 7 on the 20th. We are also getting further in a two-year long battle with the county school system to implement his IEP at home (homebound services), which has been a major pain for me that I have considered throwing in the towel on (crappy legal services attorney that is slow as molasses). Other than all this, we still have slight behavior issues and an occassional digestive issue (still looking for some dietary culprits, but do not have much time to spend on more label reading and scientific process, as I am trying to keep my head above water with other things that seem to take precedence). My son has learned Sign language (SEE or MCE) to communicate in the past, which have served useful for his speech progression and he now uses both SL and some intelligible speech. We were told that he will apraxia his entire life and they are unsure at this point how far he will be able to progress with language and speech. We are hopeful that he will continue to improve, but also have reservations that he might have to live the rest of his life with us. I am prepared to accept that responsibility if need be, as he is my child. (dedicated mom 8) Sorry for the scattered topics, but I have a little ADHD and my mind wanders from topic to topic. 8) Quote Link to comment Share on other sites More sharing options...
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