Guest guest Posted January 27, 2004 Report Share Posted January 27, 2004 Marilyn, and everyone... thank you for your imput!! I take to see the therapist on Feb 17, so, we'll see what happens! I may ask his teacher to write a note that I can take, since she has a relationship with that I don't have, and she is more unbiased than me!! Also, we have his IEP this Friday, so I can take that in to the session as well. The one thing I think may be a benefit, is our HMO wants anyone in a family to see the same therapist, so we have a little history with her with our 15 yr old son, and she listened intently when we said we had concerns about him having ADD and having been 'lost in the cracks' over the years. I'll keep the group posted on how things go! Angel Mom to 11 MDS/Hirschsprung's Disease Lance 15, Tyler 12, 9 Jaeda 7 and Shayne 1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2004 Report Share Posted January 27, 2004 Marilyn, I know what you mean! Tim having MDS really isn't the problem! Him having ADHD has ALWAYS been a huge problem for us and some days I would find myself dreading sending him to school! This year has been so much better for us! Probably the best year we have ever had! He is maturing and learning how to manage his outbursts and attention. We still have our moments...but it is so much better than it ever has been! What is SID? Kristy sahmomof8 wrote: Just popping in here real quick with my two cents! has MDS. She also has ADHD, SID, Hyperthyroidism, and Sydenham's Chorea (a post- strep disorder). The MDS has been a BREEZE to handle! It's the other " labels " --all of which cause behavior difficulties--that are the REAL problems. Her EI school said she had ADHD (they also urged us to test for MDS). They were right on both counts. The SID was diagnosed in kindergarten, by an alert OT. The other two problems are health-related, and showed up at the same time last winter. Diet, medication (not for the ADHD--just the health problems), homeschooling, and time, have lessened some of these things. How I WISH " just " had MDS! Marilyn Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com ************************************************* Become a member of IMDSA at http://www.imdsa.com ************************************************* MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus ************************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2004 Report Share Posted January 28, 2004 Tina, I cant say as far as MDS if ADHD or ADD is a common occurence or not. Ariel was initially diagnosed as having ADHD back 4 or 5 years ago. It was only this past June that we got an official diagnoses of High Functioning Autism. It may interest some of you to know that it has been suggested in the Medical Community to add ADD and ADHD to within the Autism Spectrum. I belong to a group such as this on Yahoo that is for parents of children with DS and an Autism Spectrum disorder. I want to say that there are about 400 members. So it cant be all that rare for a child with DS to also have Autism. Having an official diagnoses of Autism has actually helped us tremendously. (Go Figure) It hasn't changed who Ariel has always been for us. Just that in the eyes of the school district they now know what to do with her. Children classified as Autistic receive certain services. (without a fight) Some of them being socialization classes and speech service geared towards certain situations etc. I have always said since Ariel was about 3 years of age that there was something else " wrong " with her. She was too bright to be acting the way she did. We received our official diagnoses after an extensive evaluation done by a center specializing in Autism Spectrum Disorders. The evaluation was no different than your childs psychological evaluation done by your districts. Just done over several weeks with several appointments to help get the best out of the child. I guess they are looking for certain things. One of the biggest indications for us that Ariel had and Autism Spectrum disorder was her sensitivity to certain tones and frequencies. Ever since she was a little baby certain noises would honestly hurt her. I took her to audiologist after audiologist and no one could tell me what was wrong with her. I feel that if she didnt have MDS they would of seen that something was wrong and that that along with her behaviors was a sign that she had other issues. But everyone just felt it was the MDS. Like Kristy said the MDS hasnt really caused me any problems its the Autism that has always been the issue. Ariel is a bright little girl. In the 4th grade, reading on grade level, succeeding in math, plays the violin, and for the first time making new friends. She will be celebrating her 10th birthday this coming Friday. Take care Mom to Ariel and the twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2004 Report Share Posted January 28, 2004 Kristy and others, Is the combination of MDS and ADHD common? How exactly is ADHD diagnosed? Other than the observable symptoms, can a neurologist actually see a difference in the brain? Just wondering. Tina -- mother to , Kelsey (mds) and Caroline Re: Multiple diagnoses > Marilyn, > I know what you mean! Tim having MDS really isn't the problem! Him having ADHD has ALWAYS been a huge problem for us and some days I would find myself dreading sending him to school! This year has been so much better for us! Probably the best year we have ever had! He is maturing and learning how to manage his outbursts and attention. We still have our moments...but it is so much better than it ever has been! > > What is SID? > Kristy > > sahmomof8 wrote: > Just popping in here real quick with my two cents! has MDS. She > also has ADHD, SID, Hyperthyroidism, and Sydenham's Chorea (a post- > strep disorder). The MDS has been a BREEZE to handle! It's the > other " labels " --all of which cause behavior difficulties--that are > the REAL problems. Her EI school said she had ADHD (they also urged > us to test for MDS). They were right on both counts. The SID was > diagnosed in kindergarten, by an alert OT. The other two problems are > health-related, and showed up at the same time last winter. Diet, > medication (not for the ADHD--just the health problems), > homeschooling, and time, have lessened some of these things. How I > WISH " just " had MDS! Marilyn > > > > Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com > ************************************************* > Become a member of IMDSA at http://www.imdsa.com > ************************************************* > MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus > ************************************************* > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2004 Report Share Posted January 29, 2004 , It sounds like Ariel is doing all sorts of wonderful things. That is great to hear! What sort of behaviors did you notice besides the sensitivity to noises? My second cousin is Autistic, he is 18 now, but I feel that he is an extreme case. My cousin first noticed that something was different about him when he was a baby, he would put his hands on the stove and not realize that it was hot and could not grasp the concept that it would hurt him. One time during school he saw an unattended ladder to the roof and he climbed up it and wanted to fly off the roof. He has no emotions, when I say that I mean he doesn't laugh, doesn't really cry, he is just blank, but he is a really sweet kid. Obviously like everything there is certain degrees, I am just curious as to what you noticed. Thanks, - mom to Caden (8mos. MDS) and Ella(3) Re: Multiple diagnoses Tina, I cant say as far as MDS if ADHD or ADD is a common occurence or not. Ariel was initially diagnosed as having ADHD back 4 or 5 years ago. It was only this past June that we got an official diagnoses of High Functioning Autism. It may interest some of you to know that it has been suggested in the Medical Community to add ADD and ADHD to within the Autism Spectrum. I belong to a group such as this on Yahoo that is for parents of children with DS and an Autism Spectrum disorder. I want to say that there are about 400 members. So it cant be all that rare for a child with DS to also have Autism. Having an official diagnoses of Autism has actually helped us tremendously. (Go Figure) It hasn't changed who Ariel has always been for us. Just that in the eyes of the school district they now know what to do with her. Children classified as Autistic receive certain services. (without a fight) Some of them being socialization classes and speech service geared towards certain situations etc. I have always said since Ariel was about 3 years of age that there was something else " wrong " with her. She was too bright to be acting the way she did. We received our official diagnoses after an extensive evaluation done by a center specializing in Autism Spectrum Disorders. The evaluation was no different than your childs psychological evaluation done by your districts. Just done over several weeks with several appointments to help get the best out of the child. I guess they are looking for certain things. One of the biggest indications for us that Ariel had and Autism Spectrum disorder was her sensitivity to certain tones and frequencies. Ever since she was a little baby certain noises would honestly hurt her. I took her to audiologist after audiologist and no one could tell me what was wrong with her. I feel that if she didnt have MDS they would of seen that something was wrong and that that along with her behaviors was a sign that she had other issues. But everyone just felt it was the MDS. Like Kristy said the MDS hasnt really caused me any problems its the Autism that has always been the issue. Ariel is a bright little girl. In the 4th grade, reading on grade level, succeeding in math, plays the violin, and for the first time making new friends. She will be celebrating her 10th birthday this coming Friday. Take care Mom to Ariel and the twins Quote Link to comment Share on other sites More sharing options...
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