Guest guest Posted February 22, 2001 Report Share Posted February 22, 2001 Hi Leah, Can you believe I wrote back to you (a book as usual) and before I could finish it, my computer crashed and now I have to start over again! grrrrrrrrrrr! LOL Oh well, maybe that's God's way of telling me to shut up! LOL Anyway, yes, I truly feel blessed with my children. Remember, however, they are older now, not little kids! When your kids are older, you will have the same experience! I can't say that I felt as blessed when they were 5, 6, 7, etc. LOL Then they were big pains in the butt like all kids! LOL I am so glad you are " back " ! I missed your posts alot. You are all still in my prayers every day. I am sure that Cameron will be ok. I know this has to be hell for you....waiting is the worst. Has he had apnea since he was a baby or is it relatively new? I am so glad that you have access to good medical care. Walter is certainly nationally known and respected. I know it was really hard for me to start posting again. I just didn't have the energy or something. But now that I have, I am glad I did. I do feel alot better. There's so much support in this group. It is a blessing. I think about you all the time. The down-side to the group is that we are so spread out (all over the country) that we can't " be there " for each other. Please know that I am there for you " in spirit " . Hang in there. Terry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2011 Report Share Posted June 24, 2011 Happy 14th Birthday to ! I hope he has a great day! Charlyne Subject: Re: New to the group To: Date: Friday, June 24, 2011, 4:09 PM Â Hi Vaish, Welcome to the group! I wanted to tell you that my son share's you son's birthday tomorrow. will be 14 tomorrow. Terry New to the group Hi All, I am new to this group. My son, Sid (Siddhartha) will turn 4 tomorrow. He has Down Syndrome and has just been unofficially diagnosed with Autism. As I am sure is the case with everyone else, a lot of his delays were attributed to DS, which seems to be an all-pervasive label for anything that is wrong with him. It is only in the last month that I suspected autism, and when I asked his SLT and OT, they confirmed that suspicion. As I do more research, it is clear that Sid is quite autistic, and we just didn't know. He is non-verbal, and non-communicative. His gross motor skills are decent, though his fine-motor could use some help. I am thrilled to have found this group, and even more thrilled that it has this large group of members. Is it very common to have language delays in this group of kids? Do we have any kids that talk? I am really not sure what hope to hold out for his future. I feel put back to the day that Sid was born and I learned of his extra chromosome. In the days that followed I have never once regretted the Trisomy, but now I am not sure what to expect any more. Well, this is a long message already. I had just wanted to say " Hello Everybody " ! Regards, Vaish (mom to Sid, 4) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2011 Report Share Posted June 24, 2011 Thank you Charlyne and congratulations to Zeb! New to the group Hi All, I am new to this group. My son, Sid (Siddhartha) will turn 4 tomorrow. He has Down Syndrome and has just been unofficially diagnosed with Autism. As I am sure is the case with everyone else, a lot of his delays were attributed to DS, which seems to be an all-pervasive label for anything that is wrong with him. It is only in the last month that I suspected autism, and when I asked his SLT and OT, they confirmed that suspicion. As I do more research, it is clear that Sid is quite autistic, and we just didn't know. He is non-verbal, and non-communicative. His gross motor skills are decent, though his fine-motor could use some help. I am thrilled to have found this group, and even more thrilled that it has this large group of members. Is it very common to have language delays in this group of kids? Do we have any kids that talk? I am really not sure what hope to hold out for his future. I feel put back to the day that Sid was born and I learned of his extra chromosome. In the days that followed I have never once regretted the Trisomy, but now I am not sure what to expect any more. Well, this is a long message already. I had just wanted to say " Hello Everybody " ! Regards, Vaish (mom to Sid, 4) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2011 Report Share Posted October 1, 2011 <<She also so she know of people who use Paxil and the has worked too,>> Hi, Everyone....Terry....we tried Paxil years ago for behaviors/OCD and I have written in the notes that *it made him very autistic*. As for 's seizures.....has ever been tested in the hospital for the type of seizures he's having? I don't know if you were on 2 yrs ago when we had Gareth in to Hershey for a week of seizure studies. They found that he wasn't having epileptic seizures, but pseudo seizures and that the seizure meds we had him on weren't doing a thing for him......just messing him up royally. He had been on 5-6 different seizure meds for 1 1/2 yrs.......all for nothing. When they added the Lyrica....things got really ugly. Take care, Everyone. Margaret Mom to Gareth, 23 y/o, DS/ASD/OCD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2011 Report Share Posted October 1, 2011 Margaret, I do remember Gareth's experience a couple of years ago. had a couple of 24 hr veeg's when he first started having seizures and then again a couple of years later. He was found to have idiopathic epilepsy. But then we had them under complete control for 7 years. His seizures kept changing to different types and I think he had every type there is. Right now I think that puberty and a huge growth spurt and weight gain probably triggered them again because I know that is common. I just hope we get them controlled again. I hope you can get things straightened out for Gareth. Terry Terry <<She also so she know of people who use Paxil and the has worked too,>> Hi, Everyone....Terry....we tried Paxil years ago for behaviors/OCD and I have written in the notes that *it made him very autistic*. As for 's seizures.....has ever been tested in the hospital for the type of seizures he's having? I don't know if you were on 2 yrs ago when we had Gareth in to Hershey for a week of seizure studies. They found that he wasn't having epileptic seizures, but pseudo seizures and that the seizure meds we had him on weren't doing a thing for him......just messing him up royally. He had been on 5-6 different seizure meds for 1 1/2 yrs.......all for nothing. When they added the Lyrica....things got really ugly. Take care, Everyone. Margaret Mom to Gareth, 23 y/o, DS/ASD/OCD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2012 Report Share Posted March 24, 2012 Margaret, Did Gareth start this behavior as a teen or younger? This is pretty new, about a year, with and he is almost 15. So I'm pretty sure that puberty is playing a big role along with the epilepsy or maybe the seizure meds. He was completely controlled on a pretty low dose for 7 years and now all this weird stuff since we raised the meds due to the terror seizures at night. He was always happy before. We never saw any aggression or anger until last May. Terry Terry <<MIchael woke up angry and throwing things this morning. Pretty much happening every day now. Then when I slowing and nervously open his door, he's sitting there smiling at me. >> Hi, Everyone....Terry....what is it with the Dr Jeckle and Mr Hyde persona with our kids?!?!? Is it the DS or the ASD. I wish someone could answer that for me? Is it true mental issues or reaction to medical issues??? Prayers coming for you, too, Lady!!! Take care, Everyone. Margaret Mom to Gareth, 23 y/o, DS/ASD/OCD Quote Link to comment Share on other sites More sharing options...
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