Guest guest Posted October 8, 2010 Report Share Posted October 8, 2010 Thank you Margaret, I have already been to 2 places and the last place said i seem to be a diagnosis seeker. I was very offended! So now i am terrified to go anywhere else and try again. Subject: / To: Date: Friday, October 8, 2010, 4:45 PM Â <<The drs. say it doesn't matter what we call it. We'll treat the symptoms, not the dx. .........She said he has autistic symptoms and we need to focus on that. She even handed us a pamphlet for an autistic school and said this is what he needs but refuses to give dual diagnosis. >> Hi, Everyone.... and ....attitudes like this make me want to scream!!! They obviously feel that *they* can address the symptoms but have NO freakin clue what it's like dealing with a school district and their narrow minded policies' for therapies. I'm sorry............I've been there and gone through it. It is just soooooooooo frustrating, in this day and time, and I hope you both get another psych doc whose got the backbone to write those words on a sheet of paper....Autistic AND Down Syndrome. Take care, Everyone. Margaret Mom to Gareth, 22 y/o, DS/ASD/OCD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2010 Report Share Posted October 8, 2010 Dx seeker!!! I went to 3 clinics and 4 doctors (including one doc whose son had DS,, was non-verbal, but didn;t display signs of ASD) seeking help for my son - and it took until he was about 10 yo before I got a dx so that he could get treatment for what I had already figured out (with the help of this list and our great early helper Glenn Vater) !!! The first dx was DS - severely affected - mother not able to cope. Second dx 4 years later!!! was DS-PDD-NOS - and then we got the sensory integration disorder, AND Mother ineffectual at disapline Third: at a DS Clinic who also treats people with ASD and treats from birth to adulthood - at last - at long last- DS/PDD-NOS/ASD and a specific behavoir management person who taught me STRUCTURE STRUCTURE STRUCTURE and how to use a PECS system so that I could help my son internalize order. Don't give up. And that doc should be de=frocked, un-licensed, and sentenced to 40 hours in someones home who is trying to figure out what is not working in their child's life. On Fri, Oct 8, 2010 at 6:06 PM, adrian richner wrote: > > > Thank you Margaret, I have already been to 2 places and the last place said > i seem to be a diagnosis seeker. I was very offended! So now i am terrified > to go anywhere else and try again. > > > > From: mfroof@... <mfroof%40AOL.com> <mfroof@... <mfroof%40AOL.com> > > > Subject: / > To: > Date: Friday, October 8, 2010, 4:45 PM > > > > <<The drs. say it doesn't matter what we call it. We'll treat the > symptoms, not the dx. .........She said he has autistic symptoms and we > need to > focus on that. She even handed us a pamphlet for an autistic school and > said > this is what he needs but refuses to give dual diagnosis. >> > > Hi, Everyone.... and ....attitudes like this make me want to > scream!!! They obviously feel that *they* can address the symptoms but > have NO freakin clue what it's like dealing with a school district and > their > narrow minded policies' for therapies. I'm sorry............I've been > there and gone through it. It is just soooooooooo frustrating, in this day > and > time, and I hope you both get another psych doc whose got the backbone to > write those words on a sheet of paper....Autistic AND Down Syndrome. > > Take care, Everyone. > Margaret > Mom to Gareth, 22 y/o, DS/ASD/OCD > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2010 Report Share Posted November 2, 2010 Hi, Everyone.........when Gareth was that age, he couldn't stand haircuts, either. I resorted to cutting his hair after he fell asleep (waited about 1 hr till he was in a deep sleep). I'd turn on a small lamp, with a 20 watt bulb, and start snipping away. Sometimes, it took 2-3 nights, but I always managed to have it come out half decent. Start in the front where it's in his eyes, then work the sides, and on to the back. Gareth has always liked long hair, anyways, and I don't mind it at all......I grew up with it in HS!!! His Dad is the one with the *problem* when it comes to long hair. Also, for yrs, Gareth had a *rat tail* down the back to self stim in school since he had such an affinity for the girls hair and it was considered a MAJOR *no, no* to touch another child. As for Adderall or Ritalin, they made Gareth schizo. Many of us have found that our kids can't handle the stimulants. Times have changed though and the meds may have different chemicals in them. As for me, I would give them a try. They are in and out of the system within hours, so you will know how they affect him. Start at the lowest dosage, though. ......good luck with tomorrow. Gareth did quite well on the liquid diet before his scope, too. Take care, Everyone. Margaret Mom to Gareth, 22 y/o, DS/ASD/OCD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2010 Report Share Posted November 2, 2010 Thanks, Margaret! I'm pretty much in denial, telling myself this is no big deal. But tomorrow my little boy's going under general for the first time. Now, may not have DS, but he DOES have autism and all the quirky med reactions that comes with it. So it's sorta scary, especially since DH and I will be there when he goes under. It'll be hard watching him go under, I think. Sent from my iPhone > Hi, Everyone.........when Gareth was that age, he couldn't stand > haircuts, either. I resorted to cutting his hair after he fell asleep (waited > about 1 hr till he was in a deep sleep). I'd turn on a small lamp, with a > 20 watt bulb, and start snipping away. Sometimes, it took 2-3 nights, but I > always managed to have it come out half decent. Start in the front where > it's in his eyes, then work the sides, and on to the back. Gareth has > always liked long hair, anyways, and I don't mind it at all......I grew up with > it in HS!!! His Dad is the one with the *problem* when it comes to long > hair. Also, for yrs, Gareth had a *rat tail* down the back to self stim in > school since he had such an affinity for the girls hair and it was > considered a MAJOR *no, no* to touch another child. > > As for Adderall or Ritalin, they made Gareth schizo. Many of us have > found that our kids can't handle the stimulants. Times have changed though and > the meds may have different chemicals in them. As for me, I would give > them a try. They are in and out of the system within hours, so you will know > how they affect him. Start at the lowest dosage, though. > > ......good luck with tomorrow. Gareth did quite well on the > liquid diet before his scope, too. > > Take care, Everyone. > Margaret > Mom to Gareth, 22 y/o, DS/ASD/OCD > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2010 Report Share Posted November 2, 2010 , I am still catching up with posts so I am not certain what is happening with but prayers that all goes well. Charlyne Mom to Zeb 17 DS > Hi, Everyone.........when Gareth was that age, he couldn't stand > haircuts, either. I resorted to cutting his hair after he fell asleep (waited > about 1 hr till he was in a deep sleep). I'd turn on a small lamp, with a > 20 watt bulb, and start snipping away. Sometimes, it took 2-3 nights, but I > always managed to have it come out half decent. Start in the front where > it's in his eyes, then work the sides, and on to the back. Gareth has > always liked long hair, anyways, and I don't mind it at all......I grew up with > it in HS!!! His Dad is the one with the *problem* when it comes to long > hair. Also, for yrs, Gareth had a *rat tail* down the back to self stim in > school since he had such an affinity for the girls hair and it was > considered a MAJOR *no, no* to touch another child. > > As for Adderall or Ritalin, they made Gareth schizo. Many of us have > found that our kids can't handle the stimulants. Times have changed though and > the meds may have different chemicals in them. As for me, I would give > them a try. They are in and out of the system within hours, so you will know > how they affect him. Start at the lowest dosage, though. > > ......good luck with tomorrow. Gareth did quite well on the > liquid diet before his scope, too. > > Take care, Everyone. > Margaret > Mom to Gareth, 22 y/o, DS/ASD/OCD > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2010 Report Share Posted November 2, 2010 It's " just " a double GI scope--endoscopy/colonoscopy. He hasn't gained any weight in the past year (he's 7, 4' tall and weighs 42#, he's been followed by GI for most of his life due to feeding issues and reflux. Thanks for the prayers!!! Sent from my iPhone > , I am still catching up with posts so I am not certain what is happening with but prayers that all goes well. > Charlyne > Mom to Zeb 17 DS > > > > > Hi, Everyone.........when Gareth was that age, he couldn't stand > > > haircuts, either. I resorted to cutting his hair after he fell asleep (waited > > > about 1 hr till he was in a deep sleep). I'd turn on a small lamp, with a > > > 20 watt bulb, and start snipping away. Sometimes, it took 2-3 nights, but I > > > always managed to have it come out half decent. Start in the front where > > > it's in his eyes, then work the sides, and on to the back. Gareth has > > > always liked long hair, anyways, and I don't mind it at all......I grew up with > > > it in HS!!! His Dad is the one with the *problem* when it comes to long > > > hair. Also, for yrs, Gareth had a *rat tail* down the back to self stim in > > > school since he had such an affinity for the girls hair and it was > > > considered a MAJOR *no, no* to touch another child. > > > > > > As for Adderall or Ritalin, they made Gareth schizo. Many of us have > > > found that our kids can't handle the stimulants. Times have changed though and > > > the meds may have different chemicals in them. As for me, I would give > > > them a try. They are in and out of the system within hours, so you will know > > > how they affect him. Start at the lowest dosage, though. > > > > > > ......good luck with tomorrow. Gareth did quite well on the > > > liquid diet before his scope, too. > > > > > > Take care, Everyone. > > > Margaret > > > Mom to Gareth, 22 y/o, DS/ASD/OCD > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2010 Report Share Posted November 2, 2010 , Zeb went through the same a few years ago and did better than me. He had no effects from the anesthesia and was just fine. I was worried too. I will keep you in my thoughts and prayers that he has no ill effects but mostly the GI doc will figure out what's going on. Charlyne > > > Hi, Everyone.........when Gareth was that age, he couldn't stand > > > haircuts, either. I resorted to cutting his hair after he fell asleep (waited > > > about 1 hr till he was in a deep sleep). I'd turn on a small lamp, with a > > > 20 watt bulb, and start snipping away. Sometimes, it took 2-3 nights, but I > > > always managed to have it come out half decent. Start in the front where > > > it's in his eyes, then work the sides, and on to the back. Gareth has > > > always liked long hair, anyways, and I don't mind it at all......I grew up with > > > it in HS!!! His Dad is the one with the *problem* when it comes to long > > > hair. Also, for yrs, Gareth had a *rat tail* down the back to self stim in > > > school since he had such an affinity for the girls hair and it was > > > considered a MAJOR *no, no* to touch another child. > > > > > > As for Adderall or Ritalin, they made Gareth schizo. Many of us have > > > found that our kids can't handle the stimulants. Times have changed though and > > > the meds may have different chemicals in them. As for me, I would give > > > them a try. They are in and out of the system within hours, so you will know > > > how they affect him. Start at the lowest dosage, though. > > > > > > ......good luck with tomorrow. Gareth did quite well on the > > > liquid diet before his scope, too. > > > > > > Take care, Everyone. > > > Margaret > > > Mom to Gareth, 22 y/o, DS/ASD/OCD > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2010 Report Share Posted November 3, 2010 I hope that, too. One thing that I hope NOT to hear is that Strattera is messing up his stomach. Because it's been amazing for him otherwise. Sent from my iPhone > , > Zeb went through the same a few years ago and did better than me. He had no effects from the anesthesia and was just fine. I was worried too. I will keep you in my thoughts and prayers that he has no ill effects but mostly the GI doc will figure out what's going on. > Charlyne > > > > > > > > > Hi, Everyone.........when Gareth was that age, he couldn't stand > > > > > > > haircuts, either. I resorted to cutting his hair after he fell asleep (waited > > > > > > > about 1 hr till he was in a deep sleep). I'd turn on a small lamp, with a > > > > > > > 20 watt bulb, and start snipping away. Sometimes, it took 2-3 nights, but I > > > > > > > always managed to have it come out half decent. Start in the front where > > > > > > > it's in his eyes, then work the sides, and on to the back. Gareth has > > > > > > > always liked long hair, anyways, and I don't mind it at all......I grew up with > > > > > > > it in HS!!! His Dad is the one with the *problem* when it comes to long > > > > > > > hair. Also, for yrs, Gareth had a *rat tail* down the back to self stim in > > > > > > > school since he had such an affinity for the girls hair and it was > > > > > > > considered a MAJOR *no, no* to touch another child. > > > > > > > > > > > > > > As for Adderall or Ritalin, they made Gareth schizo. Many of us have > > > > > > > found that our kids can't handle the stimulants. Times have changed though and > > > > > > > the meds may have different chemicals in them. As for me, I would give > > > > > > > them a try. They are in and out of the system within hours, so you will know > > > > > > > how they affect him. Start at the lowest dosage, though. > > > > > > > > > > > > > > ......good luck with tomorrow. Gareth did quite well on the > > > > > > > liquid diet before his scope, too. > > > > > > > > > > > > > > Take care, Everyone. > > > > > > > Margaret > > > > > > > Mom to Gareth, 22 y/o, DS/ASD/OCD > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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