Guest guest Posted July 31, 2011 Report Share Posted July 31, 2011 That was just the time that we adopted Elie. I remember the pictures of the 'fixed' kids with Piracetem on board and the 'fixed' pictures of kids with tongue surgery. Never saw any differences. But it DID encourage us to work very hard at mouthy closure and swallowing saliva and learning to chew. Might never have emphasized those parts of therapy had it not been for those pictures. And no we opted out of Piracetem. Never saw any blind studies on its effectiveness. > ** > > > Boy, does this bring back memories. What is the general consensus about > Piracetem in the Down syndrome community these days? In 1989, when Ian was > born, it was *highly* controversial. The woman who was touting it most was > showing pictures of " improved " facial features -- and there was an uproar > about how kids with Down syndrome don't have faces that need improvement. > You couldn't mention Piracetem on a Down syndrome email list without > starting huge flame wars. > > After we made the decision to ignore Piracetem, we lost connection with the > discussion. Is it generally perceived to be helpful at all? I remember > charges of overmedication causing potential health risks, and the > illegality > of importing it from other countries. > > The Piracetem to-do happened around the same time as the tongue surgery > wars. That was quite a time. Of course, Life Goes On came on that year, so > Down syndrome was in the public conscious. > > CK > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2011 Report Share Posted August 1, 2011 Not anticipating a change in *looks* because I am not going to give him this for DS; I am anticipating on *hearing* a change. Charlie Hart has apraxia and aphasia; these are *not* typical speech delays you commonly see in DS. We have no issues with eating (except every once in a while choking, which we think is the aphasia...and eating too much, which can also be the aphasia, but he is by no means overweight) and we really have no issues with his *looks*. Actually, he *looks* like a very typical 8 year-old boy, but his speech is profoundly messed up. I do not believe in altering your looks cosmetically (especially when the child has no say in it...which includes circ.'s), but I do believe we need an MRI asap because of the behavior, sensory issues on head, and aphasia. Piracetam is widely used for aphasia patients. > > > ** > > > > > > Boy, does this bring back memories. What is the general consensus about > > Piracetem in the Down syndrome community these days? In 1989, when Ian was > > born, it was *highly* controversial. The woman who was touting it most was > > showing pictures of " improved " facial features -- and there was an uproar > > about how kids with Down syndrome don't have faces that need improvement. > > You couldn't mention Piracetem on a Down syndrome email list without > > starting huge flame wars. > > > > After we made the decision to ignore Piracetem, we lost connection with the > > discussion. Is it generally perceived to be helpful at all? I remember > > charges of overmedication causing potential health risks, and the > > illegality > > of importing it from other countries. > > > > The Piracetem to-do happened around the same time as the tongue surgery > > wars. That was quite a time. Of course, Life Goes On came on that year, so > > Down syndrome was in the public conscious. > > > > CK > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2011 Report Share Posted August 1, 2011 I was just wondering what is your concern to think he needs an MRI? & nbsp; & nbsp; & nbsp; The reason I ask is because my son is exactly the same (9 yrs old) and I'm wondering if I'm missing something? Thanks Sent from my Palm Pre on the Now Network from Sprint On Aug 1, 2011 9:09 AM, agirlnamedsuess21 & lt;agirlnamedsuess@... & gt; wrote: & nbsp; Not anticipating a change in *looks* because I am not going to give him this for DS; I am anticipating on *hearing* a change. Charlie Hart has apraxia and aphasia; these are *not* typical speech delays you commonly see in DS. We have no issues with eating (except every once in a while choking, which we think is the aphasia...and eating too much, which can also be the aphasia, but he is by no means overweight) and we really have no issues with his *looks*. Actually, he *looks* like a very typical 8 year-old boy, but his speech is profoundly messed up. I do not believe in altering your looks cosmetically (especially when the child has no say in it...which includes circ.'s), but I do believe we need an MRI asap because of the behavior, sensory issues on head, and aphasia. Piracetam is widely used for aphasia patients. & gt; & gt; & gt; ** & gt; & gt; & gt; & gt; & gt; & gt; Boy, does this bring back memories. What is the general consensus about & gt; & gt; Piracetem in the Down syndrome community these days? In 1989, when Ian was & gt; & gt; born, it was *highly* controversial. The woman who was touting it most was & gt; & gt; showing pictures of " improved " facial features -- and there was an uproar & gt; & gt; about how kids with Down syndrome don't have faces that need improvement. & gt; & gt; You couldn't mention Piracetem on a Down syndrome email list without & gt; & gt; starting huge flame wars. & gt; & gt; & gt; & gt; After we made the decision to ignore Piracetem, we lost connection with the & gt; & gt; discussion. Is it generally perceived to be helpful at all? I remember & gt; & gt; charges of overmedication causing potential health risks, and the & gt; & gt; illegality & gt; & gt; of importing it from other countries. & gt; & gt; & gt; & gt; The Piracetem to-do happened around the same time as the tongue surgery & gt; & gt; wars. That was quite a time. Of course, Life Goes On came on that year, so & gt; & gt; Down syndrome was in the public conscious. & gt; & gt; & gt; & gt; CK & gt; & gt; & gt; & gt; & gt; & gt; Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2011 Report Share Posted August 2, 2011 He has aphasia; aphasia is caused from Traumatic Brain Injury of some sort. We need to find out if he has or has had a brain tumor, intracranial bleed, or stroke, or if infection may be the cause. > > & gt; > > & gt; & gt; ** > > & gt; & gt; > > & gt; & gt; > > & gt; & gt; Boy, does this bring back memories. What is the general consensus about > > & gt; & gt; Piracetem in the Down syndrome community these days? In 1989, when Ian was > > & gt; & gt; born, it was *highly* controversial. The woman who was touting it most was > > & gt; & gt; showing pictures of " improved " facial features -- and there was an uproar > > & gt; & gt; about how kids with Down syndrome don't have faces that need improvement. > > & gt; & gt; You couldn't mention Piracetem on a Down syndrome email list without > > & gt; & gt; starting huge flame wars. > > & gt; & gt; > > & gt; & gt; After we made the decision to ignore Piracetem, we lost connection with the > > & gt; & gt; discussion. Is it generally perceived to be helpful at all? I remember > > & gt; & gt; charges of overmedication causing potential health risks, and the > > & gt; & gt; illegality > > & gt; & gt; of importing it from other countries. > > & gt; & gt; > > & gt; & gt; The Piracetem to-do happened around the same time as the tongue surgery > > & gt; & gt; wars. That was quite a time. Of course, Life Goes On came on that year, so > > & gt; & gt; Down syndrome was in the public conscious. > > & gt; & gt; > > & gt; & gt; CK > > & gt; & gt; > > & gt; & gt; > > & gt; & gt; Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2011 Report Share Posted August 2, 2011 Thank you I will make sure to mention this to his drs! Sent from my Palm Pre on the Now Network from Sprint On Aug 2, 2011 7:59 AM, agirlnamedsuess21 & lt;agirlnamedsuess@... & gt; wrote: & nbsp; He has aphasia; aphasia is caused from Traumatic Brain Injury of some sort. We need to find out if he has or has had a brain tumor, intracranial bleed, or stroke, or if infection may be the cause. & gt; & gt; & amp;gt; & gt; & gt; & amp;gt; & amp;gt; ** & gt; & gt; & amp;gt; & amp;gt; & gt; & gt; & amp;gt; & amp;gt; & gt; & gt; & amp;gt; & amp;gt; Boy, does this bring back memories. What is the general consensus about & gt; & gt; & amp;gt; & amp;gt; Piracetem in the Down syndrome community these days? In 1989, when Ian was & gt; & gt; & amp;gt; & amp;gt; born, it was *highly* controversial. The woman who was touting it most was & gt; & gt; & amp;gt; & amp;gt; showing pictures of " improved " facial features -- and there was an uproar & gt; & gt; & amp;gt; & amp;gt; about how kids with Down syndrome don't have faces that need improvement. & gt; & gt; & amp;gt; & amp;gt; You couldn't mention Piracetem on a Down syndrome email list without & gt; & gt; & amp;gt; & amp;gt; starting huge flame wars. & gt; & gt; & amp;gt; & amp;gt; & gt; & gt; & amp;gt; & amp;gt; After we made the decision to ignore Piracetem, we lost connection with the & gt; & gt; & amp;gt; & amp;gt; discussion. Is it generally perceived to be helpful at all? I remember & gt; & gt; & amp;gt; & amp;gt; charges of overmedication causing potential health risks, and the & gt; & gt; & amp;gt; & amp;gt; illegality & gt; & gt; & amp;gt; & amp;gt; of importing it from other countries. & gt; & gt; & amp;gt; & amp;gt; & gt; & gt; & amp;gt; & amp;gt; The Piracetem to-do happened around the same time as the tongue surgery & gt; & gt; & amp;gt; & amp;gt; wars. That was quite a time. Of course, Life Goes On came on that year, so & gt; & gt; & amp;gt; & amp;gt; Down syndrome was in the public conscious. & gt; & gt; & amp;gt; & amp;gt; & gt; & gt; & amp;gt; & amp;gt; CK & gt; & gt; & amp;gt; & amp;gt; & gt; & gt; & amp;gt; & amp;gt; & gt; & gt; & amp;gt; & amp;gt; Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2011 Report Share Posted August 2, 2011 Does your child have aphasia or just speech delay? There are many different types of speech disorders. My son not only has aphasia, but also has verbal apraxia; for verbal apraxia or other speech disorders (like articulation disorders), a MRI would not be beneficial. > > & gt; > > & gt; & amp;gt; > > & gt; > > & gt; & amp;gt; & amp;gt; ** > > & gt; > > & gt; & amp;gt; & amp;gt; > > & gt; > > & gt; & amp;gt; & amp;gt; > > & gt; > > & gt; & amp;gt; & amp;gt; Boy, does this bring back memories. What is the general consensus about > > & gt; > > & gt; & amp;gt; & amp;gt; Piracetem in the Down syndrome community these days? In 1989, when Ian was > > & gt; > > & gt; & amp;gt; & amp;gt; born, it was *highly* controversial. The woman who was touting it most was > > & gt; > > & gt; & amp;gt; & amp;gt; showing pictures of " improved " facial features -- and there was an uproar > > & gt; > > & gt; & amp;gt; & amp;gt; about how kids with Down syndrome don't have faces that need improvement. > > & gt; > > & gt; & amp;gt; & amp;gt; You couldn't mention Piracetem on a Down syndrome email list without > > & gt; > > & gt; & amp;gt; & amp;gt; starting huge flame wars. > > & gt; > > & gt; & amp;gt; & amp;gt; > > & gt; > > & gt; & amp;gt; & amp;gt; After we made the decision to ignore Piracetem, we lost connection with the > > & gt; > > & gt; & amp;gt; & amp;gt; discussion. Is it generally perceived to be helpful at all? I remember > > & gt; > > & gt; & amp;gt; & amp;gt; charges of overmedication causing potential health risks, and the > > & gt; > > & gt; & amp;gt; & amp;gt; illegality > > & gt; > > & gt; & amp;gt; & amp;gt; of importing it from other countries. > > & gt; > > & gt; & amp;gt; & amp;gt; > > & gt; > > & gt; & amp;gt; & amp;gt; The Piracetem to-do happened around the same time as the tongue surgery > > & gt; > > & gt; & amp;gt; & amp;gt; wars. That was quite a time. Of course, Life Goes On came on that year, so > > & gt; > > & gt; & amp;gt; & amp;gt; Down syndrome was in the public conscious. > > & gt; > > & gt; & amp;gt; & amp;gt; > > & gt; > > & gt; & amp;gt; & amp;gt; CK > > & gt; > > & gt; & amp;gt; & amp;gt; > > & gt; > > & gt; & amp;gt; & amp;gt; > > & gt; > > & gt; & amp;gt; & amp;gt; Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.