Guest guest Posted February 26, 1999 Report Share Posted February 26, 1999 Hi ! We also have filled out and returned the questionaire. Was there a question about hypoxia? had low (80s) sats after open heart surgery when off oxygen for a short time and again during a respiratory infection. Always hospitalized and appropriately treated so I did not mark that hypoxia was an issue for him. Then I remembered that he had circulatory arrest (they heparinize them, cool them down, remove their blood, perform the open heart surgery, and reverse the process) for 30 minutes for his open heart surgery because he was too small to be put on bypass. Can't remember the long list of potential complications that could result from this so I'm not sure whether neurologic problems were one of them-we were thankful that we did not have the death complication and had no choice because he would have died without the surgery. Please let me know if you need to know more. Cheryl, , (5), (3, CHaRGE) MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 1999 Report Share Posted February 26, 1999 >, > >We received your questionnaire yesterday (2/25) in the mail, had some extra >time on our hands {GASP} and filled it out. I wanted to get it done right away >so I wouldn't forget. I put it in the mailbox this morning. , thanks so much for your help. I hope the info will turn out to help all of our CHARGERS. S. Hartshorne .Hartshorne@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 1999 Report Share Posted February 27, 1999 Date: Sat, 27 Feb 1999 13:21:49 -0500 To: CHARGEonelist From: 3zlrtdh@... ( Hartshorne) Reply-to: CHARGEonelist Subject: Re: Questionnaire From: 3zlrtdh@... ( Hartshorne) > > >Hi ! >We also have filled out and returned the questionaire. Was there a >question about hypoxia? I am trying to rule out inherent congenital mental retardation in CHARGE in my project. The question about hypoxia is so that I can eliminate those subjects who have some evidence of brain damage as a result. They will not be in the final results, because there is no way to know if their " delay " comes from CHARGE or actual damage to the brain. Do you think fits into this category? He seemed pretty high functioning to me when I met him. Do you suspect there was any brain damage? That is my real question to you. Thanks. Hi ! I think that by cooling the kids way down (like kids who fall through the ice and are brought back to life), it reduces the need for oxygen. They told us that they can have them under circulatory arrest for up to 70 minutes and 's circulatory arrest was a " safe " 30 minutes. So.......I guess we would assume that delays are a result of CHARGE rather than circulatory arrest. He was only 3 1/2 weeks old when he had his open heart surgery and we had gone for 3 1/2 weeks with very little sleep and extreme stress. He was very sick before and pharmacologically immobilized (anesthetized) for days after his open heart surgery-so who knows?? We actually thought that he looked GREAT laying on the big table in pediatric cardiac ICU anesthetized, hooked up to many IVs and pumps, urinary cathether, chest tube, on a ventilator, etc. because he was not struggling to breath and he looked sooo peaceful. I think that it is not possible for us to know whether was any different cognitively following the circulatory arrest because he was so young and so sick before that. However, concerns have never been raised regarding circulatory arrest affecting cognition. I was pleased to read that you thought that he was high functioning. : ) Communication has been a concern for us. His parents, teachers, and neurologist think that he seems pretty bright, but formal communication is very delayed. Thank you for all that you do and Tim. Cheryl, , (5), (3, CHaRGE) MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 1999 Report Share Posted February 28, 1999 , The questionnaires have hit the West coast! I admire and appreciate your efforts to further understand the nature of CHARGE and to seek ways to ultimately positively impact CHARGErs. I have one question about the wording of one of the questions and want to clarify with you so that I answer accurately and don't mistakenly skew your research. One of the questions specifically asks about verbal comprehension. (Another question refers to verbal or sign, etc.) In the one that specifically asks about verbal comprehension, I'm not sure if it is appropriate to translate that to mean verbal or signed comprehension. I lean toward answering it as if it says verbal or signed, but want to check with you first to be sure. Thanks again! wendy Kendra, and Camille's Mom Portland, OR Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 1999 Report Share Posted February 28, 1999 > > >A question on the questionnaire. Are all these questions based on what >the child can do completely INDEPENDENTLY without any assistance. For >instance, question 78 " Has regular medical and dental checkups? " Does >this mean, " Does the child make his/her own appointments and goes to >them independently? " Jeanne, sorry about the confusion. I am going to post this to the list in case others have similar questions. These questions are not very explanatory and I apologize. I looked in the manual. Question 78 loads on a factor that measures mainly communication and extra-personal relationships. So I think that would mean the higher skill of arranging for appointments herself. Of course, that would not be developmentally appropriate for Caitlin at this time, so I would score it " 0 " . And question 70 " Has an appropriate diet (eats >nutritiously) " . Does this mean " Chooses his own foods independently and >appropriately? " Yes, I think this is what this one means. Keep in mind it is at the upper end of the scale, so is probably something meant for older kids to be able to do. > >I'm also stuck on question 39 " Uses free time appropriately " . Well, she >can entertain herself, but it's the same activity, she perseverates on >one activity. I guess it's normal for a child to have a favorite >activity but to never do anything else without intervention, well I >don't know--she's my only child for one thing. The key word in my >opinion is " appropriate " , and I don't think it's appropriate, but then >again, it could be worse. I agree. That is like what does. I think I would score that with a one or two with . He is independent in his free time, but not always appropriate. He plays with toys in unusual ways, likes to lie on the bathroom floor with the light off and look through the crack at the bottom of the door, and we find him sometimes lying on the dining room table spinning the chandelier around above him! (Yikes!) > >One more question on #10, what do you mean by graphic symbols? Do you >mean pictures in general, or do you mean like street signs? My guess is that this means stuff like street signs. For instance, my three year old knows what a stop sign is, what the Mcs Arches mean, etc. > >I'm so sorry to be so anal, but I want to be totally accurate. You are not being anal at all!!! This is a confusing scale and I am surprised these things are not addressed more clearly. I apologize for it being so confusing. I did not write this scale. It was the best thing I could find to help measure the development of our kids, because it DOES allow for sign language, etc. Good luck, and thank you to all of you who are tackling this survey! S. Hartshorne .Hartshorne@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 1999 Report Share Posted February 28, 1999 Cheryl, thanks for your response. It sounds as if it will be fine to include in the final results. Does have significant hearing and vision problems? I can't remember. If so, he may be eligible for services from Michigan Services to Children who are Deaf-Blind. The consultant can help significantly with communication issues. These issues have been a real struggle for us with since he was born, but he is now starting to make some progress, thanks to a wonderful school team and a wonderful consultant, Peeler, who also lurks on this list. If you want more info, let me know, and I will send you the number. They are always struggling to find all of the eligible kids to service, and it is a great support. Keep in mind that deaf-blind does not mean totally deaf or blind. Good luck! S. Hartshorne .Hartshorne@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 1999 Report Share Posted February 28, 1999 > > >, > >The questionnaires have hit the West coast! I admire and appreciate >your efforts to further understand the >nature of CHARGE and to seek ways to ultimately positively impact CHARGErs. > >I have one question about the wording of one of the questions and want to >clarify with you so that I answer accurately >and don't mistakenly skew your research. One of the questions >specifically asks about verbal comprehension. (Another >question refers to verbal or sign, etc.) In the one that specifically >asks about verbal comprehension, I'm not sure if >it is appropriate to translate that to mean verbal or signed >comprehension. I lean toward answering it as if it says >verbal or signed, but want to check with you first to be sure. > >Thanks again! >wendy >Kendra, and Camille's Mom >Portland, OR Wnedy, as this is a scale to measure development, I would answer that question as if it says verbal or signed. I am trying to get at intelligence here, and letting deafness or communication differences get in the way of the measurement of that would be trouble. So please answer it as if it said " signed " . Thanks for your response! S. Hartshorne .Hartshorne@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 1999 Report Share Posted March 1, 1999 This one seems fine for the list. Your Hubby Hartshorne wrote: > From: 3zlrtdh@... ( Hartshorne) > > > > > > >A question on the questionnaire. Are all these questions based on > what > >the child can do completely INDEPENDENTLY without any assistance. > For > >instance, question 78 " Has regular medical and dental checkups? " > Does > >this mean, " Does the child make his/her own appointments and goes to > >them independently? " > > Jeanne, sorry about the confusion. I am going to post this to the > list in > case others have similar questions. These questions are not very > explanatory and I apologize. I looked in the manual. Question 78 > loads on > a factor that measures mainly communication and extra-personal > relationships. So I think that would mean the higher skill of > arranging > for appointments herself. Of course, that would not be > developmentally > appropriate for Caitlin at this time, so I would score it " 0 " . > > And question 70 " Has an appropriate diet (eats > >nutritiously) " . Does this mean " Chooses his own foods independently > and > >appropriately? " > > Yes, I think this is what this one means. Keep in mind it is at the > upper > end of the scale, so is probably something meant for older kids to be > able > to do. > > > >I'm also stuck on question 39 " Uses free time appropriately " . Well, > she > >can entertain herself, but it's the same activity, she perseverates > on > >one activity. I guess it's normal for a child to have a favorite > >activity but to never do anything else without intervention, well I > >don't know--she's my only child for one thing. The key word in my > >opinion is " appropriate " , and I don't think it's appropriate, but > then > >again, it could be worse. > > I agree. That is like what does. I think I would score that > with a > one or two with . He is independent in his free time, but not > always > appropriate. He plays with toys in unusual ways, likes to lie on the > bathroom floor with the light off and look through the crack at the > bottom > of the door, and we find him sometimes lying on the dining room table > spinning the chandelier around above him! (Yikes!) > > > >One more question on #10, what do you mean by graphic symbols? Do > you > >mean pictures in general, or do you mean like street signs? > > My guess is that this means stuff like street signs. For instance, my > three > year old knows what a stop sign is, what the Mcs Arches mean, > etc. > > > > >I'm so sorry to be so anal, but I want to be totally accurate. > > You are not being anal at all!!! This is a confusing scale and I am > surprised these things are not addressed more clearly. I apologize > for it > being so confusing. I did not write this scale. It was the best > thing I > could find to help measure the development of our kids, because it > DOES > allow for sign language, etc. Good luck, and thank you to all of you > who > are tackling this survey! > > S. Hartshorne > .Hartshorne@... > > -------------------------- > --------------------------------------------- > Come check out our brand new web site! > http://www.onelist.com > Onelist: Making the Internet intimate > ------------------------------------- > ---------------------------------- > For information about the CHARGE Syndrome Foundation or to become a > member please contact marion@.... Quote Link to comment Share on other sites More sharing options...
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