Guest guest Posted September 24, 1998 Report Share Posted September 24, 1998 Welcome Pat and Rittgasser family! Thank you for sharing with us and welcome to the CHARGE list! On growth, our daughter is 13 and weights 70lbs. she is 55 " tall...she has normal periods which are an indication that some of the hormones are functioning! Our pediatrician does not feel that she needs growth hormones and that was the idea I got from Kirk, endocrinologist who spoke at the CHARGE conf. in Boston. I think each of the kids are very individual and should be looked at indiviudually.Our family is not particularly tall so is shorter that most but is just a petite 13 year old. Take care, Jackie Kenley in San Francisco Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 1998 Report Share Posted September 24, 1998 Hi Pat, Welcome to the list. Gosh, you really sound as if you've been through alot . My son Jack is 14mths old so I'm fairly new to all this and it's good to hear from someone who has the experience of having been there. Elaine mum to Elise(6yrs) & Jack(14 1/2mths)CHaRGE Dumfries,Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 1998 Report Share Posted September 24, 1998 Pat, Welcome to the list. I don't get a chance to put in my .02 often but we are presently just getting started wih Growth Hormones so I thought I'd say a little bit. My son Tim has a very involved medical history (including 3 open heart surgeries, G-tube fed and a trach) so we waited quite a while to have him tested. We understood that his medical involvements could play a major role in his growth delay. Tim will be 13 yrs this coming Tuesday. presently he is 53 lbs and is only 50 " tall. We had him tested over the summer and there is a growth hormone deficiency. We will be starting him on daily injections in about 2 weeks. This has been probably the most involved and confusing medical issue that we have had to deal with Tim. We've thought long and hard about giving Tim this med daily but we were very concerned that since he has this deficiency, the replacement of the GH can help with bone density and muscle mass. We wanted to give to Tim, to help his body with medical intervention what he did not have on his own. I personally am horrible with needles (pass out when I get my blood taken) so I am not looking forward to giving these daily injection but my desire to help Tim overshadows my fear. Much of what you described going through with sounds just like my story of Tim. Just feels great to know that we've got this whole " family " of support out here on the internet - the people who can put themselves in our shoes the best. Again, welcome. Donna mom to Tim (almost13)CHaRGE, (12 - a week after brothers birthday), (8) and (4) Hamilton Sq. NJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 1998 Report Share Posted September 24, 1998 Pat, Welcome to the list! Nice to have another Canadian!! Well, from the sounds of things you've been through most everything I can imagine. It sounds like is very lucky to have you. Our daughter is Kennedy, and she is eight months old <on Sunday!>, so we are still quite " wet behind the ears " . I hope you enjoy this list and I'll bet you will have wished you had it here about seven years ago.... I don't know what we would've done without it. Hope to hear from you again soon. Mom to Kennedy <almost 8 mos old CHARGEr>, 9, 7, and wife to Graeme. -- Graeme & Weir gweir@... http://www.geocities.com/SunsetStrip/Palms/5716 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 1998 Report Share Posted September 24, 1998 Hi thanks for your letter. I really appreciate hearing this information. I love coming to the conferences and I remember listening to that session on growth, but you go along doing everything and all the appointments and working hard at the daily school teaching and you lose track of where you are and perspective. sounds like she is doing very well, especially with weight. Do you know where she was through the years, say 5, 7, 10,?? I just need to get a feel for how we're doing here. went from a GJ tube because of all her reflux difficulties and swallowing problems, to a G tube. She now (since age 4-5) eats pretty much everything, but at 4-5 she ate but not a great deal, her appetitie was OK but not enough to have enough energy so we topped up on the G tube. Now, by 6-7, and 7 now, she eats everything and is eating larger quantities. I want to keep promoting these oral skills but I don't want to lose sight of weight management. We are thinking about removing the G-tube but I wanted to get a feel for how she was doing. We go to see Clinical Nutrition and they will reassess her growth/weight etc. She is 7 now and is 41 " tall and 35 lbs. Any thoughts? Thanks again, Pat Rittgasser ---------- > > To: CHARGEonelist > Subject: Re: (no subject) > Date: Thursday, September 24, 1998 12:27 PM > > > > > Welcome Pat and Rittgasser family! > Thank you for sharing with us and welcome to the CHARGE list! > On growth, our daughter is 13 and weights 70lbs. she is 55 " > tall...she has normal periods which are an indication that some of the > hormones are functioning! Our pediatrician does not feel that she needs > growth hormones and that was the idea I got from Kirk, > endocrinologist who spoke at the CHARGE conf. in Boston. I think each of > the kids are very individual and should be looked at indiviudually.Our > family is not particularly tall so is shorter that most but is just a > petite 13 year old. > Take care, > Jackie Kenley in San Francisco > > > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 1998 Report Share Posted September 25, 1998 Hi, thanks for your letter. I've asked the CHARGE foundation for an updated list of Canadian families but I haven't received it yet. Where abouts are you living? We are in Keswick, Ontario. How is your daughter Kennedy and what are her CHARGE characteristics? I received a letter from another family in Bowmanville, Ontario with a little boy, . I've written letters to other families in the States, but I've not had any contact with any other Canadian families, except at the conferences (we attended the first conference, and the third, we had to miss the second it was too far and the timing wasn't good for ). Hope to hear from you soon. Bye. Pat Rittgasser, , daughter 7 (CHARGE), 11 Ontario, Canada ---------- > > To: CHARGEonelist > Subject: Re: (no subject) > Date: Thursday, September 24, 1998 2:28 PM > > > > Pat, > Welcome to the list! Nice to have another Canadian!! > Well, from the sounds of things you've been through most everything > I can imagine. It sounds like is very lucky to have you. Our > daughter is Kennedy, and she is eight months old <on Sunday!>, so we are > still quite " wet behind the ears " . I hope you enjoy this list and I'll > bet you will have wished you had it here about seven years ago.... I > don't know what we would've done without it. Hope to hear from you > again soon. > > > Mom to Kennedy <almost 8 mos old CHARGEr>, 9, 7, and wife to > Graeme. > > > -- > Graeme & Weir > gweir@... > http://www.geocities.com/SunsetStrip/Palms/5716 > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 1998 Report Share Posted December 14, 1998 Janet, That is so great.. wish I could have seen it.. I love it when kids shows don't go perfectly. Last year during a dance scene fell, belly flopped and slid across the stage.. only those of us that had seen a gazillion rehersals didn't know it was part of the show. Casey charge@... minnow@... Mom to Dawn 20, Ken 9 ADHD, and 6 CHARGE. Cobb California ICQ UIN# 728514 ICQ Pager http://wwp.mirabilis.com/728514 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 1999 Report Share Posted January 6, 1999 hi is anyone from the wisconsin area. my daughter is 6 we are in oshkosh. she is eating orally but is very cognitivly challendged. she has developed to about 3 maybe 4 on a good day. just checking to see who is around. thanks for your time- MARYLEE618-mother to MARLEE age 6 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 1999 Report Share Posted January 7, 1999 Lee, Hi I'm Heidi & in Sheboygan Falls! My daughter Hannah is 5, & I have 3 others besides her! Feel free to email me anytime! Heidi ---------- > From: Lee618@... > To: CHARGEonelist > Subject: Re: (no subject) > Date: Wednesday, January 06, 1999 6:20 PM > > From: Lee618@... > > hi is anyone from the wisconsin area. my daughter is 6 we are in oshkosh. she > is eating orally but is very cognitivly challendged. she has developed to > about 3 maybe 4 on a good day. just checking to see who is around. thanks for > your time- > > MARYLEE618-mother to MARLEE age 6 > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 1999 Report Share Posted January 13, 1999 Korey, Just a quick reply about Kayla's fundoplication - I was told that with the Nissen Fundoplication <This is what Kennedy has> that she wouldn't be able to burp. But, she can let gas out the other end. Quite Well. I'll leave it at that... Mom to Kennedy 11 mos old CHARgEr, 9, 7 and wife to Graeme New Brunswick Canada -- Graeme & Weir gweir@... http://www.geocities.com/SunsetStrip/Palms/5716 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 1999 Report Share Posted January 13, 1999 , The doctors said that Kennedy would never be able to burp? Gosh I hope this isn't the case with all of our little ones. We have enough things to worry about. ___________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com/getjuno.html or call Juno at (800) 654-JUNO [654-5866] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 1999 Report Share Posted January 13, 1999 Korey, Just a thought about the stridor and asthma....Has KK ever had a barium swallow study? My daughter had ashtma symptoms, excess secretions, occasional stridor and other breathing problems. She had a swallow study and it showed an aberrant subclavian artery ( basically...an artery from the heart wrapped about her esophagus also causing her not to be able to swallow solid chunks....she's only 9 1/2 mo. but should be able to eat a cheerio and chokes or even a small pea )....Anyway, ALL these symptoms are now supposed to be because of this aberrant subclavian artery ... We have an appt with the cardiac surgeon on Thursday, Jan 21 to see if it needs to be corrected...... The secretions get really bad when Jillian cries so I try very hard to keep her happy.....What you said about KK just reminded me of jillian..... Foley, Mom to 3yr., ( my CHARGEr in heaven ) and Jillian ( my 9 1/2 month earthling CHARGEr) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 1999 Report Share Posted January 14, 1999 Good Morning. KK wants to say something. ghvgggggggggggggggggggggjjj jjjjjjjjjjjjjjjjjjjk rfkrnfdjhnjjhdrkldfk,sjmnikklkk,kjk,ksjkkkjjhklljjkk,kjn gdg jjkuujdhjkkjhjjkdikksjcjjlf7t vvvvvvvvvvvvvvvvvvvvvv g KK did have the swallow study, But they were only looking to see if it came back up for the reflux. She wasn't to corroperative so it was a 1..2..3..thing. Yep same here I have to keep her from crying most of the time. She can wine, but that's it. And when she is sick, forget it she can't be allowed to cry. We once went to the ER cuz of that. So I know about that. It's a pain cuz people think your just spoiling them, but they don't realize even after you tell them that if they cry so hard they will stop breathing. About the reflux. The only way they could tell on Kayla that the reflux was going away or geting worse was by another PH Study. Which I'm sure she will have one pretty soon to get her off the propulsid. I just don't understand why she still needs the medicine if they did surgery for it. I sure hope they can correct the artery for her. I can't imagine her life on souly liquids. Good luck on your appt. Korey mom the Kayla(almost 3) ___________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com/getjuno.html or call Juno at (800) 654-JUNO [654-5866] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 1999 Report Share Posted January 23, 1999 Eliane, Kayla was like that for a bit. She would wake me up by pulling my hair. The more I screamed the harder she pulled as she too was laughing the hole time. Thank goodness now she just kicks me! Korey mom to KK ___________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com/getjuno.html or call Juno at (800) 654-JUNO [654-5866] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 1999 Report Share Posted January 27, 1999 Korey, It's like a powder that you add into liquids and it stirs right in like a sugar. It adds calories, but doesn't make it thicker or richer. It's manufactured by: Ross Laboratories Columbus, Ohio 43216 Division of Abbott Laboratories, U.S.A. Here's the description on the can: Polycose glucose polymers is a readily digestible carbohydrate intended for persons with increased energy needs or those who are unable to meet their energy requirements with their normal diet. Polycose is ideal for use in protein, electrolyte or fat-restricted diets. Polycose provides 16kJ or 3.8 cal per gram of powder. Polycose solutions have an osmolality {don't ask me what that is...} approximately one fifth that of pure glucose solutions of similar concentration. This feature reduces the potential for osmotic diarrhea. Polycose is minimally sweet and mixes readily with most food and beverages. Polycose may be added to other products in the Ross Medical Nutritional System to increase energy intake. Hope this helps! Mom to Kennedy 1 yr tomorrow! 9, 7 and wife to Graeme New Brunswick Canad > > From: klbates2@... > > OK I have a question to anyone who knows what this is. I was searching > the old arhives and found Debra wrote about " Polycose " a powder to add in > to gain weight. What is this, and where can I find it. I called our > local grocery store, nutrition center and they had no idea what it was. > This sounds like it could be something for KK to take. > > Korey mom to KK (3 next week) > ___________________________________________________________________ -- Graeme & Weir gweir@... http://www.geocities.com/SunsetStrip/Palms/5716 *ICQ* UIN:1426476 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 1999 Report Share Posted January 27, 1999 , Thank for all the info, and I need to get one more thing out of you, painless I promise!ha ha Under ingrediant what are the first 10 things. And what exactly is glucose. Isn't it sugar? High doseages? I hope not. KK can't have that then. Fruitose, sorbital, High doses of corn surup gives her really really bad diarrhea. Anything with lots of sugar, we are trying to stay away from. I hope this is something she could take. Well see... Korey mom to KK ___________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com/getjuno.html or call Juno at (800) 654-JUNO [654-5866] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 1999 Report Share Posted January 27, 1999 Korey, The composition says: Glucose polymers derived from controlled hydrolysis of corn starch. Nutrients: Per 100 grams Energy<kJ/cal> 1590/380 Water 6 g94g Carbohydrate 94g Sodium doesn't exceed 110mg Potassium doesn't exceed 10mg Chloride doesn't exceed 223 mg Calcium doesn't exceed 30mg Phosphorus doesn't exceed 5 mg Korey, there was a line in the thing I sent you last night that says that there is a feature of polycose that reduces the potential for osmostic diarrhea. Maybe you could just try it once, and you'd probably know whether or not it gave her diarrhea. Kennedy was on it, but she isn't now, and she was fine with it... Good luck! Mom to Kennedy 1yr old TODAY! 9, 7 and wife to Graeme New Brunswick Canada -- Graeme & Weir gweir@... http://www.geocities.com/SunsetStrip/Palms/5716 *ICQ* UIN:1426476 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2003 Report Share Posted September 7, 2003 Donna, What kind of dog was Karma? Colleen suzydee72@... wrote: Subj: Re: Rainbow Bridge Date: 9/7/03 6:55:19 PM Central Daylight Time From: snowgoose@... Reply-to: Fibromyalgia_Support_Group To: Fibromyalgia_Support_Group Sent from the Internet (Details) Hi Suzy,That website (www.petloss.com) also sells a laminated version of Rainbow Bridge, I think. Before my last dog died (her name was Karma), she'd seen several vets because she had cancer. The vets took a liking to her because she had such a vivid personality and was a very good patient. When she died, two of them made contributions to the Animal Foundation on her behalf. Gee, vets seem to be more human than people doctors!DonnaDonna: You are right about vets a lot of times being more compassionate than people dr's! That is so sweet that your dogs vets made contributions on her behalf. That's what I do when a friend loses a dog (give a contribution to the Mississippi Animal rescue league in memory of the dog)Love,Suzy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2003 Report Share Posted September 16, 2003 LMAO and to think all this time I just thought it was fibro talk LMAO!!!!!!!!!!!!!! Love & God Bless! /Wolf "Therefore encourage one another and build each other up, just as in fact you are doing." 1 Thessalonians 5:11Now as I always say this at the end of my e-mails: IF GOD BRINGS YOU TO IT. HE WILL BRING YOU THROUGH IT. This has became my philosophy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2009 Report Share Posted August 16, 2009 Sent from my iPhone Quote Link to comment Share on other sites More sharing options...
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