Guest guest Posted October 24, 1999 Report Share Posted October 24, 1999 Barbara, Has Catrina been seen by genetics? I think it might be a good idea as she certainly sounds like she's got some CHARGE attributes. They could help rule out other things as well. Feeding is a big problem in most of the kids. Does Catrina have reflux? Has she had any motility testing done? There could be problems with reflux, stomach emptying, etc. My daughter has a g tube and a Nissen fundoplication (stomach wrapped at the top so nothing can " come back up " ). This has been paramount in her growth, she is keeping her food down and thriving since she got it. Have they looked at changing formulas so that her body might process it easier, I think a fair number of kiddies here on the list have been put on " different " formulas that are easier for the body to digest. My daughter is on " Vivonex " , a milk & soy free formula which is partially broken down, making it easier for the body to process. At Catrina's age, she was on a formula called " Alimentum " (by the makers of Similac), this is an infant formula for children up to the age of 1 or so. She did well on that, too. It might be worth a try! Zory might want to talk to an endocrinologist as well as Growth Hormone Deficiency can be a problem in some CHARGErs as well, which could be a reason for her lack of growth. I think you will find the manual a big help, it's a great resource. I think you and Zory will enjoy this list as well! By the way - WELCOME to CHARGEland... Mom to Kennedy 20 mos old CHARGEr, 10, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 Re:CHARGE From: BARLOR63@... Hi I have been reading the CHARGE line and feel that I really need to know more. My granddaughter Catrina is 6 months -- and I really don't know how involved she is. The doctors diagnosed Tetrollogy of Fallow before birth - she weighed 8lbs 6oz - got up to 10lbs at 4 months - with lots of work - for the surgery. Successful surgery - or so we were told...then just never gained weight. There were problems from the beginning with swallowing and a suspected hearing loss....but no one mentioned CHARGE. Her pediatrician in Oregon had taken care of a CHARGE child and mentioned this diagnosis to Zory (mom) about 6 weeks ago. Tests indicate that she has sight and hearing - she tracks and smiles and coos in response to her sisters and parents. Growth seems to be the main issue at this time. She has a g-tube, but still is only a little over 10 lbs at 6 months. This is an on- going problem. She is responsive, but doesn't move a lot - unless stimulated. Any information is greatly appreciated. I have ordered the manual and know that will help. Thank you. Barbara --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 1999 Report Share Posted October 24, 1999 In a message dated 99-10-24 09:09:56 EDT, you write: << She is responsive, but doesn't move a lot - unless stimulated. Any information is greatly appreciated. I have ordered the manual and know that will help. Thank you. Barbara >> Barbara, The fact that she does not move alot could mean she has low muscle tone. Has your daughter (or daughter -in-law) had Catrina evaluated by a physical therapist? That would be what I would do next. She can usually have it done free through the county from an early intervention program and they will come to the house. My daughter Jillian had PT from the county and also privately)one comes to the house and the private, I go to an office) I feel she needs both to get the different stimulation and the more input, I feel the better she progresses. Can Catrina sit yet? Most of the kids also have vestibular problems where they don't have much balance so Jillian actually had to be taught to sit and to catch herself if she began to tip over. I thought she would never sit. Now she not only sits, but climbs up and down stairs and is into all my cabinets, etc. The earlier you get intervention, the better. Jillian was diagnosed at 4 months so her intervention began at about 5 months. Foley Mom to 4, (my CHARGE guy in heaven) and Jillian 19 months old w/cHaRGE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 1999 Report Share Posted October 24, 1999 In a message dated 10/24/1999 10:52:21 AM Pacific Daylight Time, JFoley6163@... writes: << >> Thank you for your response. Yes, Catrina is getting PT now - she is not sitting and we know she has hypotonia. I have forwarded your message to Zory - so that if she has any questions she can respond to you herself. She lives in Oregon and I'm in California - Thanks again. Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 1999 Report Share Posted October 24, 1999 Barbara, I got a nice note from Zory this morning. I hope we can talk her into joining the list too. I'll be putting some stuff together to send to her too. BTW it's beautiful up here today.. 70's and finally clear of the smoke from the Shasta fires. Casey Mom to Dawn 20 HH, Ken 10 ADHD, 7 CHARGE ICQ 728514 AIM ZeeCasey CHARGE Web Page: http://www.geocities.com/Heartland/1220 Quote Link to comment Share on other sites More sharing options...
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