Peroxisomal_Disorders : Messages : 1456-1485 of 1485

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Messages 1456 - 1485 of 1485 Oldest | < Older | Newer > | Newest

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1456	I can't say much about the feeding since we haven't done it, but 18 months for services like OT and PT is not acceptable in my mind. I think Ben was only 6...	Heather Edgar h_m_edgar	Jun 30, 2009 3:52 pm
1457	Hey Heather! Its not that we don't have O/T and P/T, we do, and they were good at getting it to us right away. I'm just grumbling. I just get frustrated at...	Karen Smith karen_7lee	Jun 30, 2009 4:54 pm
1458	Hi Karen Can you experiment with the rate which the pump delivers the formula? We eventually got Ross's feeds down to 35 minutes 4 times a day, but we had...	caroline phillipson csphillipson	Jun 30, 2009 5:28 pm
1459	Hayden just started a new medicine and I didn�t realize it didn�t disolve into small enough particles to go down his NG tube until it was too late. Now his...	kiteleyst	Jun 30, 2009 5:54 pm
1460	Unfortunately, I think you have to remove it. You could try warm water? Anne Park Hopkins Korn Ferry International 404.222.4055 office 404.388.2442 mobile ... ...	Anne Park Hopkins aphopki	Jun 30, 2009 6:24 pm
1461	Sorry Tracey, from what I know the only safe thing to do if you can't move anything with a syringe, is to remove it! That's partly too because you have to be...	Karen Smith karen_7lee	Jun 30, 2009 8:16 pm
1462	EIGHTEEN MONTHS? Sam started receiving public services through the early intervention program here when he was 5 months old, and we started private therapy as...	Shannon Butalla dbsamsmom	Jun 30, 2009 8:41 pm
1463	Karen Nickolaus eats from 6-7am, 11-12pm, 4-5pm and 9-10 pm. He gets 360ml per feeding. we did the night feedings with him, but found out that he does not...	shawnee bear shawneebear1	Jun 30, 2009 8:48 pm
1464	Tracey try warm water or apple juice. if that does not work then you will have to remove it. shawnee ________________________________ From: kiteleyst...	shawnee bear shawneebear1	Jun 30, 2009 8:49 pm
1465	Thanks Shawnee, Maybe one day Joel will be able to get his whole feeding in a hour. Using only gravity its hard to get it "right" so we usually end up...	Karen Smith karen_7lee	Jul 1, 2009 1:26 am
1466	Another remedy for clogged G/tubes is either coca-cola, or sometimes coffee.. however, i've had better luck with coke than coffee..� good luck ...	Jean Shearer mamashearer07	Jul 1, 2009 2:08 am
1467	Karen, Why can they not give you a pump? It makes it so much easier to feed them because you set it and then you can have a free moment for yourself to do...	Steve Frank boycottingha...	Jul 1, 2009 2:10 am
1468	Hi Tracey We were advised to pour a small amount of Coca Cola down the tube.... Sounds odd but apparently it works. Caroline ________________________________ ...	caroline phillipson csphillipson	Jul 1, 2009 8:48 am
1469	karen no problem, i am agreeing with the unsure part. nickolaus is the same way. too fast he gets fussy, too slow he gets bored. we finally got his feeding...	shawnee bear shawneebear1	Jul 1, 2009 11:06 am
1470	Thank you everyone so much. I tried again after a couple hours. I used a larger syringe and all my strength to hold a strong suction on it and I could see...	kiteleyst	Jul 1, 2009 6:06 pm
1471	Hi Cath and Matt, You guys certainly like to have boys. :) Congratulations, I am sure Ethan is looking down from a happy place. Its seems like a lifetime ago...	Franz frankeile	Jul 3, 2009 5:58 am
1472	Hi Patty I can't wait to connect. I would also love to meet Ana. I've often wondered what my life will be like with Adult children of IRD...you may give...	Suzanne Collins collinskidsird	Jul 3, 2009 10:29 am
1473	Hi Friends, Just a note wishing you all a safe and happy Independence Day weekend if you reside in the US. Sam had his 7th birthday Wednesday, and is doing...	Shannon Butalla dbsamsmom	Jul 3, 2009 4:55 pm
1474	SHANNON I think Nebraska would be a great place for the conference, But we also are from Omaha Ne (go Huskers)It is a great place to live and visit and for...	maclean.betty	Jul 3, 2009 11:25 pm
1475	Hello All!! Happy 4th of July to everyone, and Happy Birthday (late) to Sam!! I have a question for all of you. . . we are on vacation, and Peter has actually...	Anne Park Hopkins aphopki	Jul 4, 2009 12:37 pm
1476	Ana did the same thing when she was younger. In fact, for the first 6 or 7 years, she spiked a fever every year on her birthday! When we were visiting NY for...	Patty DelSorbo rosarymkr58	Jul 4, 2009 12:59 pm
1477	Thank you so much, Patty! That is so helpful to know! Anne Park Hopkins Korn Ferry International 404.222.4055 office 404.388.2442 mobile ... From:...	Anne Park Hopkins aphopki	Jul 4, 2009 1:42 pm
1478	Did you ever have his adrenals checked? The only time in Sam's life he has ever spiked a fever is Christmas last year. His endocrinologist & Dr. Rizzo both...	Shannon Butalla dbsamsmom	Jul 4, 2009 2:06 pm
1479	Congratulations to you Cath and Matt! The Nguyens ________________________________ From: Cath Bowden and Matt Tulloch <matttulloch@...> To:...	Huy Nguyen huy_ya	Jul 4, 2009 2:57 pm
1480	Congratulations Cath and Matt! We too went the natural route after having our son pass away from ZS. We did a CVS test at about 11 weeks and found out that we...	flgatorgirl18	Jul 4, 2009 2:57 pm
1481	Congratulations to the Colberts! The Nguyens ________________________________ From: flgatorgirl18 <marshaoc@...> To:...	Huy Nguyen huy_ya	Jul 4, 2009 3:13 pm
1482	Ben hardly had a fever in his whole life. He has to be super sick to get one Griffin on the other hand, seems to get fevers quite easily even if he's not that...	Heather Edgar h_m_edgar	Jul 4, 2009 3:30 pm
1483	Congratulations Cath and Matt and Marsha Colbert and family!!! We did the testing on Leah and they have determined the mutations, but are undecided if we want...	Stoltz, Jacquie j_l_schafer	Jul 4, 2009 3:39 pm
1484	Anne, I would agree with Patty. I haven't had this problem with Hayden, but I have had it several times with my other son Gabe. He will develop a fever for...	kiteleyst	Jul 5, 2009 12:51 am
1485	I tried to send birthday ecard many times since early morning today, but I do not know why it did not show up. However, I want to send this email again: Happy...	Huy Nguyen huy_ya	Jul 5, 2009 2:08 am

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