Guest guest Posted December 19, 2000 Report Share Posted December 19, 2000 Hi there, Welcome to all who are new, my name is Terri and I live in Hobart Tasmania I am a uni student and have 2 children Ainslie 8 wcf and Connor 4 no cf, my husband ia away for 6 months with the army in East Timor. Ainslie cultured psuedo when she was 6 1/2, the doctors here are not aggressive enough but it is difficult to " jump up and down " because we would e burning all of our bridges, Tassie is too small. She has never really ad a cf cough but a cough that is started by her sinuses playing up. apart from the last 6 months she has taken oral cipro every second month, but in June she started pulmozyme and that has helped tremendously. I have been pushing for IV's, even suggested that we take the opportunity when my son (no cf) was in hospital earlier this year. The docs here are very much on the " resistance " line of thought. To look at her she looks great, at a cf picnic (outdoor event) some parents who did not know us had to ask which of my kids had cf cause they both looked so good, what a great complement!!! So I suppose what I am trying to get at, is yes be persistent in getting the best treatment for your child but be careful if you have limited specialists. Try different treatments that are available eg pulmozyme or even alternative therapies (with professional advice). As to weight, my Connor is 4 and he only weighs 15.5 kg, but I am small and slim and Nigel was scrawny as a child. Ainslie had not put much weight on for the past year until she started on pulmozyme then she grew 2 cm and put on a kilo. Again she is tiny but there are still kids smaller than her in her class. Take a look at what she eats and drinks, then look at your build, hubby's, Liam's and the grandparents, if some one is on the light side she may be following their build. Try not to fuss too much about what or how much she eats/drinks, we made that mistake with Aisnlie and she knows that not eating gets a great reaction, not so much any more, Mummy now tries different tactics. I have mentioned before that I am putting Ainslie on a " put weight on diet " and the dietician at the hospital is giving me a months supply of sustagen and sustagen pudding both hospital " strength " as a prescription. She doesn't look underweight, eg ribs don't stick out or anything but I really need her be fit and well for the next 6 months, a hospital stay would be a nightmare with Nigel away. Christmas this year we are off to Sydney to see my folks, having a champagne breakfast and then a buffet lunch at my cousins by her pool. Oh I can't wait, I think I'm looking forward to it more than the children are. Good luck Terri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2000 Report Share Posted December 19, 2000 Terri, Is Nigel coming home for christmas? If not I bet you are looking forward to the company. Yes we'll all end up wet on christmas day to, although we dont have a pool, but a good supply of super soakers! You mentioned Ainslie has a cough when her sinuses play up. Eilish is starting to get a moist cough but only when we say cough, she isnt running around coughing. Her nose has been blocked and runny for the past two weeks, Im wondering if it could be dripping and thats the wetness. Please let it be that! Im thinking of asking for a milkshake stuff, I cant remember the name, but its on script if through the hsp. Merry christmas, Psuedo, Weight > Hi there, > > Welcome to all who are new, my name is Terri and I live in Hobart > Tasmania I am a uni student and have 2 children Ainslie 8 wcf and Connor > 4 no cf, my husband ia away for 6 months with the army in East Timor. > > Ainslie cultured psuedo when she was 6 1/2, the doctors here are not > aggressive enough but it is difficult to " jump up and down " because we > would e burning all of our bridges, Tassie is too small. She has never > really ad a cf cough but a cough that is started by her sinuses playing > up. apart from the last 6 months she has taken oral cipro every second > month, but in June she started pulmozyme and that has helped > tremendously. > > I have been pushing for IV's, even suggested that we take the > opportunity when my son (no cf) was in hospital earlier this year. The > docs here are very much on the " resistance " line of thought. To look at > her she looks great, at a cf picnic (outdoor event) some parents who did > not know us had to ask which of my kids had cf cause they both looked so > good, what a great complement!!! > > So I suppose what I am trying to get at, is yes be persistent in getting > the best treatment for your child but be careful if you have limited > specialists. Try different treatments that are available eg pulmozyme > or even alternative therapies (with professional advice). > > As to weight, my Connor is 4 and he only weighs 15.5 kg, but I am > small and slim and Nigel was scrawny as a child. Ainslie had not put > much weight on for the past year until she started on pulmozyme then she > grew 2 cm and put on a kilo. Again she is tiny but there are still kids > smaller than her in her class. Take a look at what she eats and drinks, > then look at your build, hubby's, Liam's and the grandparents, if some > one is on the light side she may be following their build. > > Try not to fuss too much about what or how much she eats/drinks, we made > that mistake with Aisnlie and she knows that not eating gets a great > reaction, not so much any more, Mummy now tries different tactics. > > I have mentioned before that I am putting Ainslie on a " put weight on > diet " and the dietician at the hospital is giving me a months supply of > sustagen and sustagen pudding both hospital " strength " as a > prescription. She doesn't look underweight, eg ribs don't stick out or > anything but I really need her be fit and well for the next 6 months, a > hospital stay would be a nightmare with Nigel away. > > Christmas this year we are off to Sydney to see my folks, having a > champagne breakfast and then a buffet lunch at my cousins by her pool. > Oh I can't wait, I think I'm looking forward to it more than the > children are. > > Good luck > > Terri > > > *********************** > This is a secular list. > *********************** > > > PLEASE do not post religious emails to the list. > > > -------------------------------------------------- > > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2000 Report Share Posted December 19, 2000 , Maybe you were thinking of Scandishake. We use this. It has very good flavour and gives 200 calories per deciliter Im thinking of asking for a milkshake stuff, I cant remember the name, but its on script if through the hsp. Merry christmas, - > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2000 Report Share Posted December 20, 2000 , I dont know if they have Scandishake here but I finally remembered the name of the other on its either Polycal or Polyjoule. Has anyone ever tried them. They give them at the hsp. RE: Psuedo, Weight > , > > Maybe you were thinking of Scandishake. We use this. It has very good > flavour and gives > 200 calories per deciliter > > > > > Im thinking of > asking for a milkshake stuff, I cant remember the name, but its on script if > through the hsp. > > Merry christmas, > > > - > > > > > > > > *********************** > This is a secular list. > *********************** > > > PLEASE do not post religious emails to the list. > > > -------------------------------------------------- > > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2000 Report Share Posted December 20, 2000 Merry Christmas Everyone, Just wondering if any one else out there whose children are on pulmozyme has increased in weight when they usaually are slow gainers? Thanks! Would anybody like some snow? More is coming. Amy,5.5wocf,3.5wcf,3monthowocf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2000 Report Share Posted December 20, 2000 Yes we'd love some snow. Weve never seen snow and I bet its nice. We'd also love to use it to cool down. Last night it was 27.c overnight and today where we live its going to be 42.c. It's 6.45am and the moment and its alread 32.c. Bring on the snow. Re: Psuedo, Weight > Merry Christmas Everyone, > > Just wondering if any one else out there whose children are on pulmozyme has increased in weight when they usaually are slow gainers? > > Thanks! > Would anybody like some snow? More is coming. > Amy,5.5wocf,3.5wcf,3monthowocf > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2000 Report Share Posted December 20, 2000 I remember the heat we had when I lived in Yuma, Arizona. When I had my daughter it was 120*. That was in august of 1995. > >Reply-To: cfparentsegroups >To: cfparentsegroups >Subject: Re: Re: Psuedo, Weight >Date: Thu, 21 Dec 2000 07:00:51 +1030 > >Yes we'd love some snow. Weve never seen snow and I bet its nice. We'd >also love to use it to cool down. Last night it was 27.c overnight and >today where we live its going to be 42.c. It's 6.45am and the moment and >its alread 32.c. Bring on the snow. > > > Re: Psuedo, Weight > > > > Merry Christmas Everyone, > > > > Just wondering if any one else out there whose children are on pulmozyme >has increased in weight when they usaually are slow gainers? > > > > Thanks! > > Would anybody like some snow? More is coming. > > Amy,5.5wocf,3.5wcf,3monthowocf > > > > > > Quote Link to comment Share on other sites More sharing options...
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