Guest guest Posted June 28, 2003 Report Share Posted June 28, 2003 hi sara my name is michelle and i am the mother of anna who is 18 months old we live in peoria illinois do you come to peoria for clinic ? we are not very fare from the clinic about 5 minutes hope all is well i just wanted to intrduce my self michelle mom of caitlin8 wo/cf erin 7 wo/cf moira 3wo/cf andanna 18 months w/cf Re: New to board > Hi , > I live near Springfield Illinois. What CF clinic does Lexie go to? > My husband and I used to camp at Lake Shelbyville years ago, long > before Zachary. > I understand your frustration with non-cf parents. They are caring > and sweet, but it is like we are speaking a foreign language to them. > Sometimes they just don't get it. This group is a huge source of > information and comfort. Welcome! > Sara - mommy to Zach 16 months > > > > My name is and I am the mother of Lexie, almost 9, with > CF. > > She takes TOBI, vest therapy twice a day, albuterol and cromolyn > > twice a day, Sporanox, Zantac, Zyrtec, and of course enzymes > > (Lipram). I think I am still in denial about her CF sometimes, > but > > after reading this board I am getting a huge wake-up call. I just > > wish we could be normal -- not having to take machines > > everywhere, " have you taken your enzymes " , etc., etc. Lexie > actually > > does very well, although it seems like when she is off TOBI for 28 > > days she gets a cold or something. I am a medical > transcriptionist > > who works at home so at least I am here with her. I guess I am > just > > feeling overwhelmed like everyone else and need to vent to people > who > > might understand. Non-CF parents try, but they don't really > know. I > > guess because for the most part I try to be cheery about > everything. > > I am rambling. I just want to introduce myself and become a part > of > > the board. > > > > -- Findlay, Illinois > > > > ------------------------------------------- > 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. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2003 Report Share Posted June 29, 2003 hi sara it sounds like zach is gaining pretty well anna at our last visit was 22 lbs and was 17 months old i have been useing the pedia sure and the instant breakfast things for anna and loves them it says on the box if you mix them with soy milk that it adds more cals so the soy milk might work and the flavor will hide the differant taste from him hope all is well talk to you soon michelle mom of caitlin8wo/cf erin 7 wo/cf moira 3 wo/cf and anna 18 months w/cf Re: New to board > Hi , > We got to Cardinal Glennon Children's Hospital in St Louis. It is a > two hour drive for Zach's appointments, but we think it is worth > it. The Springfield doc did not handle Zach being a baby very well. > Now Zach sees a pediatric pulmonologist in St Louis who deals only > with kids. > Hope is doing well. We just had Zach weighed and he is 21 > pounds at 16 months. We are having trouble getting him to gain > weight? Any ideas? We are testing out our theory that he may be > lactose intolerant since we have had him on whole milk, cheese, etc. > since his diagnosis and his bowel movements and gas have not > improved. I am trying pediasure this week instead of whole milk to > see if it makes any difference. Unfortunately, lactose free whole > milk is not sold anywhere in my small town, so I am using pediasure > instead. > Thanks for introducing yourself! > Sara - mommy to Zach 16 months wcf > > > > > > > > > > My name is and I am the mother of Lexie, almost 9, with > > > CF. > > > > She takes TOBI, vest therapy twice a day, albuterol and > cromolyn > > > > twice a day, Sporanox, Zantac, Zyrtec, and of course enzymes > > > > (Lipram). I think I am still in denial about her CF sometimes, > > > but > > > > after reading this board I am getting a huge wake-up call. I > just > > > > wish we could be normal -- not having to take machines > > > > everywhere, " have you taken your enzymes " , etc., etc. Lexie > > > actually > > > > does very well, although it seems like when she is off TOBI > for 28 > > > > days she gets a cold or something. I am a medical > > > transcriptionist > > > > who works at home so at least I am here with her. I guess I am > > > just > > > > feeling overwhelmed like everyone else and need to vent to > people > > > who > > > > might understand. Non-CF parents try, but they don't really > > > know. I > > > > guess because for the most part I try to be cheery about > > > everything. > > > > I am rambling. I just want to introduce myself and become a > part > > > of > > > > the board. > > > > > > > > -- Findlay, Illinois > > > > > > > > > > > > ------------------------------------------- > > > 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. > > > > > > ------------------------------------ > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2003 Report Share Posted July 6, 2003 In a message dated 6/26/2003 3:57:04 PM Central Daylight Time, sara@... writes: > I know what you mean about mixed feelings. I really like Dr Albers > at CG and Judy the CF Coordinator is great. They will also phone in > scripts if needed. I can e-mail Dr Albers directly if I need to. He > will talk to us for hours about CF and answer every question, no > matter how silly. > However, I wonder if they are being aggressive enough. Zach seems > really healthy, but his digestion is the pits. We just keep > increasing his enzymes, but he hasn't gained an ounce in a while. > His lungs are clear and he has only had 3 ear infections. We have > been really lucky, so I wonder if I should just chill out about it. > I also just met a father whose daughter goes to a different clinic > in St Louis and she has not been hospitalized since she was 2 months > old and she is now 15 years old! Another mother that uses CG has a > 14 year old son and he is in the hospital for at least a week every > year. > There could be many reasons for this, but I wonder if the clinic > care plays a role? > I guess we just have to try to stay informed and hope for the best. > Sara > I really think taking extra vitamins help kids with CF stay healthy and help them put weight on. My girls started using Shaklee vitamins right away and we never had problems with weight then I decide to try a cheaper brand and it didn't work as well and they were not putting weight on as soon as we started back on the shaklee they were gaining weight again. This is just my personally opinion I really think you get what you pay for when it comes to vitamins. Deb A Quote Link to comment Share on other sites More sharing options...
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