Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 Hello all, Happy New Year! Sorry I have been totally swamped through the holidays and since! Sitting up here in upstate NY only an hour and a half from Rosemary in over 20 inches of snow! We got 18 inches on Christmas. Then some melts and we get 10 to 12 more dumped on us again. Thank you God for turning off the snow machine but we now need some WARMER weather! I grew up in the Midwest in the 80's and this is the reason we moved back east! Now everyone understands a good Midwestern winter.....SNOW SNOW SNOW AND SUBZERO TEMPS!!! Well, that's not what I need the help with. This year has started off with a bang or shall I say a CRASH! I had a car accident on the 8th on the way home from the day from HELL at the CF center with both Moe and Jack. The good news is the car is not totaled just $8,400 worth of damage! Thank God for insurance! NO ONE WAS HURT!!!! And did not kill me!! Pretty scary though BOTH airbags went off. Jack is still having nightmares! Well, enough about that! Both kids are A+ in GI (This is an absolute 1st time event for us!! GERD and Crohns too!) Jack is doing OK pulm wise he is a little congested but nothing like we have seen in the past and nothing we can't handle. Now onto my problem maker Moe. Moe has complaining that she is not feeling well since the beginning of Dec. She is running really LOW temps. She is averaging around 97.5 and running as low as 96.4. It is RARE that she is 98.anything. She is fatigued and just plain feeling yucky but cannot tell me what is the exact problem. When we went to the Center she lost 5 pounds in 2 months and I said her appetite was almost nil. I offer her EVERYTHING under the sun she nibbles and just leaves it. THIS IS NOT LIKE MY LITTLE PORKER! Yes, she is skinny but she can eat her father under the table if you give her the chance to. SO I started to look at her PFTs the are down but high than her all time low back in Oct. They are lower than this time last year. I mentioned the continuous low temps and the not feeling well. So we ran the blood for Lyme, Mono (which she supposingly had 4 yrs ago, looooong story but we already knew what that would say) we checked cbc of course and Thyroid panel and metabolic a whole sh*tload of things and NOTHING came back as the problem. Well, now they say she really isn't running these low temps she probably has a fever. So they want me to take her temp rectal! Yeah right on a 12 yr. old! Well, I did and she is running between 99 and 100 so I figure low grade to me. Well, I think we need a tune up and they are saying not yet give it a few more days. I am losing my patience! Am I overreacting! Or do we need to be tuned up!!!! HEEEEELLLPPP be for there is a shooting in NYC surprisingly on the 7th floor of Columbia Pres!!!! Rosemary Wait maybe we can meet up at ST. Vinnys I hear they have a Great Cf Center!!!! ( not really ready to leap yet but getting really close!) Meg Mom of 3; 12yowcf & Crohn's, 7 yowocf, 2yowcf & GERD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 what a delimena your in. Gosh, It seems odd they cant find why with all those tests. I sure do hope they can get some idea. maybe someone on the list will have had that experience & remember what it was. You can suggest all your told about to them. MAYBE , one will be the right thing. take care of you too!! LOVE & HUGS< GRSNDMOMBEV I NEED HELP Hello all, Happy New Year! Sorry I have been totally swamped through the holidays and since! Sitting up here in upstate NY only an hour and a half from Rosemary in over 20 inches of snow! We got 18 inches on Christmas. Then some melts and we get 10 to 12 more dumped on us again. Thank you God for turning off the snow machine but we now need some WARMER weather! I grew up in the Midwest in the 80's and this is the reason we moved back east! Now everyone understands a good Midwestern winter.....SNOW SNOW SNOW AND SUBZERO TEMPS!!! Well, that's not what I need the help with. This year has started off with a bang or shall I say a CRASH! I had a car accident on the 8th on the way home from the day from HELL at the CF center with both Moe and Jack. The good news is the car is not totaled just $8,400 worth of damage! Thank God for insurance! NO ONE WAS HURT!!!! And did not kill me!! Pretty scary though BOTH airbags went off. Jack is still having nightmares! Well, enough about that! Both kids are A+ in GI (This is an absolute 1st time event for us!! GERD and Crohns too!) Jack is doing OK pulm wise he is a little congested but nothing like we have seen in the past and nothing we can't handle. Now onto my problem maker Moe. Moe has complaining that she is not feeling well since the beginning of Dec. She is running really LOW temps. She is averaging around 97.5 and running as low as 96.4. It is RARE that she is 98.anything. She is fatigued and just plain feeling yucky but cannot tell me what is the exact problem. When we went to the Center she lost 5 pounds in 2 months and I said her appetite was almost nil. I offer her EVERYTHING under the sun she nibbles and just leaves it. THIS IS NOT LIKE MY LITTLE PORKER! Yes, she is skinny but she can eat her father under the table if you give her the chance to. SO I started to look at her PFTs the are down but high than her all time low back in Oct. They are lower than this time last year. I mentioned the continuous low temps and the not feeling well. So we ran the blood for Lyme, Mono (which she supposingly had 4 yrs ago, looooong story but we already knew what that would say) we checked cbc of course and Thyroid panel and metabolic a whole sh*tload of things and NOTHING came back as the problem. Well, now they say she really isn't running these low temps she probably has a fever. So they want me to take her temp rectal! Yeah right on a 12 yr. old! Well, I did and she is running between 99 and 100 so I figure low grade to me. Well, I think we need a tune up and they are saying not yet give it a few more days. I am losing my patience! Am I overreacting! Or do we need to be tuned up!!!! HEEEEELLLPPP be for there is a shooting in NYC surprisingly on the 7th floor of Columbia Pres!!!! Rosemary Wait maybe we can meet up at ST. Vinnys I hear they have a Great Cf Center!!!! ( not really ready to leap yet but getting really close!) Meg Mom of 3; 12yowcf & Crohn's, 7 yowocf, 2yowcf & GERD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 Opinion from a mom: You know best. You are with her all the time and recognize the changes. You are probably right. Why would they want to wait? For what? Lung damage? Weight loss? Just my opinion, but I put my money on the mom every time! Lenora -- http://www.lenoradegen.com Give a gift of art...Charming renderings of a home or establishment...Original, one-of-a-kind pen & ink or watercolor...Special prices available only until November 29th, 2002 http://www.cfawareness.org ....in memory...in hope...dispelling the darkness...Learn more about Cystic Fibrosis and the special people who cope with it every day Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 ---Meg you described my daughter to a tee last yr at this time. She ended up going into the hospital for a week. Her fever was up to 102 for 5 days, finally they admitted her. She wouldn't eat, was very tired all the time, and very pale. I would definatly(m.s.) have her checked in and get that tune up done. Amber lost 20 pounds with that whole ordeal, very scary. Good luck, just do what you feel is the best thing for her. Margo, mom of Amber 14 w/cf. In cfparents , MMolls@a... wrote: > Hello all, > Happy New Year! Sorry I have been totally swamped through the holidays and > since! Sitting up here in upstate NY only an hour and a half from Rosemary > in over 20 inches of snow! We got 18 inches on Christmas. Then some melts > and we get 10 to 12 more dumped on us again. Thank you God for turning off > the snow machine but we now need some WARMER weather! I grew up in the > Midwest in the 80's and this is the reason we moved back east! Now everyone > understands a good Midwestern winter.....SNOW SNOW SNOW AND SUBZERO TEMPS!!! > > > Well, that's not what I need the help with. This year has started off with a > bang or shall I say a CRASH! I had a car accident on the 8th on the way home > from the day from HELL at the CF center with both Moe and Jack. The good > news is the car is not totaled just $8,400 worth of damage! Thank God for > insurance! NO ONE WAS HURT!!!! And did not kill me!! Pretty scary > though BOTH airbags went off. Jack is still having nightmares! > > Well, enough about that! Both kids are A+ in GI (This is an absolute > 1st time event for us!! GERD and Crohns too!) Jack is doing OK pulm wise he > is a little congested but nothing like we have seen in the past and nothing > we can't handle. > Now onto my problem maker Moe. Moe has complaining that she is not > feeling well since the beginning of Dec. She is running really LOW temps. > She is averaging around 97.5 and running as low as 96.4. It is RARE that she > is 98.anything. She is fatigued and just plain feeling yucky but cannot tell > me what is the exact problem. > When we went to the Center she lost 5 pounds in 2 months and I said her > appetite was almost nil. I offer her EVERYTHING under the sun she nibbles > and just leaves it. THIS IS NOT LIKE MY LITTLE PORKER! Yes, she is skinny > but she can eat her father under the table if you give her the chance to. SO > I started to look at her PFTs the are down but high than her all time low > back in Oct. They are lower than this time last year. I mentioned the > continuous low temps and the not feeling well. So we ran the blood for Lyme, > Mono (which she supposingly had 4 yrs ago, looooong story but we already knew > what that would say) we checked cbc of course and Thyroid panel and metabolic > a whole sh*tload of things and NOTHING came back as the problem. Well, now > they say she really isn't running these low temps she probably has a fever. > So they want me to take her temp rectal! Yeah right on a 12 yr. old! Well, > I did and she is running between 99 and 100 so I figure low grade to me. > Well, I think we need a tune up and they are saying not yet give it a few > more days. I am losing my patience! Am I overreacting! Or do we need to be > tuned up!!!! > > HEEEEELLLPPP be for there is a shooting in NYC surprisingly on the 7th floor > of Columbia Pres!!!! Rosemary Wait maybe we can meet up at ST. Vinnys I hear > they have a Great Cf Center!!!! ( not really ready to leap yet but getting > really close!) > > > Meg > Mom of 3; 12yowcf & Crohn's, 7 yowocf, 2yowcf & GERD > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 Hi Meg, as always when teens and preteens present with unexplained weight loss I recommend to ask for an oral glucose tolerance test. That's the best and most accurate method to detect cf related diabetes as early as possible. And the good thing I learned about that test last week is, it's really cheap. They recommend it here in Germany now during pregnancy and Silke will have to pay only 5 bucks for the lab and another five bucks for the glucose drink. Of course I hope that Moe doesn't have to deal with diabetes so early, but the reason for the weight loss and her feeling unwell has to be found. Good Luck! Peace Torsten Quote Link to comment Share on other sites More sharing options...
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