6 year old with CFRD

[DianeM]

Hi. My 6 year old was diagnosed last year with cystic fibrosis related diabetes...We are still doubtful to a certain extent about the diagnosis because her sugars seem to go up only when she has a lung infection and then stay relatively normal otherwise (diagnosed with CF at 6 months - major pancreatic difficiency). She has had a very difficult time over the past year with 6 tuneups in 1 year...She is presently having a tune up with 4 IV antibiotics...Every time she is off the meds, the infection comes back...I am quite worried. The doctors are seriously considering a lobectomy of her right lower and right middle lobes...I am afraid to consent to this...as she will never get it back if taken out and then we have to hope that the remaining lung stays healthy...Is anyone in the same condition?...The doctors do not say what her prognosis is....they say that every case is different...She has pseudomonas now (very recent), H influenzae, and staph...Any advice or words of wisdom?

Worried mom<img src="i/expressions/brokenheart.gif" border="0">

 

[anonymous]

I put this on the other thread, but I would suggest a second opinion from a CF specialist (I assume your current doctor specializes in CF?) before having the lobectomy. I think there was one other person here on these boards that has had a lobectomy but I don't know if they still post here or not. Hopefully they will see this and let you know of their experience.
Hope

 

[clairebells]

I just wanted to say that I'm so sorry your little girl is having such a difficult time. Six tuneups in a year is an awful lot, especially for a little one... I take it she doesn't respond to oral antibiotics for the staph and h. flu? And diabetes too....that's just too much. A lobectomy sounds so harsh to me for a six year old - I'm guessing those areas of her lungs are severely scarred/infected the dr.s feel they need to remove them? I wish I had some good advice, except I would get a second opinion before agreeing to that. Anyway, my heart goes out to you.... I hope you find some good answers and get her feeling better and stronger soon.

take care,

Jenny (mom to Chrissy 4 w/CF and Claire 6 no CF)

 

[DianeM]

Thanks for your advice. My daughter, Danielle, has quite a few specialized CF doctors on her case and the surgeons are going to perform the lobectomy as a last resort...We hope that it doesn't come to that as we may be almost there. Is there anyone who knows about lobectomies or has had it done? I am wondering about the recuperation involved. Will it take months for her to recover?

She was recently diagnosed with pseudomonas so she is now receiving tobramycin intravenously along with other antibiotics....We hope that this tune up can clear it out...We are praying for a Christmas miracle.

 

[gruff]

I know this is an old message you wrote, but my little grandaughter is going through the same thing right now except for the diabetes. They are watching her closely on that though. Did you child have the lobectomy? How is she doing since? Her specialist recommends this.

 

[gruff]

I know this is an old message you wrote, but my little grandaughter is going through the same thing right now except for the diabetes. They are watching her closely on that though. Did you child have the lobectomy? How is she doing since? Her specialist recommends this.

 

[gruff]

I know this is an old message you wrote, but my little grandaughter is going through the same thing right now except for the diabetes. They are watching her closely on that though. Did you child have the lobectomy? How is she doing since? Her specialist recommends this.