Complications of Failure to Thrive

[Beccamom]

I have an odd question.  I read a lot about CF and failure to thrive and my daughter has been dx FTT since 2 weeks when she dropped from 5 lbs 10z at birth to 4 lbs 0 oz and well never gets above 3rd%tile height or weight.  Recently she went from 59lbs to 52lbs during her hospitalization.  Her knees hurt really bad and buckle pretty randomly.  I took her to the pediatrician and he felt it was a gymnastics injury since she told him they hurt for months.  Although she has been out of the gym for 6 weeks now never bothered to tell me or her coach.  She began physical therapy for her knees on the referral of an orthopedic surgeon.  Today she jumped 1 in off a tiny trampoline and she looked absolutely terrified as though she was just going to fall over.  Well her knees buckled and she caught herself right before falling.  Could this be from her weight loss?  Is this a weight loss worst case scenario why CFers need a "little padding" I keep reading about.  My daughter was a level 8 competitive gymnast, but this is the second time in her gymnastics career that she has gotten so week that she has to go to PT.  Last time she had not lost as much weight and it took 5 months to bounce back and this time she was sick far longer (8 months before the hospitalization) and I am concerned about how long it is taking her to get back to pain free walking let alone the gym. 
 
Thanks for all of your help.
 

 

[Beccamom]

I have an odd question. I read a lot about CF and failure to thrive and my daughter has been dx FTT since 2 weeks when she dropped from 5 lbs 10z at birth to 4 lbs 0 oz and well never gets above 3rd%tile height or weight. Recently she went from 59lbs to 52lbs during her hospitalization. Her knees hurt really bad and buckle pretty randomly. I took her to the pediatrician and he felt it was a gymnastics injury since she told him they hurt for months. Although she has been out of the gym for 6 weeks now never bothered to tell me or her coach. She began physical therapy for her knees on the referral of an orthopedic surgeon. Today she jumped 1 in off a tiny trampoline and she looked absolutely terrified as though she was just going to fall over. Well her knees buckled and she caught herself right before falling. Could this be from her weight loss? Is this a weight loss worst case scenario why CFers need a "little padding" I keep reading about. My daughter was a level 8 competitive gymnast, but this is the second time in her gymnastics career that she has gotten so week that she has to go to PT. Last time she had not lost as much weight and it took 5 months to bounce back and this time she was sick far longer (8 months before the hospitalization) and I am concerned about how long it is taking her to get back to pain free walking let alone the gym.

Thanks for all of your help.

 

[Beccamom]

<p>I have an odd question. I read a lot about CF and failure to thrive and my daughter has been dx FTT since 2 weeks when she dropped from 5 lbs 10z at birth to 4 lbs 0 oz and well never gets above 3rd%tile height or weight. Recently she went from 59lbs to 52lbs during her hospitalization. Her knees hurt really bad and buckle pretty randomly. I took her to the pediatrician and he felt it was a gymnastics injury since she told him they hurt for months. Although she has been out of the gym for 6 weeks now never bothered to tell me or her coach. She began physical therapy for her knees on the referral of an orthopedic surgeon. Today she jumped 1 in off a tiny trampoline and she looked absolutely terrified as though she was just going to fall over. Well her knees buckled and she caught herself right before falling. Could this be from her weight loss? Is this a weight loss worst case scenario why CFers need a "little padding" I keep reading about. My daughter was a level 8 competitive gymnast, but this is the second time in her gymnastics career that she has gotten so week that she has to go to PT. Last time she had not lost as much weight and it took 5 months to bounce back and this time she was sick far longer (8 months before the hospitalization) and I am concerned about how long it is taking her to get back to pain free walking let alone the gym.
<p>
<p>Thanks for all of your help.
<p>

 

[hmw]

Re. the pain for months in the knees- people with CF can also have joint pain. This is a new issue for my daughter and she's feeling it particularly in her ankles and knees. I was watching her at dance last night and she particularly struggled through ballet; the jumps and turns and anything involving twisting were very hard and her legs buckled under her several times. And that is nothing like the impact your daughter puts on her joints doing what she does (level 8- wow!!)

But the weight loss... yeah, that affects our kids on so many levels. It will affect energy levels, academic performance, and strength- and as an athlete she needs a lot going in to equal what she's burning up every day, never mind enough in reserves to grow. So I do believe the weakness you see could be clearly related to the recent weight loss and illness.

When it comes to weight loss 'worst case' issues, we worry the most about how low bmi affects respiratory health. The worse someone's nutritional status is, it negatively impacts their pulmonary health, even into adulthood. So it's very important for so many reasons to try and improve nutritional status as much as possible.

 

[hmw]

Re. the pain for months in the knees- people with CF can also have joint pain. This is a new issue for my daughter and she's feeling it particularly in her ankles and knees. I was watching her at dance last night and she particularly struggled through ballet; the jumps and turns and anything involving twisting were very hard and her legs buckled under her several times. And that is nothing like the impact your daughter puts on her joints doing what she does (level 8- wow!!)

But the weight loss... yeah, that affects our kids on so many levels. It will affect energy levels, academic performance, and strength- and as an athlete she needs a lot going in to equal what she's burning up every day, never mind enough in reserves to grow. So I do believe the weakness you see could be clearly related to the recent weight loss and illness.

When it comes to weight loss 'worst case' issues, we worry the most about how low bmi affects respiratory health. The worse someone's nutritional status is, it negatively impacts their pulmonary health, even into adulthood. So it's very important for so many reasons to try and improve nutritional status as much as possible.

 

[hmw]

Re. the pain for months in the knees- people with CF can also have joint pain. This is a new issue for my daughter and she's feeling it particularly in her ankles and knees. I was watching her at dance last night and she particularly struggled through ballet; the jumps and turns and anything involving twisting were very hard and her legs buckled under her several times. And that is nothing like the impact your daughter puts on her joints doing what she does (level 8- wow!!)
<br />
<br />But the weight loss... yeah, that affects our kids on so many levels. It will affect energy levels, academic performance, and strength- and as an athlete she needs a lot going in to equal what she's burning up every day, never mind enough in reserves to grow. So I do believe the weakness you see could be clearly related to the recent weight loss and illness.
<br />
<br />When it comes to weight loss 'worst case' issues, we worry the most about how low bmi affects respiratory health. The worse someone's nutritional status is, it negatively impacts their pulmonary health, even into adulthood. So it's very important for so many reasons to try and improve nutritional status as much as possible.

 

[Beccamom]

Harriet,
 
Thank you for your continued support during this difficult time.  The respiratory concern does match my daughter's experience FEV1 in the 30s at her lowest weight and on its way back up with weight gain and then down again with the recent weight loss and hopefully on its way back up with the new weight gain.  Wow joint pain too.  I am so sorry to hear your daughter is having to deal with that too.  You mentioned turns caused her knees to give out.  The orthopedic doctor we saw felt that my daughter's twisting tumbling skills caused her to stretch the inside or one knee and the outside of the other knee.  We are doing stretching in addition to strengthening in PT.  I will be happy if she can just walk around the block pain free without her knees buckling.  If she can get back to gymnastics, at this point, that would be a bonus.  You could ask your DD's dance teacher for some stretches or check in with a PT.  My daughter has half the flexibility one direction than the other on her ITB band between hip and knee.  Maybe the stretching could help your daughter's pain too.  These poor kids.  My children are fortunate enough to have 2 great-grandparents independently living in their 90s and seem to have less health issues and less daily pain and meds than my daughter.  I can only hope that some how she will have their genes for longetivity.

 

[Beccamom]

Harriet,

Thank you for your continued support during this difficult time. The respiratory concern does match my daughter's experience FEV1 in the 30s at her lowest weight and on its way back up with weight gain and then down again with the recent weight loss and hopefully on its way back up with the new weight gain. Wow joint pain too. I am so sorry to hear your daughter is having to deal with that too. You mentioned turns caused her knees to give out. The orthopedic doctor we saw felt that my daughter's twisting tumbling skills caused her to stretch the inside or one knee and the outside of the other knee. We are doing stretching in addition to strengthening in PT. I will be happy if she can just walk around the block pain free without her knees buckling. If she can get back to gymnastics, at this point, that would be a bonus. You could ask your DD's dance teacher for some stretches or check in with a PT. My daughter has half the flexibility one direction than the other on her ITB band between hip and knee. Maybe the stretching could help your daughter's pain too. These poor kids. My children are fortunate enough to have 2 great-grandparents independently living in their 90s and seem to have less health issues and less daily pain and meds than my daughter. I can only hope that some how she will have their genes for longetivity.

 

[Beccamom]

<p>Harriet,
<p>
<p>Thank you for your continued support during this difficult time. The respiratory concern does match my daughter's experience FEV1 in the 30s at her lowest weight and on its way back up with weight gain and then down again with the recent weight loss and hopefully on its way back up with the new weight gain. Wow joint pain too. I am so sorry to hear your daughter is having to deal with that too. You mentioned turns caused her knees to give out. The orthopedic doctor we saw felt that my daughter's twisting tumbling skills caused her to stretch the inside or one knee and the outside of the other knee. We are doing stretching in addition to strengthening in PT. I will be happy if she can just walk around the block pain free without her knees buckling. If she can get back to gymnastics, at this point, that would be a bonus. You could ask your DD's dance teacher for some stretches or check in with a PT. My daughter has half the flexibility one direction than the other on her ITB band between hip and knee. Maybe the stretching could help your daughter's pain too. These poor kids. My children are fortunate enough to have 2 great-grandparents independently living in their 90s and seem to have less health issues and less daily pain and meds than my daughter. I can only hope that some how she will have their genes for longetivity.