muscle tone in 3-month old

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marishka

New member
My grandaughter, Abigail, was born in December and diagnosed with CF quickly because of ilius meconium. She was in the NICU for about 4 weeks. Her mom & dad have struggled with her weight but she is at least gaining, so I think we just have to accept that nutrition is the main problem for now. She regularly visite the CF center in LA.

When my daughter took Abby to the pediatrician last week, she said that Abby's muscle tone is not as developed as it should be. My daughter has a friend with a baby close in age and the other baby is better able to move her arms, hold up her head. Is poor muscle tone typical in babies with CF? I can't find anything on it.

The pediatrician told her not to worry, that it is just something to watch and that maybe some pt may be called for, also don't compare your baby since they all grow at their own rates. All good advice, pretty hard to follow. Don't worry, yeah right.

You guys are all so great.. so what's the collective wisdom on CF & muscle tone?
 
M

marishka

New member
My grandaughter, Abigail, was born in December and diagnosed with CF quickly because of ilius meconium. She was in the NICU for about 4 weeks. Her mom & dad have struggled with her weight but she is at least gaining, so I think we just have to accept that nutrition is the main problem for now. She regularly visite the CF center in LA.

When my daughter took Abby to the pediatrician last week, she said that Abby's muscle tone is not as developed as it should be. My daughter has a friend with a baby close in age and the other baby is better able to move her arms, hold up her head. Is poor muscle tone typical in babies with CF? I can't find anything on it.

The pediatrician told her not to worry, that it is just something to watch and that maybe some pt may be called for, also don't compare your baby since they all grow at their own rates. All good advice, pretty hard to follow. Don't worry, yeah right.

You guys are all so great.. so what's the collective wisdom on CF & muscle tone?
 
M

marishka

New member
My grandaughter, Abigail, was born in December and diagnosed with CF quickly because of ilius meconium. She was in the NICU for about 4 weeks. Her mom & dad have struggled with her weight but she is at least gaining, so I think we just have to accept that nutrition is the main problem for now. She regularly visite the CF center in LA.

When my daughter took Abby to the pediatrician last week, she said that Abby's muscle tone is not as developed as it should be. My daughter has a friend with a baby close in age and the other baby is better able to move her arms, hold up her head. Is poor muscle tone typical in babies with CF? I can't find anything on it.

The pediatrician told her not to worry, that it is just something to watch and that maybe some pt may be called for, also don't compare your baby since they all grow at their own rates. All good advice, pretty hard to follow. Don't worry, yeah right.

You guys are all so great.. so what's the collective wisdom on CF & muscle tone?
 
K

kybert

New member
i dont know if there is a link between cf and muscle tone but i have an extremely hard time gaining muscle and keeping it. i also get injuries and soreness just from doing simple things like walking. i guess one could assume there is a link with cf, considering we dont absorb all of the protein we eat. *shrugs* maybe someone else knows something.
 
K

kybert

New member
i dont know if there is a link between cf and muscle tone but i have an extremely hard time gaining muscle and keeping it. i also get injuries and soreness just from doing simple things like walking. i guess one could assume there is a link with cf, considering we dont absorb all of the protein we eat. *shrugs* maybe someone else knows something.
 
K

kybert

New member
i dont know if there is a link between cf and muscle tone but i have an extremely hard time gaining muscle and keeping it. i also get injuries and soreness just from doing simple things like walking. i guess one could assume there is a link with cf, considering we dont absorb all of the protein we eat. *shrugs* maybe someone else knows something.
 
I

izemmom

New member
Emily had poor muscle tone at that age too. I got her set up in our county's birth-to-3 program and she saw a physical therapist for a few months until things improved. I never really found out why, but I have always attributed it to the time she spent in the NICU - also about 4 weeks - hooked up to monitors and unable to move and develop muscles naturally. Once we started doing the exercises with her that the therapist taught us, she developed quickly.

The other issue that hindered her physical develoment was reflux. It was hard for her to sit up and move because of the acid burn in her gi tract (or at least that's what the PT thought...) Once she became more mobile, the reflux improved, and as the reflux improved, she got more mobile!!!

Now, she walks, runs and CLIMBS about as well as any 17 month old. She has a bit of a strange gait which I'm keeping my eye on, but she is definately mobile!

I don't think this is a CF thing...but I do think it is related to being in the hospital for the first month of life. I suggest that she be evaluated by a PT. The birth-to-3 program was affordable and they were great with her. Most states have a comparable program.

Good luck!
 
I

izemmom

New member
Emily had poor muscle tone at that age too. I got her set up in our county's birth-to-3 program and she saw a physical therapist for a few months until things improved. I never really found out why, but I have always attributed it to the time she spent in the NICU - also about 4 weeks - hooked up to monitors and unable to move and develop muscles naturally. Once we started doing the exercises with her that the therapist taught us, she developed quickly.

The other issue that hindered her physical develoment was reflux. It was hard for her to sit up and move because of the acid burn in her gi tract (or at least that's what the PT thought...) Once she became more mobile, the reflux improved, and as the reflux improved, she got more mobile!!!

Now, she walks, runs and CLIMBS about as well as any 17 month old. She has a bit of a strange gait which I'm keeping my eye on, but she is definately mobile!

I don't think this is a CF thing...but I do think it is related to being in the hospital for the first month of life. I suggest that she be evaluated by a PT. The birth-to-3 program was affordable and they were great with her. Most states have a comparable program.

Good luck!
 
I

izemmom

New member
Emily had poor muscle tone at that age too. I got her set up in our county's birth-to-3 program and she saw a physical therapist for a few months until things improved. I never really found out why, but I have always attributed it to the time she spent in the NICU - also about 4 weeks - hooked up to monitors and unable to move and develop muscles naturally. Once we started doing the exercises with her that the therapist taught us, she developed quickly.

The other issue that hindered her physical develoment was reflux. It was hard for her to sit up and move because of the acid burn in her gi tract (or at least that's what the PT thought...) Once she became more mobile, the reflux improved, and as the reflux improved, she got more mobile!!!

Now, she walks, runs and CLIMBS about as well as any 17 month old. She has a bit of a strange gait which I'm keeping my eye on, but she is definately mobile!

I don't think this is a CF thing...but I do think it is related to being in the hospital for the first month of life. I suggest that she be evaluated by a PT. The birth-to-3 program was affordable and they were great with her. Most states have a comparable program.

Good luck!
 
K

ktsmom

New member
Poor muscle tone was one thing that was observed in my daughter in the first few months of her life (she was dx as failure to thrive at the time). She was not dx with CF until age 3 years 3 months. Also, when her GI symptoms were getting worse and we were working for some kind of dx, I noticed that the muscles in her arms and legs were becoming more and more "flaccid", I guess would be the right description. Everyone thought I was nuts.
 
K

ktsmom

New member
Poor muscle tone was one thing that was observed in my daughter in the first few months of her life (she was dx as failure to thrive at the time). She was not dx with CF until age 3 years 3 months. Also, when her GI symptoms were getting worse and we were working for some kind of dx, I noticed that the muscles in her arms and legs were becoming more and more "flaccid", I guess would be the right description. Everyone thought I was nuts.
 
K

ktsmom

New member
Poor muscle tone was one thing that was observed in my daughter in the first few months of her life (she was dx as failure to thrive at the time). She was not dx with CF until age 3 years 3 months. Also, when her GI symptoms were getting worse and we were working for some kind of dx, I noticed that the muscles in her arms and legs were becoming more and more "flaccid", I guess would be the right description. Everyone thought I was nuts.
 
E

Edna0312

New member
My 22mo old (not yet diagnosed with Cf but has PI) was diagnosed with FTT around 5mo and also had very poor muscle tone!! He didn't sit up or crawl on time because of it, but once he got on an aggressive enzyme replacement therapy, and started to gain weight well, he slowly progressed to normal for his age. Only thing now is his speech. Going to see speech therapist starting this week.

Very interesting to me.

Hope things continue to go well.

Edna
 
E

Edna0312

New member
My 22mo old (not yet diagnosed with Cf but has PI) was diagnosed with FTT around 5mo and also had very poor muscle tone!! He didn't sit up or crawl on time because of it, but once he got on an aggressive enzyme replacement therapy, and started to gain weight well, he slowly progressed to normal for his age. Only thing now is his speech. Going to see speech therapist starting this week.

Very interesting to me.

Hope things continue to go well.

Edna
 
E

Edna0312

New member
My 22mo old (not yet diagnosed with Cf but has PI) was diagnosed with FTT around 5mo and also had very poor muscle tone!! He didn't sit up or crawl on time because of it, but once he got on an aggressive enzyme replacement therapy, and started to gain weight well, he slowly progressed to normal for his age. Only thing now is his speech. Going to see speech therapist starting this week.

Very interesting to me.

Hope things continue to go well.

Edna
 
S

sdelorenzo

Guest
I have not seen this discussion much about cf kids having low muscle tone. But I remember when my daughter was in the hospital right before she was diagnosed at six weeks of age that tests showed that her muscles were starting to break down due to failure to thrive. They were concerned that it might be something much worse than cf. So the cf diagnosis was a bit of relief. She started enzymes right away and never had any muscle problems.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
 
S

sdelorenzo

Guest
I have not seen this discussion much about cf kids having low muscle tone. But I remember when my daughter was in the hospital right before she was diagnosed at six weeks of age that tests showed that her muscles were starting to break down due to failure to thrive. They were concerned that it might be something much worse than cf. So the cf diagnosis was a bit of relief. She started enzymes right away and never had any muscle problems.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
 
S

sdelorenzo

Guest
I have not seen this discussion much about cf kids having low muscle tone. But I remember when my daughter was in the hospital right before she was diagnosed at six weeks of age that tests showed that her muscles were starting to break down due to failure to thrive. They were concerned that it might be something much worse than cf. So the cf diagnosis was a bit of relief. She started enzymes right away and never had any muscle problems.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
 
P

purplemartin

New member
My son is 9 months old and is behind on a LOT of his motor skills. At his check up last week, the Pediatrician suggested getting him involved in the "First Steps" program in my hometown for children 0-3 yrs. We will be having our first visit with a therapist this coming Thursday. Anyway, th Ped. suggested that he had most likely fallen behind due to hospital stays and sickness, I also agreed with his theory.

I'd think CF and muscle tone have absolutly nothing to do with each other, except for when the little ones spend a great deal of there baby years in the hospital or being sick. That would be the only link between the two, in my opinion.
 
P

purplemartin

New member
My son is 9 months old and is behind on a LOT of his motor skills. At his check up last week, the Pediatrician suggested getting him involved in the "First Steps" program in my hometown for children 0-3 yrs. We will be having our first visit with a therapist this coming Thursday. Anyway, th Ped. suggested that he had most likely fallen behind due to hospital stays and sickness, I also agreed with his theory.

I'd think CF and muscle tone have absolutly nothing to do with each other, except for when the little ones spend a great deal of there baby years in the hospital or being sick. That would be the only link between the two, in my opinion.
 
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