Did your CF baby experience trouble sleeping?

RonnieSharpe · Oct 1, 2009

Here is an email I received recently:

Hi Ronnie, I saw an invitation from you for queries by new parents. My daughter has a four- month-old son who was diagnosed at two weeks old; she does not have time for Facebook or even for emailing right now. Our little Aidan sleeps only around ten hours out of twenty-four; he gets so tired, sleepy, and cranky during the day but can't fall asleep. When he does go to sleep during the day he only sleeps a short time.

My daughter has mentioned this problem at her treatment center (Vanderbilt) several times but they don't seem to grasp the severity of the behavior - although they do recognize he isn't gaining the weight he should, given the number of calories he ingests. I had this wild idea that maybe his electrolytes are depleted when he is so "worked up" and "hyper," and perhaps several ounces of Pedialyte could help. Table salt is added to his formula but maybe there are other elements missing from his body. Do you have any other ideas about this problem - have you heard of this problem? They are desperate for rest and peace!

Ronnie: I do not have any experience with this so I couldn't be too much help. I'm hoping some of you may be able to shed some light on this.

RonnieSharpe · Oct 1, 2009

Here is an email I received recently:

Hi Ronnie, I saw an invitation from you for queries by new parents. My daughter has a four- month-old son who was diagnosed at two weeks old; she does not have time for Facebook or even for emailing right now. Our little Aidan sleeps only around ten hours out of twenty-four; he gets so tired, sleepy, and cranky during the day but can't fall asleep. When he does go to sleep during the day he only sleeps a short time.

My daughter has mentioned this problem at her treatment center (Vanderbilt) several times but they don't seem to grasp the severity of the behavior - although they do recognize he isn't gaining the weight he should, given the number of calories he ingests. I had this wild idea that maybe his electrolytes are depleted when he is so "worked up" and "hyper," and perhaps several ounces of Pedialyte could help. Table salt is added to his formula but maybe there are other elements missing from his body. Do you have any other ideas about this problem - have you heard of this problem? They are desperate for rest and peace!

Ronnie: I do not have any experience with this so I couldn't be too much help. I'm hoping some of you may be able to shed some light on this.

RonnieSharpe · Oct 1, 2009

Here is an email I received recently:

Hi Ronnie, I saw an invitation from you for queries by new parents. My daughter has a four- month-old son who was diagnosed at two weeks old; she does not have time for Facebook or even for emailing right now. Our little Aidan sleeps only around ten hours out of twenty-four; he gets so tired, sleepy, and cranky during the day but can't fall asleep. When he does go to sleep during the day he only sleeps a short time.

My daughter has mentioned this problem at her treatment center (Vanderbilt) several times but they don't seem to grasp the severity of the behavior - although they do recognize he isn't gaining the weight he should, given the number of calories he ingests. I had this wild idea that maybe his electrolytes are depleted when he is so "worked up" and "hyper," and perhaps several ounces of Pedialyte could help. Table salt is added to his formula but maybe there are other elements missing from his body. Do you have any other ideas about this problem - have you heard of this problem? They are desperate for rest and peace!

Ronnie: I do not have any experience with this so I couldn't be too much help. I'm hoping some of you may be able to shed some light on this.

RonnieSharpe · Oct 1, 2009

Here is an email I received recently:

Hi Ronnie, I saw an invitation from you for queries by new parents. My daughter has a four- month-old son who was diagnosed at two weeks old; she does not have time for Facebook or even for emailing right now. Our little Aidan sleeps only around ten hours out of twenty-four; he gets so tired, sleepy, and cranky during the day but can't fall asleep. When he does go to sleep during the day he only sleeps a short time.

My daughter has mentioned this problem at her treatment center (Vanderbilt) several times but they don't seem to grasp the severity of the behavior - although they do recognize he isn't gaining the weight he should, given the number of calories he ingests. I had this wild idea that maybe his electrolytes are depleted when he is so "worked up" and "hyper," and perhaps several ounces of Pedialyte could help. Table salt is added to his formula but maybe there are other elements missing from his body. Do you have any other ideas about this problem - have you heard of this problem? They are desperate for rest and peace!

Ronnie: I do not have any experience with this so I couldn't be too much help. I'm hoping some of you may be able to shed some light on this.

RonnieSharpe · Oct 1, 2009

Here is an email I received recently:
 
 Hi Ronnie, I saw an invitation from you for queries by new parents. My daughter has a four- month-old son who was diagnosed at two weeks old; she does not have time for Facebook or even for emailing right now. Our little Aidan sleeps only around ten hours out of twenty-four; he gets so tired, sleepy, and cranky during the day but can't fall asleep. When he does go to sleep during the day he only sleeps a short time.
 
 My daughter has mentioned this problem at her treatment center (Vanderbilt) several times but they don't seem to grasp the severity of the behavior - although they do recognize he isn't gaining the weight he should, given the number of calories he ingests. I had this wild idea that maybe his electrolytes are depleted when he is so "worked up" and "hyper," and perhaps several ounces of Pedialyte could help. Table salt is added to his formula but maybe there are other elements missing from his body. Do you have any other ideas about this problem - have you heard of this problem? They are desperate for rest and peace!
 
 Ronnie: I do not have any experience with this so I couldn't be too much help. I'm hoping some of you may be able to shed some light on this.

Ratatosk · Oct 1, 2009

Could be reflux -- DS didn't usually spit up, but was difficult to burp and was on zantac, plus we had the end of his crib matteress raised up slightly so his head was at an incline (higher than body). Could be he's uncomfortable due to reflux, silent reflux. A lot of people wcf have reflux issues...

DS was also used to noise after spending 6 weeks in the NICU, so we figured it was too quiet for him.

Sinus issues, though he's probably much too young for that. A friend of mine's 3 year old recently had sinus surgery do to blockage.

Ratatosk · Oct 1, 2009

Could be reflux -- DS didn't usually spit up, but was difficult to burp and was on zantac, plus we had the end of his crib matteress raised up slightly so his head was at an incline (higher than body). Could be he's uncomfortable due to reflux, silent reflux. A lot of people wcf have reflux issues...

DS was also used to noise after spending 6 weeks in the NICU, so we figured it was too quiet for him.

Sinus issues, though he's probably much too young for that. A friend of mine's 3 year old recently had sinus surgery do to blockage.

Ratatosk · Oct 1, 2009

Could be reflux -- DS didn't usually spit up, but was difficult to burp and was on zantac, plus we had the end of his crib matteress raised up slightly so his head was at an incline (higher than body). Could be he's uncomfortable due to reflux, silent reflux. A lot of people wcf have reflux issues...

DS was also used to noise after spending 6 weeks in the NICU, so we figured it was too quiet for him.

Sinus issues, though he's probably much too young for that. A friend of mine's 3 year old recently had sinus surgery do to blockage.

Ratatosk · Oct 1, 2009

Could be reflux -- DS didn't usually spit up, but was difficult to burp and was on zantac, plus we had the end of his crib matteress raised up slightly so his head was at an incline (higher than body). Could be he's uncomfortable due to reflux, silent reflux. A lot of people wcf have reflux issues...

DS was also used to noise after spending 6 weeks in the NICU, so we figured it was too quiet for him.

Sinus issues, though he's probably much too young for that. A friend of mine's 3 year old recently had sinus surgery do to blockage.

Ratatosk · Oct 1, 2009

Could be reflux -- DS didn't usually spit up, but was difficult to burp and was on zantac, plus we had the end of his crib matteress raised up slightly so his head was at an incline (higher than body). Could be he's uncomfortable due to reflux, silent reflux. A lot of people wcf have reflux issues...
 
 DS was also used to noise after spending 6 weeks in the NICU, so we figured it was too quiet for him.
 
 Sinus issues, though he's probably much too young for that. A friend of mine's 3 year old recently had sinus surgery do to blockage.

ctalbott0609 · Oct 1, 2009

Paige is the same age, and what I'm learning that I've been so overwhelmed with the CF stuff that I've forgotten about some of her normal baby things. Have they began solids yet? It could be that the poor kid is just a bit hungry before bed. Paige always sleeps better on a full stomach. Paige also likes to be put to sleep on her side. This baby may sleep better on his side as well. (Though definitely keep in mind that SIDS is still a huge threat, so no tummy!...unless baby rolls himself in his sleep.)

I also agree with Lisa about reflux. He should be on some type of Antacid such as Zantac. That was one of the FIRST meds that Paige was put on. Also, if there is inadequate air flow, he could just be getting a little congested in his sleep. Sleeping at an incline can help too, as she said.

I hope this solves their problem! Please keep us updated!! If they need another CF mom in their position to talk to, let me know, and I'll be happy to pass along my phone number to you!

ctalbott0609 · Oct 1, 2009

Paige is the same age, and what I'm learning that I've been so overwhelmed with the CF stuff that I've forgotten about some of her normal baby things. Have they began solids yet? It could be that the poor kid is just a bit hungry before bed. Paige always sleeps better on a full stomach. Paige also likes to be put to sleep on her side. This baby may sleep better on his side as well. (Though definitely keep in mind that SIDS is still a huge threat, so no tummy!...unless baby rolls himself in his sleep.)

I also agree with Lisa about reflux. He should be on some type of Antacid such as Zantac. That was one of the FIRST meds that Paige was put on. Also, if there is inadequate air flow, he could just be getting a little congested in his sleep. Sleeping at an incline can help too, as she said.

I hope this solves their problem! Please keep us updated!! If they need another CF mom in their position to talk to, let me know, and I'll be happy to pass along my phone number to you!

ctalbott0609 · Oct 1, 2009

Paige is the same age, and what I'm learning that I've been so overwhelmed with the CF stuff that I've forgotten about some of her normal baby things. Have they began solids yet? It could be that the poor kid is just a bit hungry before bed. Paige always sleeps better on a full stomach. Paige also likes to be put to sleep on her side. This baby may sleep better on his side as well. (Though definitely keep in mind that SIDS is still a huge threat, so no tummy!...unless baby rolls himself in his sleep.)

I also agree with Lisa about reflux. He should be on some type of Antacid such as Zantac. That was one of the FIRST meds that Paige was put on. Also, if there is inadequate air flow, he could just be getting a little congested in his sleep. Sleeping at an incline can help too, as she said.

I hope this solves their problem! Please keep us updated!! If they need another CF mom in their position to talk to, let me know, and I'll be happy to pass along my phone number to you!

ctalbott0609 · Oct 1, 2009

Paige is the same age, and what I'm learning that I've been so overwhelmed with the CF stuff that I've forgotten about some of her normal baby things. Have they began solids yet? It could be that the poor kid is just a bit hungry before bed. Paige always sleeps better on a full stomach. Paige also likes to be put to sleep on her side. This baby may sleep better on his side as well. (Though definitely keep in mind that SIDS is still a huge threat, so no tummy!...unless baby rolls himself in his sleep.)

I also agree with Lisa about reflux. He should be on some type of Antacid such as Zantac. That was one of the FIRST meds that Paige was put on. Also, if there is inadequate air flow, he could just be getting a little congested in his sleep. Sleeping at an incline can help too, as she said.

I hope this solves their problem! Please keep us updated!! If they need another CF mom in their position to talk to, let me know, and I'll be happy to pass along my phone number to you!

ctalbott0609 · Oct 1, 2009

Paige is the same age, and what I'm learning that I've been so overwhelmed with the CF stuff that I've forgotten about some of her normal baby things. Have they began solids yet? It could be that the poor kid is just a bit hungry before bed. Paige always sleeps better on a full stomach. Paige also likes to be put to sleep on her side. This baby may sleep better on his side as well. (Though definitely keep in mind that SIDS is still a huge threat, so no tummy!...unless baby rolls himself in his sleep.)
 
 I also agree with Lisa about reflux. He should be on some type of Antacid such as Zantac. That was one of the FIRST meds that Paige was put on. Also, if there is inadequate air flow, he could just be getting a little congested in his sleep. Sleeping at an incline can help too, as she said.
 
 I hope this solves their problem! Please keep us updated!! If they need another CF mom in their position to talk to, let me know, and I'll be happy to pass along my phone number to you!

petnurse · Oct 2, 2009