You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Grandson diagnosed with CF through Newborn Screening
- Thread starter mom25kids
- Start date
Aboveallislove
Super Moderator
Are you sure it's not deltaf508? That's the one that is most common. If deltaf508 that is the one our son has and I can give you more info on the research going on for the meds to help fix the functioning. How did the rest go? Do you have any questions? I'm happy to give you my thoughts on "tips" for the first couple months. Also, DON'T forget to wash the nebulizer cups!!! They either didn't tell me or I blanked on it and didn't wash them between using for several days and was a wreck when I finally read the instructions!!! Let me know what else I can help with . . . besides prayers . . . which have been coming.
I'm sorry...yes 508....they said it is the one most common.
Well, our appointment started at 10:30 and we didn't get home till 4:00.......it was exhausting and emotionally draining. The doctor made one mention of some infants dieing and my daughter lost it....that's all she focused on. The doctor was simply addressing life expectancy and giving statistics from newborn to seniors. I'm hoping it normal to have this grieving period....we have had a difficult day. I really feel bad for feeling this way....since I know there is something always that could be worse, but it's all that matters for now.
Aboveallislove, you were right about everything....the day went exactly as you said. This is what he will be doing....pretty much what you said:
he gets 1/8th tsp of salt in formula once a day
he gets 1/2 capsule of enzymes at each feeding....in applesauce as you mentioned
also, vitamins...droperful with bottle....one time a day
breathing treatment will be as needed for now.....he goes back in two weeks
They xrayed lungs and all that is normal
They are concerned with low weight since he is still not back to birthweight.....he was 7lbs 9oz at birth and now he is 7 lbs 7 oz....he only gained 2 oz in the last two weeks. They had us go give blood to check electrolites.
For now, we are trying to see how we can reduce germs in a family of 9...it's not going to be easy.
Thanks for all the help....everyone.....it's so appreciated.
Well, our appointment started at 10:30 and we didn't get home till 4:00.......it was exhausting and emotionally draining. The doctor made one mention of some infants dieing and my daughter lost it....that's all she focused on. The doctor was simply addressing life expectancy and giving statistics from newborn to seniors. I'm hoping it normal to have this grieving period....we have had a difficult day. I really feel bad for feeling this way....since I know there is something always that could be worse, but it's all that matters for now.
Aboveallislove, you were right about everything....the day went exactly as you said. This is what he will be doing....pretty much what you said:
he gets 1/8th tsp of salt in formula once a day
he gets 1/2 capsule of enzymes at each feeding....in applesauce as you mentioned
also, vitamins...droperful with bottle....one time a day
breathing treatment will be as needed for now.....he goes back in two weeks
They xrayed lungs and all that is normal
They are concerned with low weight since he is still not back to birthweight.....he was 7lbs 9oz at birth and now he is 7 lbs 7 oz....he only gained 2 oz in the last two weeks. They had us go give blood to check electrolites.
For now, we are trying to see how we can reduce germs in a family of 9...it's not going to be easy.
Thanks for all the help....everyone.....it's so appreciated.
Aboveallislove
Super Moderator
Hang in there. It IS all "normal" and while the pain is always there, it does get better. The day or our son's appointment I wept the entire time and was huddled hysterically in the corner while dear husband helded the baby during the blood draw--I just couldn't do it. (Still ashamed about that!).
Re the birth weight concern--don't panic--our son was similar and is now at 50%. Now that he has his enzymes, he'll start doing so much better.
One thing to mention re the salt: When we did that for our son it made him cough and it scared the crap out of us and we rushed him to the ER. (That was before sweat test--they had us do it to make sure he perspired enough). You might want to do it slowly to work way up to the entire amount, but be prepared that it might make him cough so you don't panic.
There is alot to remember and what helped me was to put together a spreadsheet by hour showing what I needed to do, when, and I also tracked how much he ate, pooped, etc. which helped b/c they always asked at the next appointments. I also did that for coughes b/c I wasnt sure what was normal.
Write back if any specific things you have questions on.
Hugs and prayers.
More later on the meds in the works for d508f.
Re the birth weight concern--don't panic--our son was similar and is now at 50%. Now that he has his enzymes, he'll start doing so much better.
One thing to mention re the salt: When we did that for our son it made him cough and it scared the crap out of us and we rushed him to the ER. (That was before sweat test--they had us do it to make sure he perspired enough). You might want to do it slowly to work way up to the entire amount, but be prepared that it might make him cough so you don't panic.
There is alot to remember and what helped me was to put together a spreadsheet by hour showing what I needed to do, when, and I also tracked how much he ate, pooped, etc. which helped b/c they always asked at the next appointments. I also did that for coughes b/c I wasnt sure what was normal.
Write back if any specific things you have questions on.
Hugs and prayers.
More later on the meds in the works for d508f.
Thanks so much....yes, he did begin coughing last night......so glad you mentioned that. My daughter got up this morning asking about his coughing. They did mention putting in his formula a little in each bottle...instead of one whole packet in one bottle. Maybe we will try that.
I also wanted to ask....what if we give him the enzymes, then begin to feed him his bottle.....only he doesn't drink it all. If he wants the rest an hour later...should we do more enzymes for that feeding?
I also wanted to ask....what if we give him the enzymes, then begin to feed him his bottle.....only he doesn't drink it all. If he wants the rest an hour later...should we do more enzymes for that feeding?
Aboveallislove
Super Moderator
What our doctor told us what that enzymes can last up to four hours. You don't want to give too many in a day--they had told me the max. Our nutritionist though said to re-enzyme if over an hour. Honestly, if it is only an hour I would not b/c you don't want to hit the "maximum" amount, which can be dangerous. I would call and ask your clinic what they want you to do--NEVER hesitate to call, especially early on--they fully expect it. And also ask what is the maximum they want him to have in a 24 hour period b/c at this age they eat so often. . .
Another thing I wanted to share as an idea given what you said about getting a house of 9 clean: I just didn't and don't have time to have a dust-free, clean house. So we basically have "clean" rooms for ds and then assume everything else is dirty and he doesn't "roam" those areas and we wash hands etc. before feeding him and doing treatments if we are in those other areas. It has worked for us b/c I don't worry if one bathroom is "toxic," etc. and can be stress free knowing the other areas are fine.
Re the research: So with d508f the protein doesn't work right in a couple of ways. There is a company called Vertex which has a drug called VX-809 in trials. They just finished Phase 2 and are moving to Phase 3 with Vx-809 and Kalydeco (which is already FDA approed). The results are very good for helping fix the functioning of the CFTR defct. It isn't a perfect "fix" and it isn't a cure, but it is a HUGE advancement and is likely to change everything! It will likely be 3 years before it is to market if all goes well, BUT your grandson is so young that he'll be getting it before hopefully any possible lung issues. You might want to join that facebook page I mentioned. There's a mom whose 4 year old just started Kalydeco and they did an MRI and it showed his lungs are PERFECT--no damage--and the drug is working so well that he is no longer doing many of the treatments, etc. And there is another drug called VX661 which is suppose to be even better which is about 1 year behind. And many other drugs in the works--I truly think these will be ready and will fix the defect before your grandson hits 1st grade!
Finally, I wanted to ask re the breathing treatments--you said for now it is as needed. Were they going to have you start those and chest percussions after your next appointment? If not, please push on this because it is important for 2x a day breathing treatments and percussions as part of the standard of treatment.
Prayers and hugs
Another thing I wanted to share as an idea given what you said about getting a house of 9 clean: I just didn't and don't have time to have a dust-free, clean house. So we basically have "clean" rooms for ds and then assume everything else is dirty and he doesn't "roam" those areas and we wash hands etc. before feeding him and doing treatments if we are in those other areas. It has worked for us b/c I don't worry if one bathroom is "toxic," etc. and can be stress free knowing the other areas are fine.
Re the research: So with d508f the protein doesn't work right in a couple of ways. There is a company called Vertex which has a drug called VX-809 in trials. They just finished Phase 2 and are moving to Phase 3 with Vx-809 and Kalydeco (which is already FDA approed). The results are very good for helping fix the functioning of the CFTR defct. It isn't a perfect "fix" and it isn't a cure, but it is a HUGE advancement and is likely to change everything! It will likely be 3 years before it is to market if all goes well, BUT your grandson is so young that he'll be getting it before hopefully any possible lung issues. You might want to join that facebook page I mentioned. There's a mom whose 4 year old just started Kalydeco and they did an MRI and it showed his lungs are PERFECT--no damage--and the drug is working so well that he is no longer doing many of the treatments, etc. And there is another drug called VX661 which is suppose to be even better which is about 1 year behind. And many other drugs in the works--I truly think these will be ready and will fix the defect before your grandson hits 1st grade!
Finally, I wanted to ask re the breathing treatments--you said for now it is as needed. Were they going to have you start those and chest percussions after your next appointment? If not, please push on this because it is important for 2x a day breathing treatments and percussions as part of the standard of treatment.
Prayers and hugs
Hello,
Thanks for all the information.....we are very hopeful for success with these drugs. We are just so unsure how to handle something that would happen. I do havea few questions, but first let me address your questions about breathing treatments.
They told us to do the percussions once a day and the breathing treatments as needed. For example, she said if he starts to get congestion then do a breathing treatment and call next day if he is not doing better. I was confused about this as well as I thought he would need those treatments immediately....he does go back in 2 weeks. We are making a call tomorrow to ask about the enzymes and I'm going to ask about breathing treatments also. The home health just delivered the machine tonight and meds just arrived at CVS today also....so I will pick up tomorrow.....but they gave us a pretty good supply of vitamins, enzymes, and extra parts for the machine. I also found out that we can order an extra mask each month, so that we have more for cleaning. I guess we could do the percussions twice a day....I mean really it couldn't hurt....right? The hardest part is getting it under his arms....he just doesn't like those; doesn't want to hold still for it.
Some of my questions:
1. I thought alot about designating clean spaces in the house...I think that is a great idea. I told me daughter that her room should be that space since he is in there with her so much....also her floors are stained concrete and are easy to keep clean.....what about pets.....they didn't talk with us about thaT. wE HAve 3 little dogs and two shed alot. Should we consider giving them away? How important is that?
2. What would raise a concern with his lungs for you? He makes so many sounds that we are unsure. Like he has this snorty sound he makes while sucking on bottle or binky....I asked the doctor about it while he was eating yesterday...she listened and said that it was nothing. Do you have specific things you look for regarding his lungs? They basically just told us congestion, sneezing or coughing.
Thanks so much for your help...I hope you don't mind all the questions.
Thanks for all the information.....we are very hopeful for success with these drugs. We are just so unsure how to handle something that would happen. I do havea few questions, but first let me address your questions about breathing treatments.
They told us to do the percussions once a day and the breathing treatments as needed. For example, she said if he starts to get congestion then do a breathing treatment and call next day if he is not doing better. I was confused about this as well as I thought he would need those treatments immediately....he does go back in 2 weeks. We are making a call tomorrow to ask about the enzymes and I'm going to ask about breathing treatments also. The home health just delivered the machine tonight and meds just arrived at CVS today also....so I will pick up tomorrow.....but they gave us a pretty good supply of vitamins, enzymes, and extra parts for the machine. I also found out that we can order an extra mask each month, so that we have more for cleaning. I guess we could do the percussions twice a day....I mean really it couldn't hurt....right? The hardest part is getting it under his arms....he just doesn't like those; doesn't want to hold still for it.
Some of my questions:
1. I thought alot about designating clean spaces in the house...I think that is a great idea. I told me daughter that her room should be that space since he is in there with her so much....also her floors are stained concrete and are easy to keep clean.....what about pets.....they didn't talk with us about thaT. wE HAve 3 little dogs and two shed alot. Should we consider giving them away? How important is that?
2. What would raise a concern with his lungs for you? He makes so many sounds that we are unsure. Like he has this snorty sound he makes while sucking on bottle or binky....I asked the doctor about it while he was eating yesterday...she listened and said that it was nothing. Do you have specific things you look for regarding his lungs? They basically just told us congestion, sneezing or coughing.
Thanks so much for your help...I hope you don't mind all the questions.
AleksandraKaczynska
New member
hi - We use a steam cleaner for floors and bathrooms - works great, try to get stone out of taucet aerators and apatr from that just keep clean - normal healthy clean. Ventilate rooms and especially bathrooms to get moisture out. Pet are fine just as long as they are healthy and vacinated - just make sure they don't have ear infections. My daughter grew up w ith two odgs, a cat and many fish <img src="i/expressions/face-icon-small-smile.gif" border="0">
the only situation that could end up in giving away pets would be allegies.
when he starts to crawl get house plants out of his way and take them out of his room - due to high risk of pseudomonas in the earth and - being little - will most likely try to get a taste of the earth.
Abiut lungs - we do hand cpt and inhalations from HTS twice a day always - but your granson is very little so hand cpt is not recommended to possibilty of reflux - I would staikc to what your docs say. The inhaltions and excersices or cpr - change with age.
you're doing so very great
the only situation that could end up in giving away pets would be allegies.
when he starts to crawl get house plants out of his way and take them out of his room - due to high risk of pseudomonas in the earth and - being little - will most likely try to get a taste of the earth.
Abiut lungs - we do hand cpt and inhalations from HTS twice a day always - but your granson is very little so hand cpt is not recommended to possibilty of reflux - I would staikc to what your docs say. The inhaltions and excersices or cpr - change with age.
you're doing so very great
Aboveallislove
Super Moderator
1) Re the pets: We don't have any and never would get any b/c we have a ton of allergies in both sides of the family and don't want to risk that added complication. I know many have pets though. Re fish--the water can be dangerous was what our doctors told us but others might have a different take.
2) Re the breathing treatments & percussions: I'd follow-up. They might have intended you to start regularly after next appointment. We were trained on percussions and told to do 2 - 3 times a day from the start--we did 3x a day. We didn't do in certain positions b/c of reflux issues and didn't do for an hour after he ate for same reason. You might want to ask the doctor about reflux and percussions and their position on it, but obviously, if they are having you do 1x a day they are not of the position that you don't do b/c of reflux, but they also recognize it is hard with young ones to do everything. I would ask at next appointment. And ditto re breathing=we were told 2x a day from day one. I would ask the doctor and see what they say (and not change any meds without them saying to).
You might want to start a new string and ask folks what they did for there newborns for breathing and percussions to get a better idea of what is standard--maybe our clinic wasn't.
Re the hard to do: I often did while he was sleeping when very young b/c he really didn't like it, but he got use to it so much that later when still little he would fall asleep when I did percussions--it was calming for him! I have some cute videos of me doing it to when he was about 6 months old giggling up a storm while tapping. He also hated the nebulizer and cried alot for that when little so easier to do when sleeping. But he got use to both real quick.
3) Re cough: I probably called a couple times a week out of worry b/c he seemed to always have a cough. But it was more of a reflux cough now we think. By tracking the cough on paper I was able to tell the doctor and they could tell if it was a concern. It wasn't. If it sounds more like a cold cough (you'd know from other babies--ours is our only so I was rather at see), then it's a problem. But obviously you can call if you are concerned. Ds had a weird sounding cough to me and I actually videoed it and played it at the next appointment and it was nothing. But if doctor could hear the breathing you said and wasn't concerned then I wouldn't be, but you can always bring it up next appointment, or if it gets worse call. Part of the reason they see you so often early on is to be able to listen/catch and also answer these questions. So obviously call if you're concerned but remember they'll be there to check him out soon too. Also, I know it is hard but it is true--you'll soon be able to figure out the coughs, sounds etc.
And you are doing such a great job!!! Hang in there.
2) Re the breathing treatments & percussions: I'd follow-up. They might have intended you to start regularly after next appointment. We were trained on percussions and told to do 2 - 3 times a day from the start--we did 3x a day. We didn't do in certain positions b/c of reflux issues and didn't do for an hour after he ate for same reason. You might want to ask the doctor about reflux and percussions and their position on it, but obviously, if they are having you do 1x a day they are not of the position that you don't do b/c of reflux, but they also recognize it is hard with young ones to do everything. I would ask at next appointment. And ditto re breathing=we were told 2x a day from day one. I would ask the doctor and see what they say (and not change any meds without them saying to).
You might want to start a new string and ask folks what they did for there newborns for breathing and percussions to get a better idea of what is standard--maybe our clinic wasn't.
Re the hard to do: I often did while he was sleeping when very young b/c he really didn't like it, but he got use to it so much that later when still little he would fall asleep when I did percussions--it was calming for him! I have some cute videos of me doing it to when he was about 6 months old giggling up a storm while tapping. He also hated the nebulizer and cried alot for that when little so easier to do when sleeping. But he got use to both real quick.
3) Re cough: I probably called a couple times a week out of worry b/c he seemed to always have a cough. But it was more of a reflux cough now we think. By tracking the cough on paper I was able to tell the doctor and they could tell if it was a concern. It wasn't. If it sounds more like a cold cough (you'd know from other babies--ours is our only so I was rather at see), then it's a problem. But obviously you can call if you are concerned. Ds had a weird sounding cough to me and I actually videoed it and played it at the next appointment and it was nothing. But if doctor could hear the breathing you said and wasn't concerned then I wouldn't be, but you can always bring it up next appointment, or if it gets worse call. Part of the reason they see you so often early on is to be able to listen/catch and also answer these questions. So obviously call if you're concerned but remember they'll be there to check him out soon too. Also, I know it is hard but it is true--you'll soon be able to figure out the coughs, sounds etc.
And you are doing such a great job!!! Hang in there.
Enzymes lasting 4 hours?!!! We were told more like 30 minutes. In fact, because DS is such a slow eater, he starts with enzymes, takes the rest halfway through or near the end. When we go to movies and he's eating popcorn, I'm handing him extra enzyme capsules because the popcorn is soooo high in fat.
DS had reflux, but we did CPT 3-4 times a day since he was a few days old. Today we do vest treatments 3 times a day, more if he's sick.
DS' baseline is no cough. We were told to learn his cough -- is it post nasal drip, nervous habit or more bronchial. When he has developed a cough, it usually means he's coming down with something.
DS had reflux, but we did CPT 3-4 times a day since he was a few days old. Today we do vest treatments 3 times a day, more if he's sick.
DS' baseline is no cough. We were told to learn his cough -- is it post nasal drip, nervous habit or more bronchial. When he has developed a cough, it usually means he's coming down with something.
Aboveallislove
Super Moderator
I know--but the doctor said that on more than one occassion because I kept trying to get a clear answer on what to do because ds was a grazer when a baby so for the first 6 months I kept asking during check-ups different scenerios because sometimes he'd graze for 2 hours straight. He would seem to nurse for 2 hours and I'm like do I give him enzymes 12x a day if he's eating that much. The nutritionist said more after 1
Also, we have been told yet ANOTHER time frame for enzymes...1.5 hours. The four hours seems excessive unless your LO has slow gastric emptying. Food moves through our system more quickly than four hours...most digestion/absorption occurs in the small intestine - enzymes can't possibly sit there for four hours. Seems a bit odd. Perhaps the doc said not to give them more often than 4 hours so as not to exceed the maximum daily dose? One thing is certain, there is a lot of variation in how CF is treated from center to center! This forum will help you to reach a consensus on which treatments are most accepted and expected.
DD was diagnosed at birth and hospitalized at two weeks old due to an exacerbation. At that time, I thought she was only going to live a year - how could she stay well when she was already hospitalized as a newborn?? Fast forward to present day - we are diligent about her treatments and medications and she is doing well. She'll be four years old next week. Treatments become a part of everyday life and will become less overwhelming - I promise. Will you always think about every little cough and sickness as possibly leading to a hospitalization? I know I do...but I do know that there has never been a better time to be born with CF. Don't focus on the median life expectancy because that is changing for our kids. This is a fact.
DD was diagnosed at birth and hospitalized at two weeks old due to an exacerbation. At that time, I thought she was only going to live a year - how could she stay well when she was already hospitalized as a newborn?? Fast forward to present day - we are diligent about her treatments and medications and she is doing well. She'll be four years old next week. Treatments become a part of everyday life and will become less overwhelming - I promise. Will you always think about every little cough and sickness as possibly leading to a hospitalization? I know I do...but I do know that there has never been a better time to be born with CF. Don't focus on the median life expectancy because that is changing for our kids. This is a fact.
Aboveallislove
Super Moderator
Katie,
Absolutely agree! This forum is so perfect for that. And I didn't mean to suggest waiting 4 hours--just that is what doctor said. To clarify: if it was 1 hour I didn't re-enzyme, but if 2 I did. 1.5? Depended on if it truly was 2 meals or 1 continued. So hard to quantify, etc.
Absolutely agree! This forum is so perfect for that. And I didn't mean to suggest waiting 4 hours--just that is what doctor said. To clarify: if it was 1 hour I didn't re-enzyme, but if 2 I did. 1.5? Depended on if it truly was 2 meals or 1 continued. So hard to quantify, etc.
I first want you to know everything will work out for the best. You are truely blessed. I can hardly believe your story it is so much like mine. At the age of 43 my 16 year old daughter also had a baby with CF. It was very scary until we became educated and quit listening to people who did not really know the facts about CF. I too was scared that my daughter would not be able to finish school and take care of her daughter with CF. It has been 5 years and I am amazed at how my daughter has done. She got up at 5 30 every school morning todo treatments. She used to struggle with school work but after having her baby she knew she had to work hard to get a good job to support her daughter. She is in college and working part time at Cincinnati Children's as a CPA. She is going to school to become a physical therapist. We also have 5 children and our house is full but everyone loves my grandaughter and pitches in when needed. My grandaughter has been riding horsed for 3 years, plays soccer and is as normal as can be, she just has to take medicationand dotreatments. I am lucky that next year she can start on the new Cf medication that was recently approved and I plan on herliving a long healthy life. I have never responded to anyone on this forum but your story touched me like no other. Hang in there and believe God knows what he is doing.
Lisa
Lisa
Wow, Lisa....that is so amazing....I can't believe that....now if you would have just had another baby at 43....our stories would be exact....LOL<img title="Laughing" src="include/wysiwyg/tinymce/jscripts/tiny_mce/plugins/emotions/img/smiley-laughing.gif" alt="Laughing" border="0" />
Your post was very uplifting and gives me great hope. My daughter also wants to be a nurse and has for a long time, but now that this has happened, she asked me the other day if I thought that God might be intending for her to be a nurse for CF in some capacity. I told her that it would be perfect for her to do that and help others who are dealing with the same thing.
We are already getting better.....she has some weepy moments, but overall, much better and this forum gets most of the credit for that next to God.
I called clinic today and they told us enzymes stay about an hour......nutritionist suggested that if he waits over an hour before wanting more, then give more enzymes....but less than an hour....don't worry. I can already see a difference in him. His stools are less and not as bulky....and he has less stools. I can also see some added fat or fullness around his face and back....he was literally so boney on his back.
I asked about the treatments and she said that it will probably be added at next visit.....she said doctor was starting off slow because he is so little and not having issues at the moment. He is so tiny that it's hard to do the tapping without it covering his whole chest....we are being careful. Of course his back gets tapped constantly because of burping while feeding bottle.
I so appreciate everyone's comments and it helps me get through each day.....thanks to everyone.
Your post was very uplifting and gives me great hope. My daughter also wants to be a nurse and has for a long time, but now that this has happened, she asked me the other day if I thought that God might be intending for her to be a nurse for CF in some capacity. I told her that it would be perfect for her to do that and help others who are dealing with the same thing.
We are already getting better.....she has some weepy moments, but overall, much better and this forum gets most of the credit for that next to God.
I called clinic today and they told us enzymes stay about an hour......nutritionist suggested that if he waits over an hour before wanting more, then give more enzymes....but less than an hour....don't worry. I can already see a difference in him. His stools are less and not as bulky....and he has less stools. I can also see some added fat or fullness around his face and back....he was literally so boney on his back.
I asked about the treatments and she said that it will probably be added at next visit.....she said doctor was starting off slow because he is so little and not having issues at the moment. He is so tiny that it's hard to do the tapping without it covering his whole chest....we are being careful. Of course his back gets tapped constantly because of burping while feeding bottle.
I so appreciate everyone's comments and it helps me get through each day.....thanks to everyone.
Aboveallislove
Super Moderator
I'm so glad you were able to get a clear answer for the clinic. That was what our nutritionist had said as well (just got a different answer from the doctor). That's so great re his stools!
Re the "taps"--I know what you mean. Our son was less than 7 pounds when we started. A couple months later we learned they have these little rubber handle held things that made it soooo much easier. They have two kinds--one that looks like a candle sniffer (which we hated) and one that fits in your closed hand that looks like a tiny hand-held plunger. No one had told us about them until my husband said he couldn't do it b/c his hand was too big. So if you didn't get those, maybe see if you can next visit. Also, re the nebulizer cups: Not sure if they still do this, but 2 years ago they would have "free-bies" the medical device reps would give, so if you only got one, maybe ask the nurse if they have any "samples" or "free-bies" on the nebulizer cups to pick up a couple more.
Also, just saw these phamplets and thought they might be helpful: http://www.parentingchildrenwithhealthissues.com/LivingCFPamphlets.html
Hugs and prayers
Re the "taps"--I know what you mean. Our son was less than 7 pounds when we started. A couple months later we learned they have these little rubber handle held things that made it soooo much easier. They have two kinds--one that looks like a candle sniffer (which we hated) and one that fits in your closed hand that looks like a tiny hand-held plunger. No one had told us about them until my husband said he couldn't do it b/c his hand was too big. So if you didn't get those, maybe see if you can next visit. Also, re the nebulizer cups: Not sure if they still do this, but 2 years ago they would have "free-bies" the medical device reps would give, so if you only got one, maybe ask the nurse if they have any "samples" or "free-bies" on the nebulizer cups to pick up a couple more.
Also, just saw these phamplets and thought they might be helpful: http://www.parentingchildrenwithhealthissues.com/LivingCFPamphlets.html
Hugs and prayers
My grandaughter also was very small, only 5 pounds 10 ounces. She did not gain weight and never seemed satisfied when we fed her. After receiving enzymes the difference was amazing. One of the things that made us uncomfortable was going out to eat. We always felt uncomfortable about people watching us give a little baby meds and applesauce but we quickly got over that. I know this first few months are difficult but it does become a routine for you and sometimes now when see a child eating without getting enzymes I feel like they are forgetting something. When Hailey was 4 in daycare her teacher tried to give her icecream and told her she didn't need her medicine but for her it is routine also, she was able to tell her teacher she could not eat that without her enzymes. It is amazing how quickl they learn their routine and know what they can and can't do.
My daughter and I have often talked about what we can do to help others. We feel like there is a reason we were choosen to be given a child/grandchild with CF. Ioriginally postedthat my daughter was going into physical therapy but I actually meant respiratory therapy. My older daughter also changed her major to respiratory therapy after my grandaughter was born. I think it is wonderful that your daughter is thinking about going into nursing. There is also help out there for her for college because she has a child. Stay supportive and encourage her to be what she wants.
I went to court and got gaurdianship of my grandaughter so she could be put on my insurance. I have wonderful insurance and it has been a big help but the CF pharmacy is also a good resource for meds.
My daughter and I have often talked about what we can do to help others. We feel like there is a reason we were choosen to be given a child/grandchild with CF. Ioriginally postedthat my daughter was going into physical therapy but I actually meant respiratory therapy. My older daughter also changed her major to respiratory therapy after my grandaughter was born. I think it is wonderful that your daughter is thinking about going into nursing. There is also help out there for her for college because she has a child. Stay supportive and encourage her to be what she wants.
I went to court and got gaurdianship of my grandaughter so she could be put on my insurance. I have wonderful insurance and it has been a big help but the CF pharmacy is also a good resource for meds.
K
Kaethe108
Guest
Welcome Mum25kids in this forum. I am happy to read that you and your daughter are already better and of course that your grandson now starts to gain weight!
Our daughter was still under birth weight with six weeks old; that's how we found out about the CF.
It will still take you a while to find out the exact dosis of enzymes your grandson needs as this is different for everybody. Pls make sure the enzymes always arrive in the stomach together with the food. We were advised to do it like this: let the baby drink a few sips, give the first half of enzymes, let her drink half of the milk and then give her the second half of the enzymes.
About the pets: We have a cat and we will not give it away. For CF kids as well as for healthy kids it is great to grow up with animals and get in contact with possible allergens.
And please don't worry too much about germs. You will learn everything about safety rules concerning Pseudomonas and other "wet germs", but please don't start to sterilize you whole house. Also CF children have to build up their immune system, which means that they have to catch some bugs, get in contact with normal dirt and so on.
Naturally you will be scared when there is the first flu or cold, but in many cases CF children even get less infections than healthy kids. Try to let him live a life as normal as possible in any way!
All the best for you and your family!
Kaethe ;o)
P.S. Our daughter is now 11 months old, the cutest sunshine you can imagine and has wonderful little baby fat everywhere!
Our daughter was still under birth weight with six weeks old; that's how we found out about the CF.
It will still take you a while to find out the exact dosis of enzymes your grandson needs as this is different for everybody. Pls make sure the enzymes always arrive in the stomach together with the food. We were advised to do it like this: let the baby drink a few sips, give the first half of enzymes, let her drink half of the milk and then give her the second half of the enzymes.
About the pets: We have a cat and we will not give it away. For CF kids as well as for healthy kids it is great to grow up with animals and get in contact with possible allergens.
And please don't worry too much about germs. You will learn everything about safety rules concerning Pseudomonas and other "wet germs", but please don't start to sterilize you whole house. Also CF children have to build up their immune system, which means that they have to catch some bugs, get in contact with normal dirt and so on.
Naturally you will be scared when there is the first flu or cold, but in many cases CF children even get less infections than healthy kids. Try to let him live a life as normal as possible in any way!
All the best for you and your family!
Kaethe ;o)
P.S. Our daughter is now 11 months old, the cutest sunshine you can imagine and has wonderful little baby fat everywhere!