My four month old baby, Bonnie-Rose, was just diagnosed today. I won't be able to call the specialist until next week, and don't know how long it will be until she can be seen. Can anyone give me advice on how to help her sleep? I just gave her a breathing treatment, but she only sleeps an hour or two before she wakes up coughing. She sleeps sitting up in her car seat. Does a vaporizer help or hurt? I got plug in vapor strips before we knew what was wrong. Are they a good thing or bad for her? Also, does anyone have any advice on baby formulas? Thank you! Marie
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my baby just diagnosed - help me!
- Thread starter anonymous
- Start date
Hi Marie,
I'm very sorry for the diagnosis, but at the same time, happy that you were able to get an early diagnosis. My daughter was diagnosed at three months. She also had a lot of sleeping issues as an infant. You will get the best answers at a CF clinic, but I think the carseat is a good idea because she may be coughing as a result of acid reflux (common in CF). She may also need some CPT (which consists of clapping with your hands on her back and chest in different positions). However, you should wait until they show you what to do at clinic.
If she has reflux, there are certain positions that should be avoided.
As far as the formula, it will depend on whether your daughter is pancreatic sufficient or not. If she is not, changing formulas will not make a significant difference until she begins taking pancreatic enzymes. Does she have a lot of daily large bulky, greasy stools? If she does, she is probably pancreatic insufficient and will need enzymes.
Perhaps you can call the CF clinic on Monday and stress that she has a lot of trouble sleeping and you would like her to be seen as soon as possible. Good Luck and don't hesitate to ask more questions.
Maria (mother of three daughters, the youngest Samantha w/cf)
Also, you may want to post in the families section, there are many moms of young children.
I'm very sorry for the diagnosis, but at the same time, happy that you were able to get an early diagnosis. My daughter was diagnosed at three months. She also had a lot of sleeping issues as an infant. You will get the best answers at a CF clinic, but I think the carseat is a good idea because she may be coughing as a result of acid reflux (common in CF). She may also need some CPT (which consists of clapping with your hands on her back and chest in different positions). However, you should wait until they show you what to do at clinic.
If she has reflux, there are certain positions that should be avoided.
As far as the formula, it will depend on whether your daughter is pancreatic sufficient or not. If she is not, changing formulas will not make a significant difference until she begins taking pancreatic enzymes. Does she have a lot of daily large bulky, greasy stools? If she does, she is probably pancreatic insufficient and will need enzymes.
Perhaps you can call the CF clinic on Monday and stress that she has a lot of trouble sleeping and you would like her to be seen as soon as possible. Good Luck and don't hesitate to ask more questions.
Maria (mother of three daughters, the youngest Samantha w/cf)
Also, you may want to post in the families section, there are many moms of young children.
I am not clear as to what "Vaporizer" means, though if it is a form of humidification, I would recommend you refrain. Since a baby doesn't have any lung control, or the ability to manipulate coughing, I would strongly discourage too much exposure to a humidifier/vaporizer. A little may help, though there is a point where it can complicate the situation.
Moisture in the lungs is generally better for CF patients, though if they are particularly congested and can't expectorate well, as I am sure your baby can't, humidity makes it tougher to breathe and promotes coughing. This is not to say one should try to dry-out the lungs or the air your baby breathes, just don't add to the existing challenge of his/her breathing.
Too much coughing, as well as lung constriction can create agitated emotions, physical and emotional anxiety, and an increase in adrenaline, preventing sleep and compounding the coughing fits. Your goal in such a case, at least when I am having trouble, is to try to calm the person down. Relax her/him. Whether it be through smells, sounds, touch, etc.
Some say Eucalyptus oil or rosemary oil scents (aromatherapy) can be calming and promote clear breathing. This could be a passive way you might calm your baby and assist his/her breathing so that he/she can get to sleep.
Best of luck.
Moisture in the lungs is generally better for CF patients, though if they are particularly congested and can't expectorate well, as I am sure your baby can't, humidity makes it tougher to breathe and promotes coughing. This is not to say one should try to dry-out the lungs or the air your baby breathes, just don't add to the existing challenge of his/her breathing.
Too much coughing, as well as lung constriction can create agitated emotions, physical and emotional anxiety, and an increase in adrenaline, preventing sleep and compounding the coughing fits. Your goal in such a case, at least when I am having trouble, is to try to calm the person down. Relax her/him. Whether it be through smells, sounds, touch, etc.
Some say Eucalyptus oil or rosemary oil scents (aromatherapy) can be calming and promote clear breathing. This could be a passive way you might calm your baby and assist his/her breathing so that he/she can get to sleep.
Best of luck.
vickysmommy
New member
Hi, I cant realy relate on having a daughter with CF but I do have CF and am a mommy to a 5 mnth old. I would suggest helping her cough the stuff out by pounding lightly on her back, especially in the morning when most of it has settled. But if she gets real bad, DONT HESITATE to take her to the Emergency room. There are a lot of regular doctors nowadays that know about CF and what to do. She might have to be hospitalized if shes coughing up mucus and if that's the case I wouldnt wait for a specialist cause without Antibiotics it will get worse, especially her being so young. I spent the first couple years of my life in and out of the hospital.
Hi Maria, Thanks for the advice. I am sure she is pancreatic insufficient. Her poop is yuck and she vomited yellow once. I feel certain she had reflux as she spits up quite a bit and every day or so vomits most of a feeding up. I am in northern Arizona. Can you or anyone you know recommend a doctor in Phoenix? Thanks!! Marie
My question was 2 part. The vaporizer is a water vaporizer. It sounds like I'd better hold off on that until I talk to the doctor. The strips smell like vicks vapor rub. You put the strip into a plastic holder and plug it in like a room deoderizer. It puts the scent into the air, but no acutal humidity. It sounds like that might be an ok thing to do. Thanks for your advice. Marie
Hi Sarah, Thanks for the encouragement to go ahead and take her to the ER. Unfortunately, we don't have a very good hospital or ER here. I was there with my mom a few months ago. She had a direct admit order and we still waited in the waiting room for 9 hours then in the ER for another 7 hours before she was admitted. We have a shortage of nurses here. The next closest hospital is 2 hours away! Hopefully we won't be needing it. Thanks for the advice. Marie
Also, humidifiers are not necessarily good in general, as it is a great place for bacteria and fungus to grow. Humidifiers must be sterilized/cleaned very frequently and the water used to humidify should be sterile.
I agree with the other participants. If you or your baby are in distress, over her condition you should seek relief from a trained professional, if for no other reason than to form an understanding of what is happening to her at this point in time.
I agree with the other participants. If you or your baby are in distress, over her condition you should seek relief from a trained professional, if for no other reason than to form an understanding of what is happening to her at this point in time.
vickysmommy
New member
Marie,
Im just wondering how your baby is doing now. You can Email me if youd like. Vickysmommy1@aol.com
Im just wondering how your baby is doing now. You can Email me if youd like. Vickysmommy1@aol.com
Sorry to hear about baby. The advice others have given is really good stuff. I just wanted to touch on a couple other things that might be helpful. Go the CF Foundation's web site www.cff.org they have tons of good information! There is a section there that will help you find a CF Foundations certified clinic in your area. It sounds like she is pancreatic defficient and the doc will probably recomend a good formula for her and maybe some powdered suppliments you can mix with it. Ask the doc about this, my mom did it with me when I was a baby. The doc will probably put her on a pancreatic enzyme to help her digest the protein in milk/formula better. They come in capsules with little beads inside. Break the capsule open and poor the beads out. Put a drop of corn syrup or honey on the nipple of the bottle then dip it in the beads. This is really the pnly way to get them down her without her spitting them out. When she moves on to pureed stuff you can just mix the beads in with it. Good luck!
Marie,
Sorry to hear about the diagnosis, but it is good that Bonnie-Rose was diagnosed so early. I have two little ones and they both have cf. Jack is 18 months and Sophia is 3. Your baby should not be having difficulty sleeping. She also should not be coughing so much unless she is sick with a cold. I would really suggest that you get her into see a doctor and get an x-ray done. Listening with a stethoscope is sometimes not enough to hear pneumonia. Both of my kids had pneumonia once. Jack was three months old and Sophia was five months old. A simple cold at that age can quickly turn into pneumonia. I noticed the skin around their chest and neck retracting. That indicated that they were having difficulty breathing and they needed to be taken to the ER. Also, you should count how many breathes she is having per minutes. Ask a cf nurse at the clinic how often she should be breathing and when should you be concerned.
You should get your daughter into the clinic this week since she was just diagnosed. I can’t imagine they wouldn’t want to get a new cf patient in right away. If the clinic gives you a hard time, don’t take no for an answer. It took me most of my daughter’s first year to realize that I had to take charge of my daughter’s care and not to let anyone in the medical profession to tell me no if I think something is wrong and needs to be addressed until I can be proven wrong.
Both of my kids needed to be on Nutrimagen formula. They had milk allergies that they eventually grew out of.
Also, my son had a persistent dry cough through his infancy. The doctors could not figure out why and routinely prescribed antibiotics which did not help. I really think it had to do with reflux. Once he started Prevacid, his cough went away.
Sharon
Sorry to hear about the diagnosis, but it is good that Bonnie-Rose was diagnosed so early. I have two little ones and they both have cf. Jack is 18 months and Sophia is 3. Your baby should not be having difficulty sleeping. She also should not be coughing so much unless she is sick with a cold. I would really suggest that you get her into see a doctor and get an x-ray done. Listening with a stethoscope is sometimes not enough to hear pneumonia. Both of my kids had pneumonia once. Jack was three months old and Sophia was five months old. A simple cold at that age can quickly turn into pneumonia. I noticed the skin around their chest and neck retracting. That indicated that they were having difficulty breathing and they needed to be taken to the ER. Also, you should count how many breathes she is having per minutes. Ask a cf nurse at the clinic how often she should be breathing and when should you be concerned.
You should get your daughter into the clinic this week since she was just diagnosed. I can’t imagine they wouldn’t want to get a new cf patient in right away. If the clinic gives you a hard time, don’t take no for an answer. It took me most of my daughter’s first year to realize that I had to take charge of my daughter’s care and not to let anyone in the medical profession to tell me no if I think something is wrong and needs to be addressed until I can be proven wrong.
Both of my kids needed to be on Nutrimagen formula. They had milk allergies that they eventually grew out of.
Also, my son had a persistent dry cough through his infancy. The doctors could not figure out why and routinely prescribed antibiotics which did not help. I really think it had to do with reflux. Once he started Prevacid, his cough went away.
Sharon
Don’t take no for an answer.
This might be the best advice I could give to anyone dealing with the medical establishment. It has also been my experience that unless I voice the issues that concern me, I will continually worry until I am completely satisfied with the treatment or conclusion.
Remember that doctor are specialists, but they are human too. They do make mistakes, miss symptoms, and they can be influenced by insurance guidelines and policies. If you think something is wrong and needs to be addressed, if you think your child needs a second test, a second opinion, a new treatment, a different treatment, than you need to keep pushing until you get what you need or until you are proven wrong. And this goes for your insurance carrier too. You will probably spend a lot of time talking to insurance reps. If you think the person you are speaking to doesn't get the situation, ask to speak to a supervisor. Some insurance companies assign a special customer rep when a person requires a lot of special paperwork, but you need to ask for this.
Lastly, I think web sites like this one are very important for getting a wide range of ideas, opinions, knowledge, experience, and support. Doctors often ask me if I'm a nurse when I ask my questions. I reply "no, I just refuse to limit my knowledge to only that information you deem necessary for me to know." Some times doctors are unwilling to share the "possible" diagnosis or "rare situation" until they are absolutely sure. They think this keeps us from worrying and we'll take up less of their time with questions. What they forget is that by letting us in on their "side" thoughts, we may have information that could assist in the diagnosis or treatment plan.
In the end, I do trust my doctor and usually feel satisfied with his decisions, but he also knows I'm the person that will ask the detailed questions, demand the proof, and won't give up without exploring all the possibilities. He knows I won't be brushed off, so he rises to MY expectations. If your doctors are not willing to do this, then it's time for a new doctor.
This might be the best advice I could give to anyone dealing with the medical establishment. It has also been my experience that unless I voice the issues that concern me, I will continually worry until I am completely satisfied with the treatment or conclusion.
Remember that doctor are specialists, but they are human too. They do make mistakes, miss symptoms, and they can be influenced by insurance guidelines and policies. If you think something is wrong and needs to be addressed, if you think your child needs a second test, a second opinion, a new treatment, a different treatment, than you need to keep pushing until you get what you need or until you are proven wrong. And this goes for your insurance carrier too. You will probably spend a lot of time talking to insurance reps. If you think the person you are speaking to doesn't get the situation, ask to speak to a supervisor. Some insurance companies assign a special customer rep when a person requires a lot of special paperwork, but you need to ask for this.
Lastly, I think web sites like this one are very important for getting a wide range of ideas, opinions, knowledge, experience, and support. Doctors often ask me if I'm a nurse when I ask my questions. I reply "no, I just refuse to limit my knowledge to only that information you deem necessary for me to know." Some times doctors are unwilling to share the "possible" diagnosis or "rare situation" until they are absolutely sure. They think this keeps us from worrying and we'll take up less of their time with questions. What they forget is that by letting us in on their "side" thoughts, we may have information that could assist in the diagnosis or treatment plan.
In the end, I do trust my doctor and usually feel satisfied with his decisions, but he also knows I'm the person that will ask the detailed questions, demand the proof, and won't give up without exploring all the possibilities. He knows I won't be brushed off, so he rises to MY expectations. If your doctors are not willing to do this, then it's time for a new doctor.
Thanks for the encouragement. My son has autism so I am already an expert at advocating for my child! As far as new doctors - I will go to the ends of the country so to speak to find the best. We took Kevin to Florida in Dec. to see one of the best doctors in the country that I know of.
NoDayButToday
New member
Marie,
In CF there aren't any set severities/stages, like there are in cancer with levels 1-5 or anything like that. However, severity varies greatly within the CF community. I am probably considered to be on the more severe end of that spectrum. I had my first IVs at age 5. But, there are people who are on this forum who had their first IVs at 16 (Emily!), in their 20s and 30s, and some who have yet to do IV tune ups. Scientists are perplexed as to why this is-- compliance with treatment is sometimes not a factor (I've been hardcore compliant my whole life), and within the same mutations there are different severities. There are a few theories about modifying genes and such, but nothing conclusive. There is also no way to tell how CF will affect your child; only time will tell. <img src="i/expressions/heart.gif" border="0">
In CF there aren't any set severities/stages, like there are in cancer with levels 1-5 or anything like that. However, severity varies greatly within the CF community. I am probably considered to be on the more severe end of that spectrum. I had my first IVs at age 5. But, there are people who are on this forum who had their first IVs at 16 (Emily!), in their 20s and 30s, and some who have yet to do IV tune ups. Scientists are perplexed as to why this is-- compliance with treatment is sometimes not a factor (I've been hardcore compliant my whole life), and within the same mutations there are different severities. There are a few theories about modifying genes and such, but nothing conclusive. There is also no way to tell how CF will affect your child; only time will tell. <img src="i/expressions/heart.gif" border="0">
Hi again Marie,
Colleen is correct saying that there are no levels of severity or stages of CF. However, I remembered seeing classifications of mutations awhile back. I asked our CF team if these classifications were valid scientifically and they said yes. I searched this tonight and this is what I found:
Cystic fibrosis mutations can be classified by the molecular mechanisms by which they cause dysfunction (Table 3-30) (Kerem and Kerem, 1996; Rosenstein and Zeitlin, 1998; Mickle and Cutting, 1998; Mickle and Cutting, 2000; Zielensky, 2000). Mutations can result in CFTR that is absent, reduced, or abnormally functioning. These are grouped, as follows:
· Class I mutations (e.g., G542X, 621+1G>T, and 711+1G>T) result in total deficiency or unstable/non-functional CFTR protein.
· Class II mutations (e.g., delF508, N1303K, and delI507) disrupt normal intracellular processing (e.g., glycosylation), causing instability of CFTR protein, or interfering with its movement to the correct cellular location.
· Class III mutations (e.g., G551D) result in a normal amount of CFTR protein being produced and positioned at the cell surface, but the protein is non-functional.
· Class IV mutations (e.g., R117H, A455E) result in a normal amount of functional CFTR at the cell membrane, but chloride conductance is reduced. These mutations are generally associated with a pancreatic sufficiency.
· Class V mutations (e.g., 3849+10KbC>T)result in reduced levels of normally functional CFTR protein at the cell membrane and are also associated with a less severe phenotype.
They made it clear that these classifications cannot predict severity, but that those in class I, II and III usually have pancreatic insufficiency and lung involvement. While those in IV and V may have pancreatic sufficiency and sometimes a milder course. I think it would also depend on your combination of mutations. For ex, you might have a class I with a class V.
Hope this gives some additional info.
Maria (mother of three daughters, the youngest Samantha w/cf)
Colleen is correct saying that there are no levels of severity or stages of CF. However, I remembered seeing classifications of mutations awhile back. I asked our CF team if these classifications were valid scientifically and they said yes. I searched this tonight and this is what I found:
Cystic fibrosis mutations can be classified by the molecular mechanisms by which they cause dysfunction (Table 3-30) (Kerem and Kerem, 1996; Rosenstein and Zeitlin, 1998; Mickle and Cutting, 1998; Mickle and Cutting, 2000; Zielensky, 2000). Mutations can result in CFTR that is absent, reduced, or abnormally functioning. These are grouped, as follows:
· Class I mutations (e.g., G542X, 621+1G>T, and 711+1G>T) result in total deficiency or unstable/non-functional CFTR protein.
· Class II mutations (e.g., delF508, N1303K, and delI507) disrupt normal intracellular processing (e.g., glycosylation), causing instability of CFTR protein, or interfering with its movement to the correct cellular location.
· Class III mutations (e.g., G551D) result in a normal amount of CFTR protein being produced and positioned at the cell surface, but the protein is non-functional.
· Class IV mutations (e.g., R117H, A455E) result in a normal amount of functional CFTR at the cell membrane, but chloride conductance is reduced. These mutations are generally associated with a pancreatic sufficiency.
· Class V mutations (e.g., 3849+10KbC>T)result in reduced levels of normally functional CFTR protein at the cell membrane and are also associated with a less severe phenotype.
They made it clear that these classifications cannot predict severity, but that those in class I, II and III usually have pancreatic insufficiency and lung involvement. While those in IV and V may have pancreatic sufficiency and sometimes a milder course. I think it would also depend on your combination of mutations. For ex, you might have a class I with a class V.
Hope this gives some additional info.
Maria (mother of three daughters, the youngest Samantha w/cf)
Colleen,
I just wanted to tell you that I have been reading your quote from Rent, and re-reading it. I've decided to put it up somewhere so that I can read it everyday. We have been through a rough time lately with digestive issues with Sami, and that quote just sums up the attitude that we need to take. Thanks!
Maria (Samantha's mom)
I just wanted to tell you that I have been reading your quote from Rent, and re-reading it. I've decided to put it up somewhere so that I can read it everyday. We have been through a rough time lately with digestive issues with Sami, and that quote just sums up the attitude that we need to take. Thanks!
Maria (Samantha's mom)