New to CF- crying baby

[anonymous]

Hello,
I'm a grandmother to a 6 mo old baby boy. We had know his mom was a carrier but my son tested neg.
The baby ended up in the hosp with a resp infection, 5 weeks later they tested him positive. He is now doing very well, gained back his weight and then some. He's a very happy baby.
I have researched CF quite a bit but have one question.
How harmful is it for a baby to cry for an extended period of time. Does it irritate the lungs. I ask this because I heard the baby crying for at least an hour the other day. My son and D-I-L live below us in my home,moved in last month. I try not to "bud in" but I was getting very concerned, first thinking she was hurt ( fell and bumped her head kind of thing) and then for him for crying so long. It was in the morning so I assumed she was sleeping, I was getting very nervous and angry.
I work during the day so I'm not home to see if this is a regular event but I'm very concerned for the baby if crying outside of the norm is harmful.

Thank
A concerned Grammy

 

[lovemygirl]

Crying is not going to hurt your grandchild. My daughter is 5 and when she has a good cry it often helps her to cough more. If the parents want their baby to "cry it out" then you need to let them be the parents.
They are fortunate to have a grandparent around that cares so much. My mother helps out a lot with our daughter and is probably the only one outside of our home that truly understands what we go through on a day to day basis. My mom will probably never know how comforting this is to me.
Maybe offer to help them or take over for an hour or so, but offer when the baby is not crying.

 

[anonymous]

Thank you for your response.
Being new to CF I'm just so concerned. I'm also a nurse but I deal with the elderly. I lived with my in-laws for 9 years with two boys and they blessed us with not interfering. I plan on doing the same. They have my complete support and I understand thier fears and hopes, grief and anger more than they probably realize. I lost my 17 year old son 4 years ago to a tragic car accident. Getting this DX of CF was such a blow to our family. I'm concerned for my son who lost his only brother and now is dealing with a CF baby. Mom and Dad both know we are their for them both emotionally and financally. I guess were all still trying to get a handle on all this new information that's coming into our lives and emotions are still a bit high. I know I strayed from the subject, I hope it is ok to ramble a bit.
Thank you for listening.
Donna

 

[forsaxon]

To lovemygirl, I just had to say that the quote on the bottom of your message brought tears to my eyes. It is just beautiful. Thank You <img src="i/expressions/face-icon-small-smile.gif" border="0">

Donna (mum to baby boy 4mths w/cf daughter 31/2yrs wo/cf)

P.S. I would have thought a bit of crying would have been good for the lungs, sort of vibrate things up a bit!

 

[anonymous]

You could mention that you heard the baby crying & tell them if they ever need a break that you would be glad to help out.
The baby may have gas or a tummy ache, which is very common. It also could be hungry, they could ask their doctor, but I think you can never feed a CF baby too much and maybe a bottle would help.
Maybe holding it would help, maybe not. I don't know at what age you should just let a baby cry, but I think an hour is too long to just leave it unattended and crying at that young age if that's what the situation is.
Can someone w/ a 6 month old comment on whether they've figured out "how to work it" yet at that age, or are they still crying because something is wrong (i.e. hungry, dirty diaper, stomach ache, etc) at 6 months, like an infant does.

 

[forsaxon]

Hi Concerned Grammy, I have been thinking alot about your message maybe because I am having big issues with my mother in law. Unfortunately my relationship with her has been on a steady decline since the birth of our first bub who is 3 1/2 yrs. It is very hard when you become a first time mum, and you are very sensitive to comments made about your baby & or parenting skills. Your D-I-L is obviously dealing with alot being a first time mum, plus the bub having CF. I would think the best thing you can do is let them know you are there for them & if they need help to ask, but when it comes to advice even though you mean well keep it to yourself until they ask (and they may not!) Yes an hour is a long time for bubs to be crying (I myself wouldn't be able to stand it) but maybe she was doing bubs physio (our wee boy cries through most of it, but thats done in 20mins) who knows? Is this the first time you have heard it, or is it a frequent thing?

In health
Donna (mum to baby boy 4mths w/cf daughter 3 1/2 yrs wo/cf)

 

[moni]

I'm just curoius, you said the mom was a carrier, but your son tested negative. Is your son the father? If he is, and tested negative, how did your grandchild test positive? Maybe they made a mistake?

 

[anonymous]

1 hour is a long time to listen to a baby cry....I have a 1y/o CF carrier daughter. She is very stubborn and some advise I was given as a new mom was to "let her cry it out". This I found out was the worst advise I was ever given. I spent too long trying to become a mom to listen to my daughter cry. She cried for an hour stright as well. I tried everything, so I went back to what I knew worked holding and loving her.
Keep an ear out and offer help, mabye she is affraid to ask you. On another occasion my daughter cried for 3 hours. Everyone in the family (mother-in Law, fater-in -law, daddy and mommy) walked her around the house showing her new things.
I thank God they were there for me that day. She might need you, and be afraid to ask.
Good luck and God bless......

Kathy

 

[anonymous]

Just an FYI to the grandma:

Cystic fibrosis is a genetic disorder. A child must inherit a specific gene from both parents to get CF. The environment, diet, exercise, or other lifestyle factors do not cause the disease, although they can affect its course.

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[anonymous]

Hello both parents have to have the cf gene for the baby to have cf....maybe you should have your son retested...good luck to you

 

[anonymous]

To all the posters so concerned about the child's paternity:
The standard genetic screening for couples only tests for a handful of mutations - only the very most common. I think something like 25-30 mutations which account for roughly 75% of the cf cases. THere are well over 1000 different mutations, many of which are extremely rare. Currently, <b>NO</b> genetic screening picks up <b>ALL</b> mutations; therefore, it is possible for a parent to test negative in screening but still have their own genetic child test positive for cf. Ambry has the highest detection rate, something like 96-98% but Ambry is not used for general population screening. I hope that helps clear up the confusion.

 

[moni]

I wasn't so concerned about the paternity, but maybe they made a misdiagnosis with the little guy. What if the sweat test was borderline and they gave home the dx - they really should do some genetic testing on the little guy.

 

[anonymous]

In general, drs are hesitant to even test for cf unless the symptoms are severe and very much in your face. I seriously doubt they misdiagnosed the child. My guess is that they did the general population carrier screen that checks for 20 some odd mutations, found the mom's gene and missed the dads. Chances are probably really good that if they did an ambry on dad and baby, they'd find a less common mutation.

 

[anonymous]

Moni,
No offence taken on your ?. My son is the father of the baby. He was tested before the baby was born so we thought it was safe. When the baby got ill and hospitalized it took them awhile to test for CF. No matter what they did he was losing wgt, stopped eating and was in and out of ICU. They did the sweat finally and he tested positive. Since putting him on enzymes he has grown so much. They also did bloodwork(if that's the correct test) and identified mom's gene and I'm assuming dad's un-named gene. They plan on doing another sweat for what that's worth. I have not seen the hard copy of my son's test, he was told he was negative over the phone. Not sure if this is common practice but I want to see the hard copy. I know I have a lot to learn about this and plan on going with them on the baby's next clinic visit.
We bought this house 4 months ago before the baby was born with plans of making an apt for them downstairs, now that we know he has CF I'm thankful we did just that. As far as the baby crying, maybe the Mom in me over-reacted. It's hard to ignore a crying baby. Not knowing all there is to CF it's a little scary. As far as the mom she seems to be handleing it all quite well. She readily talks about his therapy and meds and things but I'm sure she has her fears too.
I thank you all for your responses.

 

[moni]

When I was 6months preg with abby, the doctor called me at work to tell me that from the ultrasound, it looked like the baby had down syndrome - there were 2 markers. I had an amnio done, and also had them (I thought) terst for the CF, knowing that we were both carriers. The amnio came back "perfect" I was told no Cf, no Downs..NOTHING!!! We were so excited. About 3 days after getting back from the hospital ( I was in a little over a week b/c I was qiute ill), my sister who is the office manager at my pedi called and said he wanted to see me ASAP. When I went in, he told me that her newborn screen came back + for CF. We all didn't know what to think due to the amnio...she had the sweat test 2x and the 1st came back borderline and the second, negative. They still considered her + and then about 2 months ago she ended up with pseudominis and then we knew. So don't rule anything out. They swore to me she would be negative and ended up +. Abby was also a very "crying baby", and I mean all nite and day. It turns out that she has reflux. She actually went through 4 formulas along with 2 medicines before she stopped!!

 

[SeasonsOfLove]

Colleen too had very severe reflux as a baby and cried ALOT until it was treated successfully with Reglan.

Good luck,

 

[anonymous]

Our daughter also cried a lot as a baby before diagnosis, at 2 months old. She had reflux and used Zantac to help with it and is now 5 yrs old and on Prevacid for the acidity.

Love my girl (forgot to sign in)

 

[proudmom2lilCFer]

The father of my son is not a carrier to CF. Of course his first thought was that he wasn't the father, but he is. After extensive genetics testing they found out that my son's #7 chromosomes (which is the one that CF comes from) are identicle. They both came from me. We were told by his genetics doctor that if I were to ask the chances of my baby having CF being that I am a carrier and the father not being, they would have told me 0. No chance at all. But it still happened. His messed up chromosome also has caused him to have Russell-Silver Syndrome, which is a form of dwarfism. His genetics doctor told us that he is the 3rd confirmed case of this ever. So I guess it is possible for a child to have it without both parents being carriers. EXTREMELY rare, but it happened with us.

 

[JazzysMom]

<blockquote>Quote<br><hr><i>Originally posted by: <b>proudmom2lilCFer</b></i><br>The father of my son is not a carrier to CF. Of course his first thought was that he wasn't the father, but he is. After extensive genetics testing they found out that my son's #7 chromosomes (which is the one that CF comes from) are identicle. They both came from me. We were told by his genetics doctor that if I were to ask the chances of my baby having CF being that I am a carrier and the father not being, they would have told me 0. No chance at all. But it still happened. His messed up chromosome also has caused him to have Russell-Silver Syndrome, which is a form of dwarfism. His genetics doctor told us that he is the 3rd confirmed case of this ever. So I guess it is possible for a child to have it without both parents being carriers. EXTREMELY rare, but it happened with us.<hr></blockquote>



How on earth did you find a doctor who was willing to check further on the CF? I hear of so many doctors who rule it out just because there is no family history before they even do testing. Thank goodness you have someone who kept going with the search!

 

[proudmom2lilCFer]

My son's problem was that he wasn't growing. AT ALL. So he was hospitalized and diagnosed with CF. We started going to a wonderful CF doctor in Spokane Washington. We live about 150 miles from there. We were seeing him weekly. Nothing that we tried worked. My son still didn't grow. We were having a horrible time trying to find a pediatrician here in town, so our CF doc fixed us up with a pediatrician that he knew in Spokane. He said it was who he took his children to, and he was very good. So we went there, and we were with this doctor for about 5 minutes and he said that my son has a syndrome. He left the room, came back in and said I have an appointment for you with a wonderful genetics doctor in the morning. I was so happy that these people were squeezing us in, and that FINALLY someone knew what was going on with him. So we went to the genetics doc the next morning, she took one look at my son and said that he has Uniparently Disomy on his number 7 chromosome. She had had another patient a few years ago that had it as well, and him and my son looked just alike. Well, the number 7 chromosome is where CF is from. So we did the first and easiest test to see if my exhusband and I were both carriers. In the mean time we had done the DNA testing on Evan to find out that he had 2 DeltaF508s. So we did the testing on my ex and I and he turned out to not be a carrier, and I am a carrier of the DeltaF508. So that pretty much told us, either Evan has this UPD #7 or else, Jeff isn't his father. Well, I know Jeff is his father. So our CF doctor presented this unusual case to the CF Foundation and they were very interested in my son. They wanted the further genetics testing done as well. Well, it is very expensive, and it can only be done in a few places throughout the country. We found a lab in South Carolina I believe that said they would do it. They took blood from me and from Evan and sent it in. It took about 6 weeks or so, and then they confirmed that both of his number 7 chromosomes came from me. And on top of that, they were both had the mutated CF gene. His genetics doctor told us that he is the third confirmed case of this ever. In fact, the first case was how the found the CF gene to begin with. So since then he has been diagnosed with Russell-Silver dwarfism. We believe that it was caused by his UPD #7. It cause very poor growth and weight gain. Right now he is 9 months old, but the size of a 1 month old. He finally outgrew his preemie clothes, and is now wearing 0-3 months. He is delayed in his gross motor skills, and probably won't walk until he is 18 months or so. He just started sitting up, and he can't crawl. He doesn't eat anything by mouth, and he is fed 22 hours a day through his g-tube. I feel so fortunate that we were able to find all these things out. It is amazing what they can do these days. We were blessed with a WONDERFUL team of doctors that have all fallen in love with my son, and go out of their way to make sure that he has the best care possible. I feel like the luckiest mom in the world to have been blessed with this true little miracle.