Worth bringing up?

[SarahBStevens]

I am probably barking up the wrong tree but I have some questions and hope someone here is willing and able to give me a little guidance. My sweet baby boy will be 5 months old tomorrow. The first days in the hospital I noticed he was a very unhappy camper and that he had a bowel movement about every 10 minutes. The hospital assured me this was normal. For the first month and a half of his life he cried almost anytime he was awake. He ate constantly (5 ounces every 3 hours by a month old. He now eats 7 ounces every 3 hours with 2 jars of baby food a day. He is 16 pounds. Was 9 at birth). He had very loose bowel movements that were bright green and eventually they became full of mucus. At the same time the mucus in the poop started so did the wheezing and horrible coughing. I took him to see the pediatrician and upon looking at the pics of his poop she immediately said he was not digesting protein and changed him to hypoallergenic formula. He seemed to improve almost immediately as far as the mucus poop went. His poop changed to a hunter green color and the consistency changed to more like pudding than slime. Meanwhile, his coughing and wheezing has continued without showing any signs of improvement even with breathing treatments and oral prednisone. It may get better for an hour but never fully goes away. He chokes constantly when he tries to eat. He also drools an insane amount. Typically, his clothes are soaked when I get him from daycare. He has never had a runny nose or fever and two chest xrays which were done because of wheezing and coughing have come back as being "just fine". His pediatrician says he probably just has asthma but I am wondering if she's wrong. We are finally going to see a pulmonologist after months of knowing something isn't right. Do you all believe that this could be CF? I don't want to sound crazy for bringing it up but what if the newborn screen missed something. I am so worried about my little boy. Thank you for any help or advise. ~Sarah

 

[welshwitch]

Definitely worth brining up. Get him a genetic sequence test to test for CF. You'll be glad you did either way!

 

[Red9928]

Congratulations on your baby boy! Curious at what age he started solids, 5 months may be a little early for his digestive system to tolerate some solids. Is the hypoallergenic formula soy based? Glad to hear he'll be seeing a pulmonologist soon, and hopefully CF will be ruled out! Best of luck to you!

 

[SarahBStevens]

The hypoallergenic formula is milk based but we were told that the proteins are so broken down that his body won't recognize them. At almost 4 months old he came down with pale yellow water diarrhea for 2 weeks straight. Every time he ate it would come out within 30 minutes. We switched to soy at that time and he was obviously in pain from it so we had to switch back. The pediatrician told us to start rice cereal in an attempt to thicken the poop. It didn't help but I think he got used to having more food so I continued on with the baby food. He eats about 42-48 ounces of formula a day so I didn't want to add anymore.

I appreciate you all responding to me. I'm sure you get overwhelmed by the amount of people who think their child MIGHT have CF. Hopefully, he does not but I am happy I found this forum. I read a comment from a parent regarding another post last night. Reading that comment will make me a better parent no matter what my sons condition is!

 

[Shelly43]

Never take a doctors word for it if the baby is showing symptoms and your radar is up? Then push for testing...for 3 years my doctor told me, I was just a over protective parent and not to worry and if my sons symptoms got bad enough to go to the ER then we would see about getting him meds.. I even took in a Good Housekeeping magazine that stated lots of diarrhea in toddlers could be a sign of Cf and other serious illnesses? He said who are you going to believe me or a women's magazine? Since there was no family history? He disregarded me totally as a complainer or I don't know what..Switched insurance and doctors and that all changed.

Is your son's BM's foul smelling? or does his skin taste salty when you kiss him?


Sometime's we mother's just know when something isn't right, and I hope all is well. But if not remember you are your son's advocate and voice...

God Bless

 

[JustaCFmom]

Wow! I am so impressed with your mothering! You are really on the ball.

I hope your baby doesn't have CF, but going to a pulmonologist is a great first step to ruling it out! The standard screening test is far from 100% and, if he does end up being positive for CF, you will see a HUGE improvement with the proper treatment. (My daughter's lung functions went from 75% to over 100%)

My family doctor was shocked when he saw that the pulmonologist was sending my daughter for a sweat test to rule out CF. (It was positive.) As you can infer, she never would have been diagnosed if we had just relied on him.

I met a mom recently who told me her CF story, and it took her years to get the diagnosis for her son. It was right there for the doctors to see (and she saw many who were considered experts), but it took her reading the book about Alex to put the pieces together.

Good luck and let us know the results. May your little guy have a speedy & complete recovery!

 

[SarahBStevens]

Thank you all again for your response. I got a call from my son's day care on Thursday stating that he was choking very bad when trying to eat. They said he turned purple and they were prepared to do CPR but he recovered. Of course I left work to go check on him. On the way I called his pedi and told her once again that my son was wheezing, coughing like an old man who has smoked for 60 years, and is choking when he eats. I was told "babies do that". At this point I though enough is enough and brought him to the Children's Hospital ER. Within 5 minutes the doctor said this is not asthma and got everything rolling in the right direction to find out what is going on with my son. He was admitted to the hospital and the staff began trying to figure it all out. We met a pulmonologist that I originally wanted my son to see but could not get in with for over a month. He will be helping us. As of now, I still do not have answers but I am so happy to know we are on the right track. They did a swallow test and it showed that he is aspirating when he drink formula but can handle thicker substances. Now each bottle has 5oz of formula with 17 teaspoons of hypoallergenic rice cereal. He cannot have anything else. In addition, the pulmonologist viewing the xray thought his heart was enlarged. The cardiologist was then brought in and said while his heart does not look large it does look abnormal. They are thinking he has a vascular ring. We will have further imaging done of his heart on Thursday and a scope on Friday. As far as CF, they said it is unlikely but they will rule nothing out with out until they have a true diagnoses with a treatment plan that is working. Even though I don't know what is exactly is wrong, I am so glad to know that someone else takes my son's health seriously.


While all of this was going on I remembered a lot of the words of comfort I have read here. Mainly, "Let your children know the happy person you are. Letting them know anything else is truly an injustice. Thank you all again so much. I will post a follow up but wanted you all to know that when I say a prayer every night you will continue to in them whether my son has CF or not.

 

[Aboveallislove]

Dear Sarah, thank you for the update. I am so sorry for ll you son and you are suffering but so glad you are on the path to answers. And thank you for the prayers...you and yours will be in ours.

 

[2005CFmom]

Sarah, glad you have some doctors that are taking this seriously. Hopefully they will find out what is really going on and that your son will get the treatments he needs.

 

[SarahBStevens]

Everything with the heart is ok. He has pharyngomalacia and bronchomalacia with secretion in the lungs as well as inflammation. They will let me know if it's a bacterial infection. The secretions look like yellow bubbles on the pics. Dr said he will do sweat test if no improvement after 6 months??? Diarrhea came back the day before yesterday, fine yesterday, and diarrhea today. I'm so confused.

 

[Aboveallislove]

Augh. If it comes back with staph, pseudomonas, or other typical cf bacteria I think it would make sense to ask that they do sweat test immediately...if they won't as of now.

 

[2roses]

So sorry for what you are going through. It's heartbreakingly hard to see little ones sick like this. Please consider insisting on the sweat test AND FULL CF gene sequencing NOW. I'm surprised they would not have done the sweat test at a minimum. I'm going to channel a fellow forum member "Printer" and encourage you to contact a CF specialist at a certified CF care center. Trust your instincts! I went through months of "something isn't right" with my pediatrician, who had curiously done a CF rotation during her medical training and totally missed the obvious CF symptoms my baby had. She was really sick by the time she was diagnosed at 16 months ... bad PA infection which is still there at age 20.

Again trust your mommy super powers and press for the tests, which are not invasive. You are doing an amazing job so far!!! I will pray for your little one and you!

 

[SarahBStevens]

The doctors hesitation is that he does not have salty skin, is not under weight (I have always over fed him), and we have no family history.

 

[JustaCFmom]

I don't really understand why the doctor is "hesitant". It is such a simple test & would put your mind at ease. If it is positive, OK, and if not, also good! It is really a win win situation. I would be a bit more pushy about it. That uncertainty is awful.

Good luck! I am glad to hear you have the doctors listening and helping!

 

[Rebjane]

My daughter with CF does not always have salty skin; when she was a newborn she did; as a tween I don't notice it; I don't go around licking her however. In general CF babies kids are underweight and have failure to thrive though not always. Family history does not matter. My daughter is the only one with CF in our family that we know of..It's pretty normal to NOT have a family history of CF.

 

[Printer]

Sarah:

The world is full of Doctors who can't spell Cystic Fibrosis much less diagnose or treat it. Go to an APPROVED CF CENTER and see a CF SPECIALIST.

Bill

 

[Aboveallislove]

No history for our family either. And only sometimes do I taste salt when kissing him. And failure to thrive could depend on genes. I agree re pushing for test now. Good luck.

 

[SarahBStevens]

The doctor just called the cultures (from lungs) are growing moraxella catarrhalis. I can't find any info on this in connection with cf. The only thing I can find is that it causes ear infections but this was in his lungs.

 

[Printer]

Tell me Sarah, what did he culture for, did he culture for CF infections? Or do you know?

 

[stephen]

Sarah;

If you have any doubts about your doctor, don’t hesitate to get other opinions. I have many times. Medicine is an art as well as a science. No doctor has all the answers! I would not stay with any doctor who thinks they do and would resent me getting another opinion.

Seeing another doctor does not mean you need to give up on the one you are currently seeing. You may find out your current doctor is doing exactly what others would do, and this could reinforce your confidence in him/her. It's also possible that another doctor might have a suggestion that you could mention to you current doctor. My experiences have resulted in both situations. Remember, it is you and your family that must live with the results - not the doctor.

Also, many any "bugs" take two or more weeks to grow out in a culture. Therefore, as Printer said, it's important exactly what a doctor cultures for.