La Condessa Posted October 25, 2014 Share Posted October 25, 2014 My baby is scheduled for a sweat chloride test on Wednesday, to check for cystic fibrosis. He is six months old. He is the most darling, wonderful boy. He is an amazingly happy, easygoing baby--so much so that I had to feed him on a schedule instead of on demand for the first three months, because he simply wouldn't demand often enough, and would drop weight when I nursed on demand. So much so that when they strapped him into what appeared to be a baby torture device for his chest x-ray on Thursday, they couldn't get him to cry for the x-ray. And when he was in the emergency room right after they finished digging the hair tourniquet out of his toe, he was smiling and cooing at me with the tears still wet on his face. He adores his family and is such a smiley, patient little thing. I often find myself in the position of trying to convince doctors that there really is something wrong; he may be grinning and wiggling, but all is not well. The pediatrician is finally taking his breathing problems seriously. He's been wheezing for two months, and the chest x-ray the other day revealed pneumonia--it's hard to show a dr. a giggling, cooing baby and convince her that he is really sick. It was the same with his tummy problems a few months ago. We'd been back several times and kept being told that this is normal, many babies have b.m.s only every ten days, and the strange texture and horrific smell weren't a worry if they weren't constipated b.m.s. It was only after I insisted that if it was causing him pain for two days beforehand it wasn't okay, no matter what was normal for other babies that she said we could try some glycerin. When the glycerin had had absolutely no effect, and I described to her how I noticed that sometimes his stomach bulged out not forward, but on one side, that it seemed like she began to pay attention that there was something wrong and start looking for a cause, suggesting various probiotics. At one point she mentioned that the side-bulging tummy could indicate some problem with his small intestine, which is on that side. But his tummy problems have improved for the last several months, so that he goes about twice a week now with far less discomfort, and the smell is not nearly as bad. His weight gain has followed the curve for the last three months, too, holding steady around the 22nd to 27th percentile, where it was a fight to keep him on the chart those first few months. Really, I haven't even thought about those issues much lately except to be surprised that he was still at a lower percentile, he looks so chubby now. On Monday, a friend from church was over at my house helping me pack (we are moving in a week!) and was asking me questions about his wheezing. She is a nurse, and had a son with unusually early onset asthma, which is what he pediatrician has said this is. Her son was unusually early as an older baby, and had asthma attacks--she was perplexed that my son has no attacks, he simply wheezes all the time. And she was very surprised that they did not show greater concern at his last visit when his blood oxygen saturation was 89. (I assumed that was okay, since the dr mentioned that was on the low side, but didn't seem especially concerned). Then she asked, "And they don't think it's cystic fibrosis?" When I told her no one had ever mentioned that, she said she was sure they would have checked if they thought there was any chance of that. And besides, she said, he hadn't had any digestive problems, had he? She tried to reassure me not to worry, but later when I looked up the symptoms, little red flags started going up. He has the breathing problems. They have been diagnosed as asthma, but they don't come and go in 'attacks', he is really strangely young for it, and the nebulizer Albuterol treatments have only a small affect that doesn't last nearly to the next treatment. He wheezed a little for a couple weeks after each little cold he's gotten since birth, but it was worse after that cold two months ago, and has never improved since. He had some very erratic weight gain issues those first few months, and bowel problems, which both improved. I have read that many breastfed babies with cystic fibrosis start having digestive and weight gain problems around six months, when they start solid foods--that they do okay on breast milk, because it contains it's own enzymes that their bodies lack for digestion. Those first few months I was supplementing with formula at times as I struggled to bring my milk supply back up after a horrible uterine infection, but he's been 100% breastfed since then. I have also read that babies with cf may have blockages or partial blockages of the small intestine, which might have something to do with those times his tummy was bulging to the side. Children with cf are salty to the taste. My mother's friend who has children with cf once described kissing her son like kissing a potato chip and then licking your lips. My son doesn't taste like that, but he is definitely saltier than my other kids. (Yes, I have been licking my children to check). He tastes about like you would expect of an older kid who'd been running around outside, rather than a baby who's been sitting and wiggling in a cool house. I am terrified. I saw our family friends lose their oldest son at nineteen to this disease, and their daughter near my age come close to death before a lung transplant saved her as a teenager. I haven't been sleeping. I actually lost five pounds in two days, but have been much more careful of my eating since realizing that--the last thing we need right now is for me to lose my milk supply. My husband is already working in the town we are moving to four hours north of here, which is much closer to the hospital I am driving to for the test, six hours north. He has suggested a few times waiting until after the move for the test, but I am not willing to wait any longer than I have to. I think he doesn't really believe that our son could have this disease, but I am very, very worried. I know that anyone can lose a child young, but besides his death, I worry about the experiences in life he might miss out on and the pain and slow loss of health. As far as I am concerned, Wednesday cannot come soon enough. 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Jean in Newcastle Posted October 25, 2014 Share Posted October 25, 2014 :grouphug: :grouphug: :grouphug: :grouphug: I'm really glad that you are having the test done. At best, it will rule this out as a concern. At worst, it will give your doctors the information they need to help him now. :grouphug: I know it is so hard to wait, not knowing and fearing what could be. Quote Link to comment Share on other sites More sharing options...
plansrme Posted October 25, 2014 Share Posted October 25, 2014 Oh boy, no wonder you are worried. Good for you for making the doctors listen to you, though. I hope you get some answers, and the ones you want, very soon. Quote Link to comment Share on other sites More sharing options...
zoobie Posted October 25, 2014 Share Posted October 25, 2014 I will be thinking of you and your baby. I have a 5 month old and can't imagine your fear. :grouphug: Quote Link to comment Share on other sites More sharing options...
momto3innc Posted October 25, 2014 Share Posted October 25, 2014 No personal experience but a good friend had to do the sweat test with her baby boy about a year ago and all came back fine. They have had to deal with different health issues (nothing serious) but is was not CF. Praying the same for you. Quote Link to comment Share on other sites More sharing options...
Openhearted Posted October 25, 2014 Share Posted October 25, 2014 My heart breaks for you and the worry you are going through. You and your beautiful family are in my prayers. Quote Link to comment Share on other sites More sharing options...
unsinkable Posted October 25, 2014 Share Posted October 25, 2014 (((Michelle))) How very scary. I'm so sorry your precious little guy is going through this. It is really difficult waiting for tests and test results. Please keep taking care of yourself. I'm praying for you and your son, that it is not CF. Quote Link to comment Share on other sites More sharing options...
hornblower Posted October 25, 2014 Share Posted October 25, 2014 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
chocolatechip Posted October 25, 2014 Share Posted October 25, 2014 Prayers for you. Good for you for making sure he gets the tests he needs. Hugs! Quote Link to comment Share on other sites More sharing options...
Chris in VA Posted October 25, 2014 Share Posted October 25, 2014 Many, many hugs to you. There are folks on this board that have CF kiddos--and my brother has it. There are several types, and it is hard to wait to find out information, I know. If it is any help to hear anecdotal stories of CF, I would be happy to share. But don't jump the gun yet. If it's ok, I'll be in prayer for your anxiety and your son's healing. ((((OP))))) Quote Link to comment Share on other sites More sharing options...
Word Nerd Posted October 25, 2014 Share Posted October 25, 2014 :grouphug: Quote Link to comment Share on other sites More sharing options...
La Condessa Posted October 25, 2014 Author Share Posted October 25, 2014 Thank you all. Many, many hugs to you. There are folks on this board that have CF kiddos--and my brother has it. There are several types, and it is hard to wait to find out information, I know. If it is any help to hear anecdotal stories of CF, I would be happy to share. But don't jump the gun yet. If it's ok, I'll be in prayer for your anxiety and your son's healing. ((((OP))))) Thanks. I've actually already read some of your past posts about your brother. It was good to read about his family, and that he is able to be a father. Quote Link to comment Share on other sites More sharing options...
AimeeM Posted October 25, 2014 Share Posted October 25, 2014 Big, big hugs. We've been through the testing process and I *know* how terribly worrying it is, and how stressful! Quote Link to comment Share on other sites More sharing options...
Reflections Posted October 25, 2014 Share Posted October 25, 2014 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
texasmama Posted October 26, 2014 Share Posted October 26, 2014 So many hugs to you, mama. (((hugs))) Quote Link to comment Share on other sites More sharing options...
Slartibartfast Posted October 26, 2014 Share Posted October 26, 2014 I am sorry they didn't listen to you. Is he seeing a pediatric pulmonologist while he has the sweat test? If he isn't I would try to get an appointment for the same time. I think I would also seek out a new pediatrician. :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Mrs Mungo Posted October 26, 2014 Share Posted October 26, 2014 PMing you. Quote Link to comment Share on other sites More sharing options...
Eagle Posted October 26, 2014 Share Posted October 26, 2014 We had to do the sweat test three times for ds because he couldn't sweat enough for them to get a result. Make sure you bring clothes to really bundle him up. Fleece works well. I remember my fear that ds would test positive. It is always so hard to not know what is affecting your child. Many hugs. I hope this test is negative for you and that you get some answers soon. Quote Link to comment Share on other sites More sharing options...
NorthwestMom Posted October 26, 2014 Share Posted October 26, 2014 :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
La Condessa Posted October 26, 2014 Author Share Posted October 26, 2014 I am sorry they didn't listen to you. Is he seeing a pediatric pulmonologist while he has the sweat test? If he isn't I would try to get an appointment for the same time. I think I would also seek out a new pediatrician. :grouphug: :grouphug: Not at the same time, but as soon as possible. They said if he tests positive, they will schedule an appointment within the next couple of weeks. If he tests negative, we will still schedule an appointment--but their next available appointment for non-cf with the pulmonary specialist isn't until December. We will be changing pediatricians, too. A large reason for this move is to be in a place with better medical care available. Quote Link to comment Share on other sites More sharing options...
6packofun Posted October 26, 2014 Share Posted October 26, 2014 I will be praying for your family! My dh used to work for Rainbow Babies & Children's Hospital (Cleveland, OH) and he has seen and gotten to know so many wonderful children with CF and their families. Yes, it's difficult, but that hospital--and I'm sure others--is just great and there is GOOD care out there for CF kids. It is not a diagnosis without hope! Please update when you can! **hugs** Quote Link to comment Share on other sites More sharing options...
Alte Veste Academy Posted October 26, 2014 Share Posted October 26, 2014 ((((((((Michelle)))))))) ((((((((Peaceful)))))))) Quote Link to comment Share on other sites More sharing options...
Slartibartfast Posted October 26, 2014 Share Posted October 26, 2014 Not at the same time, but as soon as possible. They said if he tests positive, they will schedule an appointment within the next couple of weeks. If he tests negative, we will still schedule an appointment--but their next available appointment for non-cf with the pulmonary specialist isn't until December. We will be changing pediatricians, too. A large reason for this move is to be in a place with better medical care available. It is hard to say I hope the test is negative and you end up waiting and worrying but I do hope the test is negative. :grouphug: Quote Link to comment Share on other sites More sharing options...
SweetIrony Posted October 26, 2014 Share Posted October 26, 2014 My daughter has CF and I know the anguish you are going through. I want to encourage you though, that the outlook for kids with CF born today is drastically different than it was for those with CF born just a couple of decades ago. The life expectancy is already much higher, and with the new medications currently out or still in development, it will be higher still! My daughter takes pills when she eats, does 2 breathing treatments a day, and goes to CF clinic every 3 months. It seems like a lot but now it is just normal for us. She is a happy, healthy girl and unless I tell people, they have no clue she has CF. I pray your baby does not have CF, but if he does, he can start getting the medicines and treatments he needs to be healthy! I will be thinking of you and your son this week. :grouphug: Quote Link to comment Share on other sites More sharing options...
ScoutTN Posted October 26, 2014 Share Posted October 26, 2014 Praying for you and your sweet baby boy. Quote Link to comment Share on other sites More sharing options...
trulycrabby Posted October 26, 2014 Share Posted October 26, 2014 Your sweet little boy is in my prayers. :grouphug: Quote Link to comment Share on other sites More sharing options...
Pawz4me Posted October 26, 2014 Share Posted October 26, 2014 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Guest Posted October 26, 2014 Share Posted October 26, 2014 I am so sorry you have such a terrible worry on your plate. Many blessings and peace for you and your sweet boy. Quote Link to comment Share on other sites More sharing options...
AimeeM Posted October 26, 2014 Share Posted October 26, 2014 Not at the same time, but as soon as possible. They said if he tests positive, they will schedule an appointment within the next couple of weeks. If he tests negative, we will still schedule an appointment--but their next available appointment for non-cf with the pulmonary specialist isn't until December. We will be changing pediatricians, too. A large reason for this move is to be in a place with better medical care available. Please do push them for the pulmonary referral, even if he tests negative for CF. Also, please push for better chest imaging (a CT) when he does see the pulmonary team, if the CF test is negative, if all he's had thus far is an x-ray. Oddly enough, we changed pediatricians for similar reasons (not listening to us). I pray things go well for y'all and you get the answers you need. Quote Link to comment Share on other sites More sharing options...
melbotoast Posted October 26, 2014 Share Posted October 26, 2014 :grouphug: and prayers Quote Link to comment Share on other sites More sharing options...
Flowing Brook Posted October 26, 2014 Share Posted October 26, 2014 :grouphug: :grouphug: I will be thinking and praying for you and your little guy. Quote Link to comment Share on other sites More sharing options...
catz Posted October 26, 2014 Share Posted October 26, 2014 :grouphug: Quote Link to comment Share on other sites More sharing options...
happi duck Posted October 26, 2014 Share Posted October 26, 2014 (Hugs) Quote Link to comment Share on other sites More sharing options...
Amira Posted October 26, 2014 Share Posted October 26, 2014 :grouphug: Quote Link to comment Share on other sites More sharing options...
JennyD Posted October 26, 2014 Share Posted October 26, 2014 Oh my, I am so sorry that you and your baby are going through this. I will be holding you in my thoughts and hoping that all turns out well. My daughter takes pills when she eats, does 2 breathing treatments a day, and goes to CF clinic every 3 months. It seems like a lot but now it is just normal for us. She is a happy, healthy girl and unless I tell people, they have no clue she has CF. That is amazing. I had heard that treatment for CF had improved dramatically since our own childhoods but not the specifics. I am so glad that your daughter is doing so very well. Quote Link to comment Share on other sites More sharing options...
Patches Posted October 26, 2014 Share Posted October 26, 2014 Praying for you! Of course you are worried and scared. Please update us as you can. Quote Link to comment Share on other sites More sharing options...
Starr Posted October 26, 2014 Share Posted October 26, 2014 Enjoy your little guy. Whatever the tests say your children need a healthy mom so take care of yourself. Waiting and worry are so hard! :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
sbgrace Posted October 26, 2014 Share Posted October 26, 2014 :grouphug: I'm so glad you're getting a test. My son had a sweat test. I, too, was so worried. His was ok. They have come a long way in treating CF. We had a neighbor with it until they moved, and you never would have known. He was just as healthy looking as my healthy kid. Research continues, and the outcomes are getting better all the time. Quote Link to comment Share on other sites More sharing options...
FloridaLisa Posted October 26, 2014 Share Posted October 26, 2014 Praying for your little one and for you. The what-ifs can be so worrisome. :grouphug: Lisa Quote Link to comment Share on other sites More sharing options...
creekland Posted October 26, 2014 Share Posted October 26, 2014 :grouphug: :grouphug: Will keep you in prayers. Take care. Quote Link to comment Share on other sites More sharing options...
Mimm Posted October 26, 2014 Share Posted October 26, 2014 I can't imagine what you're going through right now. I hope they can get to the bottom of what is wrong with your little one and that it's nothing major. :grouphug: Quote Link to comment Share on other sites More sharing options...
LibraryLover Posted October 26, 2014 Share Posted October 26, 2014 :grouphug: From experience I have seen that there has been so much progress, but I so hope you do not have to worry! Quote Link to comment Share on other sites More sharing options...
Moxie Posted October 26, 2014 Share Posted October 26, 2014 Just hugs. That sounds so scary. How soon will you know the results? Quote Link to comment Share on other sites More sharing options...
El... Posted October 26, 2014 Share Posted October 26, 2014 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
FriedClams Posted October 26, 2014 Share Posted October 26, 2014 Praying for you and your sweet baby. I can't imagine the stress. Please post here if you need support or encouragement. We're here for you. Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted October 26, 2014 Share Posted October 26, 2014 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
BlessedMom Posted October 26, 2014 Share Posted October 26, 2014 Praying for you and your precious little son. Quote Link to comment Share on other sites More sharing options...
La Condessa Posted October 26, 2014 Author Share Posted October 26, 2014 Thank you, everyone. They said the results will be available around 4:00 on Wednesday. Quote Link to comment Share on other sites More sharing options...
StaceyinLA Posted October 26, 2014 Share Posted October 26, 2014 Praying for you and your little one! Quote Link to comment Share on other sites More sharing options...
dirty ethel rackham Posted October 26, 2014 Share Posted October 26, 2014 :grouphug: :grouphug: Praying for a comforting outcome. Quote Link to comment Share on other sites More sharing options...
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