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Hello, everyone,
Please let me know if I am not allowed to post without a definitive diagnosis. I understand how annoying "can you diagnose my child" posts can be, so let me know if I have broken any rules. I don't want a diagnosis from this thread, just ... support, I guess.
My daughter (6 months) was born with respiratory distress. They gave her surfactant, and she was on oxygen for about 24 hours. She got better, and we went home after 4 days. We were home for 24 hours when she had a low temp (like 94 degrees low). We took her to the ER, and she was hospitalized for almost 3 weeks with what was assumed to be Group B Strep (no cultures were taken before antibiotics were given). She developed Sepsis and Pneumonia.
We finally went home. She was clearly better, but her respiratory rate remained high. It ranged anywhere from 60 - 100. It was just her "norm". We began seeing a Pulmonologist and had a CT scan. She had diffuse ground glass opacities with mosaic attenuation and consolidation (no idea what that means). But Pulm feared for Inborn Surfactant Error, so we did genetic testing for the Surfactant Mutations (B, C, and ABCA3). They were negative. He also ruled out NEHI according to the CT scan. The Pulm has diagnosed her with GERD (it is very bad), and we are waiting to see what else - just damage from the pneumonia or a chronic disease?
Fast forward to today at 6 months, she is gaining weight! She is in the 98th percentile, and her respiratory rate has improved SIGNIFICANTLY. Her oxygen is almost always at 100%, and her respiratory rate is in the normal range. However, she has some symptoms of Cystic Fibrosis that I have been paranoid about for a long time. The Pulm and Pediatrician do not think she has it but "anything is possible". The Pulm agreed to a Sweat Test in 2 weeks since I told him my concerns.
She passed the newborn screening, fyi, but they only test for 40ish here in Indiana.
Her symptoms that concern me -
She sweats ... A LOT. Her forehead is constantly salty, even when she isn't actively sweating. Her pediatrician says that's not a scientific sign, but man, she is SALTY.
She poops ... A LOT. I would say 5 times is average. Most of the time they are fine with no horrible smell, but it isn't rare for there to be mucus. I also dropped some in the toilet, and it floated. Her pediatrician says the reflux medication she is on can cause mucus.
She wrinkles SO QUICKLY in the bath. I've read about aquatic wrinkling of the palms. Am I just crazy?! Lol
She coughs often and is always congested. This could be from the GERD, or....CF?
It has just been such a whirlwind with her. We almost lost her to the infection at 1 week, and I'm so afraid that this fear will never end if she has a chronic lung disease. Even if the sweat test is negative, she will forever have weak lungs. This ordeal has made me crazy!
The symptoms are there, but there are also some explanations AND her dad had GI problems and sweats horribly (I'm sure he'd be glad I'm telling this to strangers lol).
I guess...I just need to talk to someone. I'm scared, and I feel kind of alone with this. And I have to wait 2 weeks to find out something so significant...If she does have it, will it be okay?
Thanks for letting to rant, and thank you for listening. Seriously, thanks...
Please let me know if I am not allowed to post without a definitive diagnosis. I understand how annoying "can you diagnose my child" posts can be, so let me know if I have broken any rules. I don't want a diagnosis from this thread, just ... support, I guess.
My daughter (6 months) was born with respiratory distress. They gave her surfactant, and she was on oxygen for about 24 hours. She got better, and we went home after 4 days. We were home for 24 hours when she had a low temp (like 94 degrees low). We took her to the ER, and she was hospitalized for almost 3 weeks with what was assumed to be Group B Strep (no cultures were taken before antibiotics were given). She developed Sepsis and Pneumonia.
We finally went home. She was clearly better, but her respiratory rate remained high. It ranged anywhere from 60 - 100. It was just her "norm". We began seeing a Pulmonologist and had a CT scan. She had diffuse ground glass opacities with mosaic attenuation and consolidation (no idea what that means). But Pulm feared for Inborn Surfactant Error, so we did genetic testing for the Surfactant Mutations (B, C, and ABCA3). They were negative. He also ruled out NEHI according to the CT scan. The Pulm has diagnosed her with GERD (it is very bad), and we are waiting to see what else - just damage from the pneumonia or a chronic disease?
Fast forward to today at 6 months, she is gaining weight! She is in the 98th percentile, and her respiratory rate has improved SIGNIFICANTLY. Her oxygen is almost always at 100%, and her respiratory rate is in the normal range. However, she has some symptoms of Cystic Fibrosis that I have been paranoid about for a long time. The Pulm and Pediatrician do not think she has it but "anything is possible". The Pulm agreed to a Sweat Test in 2 weeks since I told him my concerns.
She passed the newborn screening, fyi, but they only test for 40ish here in Indiana.
Her symptoms that concern me -
She sweats ... A LOT. Her forehead is constantly salty, even when she isn't actively sweating. Her pediatrician says that's not a scientific sign, but man, she is SALTY.
She poops ... A LOT. I would say 5 times is average. Most of the time they are fine with no horrible smell, but it isn't rare for there to be mucus. I also dropped some in the toilet, and it floated. Her pediatrician says the reflux medication she is on can cause mucus.
She wrinkles SO QUICKLY in the bath. I've read about aquatic wrinkling of the palms. Am I just crazy?! Lol
She coughs often and is always congested. This could be from the GERD, or....CF?
It has just been such a whirlwind with her. We almost lost her to the infection at 1 week, and I'm so afraid that this fear will never end if she has a chronic lung disease. Even if the sweat test is negative, she will forever have weak lungs. This ordeal has made me crazy!
The symptoms are there, but there are also some explanations AND her dad had GI problems and sweats horribly (I'm sure he'd be glad I'm telling this to strangers lol).
I guess...I just need to talk to someone. I'm scared, and I feel kind of alone with this. And I have to wait 2 weeks to find out something so significant...If she does have it, will it be okay?
Thanks for letting to rant, and thank you for listening. Seriously, thanks...