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Hi, I just found this site, and this board and decided to join. It doesnt look like this is a very busy board, but I hope to find some support and maybe a few others who share some of the same issues. Let me back up and introduce myself and my DD. I am the mom of 4 kids, all of them born preterm, but its my 3rd child who has asthma.
She was born at 33 weeks exactly by emergency c section after my water broke without warning. There was not time for the betamethasone shots which I know help immensely with short and long term lung health. She arrived at a robust 4 lbs 5 ozs and 16 inches long, breathing on her own requiring just nasal cannula for about 24 hours. After that she sailed through her NICU stay with only minimal interventions but did lose a lot of weight. At 10 days old she left the NICU behind her forever weighing just 3 lbs 14 ozs and measuring 16 1/2 inches long and breastfeeding like a champ. So well in fact she never had a drop of formula in her life and breastfed for 2 years 7 1/2 months. Her first year was quite uneventful, other than she was very small. I believe she had one ear infection around 7 weeks old, and at 11 weeks she was diagnosed with RSV. It was mild and she was not hospitalized. She was treated at home with nebulizer steroids and bronchodilaters and recovered well. Little did I know that bout of RSV would do lasting damage to her already premature lungs.
She stayed very healthy; reached all of her milestones according to her actual age and was apparently thriving at home, but was still very small. At 11 months she came down with pneumonia and from then on it was just a down hill run with her health. She was treated for bronchiolitis, RSV, pneumonia, croup, sinus infections, and other respiratory infections over and over and she was labeld as failure to thrive. At 18 months she weighed just 18 pounds. She was diagnosed with GERD at 15 months and started on Prevacid as well as PediaSure for poor growth. At 23 months old she was finally diagnosed asthmatic and started on Singulair for prevention and Albuterol for rescue.
Come winter time, this was just not enough. They added pulmicort to her list of meds, and that seemed to help. Her growth issue continued, and she was 2 years old before she broke the 20 pound mark. She was so ill all the time I had to quit my job to keep her out of day care because we could not keep her healthy. At 3 years old she had made 24 pounds, so her doctor tested her for cystic fibrosis. It came back a high negative.
When she was 4 years old she needed to go under general anesthesia for a simple dental restorative surgery (she has enamel hypoplasia due to premature birth) and that opened a whole new can of worms. She had been switched from the neb to the chamber by then which was much easier to use. 5 times she went in for her pre op physical and 5 times she failed either due to wheezing or sinus issues. She was finally diagnosed with chronic sinus disease and underwent sinus surgery that they almost never do on kids her age as well as removed her tonsils and adenoids. It didnt help much, which was a shock to her ENT and myself. He is certain that she is immunodeficient. That answered a lot of unanswered questions.
She will by 6 years old in February and we still fight this battle. We treat her asthma with daily Flovent, Singulair and Ventolin, and when that is not enough, she gets a 5 day course of Orapred. When she doesnt respond to 4 puffs of Ventolin given in 15 minute intervals 3 times, we have to go to the hospital per her pulmonologists instructions. Her GERD is still treated with Prevacid and for the chronic sinus disease she is on a steroid nasal spray and 3 week course of antibiotics for now. We are not sure where this will lead us. She is now 33 pounds; still very very small for her age, but she is on a high calorie diet and still on PediaSure. Her lungs burn all her extra calories, so this battle has been a very long frustrating one. For the immunodeficiency, for now we are trying to boost her immunities with extra vitamins (she is on twice the normal daily dose) and with diet. If she gets to the point where she has to be hospitalized for IV antibiotics to kill infections, then we will have to look into IVIG therapy, but we are really hoping to avoid that.
Wow, Im sorry that is so long, and if you read it all, you deserve a medal!!
Poor little thing that is alot to go through and be on for a 6 year old. I am so sorry to hear it.
Welcome to our friendly quite corner of JM . I am Jessi your host. I have a son Jeremy who is now 4 and has asthma. He had tons of broncitus so it always masked the asthma. They finally found it at 3 put him on once a day singular and inhaler for rescue. We do neb treatments when he gets a stuffy nose to help get ahead of him getting sick.
We are here if you have questions or just need to vent about another dr appointment .
Welcome to JM!