Posted By Posting
Jul 23, 2008
?s for Cooper's mom
With re: Sandifer's-how long before that simmered down? I think Nicholas is feeling at least somewhat better with the prevacid as he cries less and seems happier but he still flails arms, arches and head turns in a big way. The boy just rarely sits still. The other night his arms flailed and legs came up, tummy tightened, etc for two hours before he went back to sleep. Also, how long before you noticed an improvement with the laryngomalacia. I've been told it gets or at least sounds worse before better. Did Cooper have to have any procedures for it?? The docs don't feel Nicholas will need any intervention at this time (keeping fingers crossed/prayers). Also, how long before he slept well through the night? I imagine that the reflux and breathing difficulties will make it take longer. Our first spoiled us and was a great sleeper from the get go, sleeping 5:30 to 5:30 by 2 months-He's still a really good sleeper. Nicholas is still all over the board with regards to sleep.
Jul 24, 2008
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
Cooper still has the sandifers, it's just different now. I find he will stretch his neck back and arch from time to time now, like he's trying to get away from the reflux, but he doesn't scream when he does it. It is just his defense mechanism now. I think he is so used to such pain, that it doesn't always affect him the same. When he is having a flare up, like tonight, he will arch just like before, only it is harder to deal with now b/c he's getting so much bigger. As far as the lm, he still has it too, but it is greatly improved. It was horrible, to the point where we weren't sleeping and it was uncomfortable to go places b/c people would always look at us funny. The only thing we ever did was the bronch to confirm it. Tho we do still see a pedi pulmo regularly. He was also on an apnea monitor at night until 5 mo. His pulmo believed he was burning 80% of his calories simply on breathing. It was a huge struggle for him. It is still really bad if he has a cold, or is having a flare up. The chiropractor has really helped with this though and he snores much less now. The stridor lessened gradually over time, so there was no real turning point with that. It was a very slow improvement. I'm LOL at the sleeping through the night ?! He doesn't. He is bf tho, so that does affect that some, but I have no expectations for sleeping at this point. We average 4 -5hrs (on a good night), followed by every 2 hrs waking after that. He usually nurses quickly back to sleep but not always. Sometimes we have to get up with him. Also, I slept ijn a recliner w/ him on my chest for a long time, and still do when things are bad. It helps his breathing, reflux, and my peace of mind. Things have been really really rough for us. I was honestly scared for his life and quality of life on many occasions. But you would never know that seeing us now. there is a light at the end of the tunnel. I am so glad you found pager to help you make it there!
Jul 24, 2008
Tracey, mom to Katie diagnosed with GERD at 3 week.
Hi there! Just wanted to let you know that Katie is 9 months old and we have only had 1 sleep through the night and it was this week. The next night she was back to her waking a up twice. Initially I thought once we did formula she would sleep through the night but she doesn't. She also cannot sit still; always has to be moving and since she can't crawl that usually means throwing body around while being held or on the floor. We can't leave her in her swing anymore because she can throw herself out of it. I have nothing to add help wise but wanted you to know you aren't alone!!!!!!
Check with your
doctor first!