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Children's Health board


I am hoping someone can help me out with my son Lane, he is 2 1/2 years old. He has been very sick ever since 5 weeks of age. At 5 weeks of age Lane come down with RSV and was in the hosptital for a month. He was in and out of an oxygen tent. They told me he was going to be a whezzer. Whatever that means. Some times and not all but doctors have no clue what to say and not to say. Since then he has been on a number of different meds. At 6 weeks they said Lane had reflux. They tried then to do a UGI but I nurse all my children til 14 months and he would not take a bottle. So they said they were positive he had reflux. Up until 5 months ago Lane was on aerosale treatments everyday. Pulmocort and Xeponex. He has never went a day without a dose of meds. He was taking not long ago. Prevacid pill (2 years old and can already take a pill) 2x daily. Singulair pill at night. Reglan 4x a day. Erythromision 4x daily. Rhinocort as needed. Hydro Dp one time at night for bad coughing spells and to help sleep. I try to never do this med. He also takes Flovent in the a.m. and p.m. Abburterol inhaler after the Flovent, and as needed. The EES tears his stomach up. Going to the bathroom atleast 4 to 5 times a day. They switched him to Biaxin after his trip to Scottish Rite Hospital. After numberous times telling the doctor that something is wrong with my son. They never listened. My Ped would say he's just a happy whezzer. I asked to be sent to a specialist. 5 months ago his Asthma and Allergy doctor said he wanted some tests run for me. They sent him to the Medical College of Georgia. He has Hypertension in his lungs, extra air sacs, and scar tissue from the RSV. They did a UGI which in over 2 years Lane has never had. The one as an infant never would work. They just kept telling me that they knew he had reflux. The UGI came back positive for reflux. They sent us to Scottish Rite to have a PH-probe inserted into his nose down into his espoygus. He had reflux 52 times in 24 hours. Lasting from 1,3,5,7,11, and one lasting 47 minutes at night. They said that it has probably started eatting away at his espoygus. He is having a fundoplication surgery on August 22. Lane has had over 20 ear infections and was not taking a 20 months of age. They inserted tubes and we paid for someone to come out and do speech with him. Since then he has some speech problems but has gained tons of language. The puzzle is that since about 7 months of age Lane has had extremely high fevers. He had a serizure with a fever at a year of age with his fever being 105.6. About every so often like clock work he will have a fever. Since before 2 he could come up to me and hold his head, we taught Lane simple signs to communicate with us since no talking was going on. I would feel his head and he would have a fever if not too high and I could get med to him quick enough it would not go up. Now not the case. He will come tell me I ran a fever and he will be burning up. He starts a 103.5 and within 15 minutes it's 104.8,104.9,105. It lasts from anywhere from 5 hours to 7 days. He ran a fever of 104.8 to 105 24/7 for 7 days straight. Sometimes he will be out and want to lay around. Sometimes he can function as though no fever at all. He will ask for med. when not feeling good. He says he needs puffs when he is coughing and whezzing. He throws up foam and muscus alot through out the day. He also says he is choking too, while holding his thoart. My doctor keeps saying it's a virsus causing the fever. But I'm in there 3 to 4 times a month or calling. He's fevers are bad. My ped says it's Lane's way of fighting off infection. But has never tried to do any testing. His Pulmoniligust and Gastrointerligist has ordered a Cystric Fibrosis test and he was they said border line. They did two other tests for it and said the was okay. I had read about Perodic Fever Syndrome called my Ped and they acted like I was dumb. Lanes surgeron will not do the Fundoplication if he is running a fever. Can someone please help me. Lane's surgery is in 2 weeks. Everyone says the fevers are a puzzle.
Thanks,
Brittany and Family