Guest guest Posted January 31, 2012 Report Share Posted January 31, 2012 Ursula, Poor Macey! It sounds like a really persistent bug. I hope the CT shows something that leads to a treatment that will help her feel better. I'm sure it's frustrating after being well for so long to feel so bad. Has she had her dose adjusted lately? I'm sure you are all on top of that already, but I wondered if she needs an adjustment. I hope she feels better soon! Did your husband ever start treatments? I'm sorry I can't remember all of the details, but I remember reading about his testing. Mom to Caelan (CVID, asthma, severe food allergy; on Hizentra) On 1/31/2012 3:20 PM, Ursula Holleman wrote: > > Macey had a nice run of easily a year or more of being pretty healthy. Now > it seems to come on steadily and rear its head this week. She has had a > stuffy head for over a month now that they had been treating with a nasal > spray. Then recently she went to the ped who gave her a zpack for a > possible sinus infection but what was probably a really bad cold. Then two > weeks ago she had the banging frontal headache and low grade fever and she > was sure it was sinus so we took her to the ENT then. He looked her over > and definitely said it was sinus. Doxycycline then and a new antihistamine > nasal spray. Over the weekend her peak flows dropped and she developed a > cough. Then she started breathing treatments. She has been known to have a > type of sinopulmonary syndrome where she drains her sinuses into her lungs > and not into her stomach. It sometimes results in chest infections. This > morning she went back to the ped because of the breathing and she started > her on a cough syrup and Prednisone. The ped then called the ENT to update > and now Macey's having a sinus CT tomorrow afternoon. > > She's very pale and miserable. It was such a good honeymoon. > > Ursula > mom of Macey (16,CVID) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2012 Report Share Posted January 31, 2012 Yes Les has been on treatments for almost a year. Macey's last level was over 900 which is good for her. She has them again in February. Her weight has actually dropped so I think her dose is weight appropriate. Sinus tissue isn't one of the best places gammaglobulin can get so that's why many PID patients are on maintenance antibiotics along with infusions. Macey did that for years when she was a toddler. Les lasted almost 15 years on daily antibiotics because his sinuses were really his only PID symptom. Tomorrow should tell us if she needs a third antibiotic or even another antibiotic. Ursula On Tue, Jan 31, 2012 at 4:35 PM, Herzbergs <skgcifamily@...> wrote: > ** > > > Ursula, > > Poor Macey! It sounds like a really persistent bug. I hope the CT shows > something that leads to a > treatment that will help her feel better. I'm sure it's frustrating > after being well for so long to feel so bad. > Has she had her dose adjusted lately? I'm sure you are all on top of > that already, but I wondered if she > needs an adjustment. I hope she feels better soon! > > Did your husband ever start treatments? I'm sorry I can't remember all > of the details, but I remember > reading about his testing. > > > Mom to Caelan (CVID, asthma, severe food allergy; on Hizentra) > > > On 1/31/2012 3:20 PM, Ursula Holleman wrote: > > > > Macey had a nice run of easily a year or more of being pretty healthy. > Now > > it seems to come on steadily and rear its head this week. She has had a > > stuffy head for over a month now that they had been treating with a nasal > > spray. Then recently she went to the ped who gave her a zpack for a > > possible sinus infection but what was probably a really bad cold. Then > two > > weeks ago she had the banging frontal headache and low grade fever and > she > > was sure it was sinus so we took her to the ENT then. He looked her over > > and definitely said it was sinus. Doxycycline then and a new > antihistamine > > nasal spray. Over the weekend her peak flows dropped and she developed a > > cough. Then she started breathing treatments. She has been known to have > a > > type of sinopulmonary syndrome where she drains her sinuses into her > lungs > > and not into her stomach. It sometimes results in chest infections. This > > morning she went back to the ped because of the breathing and she started > > her on a cough syrup and Prednisone. The ped then called the ENT to > update > > and now Macey's having a sinus CT tomorrow afternoon. > > > > She's very pale and miserable. It was such a good honeymoon. > > > > Ursula > > mom of Macey (16,CVID) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2012 Report Share Posted January 31, 2012 Yes Les has been on treatments for almost a year. Macey's last level was over 900 which is good for her. She has them again in February. Her weight has actually dropped so I think her dose is weight appropriate. Sinus tissue isn't one of the best places gammaglobulin can get so that's why many PID patients are on maintenance antibiotics along with infusions. Macey did that for years when she was a toddler. Les lasted almost 15 years on daily antibiotics because his sinuses were really his only PID symptom. Tomorrow should tell us if she needs a third antibiotic or even another antibiotic. Ursula On Tue, Jan 31, 2012 at 4:35 PM, Herzbergs <skgcifamily@...> wrote: > ** > > > Ursula, > > Poor Macey! It sounds like a really persistent bug. I hope the CT shows > something that leads to a > treatment that will help her feel better. I'm sure it's frustrating > after being well for so long to feel so bad. > Has she had her dose adjusted lately? I'm sure you are all on top of > that already, but I wondered if she > needs an adjustment. I hope she feels better soon! > > Did your husband ever start treatments? I'm sorry I can't remember all > of the details, but I remember > reading about his testing. > > > Mom to Caelan (CVID, asthma, severe food allergy; on Hizentra) > > > On 1/31/2012 3:20 PM, Ursula Holleman wrote: > > > > Macey had a nice run of easily a year or more of being pretty healthy. > Now > > it seems to come on steadily and rear its head this week. She has had a > > stuffy head for over a month now that they had been treating with a nasal > > spray. Then recently she went to the ped who gave her a zpack for a > > possible sinus infection but what was probably a really bad cold. Then > two > > weeks ago she had the banging frontal headache and low grade fever and > she > > was sure it was sinus so we took her to the ENT then. He looked her over > > and definitely said it was sinus. Doxycycline then and a new > antihistamine > > nasal spray. Over the weekend her peak flows dropped and she developed a > > cough. Then she started breathing treatments. She has been known to have > a > > type of sinopulmonary syndrome where she drains her sinuses into her > lungs > > and not into her stomach. It sometimes results in chest infections. This > > morning she went back to the ped because of the breathing and she started > > her on a cough syrup and Prednisone. The ped then called the ENT to > update > > and now Macey's having a sinus CT tomorrow afternoon. > > > > She's very pale and miserable. It was such a good honeymoon. > > > > Ursula > > mom of Macey (16,CVID) > > > > Quote Link to comment Share on other sites More sharing options...
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