Guest guest Posted July 31, 2001 Report Share Posted July 31, 2001 Barbie, Cassie, like Lucas, has above normal peak flows. She averages about 180-200. Usually, more around 200. She is 6 and will be 7 in October. I was told that if she starts to hover around 150 then I might need to watch her more closely and possibly administer Proventil. If it starts to drop then I need to start treatments. I know all children are different and you might want to check with your dr. to see what he thinks. Good luck and keep us posted. Belinda Rose, Mom to Cassie, igg immunodefficient, asthma, chronic sinusitis, IVIG Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2001 Report Share Posted July 31, 2001 Barbie, Cassie, like Lucas, has above normal peak flows. She averages about 180-200. Usually, more around 200. She is 6 and will be 7 in October. I was told that if she starts to hover around 150 then I might need to watch her more closely and possibly administer Proventil. If it starts to drop then I need to start treatments. I know all children are different and you might want to check with your dr. to see what he thinks. Good luck and keep us posted. Belinda Rose, Mom to Cassie, igg immunodefficient, asthma, chronic sinusitis, IVIG Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2001 Report Share Posted July 31, 2001 Barbie, My son is only 6mos but he developed hives that ingulfed nearly 90% of his body. He was checked for everything and they finally determined that the hives were caused by a virus. They put him on atarax and xopenex (when wheezing). Kim, mom to Linz 11 and Graham 6mos (Bruton's) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2001 Report Share Posted July 31, 2001 Macey's (6 yrs old) peak flow best is 180. We start medicines at 140. But again that's why they say to establish personal bests instead of going by the chart in the manual. Not everyone is the same height and I know height has something to do with how norms are determined. Plus Macey has scarring in her right middle lobe so I'm not sure how that affects them. Are you doing any type of nebulized treatments? Macey use to be on the Flovent but was changed to Pulmicort respules. When she has a flare she does Albuterol and if that doesn't work then Atrovent nebs are added every 6 hrs. The Atrovent generally brings her out of a flare. Could it be a chest infection? Macey sounded like she needed steroids earlier in July but a WBC showed infection and the Rocephin/Vantin doses helped and steroids were avoided. I hope he's feeling better soon. Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://home.att.net/~maceyh/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2001 Report Share Posted July 31, 2001 Macey's (6 yrs old) peak flow best is 180. We start medicines at 140. But again that's why they say to establish personal bests instead of going by the chart in the manual. Not everyone is the same height and I know height has something to do with how norms are determined. Plus Macey has scarring in her right middle lobe so I'm not sure how that affects them. Are you doing any type of nebulized treatments? Macey use to be on the Flovent but was changed to Pulmicort respules. When she has a flare she does Albuterol and if that doesn't work then Atrovent nebs are added every 6 hrs. The Atrovent generally brings her out of a flare. Could it be a chest infection? Macey sounded like she needed steroids earlier in July but a WBC showed infection and the Rocephin/Vantin doses helped and steroids were avoided. I hope he's feeling better soon. Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://home.att.net/~maceyh/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2001 Report Share Posted July 31, 2001 Macey's (6 yrs old) peak flow best is 180. We start medicines at 140. But again that's why they say to establish personal bests instead of going by the chart in the manual. Not everyone is the same height and I know height has something to do with how norms are determined. Plus Macey has scarring in her right middle lobe so I'm not sure how that affects them. Are you doing any type of nebulized treatments? Macey use to be on the Flovent but was changed to Pulmicort respules. When she has a flare she does Albuterol and if that doesn't work then Atrovent nebs are added every 6 hrs. The Atrovent generally brings her out of a flare. Could it be a chest infection? Macey sounded like she needed steroids earlier in July but a WBC showed infection and the Rocephin/Vantin doses helped and steroids were avoided. I hope he's feeling better soon. Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://home.att.net/~maceyh/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2001 Report Share Posted July 31, 2001 Barbie, I feel for you. Hives are scary, especially all over the body. My daughter is 10, but only weighs 53 to 55 pounds. I find quite a bit of difference in the the personal best between the different peak flow meters for my daughter. Our favorite is by Monaghan and is small, clear, with green top and bottom. Her normal is 200 on that meter and on a couple of occasions she has been 210 or 220. This was after taking Albuterol for wheezing that had just started from getting into something dusty ( a big trigger for her). Every fall she has problems with wheezing and her peak flows go down. She takes Claritin, Pulmicort, Singulair, and Albuterol( if needed). She does get hives, but not all over the body. She usually gets them from direct contact with dust, grass, weeds, animals, and some clothing. She also can get them from eating strawberry products. She developed the strawberry allergy and nylon/spandex allergy even though before she had eaten strawberries and worn clothes with the nylon/spandex and even her blanket on her bed was nylon for at least a year or two. I don't understand allergies. They seem very complex. Also, sometimes these things cause hives, sometimes they don't. Sometimes the hives are very big, sometimes very small. It is all so confusing. I wish you guys luck in figuring this out and for him to feel better soon. Jan MOTHER1544@... wrote: > HI everyone, I have posted several times over the last couple of weeks > regarding Lucas's low peak flows. He is also on Servent, Flovent that has > been increased to 110 6 puffs per day. We thought he was getting better and > they began tapering him. He has been on prednisone since the 24th. this week > he seemed to be getting better so we began tapering his dose. By Saturday he > was dropping again. So I talked to the doc and he reincreased his pred for > now. Oh yeah he also had one very large hive on his left cheek. This morning > he got up with the usual peak flow reading and then within an hour he had > hives over his entire body. We took him in and they took pictures. It was > quite impressive. I do not think there was more than a few inches not > covered. Our doc was not there so a PA saw him she is good but it just makes > me nervous. The hives went away in about 3 hours with zyrtec. My questions. > What are your 5-6 year old peak flows ?. Lucas's good ones are above the > norm for his age so they have a hard time comparing him. His normals are > 220-240 consistently. They have been consistently 180-200 with his good being > 210. Do your kids just go through these cycles? How could he get hives on > Zyrtec and Prednisone? The only thing new on meds is the Orapred the new > flavored Prednisone. I wonder if there is a perservative that he is allergic > to. Lucas does not like the taste it is very bitter. The advantage is that it > is more concentrated. Thanks for letting me vent. BARBIE > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2001 Report Share Posted July 31, 2001 Barbie, I feel for you. Hives are scary, especially all over the body. My daughter is 10, but only weighs 53 to 55 pounds. I find quite a bit of difference in the the personal best between the different peak flow meters for my daughter. Our favorite is by Monaghan and is small, clear, with green top and bottom. Her normal is 200 on that meter and on a couple of occasions she has been 210 or 220. This was after taking Albuterol for wheezing that had just started from getting into something dusty ( a big trigger for her). Every fall she has problems with wheezing and her peak flows go down. She takes Claritin, Pulmicort, Singulair, and Albuterol( if needed). She does get hives, but not all over the body. She usually gets them from direct contact with dust, grass, weeds, animals, and some clothing. She also can get them from eating strawberry products. She developed the strawberry allergy and nylon/spandex allergy even though before she had eaten strawberries and worn clothes with the nylon/spandex and even her blanket on her bed was nylon for at least a year or two. I don't understand allergies. They seem very complex. Also, sometimes these things cause hives, sometimes they don't. Sometimes the hives are very big, sometimes very small. It is all so confusing. I wish you guys luck in figuring this out and for him to feel better soon. Jan MOTHER1544@... wrote: > HI everyone, I have posted several times over the last couple of weeks > regarding Lucas's low peak flows. He is also on Servent, Flovent that has > been increased to 110 6 puffs per day. We thought he was getting better and > they began tapering him. He has been on prednisone since the 24th. this week > he seemed to be getting better so we began tapering his dose. By Saturday he > was dropping again. So I talked to the doc and he reincreased his pred for > now. Oh yeah he also had one very large hive on his left cheek. This morning > he got up with the usual peak flow reading and then within an hour he had > hives over his entire body. We took him in and they took pictures. It was > quite impressive. I do not think there was more than a few inches not > covered. Our doc was not there so a PA saw him she is good but it just makes > me nervous. The hives went away in about 3 hours with zyrtec. My questions. > What are your 5-6 year old peak flows ?. Lucas's good ones are above the > norm for his age so they have a hard time comparing him. His normals are > 220-240 consistently. They have been consistently 180-200 with his good being > 210. Do your kids just go through these cycles? How could he get hives on > Zyrtec and Prednisone? The only thing new on meds is the Orapred the new > flavored Prednisone. I wonder if there is a perservative that he is allergic > to. Lucas does not like the taste it is very bitter. The advantage is that it > is more concentrated. Thanks for letting me vent. BARBIE > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2001 Report Share Posted July 31, 2001 The whole thing has been kind of wierd. I was looking through all of his stuff from last year and his best peak flows were about 150 when we were first diagnosed. With him having infections I saw him dip to as low as 75 on several occasions. Over the last year with each pred burst and the IVIG he has dramatically increased to the 220-240 being his best. I could not believe it but it continued to last for about the last 4-6 months without dipping until about 6 weeks ago and he seemed to get a mild cold and his numbers began to dip. I was not concerned until I could not wean him off of the extra flovent and then he just kept dipping into the 175-180 range it just seemed odd. We went into the doc and he has tested him several times and his O2 sats were down to 94 from his normal of 98 and I was finding him SOB with activity. No cold, not sick that I can tell. I think I am going to request a CBC and a trough before his IVIg this week. Maybe that will tell us something. I do not want to complain because he is so much better than he was a year ago. BUT I do not want to miss something. Oh how we drive ourselves crazy. I think the doc and nurse seemed more concerned than I was until I read about the BUZZ word interstitial lung disease. which I now think is a catch all when they do not know what is going on. Thanks for the vent room. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2001 Report Share Posted October 29, 2001 Well we spent the last 3 days at the hospital with Lucas. It was planned and went well. We did his IVIg at the immunologists on Friday and then we were admitted for Go Lightly clean out with a NG and finally today They put him under general to do a colonoscopy, endoscopy and biopsies. He has had " bowel problems for years " including intermittent bloody stools weight loss and tummy aches. His previous scopes had shown eosinophilic colitis. They found telengias ( my understanding is that they are very vascular areas that bleed easily) in the stomach and small bowel as well as when she bipsied the small bowel it bled like crazy she said she would have normally expected to get atleast 3 biopsies but left well enough alone since it was so friable. We will wait for the results. It was a very well organized visit, difficult but I was very happy with the care and support. I found it better than our childrens hospital. They were very in tune with Lucas needs. Anyone been through this and have any ideas? BARBIE Lucas 5, with dysgammaglobulinemia, low IgM, selective antibody deficiencies, asthma, etc. etc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2001 Report Share Posted October 29, 2001 Barbie - glad to hear everyone is home safe and sound. Let us know when the biopsy results are in. Macey's had an endoscopy but not a colonoscopy. Her biopsy just showed muscle breakdown, they related that to the GERD. Good luck and let us know what the results are. Ursula Holleman uahollem@... and Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://www.pedpid.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2001 Report Share Posted October 29, 2001 Barbie - glad to hear everyone is home safe and sound. Let us know when the biopsy results are in. Macey's had an endoscopy but not a colonoscopy. Her biopsy just showed muscle breakdown, they related that to the GERD. Good luck and let us know what the results are. Ursula Holleman uahollem@... and Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://www.pedpid.com Quote Link to comment Share on other sites More sharing options...
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