Guest guest Posted March 21, 2001 Report Share Posted March 21, 2001 , Just reading your reply here and was wondering if Autumn has ever been tried on Singulair for her asthma. Chad was having really bad episodes and the neb treatments just didn't do the trick. He was given steroids in the really severe times, but since being placed on Singulair by the immuno just recently, it has helped to get it stabilized. He's also on allergy shots now too, along with the daily hoard of antihistimines, nose spray, etc.. We'll also be re-starting IVIG on Friday of this week......FINALLY after 2 very rough years of him being off. We too have had changes in the immunoglobulins. Chad's were all critical in the past years, with the exception of the IGE being extremely high. But now, his IGM is actually into normal range for the first time ever. IGG was MINUS 144 in the past years, but now has decided it's going to change it's subclass deficiencies around on us. Subclass #3 was really critical in the years past with the others being low along with it, now #1 is the main culprit, with 2 and 3 and 4 still being low. But total IGG is only moderately low in comparison to where we started out. IGA is 2 points above the lowest normal range and never made it to normal in the past years. IGD is low-normal for the first time ever and IGE is even higher than it has ever been before. I can't shed any light on the subject at all, except to say that we've had this going on too. I don't know if this occured because of Chad being on IVIG for 7 years and then being off for the past 2 or what. Anyway, thought I'd mention the Singulair in case it's one you haven't tried yet. Hang in there! , mother of Chad, age 9, " Hypo " , GERD, Asthma/Bronchitis, " Allergy King " , Scoliosis, ??IGA Nephropathy and Anemia Re: Now I am confused > , > I can certainly relate to your confusion. Every time we get labs done for > Autumn, her IgG comes back lower & lower & the specialists say she's not IgG > deficient, just allergic. However, if the levels are higher when you're > sick, she must have terrible IgGs? Everytime we've tested her, she's been > on the verge of getting sick or just getting over something. > > The last time we had labs drawn, her IgG was down to 407, just borderline > for the " normal " range of 400-1000. We're drawing blood again either in > April or in May to see if there's any difference. > > Hang in there; surely something more concrete will show up sooner or later. > > BTW, Autumn woke up this morning with the worst cough & sounding very > hoarse. I think the asthma is kicking in again. I put her on treatments > every 6 hours, hoping that would break the cycle. She's sneezing, but > everything is clear so far. Maybe it's just allergy related this time. > Usually, the asthma acts up and 3 days later we're in for some infection or > another. Let's hope not. > > Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def., asthma, > chronic sinusitis, and allergies), and Duncan Avery due 5/17/01 > > > > > This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2001 Report Share Posted March 21, 2001 , Just reading your reply here and was wondering if Autumn has ever been tried on Singulair for her asthma. Chad was having really bad episodes and the neb treatments just didn't do the trick. He was given steroids in the really severe times, but since being placed on Singulair by the immuno just recently, it has helped to get it stabilized. He's also on allergy shots now too, along with the daily hoard of antihistimines, nose spray, etc.. We'll also be re-starting IVIG on Friday of this week......FINALLY after 2 very rough years of him being off. We too have had changes in the immunoglobulins. Chad's were all critical in the past years, with the exception of the IGE being extremely high. But now, his IGM is actually into normal range for the first time ever. IGG was MINUS 144 in the past years, but now has decided it's going to change it's subclass deficiencies around on us. Subclass #3 was really critical in the years past with the others being low along with it, now #1 is the main culprit, with 2 and 3 and 4 still being low. But total IGG is only moderately low in comparison to where we started out. IGA is 2 points above the lowest normal range and never made it to normal in the past years. IGD is low-normal for the first time ever and IGE is even higher than it has ever been before. I can't shed any light on the subject at all, except to say that we've had this going on too. I don't know if this occured because of Chad being on IVIG for 7 years and then being off for the past 2 or what. Anyway, thought I'd mention the Singulair in case it's one you haven't tried yet. Hang in there! , mother of Chad, age 9, " Hypo " , GERD, Asthma/Bronchitis, " Allergy King " , Scoliosis, ??IGA Nephropathy and Anemia Re: Now I am confused > , > I can certainly relate to your confusion. Every time we get labs done for > Autumn, her IgG comes back lower & lower & the specialists say she's not IgG > deficient, just allergic. However, if the levels are higher when you're > sick, she must have terrible IgGs? Everytime we've tested her, she's been > on the verge of getting sick or just getting over something. > > The last time we had labs drawn, her IgG was down to 407, just borderline > for the " normal " range of 400-1000. We're drawing blood again either in > April or in May to see if there's any difference. > > Hang in there; surely something more concrete will show up sooner or later. > > BTW, Autumn woke up this morning with the worst cough & sounding very > hoarse. I think the asthma is kicking in again. I put her on treatments > every 6 hours, hoping that would break the cycle. She's sneezing, but > everything is clear so far. Maybe it's just allergy related this time. > Usually, the asthma acts up and 3 days later we're in for some infection or > another. Let's hope not. > > Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def., asthma, > chronic sinusitis, and allergies), and Duncan Avery due 5/17/01 > > > > > This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2001 Report Share Posted March 21, 2001 Autumn's been on Singulair since last year. We have seen noticeable improvement. Instead of one long attack, we get several short ones each month. I remember once giving her treatments every 4-6 hours for a solid month, alternating with albuterol & atrovent to try & break a cycle. Even adding prelone didn't help. It was such a frustrating time for us. She also takes Pulmicort (1-2 times per day) to help with the asthma. It helps some also. Mostly, it just helps to lessen the time that we have to give her treatments every 4-6 hours. She also takes Atarax for allergies, Nasonex for sinus swelling, and gets a nasal wash at least once a day. The atarax has helped more than any other allergy medicine we've taken. She used to be on Claritin & it did nothing for her at all. She's used Nasonex since she was 18 months old. Thanks for the info, though. Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan Avery due 5/17/01 P.S. Autumn has deficiencies in subclass 1,2, & 4 of IgG. Her IgG 3 is normal--but just barely. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2001 Report Share Posted March 21, 2001 Sorry I couldn't give you something different to help her, . Bless her little heart...and YOURS! I know how bad dealing with it on a daily basis is. Fortunately, Chad doesn't have it as severely as Autumn, but I have a brother who does. I have it too. Chad does have the chronic sinus infections and allergies though, along with his other problems. I hope you'll be able to find something to slow down the attacks. Claritin didn't do Chad much good either. He's on Zyrtec now and actually, when the antihisitimines are first changed, he gets a little better. But after being on them for a while, he becomes immune to them and the docs have kept changing them around constantly. He's had almost every one on the market during his lifetime. He used to be on Nasonex, but was changed to Flonase and he also is on Flovent and Proventil. I had an IVIG infusion specialist tell me recently that IVIG helps asthma. She said they did some studies on it and that they have patients who have asthma only (not immune deficient at all) who they give IVIG to. Of course, it was chronic asthma, like Autumn has. I'll be thinking of you during this pollen season! It's already started to get bad here in Georgia. I hope Autumn will feel better soon!! Take care, Re: Now I am confused/ & > Autumn's been on Singulair since last year. We have seen noticeable > improvement. Instead of one long attack, we get several short ones each > month. I remember once giving her treatments every 4-6 hours for a solid > month, alternating with albuterol & atrovent to try & break a cycle. Even > adding prelone didn't help. It was such a frustrating time for us. > > She also takes Pulmicort (1-2 times per day) to help with the asthma. It > helps some also. Mostly, it just helps to lessen the time that we have to > give her treatments every 4-6 hours. > > She also takes Atarax for allergies, Nasonex for sinus swelling, and gets a > nasal wash at least once a day. The atarax has helped more than any other > allergy medicine we've taken. She used to be on Claritin & it did nothing > for her at all. She's used Nasonex since she was 18 months old. > > Thanks for the info, though. > > Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def., asthma, > chronic sinusitis, and allergies), and Duncan Avery due 5/17/01 > > P.S. Autumn has deficiencies in subclass 1,2, & 4 of IgG. Her IgG 3 is > normal--but just barely. > > > > > This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2001 Report Share Posted March 21, 2001 We've been told we're not a good candidate for IVIG--at least not right now. I'm not pushing the issue since we've had some success slowing down the infections with the nasal washes. But, I wish we could do something about the asthma & allergies. I wish Autumn's allergies were related to pollen--don't seem to be. Her allergies are year-round & season or time of day, etc. don't seem to affect them much at all. Thanks for the well-wishes. We need them! Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan Avery due 5/17/01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2001 Report Share Posted March 21, 2001 We've been told we're not a good candidate for IVIG--at least not right now. I'm not pushing the issue since we've had some success slowing down the infections with the nasal washes. But, I wish we could do something about the asthma & allergies. I wish Autumn's allergies were related to pollen--don't seem to be. Her allergies are year-round & season or time of day, etc. don't seem to affect them much at all. Thanks for the well-wishes. We need them! Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan Avery due 5/17/01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2001 Report Share Posted March 22, 2001 I called the nurse first thing this morning and turns out the dr had a personal favor to ask me. I work for an organization that does advocacy work (in addition to other things) for low-income individuals. He has a mother of a child who desperately needs an MRI and he wants to find the best way to get her in for treatment even though she has no way to pay. I found 2 places & am waiting for her to return my call again. I like those kinds of phone calls because there is at least some place to refer her to. Sometimes we get calls from people & have absolutely no place to refer them to--those are tough because no matter what you want to do to help, there's just nothing that can be done. I did ask her about the drainage Autumn was having since it's still clear. I asked what was the best way to dry the drainage up so that the asthma doesn't get worse. When I talk to her again, I'll see what the dr recommends. Thanks for the concern. Sometimes I feel like a supermom and I don't spend enough time on myself. Last night, I woke up with the worst contractions on the left side only--strange, huh? Probably just needed to drink lots more water because after I downed about 20 oz of water & walked around for awhile, they went away. I checked on Autumn while I was up and she was doing fine. She's breathing out of her mouth again. That's how I know there's too much drainage and it's probably coming from the sinuses. This morning she looked clear & no dark circles, so maybe we're staying ahead of it. Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan Avery due 5/17/01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2001 Report Share Posted March 22, 2001 I called the nurse first thing this morning and turns out the dr had a personal favor to ask me. I work for an organization that does advocacy work (in addition to other things) for low-income individuals. He has a mother of a child who desperately needs an MRI and he wants to find the best way to get her in for treatment even though she has no way to pay. I found 2 places & am waiting for her to return my call again. I like those kinds of phone calls because there is at least some place to refer her to. Sometimes we get calls from people & have absolutely no place to refer them to--those are tough because no matter what you want to do to help, there's just nothing that can be done. I did ask her about the drainage Autumn was having since it's still clear. I asked what was the best way to dry the drainage up so that the asthma doesn't get worse. When I talk to her again, I'll see what the dr recommends. Thanks for the concern. Sometimes I feel like a supermom and I don't spend enough time on myself. Last night, I woke up with the worst contractions on the left side only--strange, huh? Probably just needed to drink lots more water because after I downed about 20 oz of water & walked around for awhile, they went away. I checked on Autumn while I was up and she was doing fine. She's breathing out of her mouth again. That's how I know there's too much drainage and it's probably coming from the sinuses. This morning she looked clear & no dark circles, so maybe we're staying ahead of it. Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan Avery due 5/17/01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2001 Report Share Posted March 22, 2001 I'm glad to hear that there was no bad news!! Hang in there and good luck with Autumn!! Re: Re: Now I am confused/ & > I called the nurse first thing this morning and turns out the dr had a > personal favor to ask me. I work for an organization that does advocacy > work (in addition to other things) for low-income individuals. He has a > mother of a child who desperately needs an MRI and he wants to find the best > way to get her in for treatment even though she has no way to pay. I found > 2 places & am waiting for her to return my call again. I like those kinds > of phone calls because there is at least some place to refer her to. > Sometimes we get calls from people & have absolutely no place to refer them > to--those are tough because no matter what you want to do to help, there's > just nothing that can be done. > > I did ask her about the drainage Autumn was having since it's still clear. > I asked what was the best way to dry the drainage up so that the asthma > doesn't get worse. When I talk to her again, I'll see what the dr > recommends. > > Thanks for the concern. Sometimes I feel like a supermom and I don't spend > enough time on myself. Last night, I woke up with the worst contractions on > the left side only--strange, huh? Probably just needed to drink lots more > water because after I downed about 20 oz of water & walked around for > awhile, they went away. I checked on Autumn while I was up and she was > doing fine. She's breathing out of her mouth again. That's how I know > there's too much drainage and it's probably coming from the sinuses. This > morning she looked clear & no dark circles, so maybe we're staying ahead of > it. > > Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def., asthma, > chronic sinusitis, and allergies), and Duncan Avery due 5/17/01 > > > > This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2001 Report Share Posted March 22, 2001 I'm glad to hear that there was no bad news!! Hang in there and good luck with Autumn!! Re: Re: Now I am confused/ & > I called the nurse first thing this morning and turns out the dr had a > personal favor to ask me. I work for an organization that does advocacy > work (in addition to other things) for low-income individuals. He has a > mother of a child who desperately needs an MRI and he wants to find the best > way to get her in for treatment even though she has no way to pay. I found > 2 places & am waiting for her to return my call again. I like those kinds > of phone calls because there is at least some place to refer her to. > Sometimes we get calls from people & have absolutely no place to refer them > to--those are tough because no matter what you want to do to help, there's > just nothing that can be done. > > I did ask her about the drainage Autumn was having since it's still clear. > I asked what was the best way to dry the drainage up so that the asthma > doesn't get worse. When I talk to her again, I'll see what the dr > recommends. > > Thanks for the concern. Sometimes I feel like a supermom and I don't spend > enough time on myself. Last night, I woke up with the worst contractions on > the left side only--strange, huh? Probably just needed to drink lots more > water because after I downed about 20 oz of water & walked around for > awhile, they went away. I checked on Autumn while I was up and she was > doing fine. She's breathing out of her mouth again. That's how I know > there's too much drainage and it's probably coming from the sinuses. This > morning she looked clear & no dark circles, so maybe we're staying ahead of > it. > > Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def., asthma, > chronic sinusitis, and allergies), and Duncan Avery due 5/17/01 > > > > This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.