Guest guest Posted September 11, 2001 Report Share Posted September 11, 2001 Lorri, Ursula, and e-mailers, Thanx for your help. After MUCH deliberation, prayer, talk, and e-mail support from you, we have decided to start our son on IVIG. His first infusion is Thursday. If he had reactions ie: rash on hands, headache, vomiting, and chills during his last treatments, do you think he will still have the same reactions since it has been 4 months since his last infusion? In the past he has been premedicated with Phenergin but if I can avoid medicating him I would like to do that. Thank you again for all of you responses. Re: IVIG vs viruses > ,, > > I think you should talk to your doctor about this. I found with her > levels just kept dropping. With winter coming and more infections our there > I found had a harder time on antibiotics could not ever get over the > tiredness and then got hit with infections. This is a very hard decision > but watch the energy level carefully. I would rather have treatments > and not be tired and sick all the time than not having them. > > Good Luck with your decision > Lorri ( 11 CVID) > ----- Original Message ----- > > To: <PedPID > > >> > > >> > > >> > > > > > > > > > > > > > > > > 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 September 11, 2001 Report Share Posted September 11, 2001 Lorri, Ursula, and e-mailers, Thanx for your help. After MUCH deliberation, prayer, talk, and e-mail support from you, we have decided to start our son on IVIG. His first infusion is Thursday. If he had reactions ie: rash on hands, headache, vomiting, and chills during his last treatments, do you think he will still have the same reactions since it has been 4 months since his last infusion? In the past he has been premedicated with Phenergin but if I can avoid medicating him I would like to do that. Thank you again for all of you responses. Re: IVIG vs viruses > ,, > > I think you should talk to your doctor about this. I found with her > levels just kept dropping. With winter coming and more infections our there > I found had a harder time on antibiotics could not ever get over the > tiredness and then got hit with infections. This is a very hard decision > but watch the energy level carefully. I would rather have treatments > and not be tired and sick all the time than not having them. > > Good Luck with your decision > Lorri ( 11 CVID) > ----- Original Message ----- > > To: <PedPID > > >> > > >> > > >> > > > > > > > > > > > > > > > > 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 September 11, 2001 Report Share Posted September 11, 2001 Lorri, Ursula, and e-mailers, Thanx for your help. After MUCH deliberation, prayer, talk, and e-mail support from you, we have decided to start our son on IVIG. His first infusion is Thursday. If he had reactions ie: rash on hands, headache, vomiting, and chills during his last treatments, do you think he will still have the same reactions since it has been 4 months since his last infusion? In the past he has been premedicated with Phenergin but if I can avoid medicating him I would like to do that. Thank you again for all of you responses. Re: IVIG vs viruses > ,, > > I think you should talk to your doctor about this. I found with her > levels just kept dropping. With winter coming and more infections our there > I found had a harder time on antibiotics could not ever get over the > tiredness and then got hit with infections. This is a very hard decision > but watch the energy level carefully. I would rather have treatments > and not be tired and sick all the time than not having them. > > Good Luck with your decision > Lorri ( 11 CVID) > ----- Original Message ----- > > To: <PedPID > > >> > > >> > > >> > > > > > > > > > > > > > > > > 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 September 11, 2001 Report Share Posted September 11, 2001 Graham is medicated with benedryl and tylenol. Have they considered reducing the rate at which he is infused? It may be needed. Our immuno. keeps the rate very slow to avoid any potential problems. It may take longer but it's worth it in the long run. Kim, mom to Linz and Graham (Bruton's) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2001 Report Share Posted September 11, 2001 Graham is medicated with benedryl and tylenol. Have they considered reducing the rate at which he is infused? It may be needed. Our immuno. keeps the rate very slow to avoid any potential problems. It may take longer but it's worth it in the long run. Kim, mom to Linz and Graham (Bruton's) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2001 Report Share Posted September 11, 2001 I agree with checking the rate. This is very important. My son is not premedicated although many patients are. Also, some brands work better for some kids than others. My son does great on Gamimune N, but had a reaction (vomiting, headache) the one time he had a different brand. Just a thought. Ben is ill today. I think it is just a cold. We hope so. IVIG is Friday. Jan akafreeman@... wrote: > Graham is medicated with benedryl and tylenol. Have they considered > reducing the rate at which he is infused? It may be needed. Our > immuno. keeps the rate very slow to avoid any potential problems. It > may take longer but it's worth it in the long run. > > Kim, mom to Linz and Graham (Bruton's) > > > 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 September 11, 2001 Report Share Posted September 11, 2001 I agree with checking the rate. This is very important. My son is not premedicated although many patients are. Also, some brands work better for some kids than others. My son does great on Gamimune N, but had a reaction (vomiting, headache) the one time he had a different brand. Just a thought. Ben is ill today. I think it is just a cold. We hope so. IVIG is Friday. Jan akafreeman@... wrote: > Graham is medicated with benedryl and tylenol. Have they considered > reducing the rate at which he is infused? It may be needed. Our > immuno. keeps the rate very slow to avoid any potential problems. It > may take longer but it's worth it in the long run. > > Kim, mom to Linz and Graham (Bruton's) > > > 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 September 12, 2001 Report Share Posted September 12, 2001 HI , I know starting your son on IVIG is scary, I've been and still am. My son is almost seven and has been getting IVIG since he was four. I never dreamed I would get used to it. I actually haven't gotten used to it, but you know your child needs it and it has to be. My suggestion is that they run his IV over several hours, especially if he is reacting. I don't know how long they run it , but maybe 7-8 hours. We also always premedicate with benadryl and Tylenol to reduce the risk of reaction. We also apply Emla cream on his hand one hour before. Some of the nurses inject Lidocaine before the IV start to extra numb his hand. Most of the time he is good and doesn't feel it. Other times he throws a fit, even though he can't feel it. Good luck, and remember we are all here for you. I will say a prayer for you and your son. I know how difficult this is. Temme Re: IVIG vs viruses > ,, > > I think you should talk to your doctor about this. I found with her > levels just kept dropping. With winter coming and more infections our there > I found had a harder time on antibiotics could not ever get over the > tiredness and then got hit with infections. This is a very hard decision > but watch the energy level carefully. I would rather have treatments > and not be tired and sick all the time than not having them. > > Good Luck with your decision > Lorri ( 11 CVID) > ----- Original Message ----- > > To: <PedPID > > >> > > >> > > >> > > > > > > > > > > > > > > > > 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 September 12, 2001 Report Share Posted September 12, 2001 In a message dated 9/11/01 8:42:52 PM Pacific Daylight Time, mew2@... writes: > My son does great on Gamimune N, but had a reaction (vomiting, > headache) the one time he had a different brand. Just a thought. > We also had this same experience. We started on a different brand but were switched to Gamimune N and have not had problems. le 11, Selective Antibody Def., IVIG for 4 years, every 3 weeks. Syringomyelia 6 surgeries in two years before being diagnosed: 4 sinus, tonsil and adenoids removed, septic hip since IVIG 0 surgery needed! Trailing off IVIG 6/28/01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2001 Report Share Posted September 12, 2001 In a message dated 9/11/01 8:42:52 PM Pacific Daylight Time, mew2@... writes: > My son does great on Gamimune N, but had a reaction (vomiting, > headache) the one time he had a different brand. Just a thought. > We also had this same experience. We started on a different brand but were switched to Gamimune N and have not had problems. le 11, Selective Antibody Def., IVIG for 4 years, every 3 weeks. Syringomyelia 6 surgeries in two years before being diagnosed: 4 sinus, tonsil and adenoids removed, septic hip since IVIG 0 surgery needed! Trailing off IVIG 6/28/01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2001 Report Share Posted September 12, 2001 My son gets gammagard. He has for the past 61/2 years like clock work massive headache, sick to his stomach then a temp of 102. We stumbled around April on Zyrtec for his spring allergies that he gets very bad. Having Zyrtec in his system has ward on the headaches, fevor and stomach problem. Just a thought! ****************************************************************************** ******************** I would like to get my son age 12 reevaluated. He has been tested for low T-Cells, low count of A, G and M cells. We have gone to U of M but would like a 2nd opinion. Any ideas? For a child that has an immune problem .. knock on wood ... he's pretty healthy, except for the minor problems with allergies and just recently his doctor prescribed inhalers. Thank you! nne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2001 Report Share Posted September 12, 2001 My son gets gammagard. He has for the past 61/2 years like clock work massive headache, sick to his stomach then a temp of 102. We stumbled around April on Zyrtec for his spring allergies that he gets very bad. Having Zyrtec in his system has ward on the headaches, fevor and stomach problem. Just a thought! ****************************************************************************** ******************** I would like to get my son age 12 reevaluated. He has been tested for low T-Cells, low count of A, G and M cells. We have gone to U of M but would like a 2nd opinion. Any ideas? For a child that has an immune problem .. knock on wood ... he's pretty healthy, except for the minor problems with allergies and just recently his doctor prescribed inhalers. Thank you! nne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2001 Report Share Posted September 12, 2001 My son gets gammagard. He has for the past 61/2 years like clock work massive headache, sick to his stomach then a temp of 102. We stumbled around April on Zyrtec for his spring allergies that he gets very bad. Having Zyrtec in his system has ward on the headaches, fevor and stomach problem. Just a thought! ****************************************************************************** ******************** I would like to get my son age 12 reevaluated. He has been tested for low T-Cells, low count of A, G and M cells. We have gone to U of M but would like a 2nd opinion. Any ideas? For a child that has an immune problem .. knock on wood ... he's pretty healthy, except for the minor problems with allergies and just recently his doctor prescribed inhalers. Thank you! nne Quote Link to comment Share on other sites More sharing options...
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