Guest guest Posted November 4, 1999 Report Share Posted November 4, 1999 Dear Autumn: You and Your family will remain in our thoughts and prayers I wish I could do more...... God Bless, annette and alissa >From: Autti@... >Reply-To: PedPIDonelist >To: sicdmail@... >CC: PedPIDonelist >Subject: Update >Date: Thu, 4 Nov 1999 16:06:56 EST > >Hi Everyone.... > >I am so sorry that I have been so " out of touch " lately....trying to get >ready for next week and BAM 's gets sick again. Mark is doing MUCH >better....he had a very severe immune complex syndrome that was caused by a >very high amount of bacteria in his stomach that reacted fiercely to >IVIG....what happened was that his body instead of reacting normally to the >IVIG, the IVIG " pushed " the bacteria and more or less his body began to >attack itself...at least that is how they explained it to me. He did not >have an allergic reaction but this did cause severe respiratory problems >that >had to be treated with high dose steroids. Good news is....he is o.k., he >is >on oral Flagyl and then will go on Vanco for 30 days. Bad news...no more >home infusions, this was too severe of a medical crisis for both our home >care and our immunologist. Our next infusion will have to be in Cleveland >so >that Dr. Hostoffer can figure out what meds to give him during the >infusion...last time we did IV Benedryl, IV Solumedrol (sp???) and Advil. > > has a nasty sinus infection and parainfluenza again....he is on strong >doses of antibiotics for the next week and his usual dose of Prelone. We >are >still planning on the 10th for the fundoplication surgery. will go >into >isolation at home as of tomorrow (November 5th). I was really disappointed >today when the PED said that 's index fingers looked like they were >beginning to form a " clubbing " appearance....I pray this surgery works for >. > >I have been busy getting everything ready and trying to keep my sanity with >all this chaos going on......never ending story. Thanks to EVERYONE that >responded and sent us well wishes and prayers. I hope that all is well with >everyone. I will try to update the group as things happen. I hope I can >do >this......we are so nervous. Please keep in your prayers the for next >week. Thanks! > >Autumn (mom to Mark Cd5-Cd19 PID/ ASA, A1A, GERD) > >------------------------------------------------------------------------ >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. ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 1999 Report Share Posted November 11, 1999 Way to go . I am so glad to hear that you surprised everyone. Just like a " pumpkin " . Sometimes we parents forget how strong you guys are. Each day we learn from you. Helen and Matt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 1999 Report Share Posted November 12, 1999 Dear Autumn: Glad that is recovering well and hope the NG tube comes out soon. I hope it is the answer to alot of his GERD problems, please give him our love and know you all will always stay in our thoughts and our prayers!!!!!!1 God Bless, annette and alissa >From: Autti@...: >Reply-To: PedPIDonelist >To: scidmail@... >CC: PedPidonelist >Subject: Update >Date: Thu, 11 Nov 1999 17:36:14 EST > >from Autumn (Mark Cd5-Cd19/ GERD, ASA, A1A) > >Hi everyone, > >I am home for just a short while to get a shower and some clean clothes. >As >indicated, the surgery went quite well for . We did learn that his >esophagus had a fair amount of esophaghitis with bleeding and is " friable. " >It is unclear at this time if the problem is secondary to his severe GERD >or >a result of a primary motility defect of the esophagus. This is what was >causing his dysphagia, hopefully, it is a result of the GERD and all will >be >corrected. Either way, he will need 30 days of recovery time to see if >further testing is needed and we were told this evening that is was a darn >good thing that we did the surgery when we did. GI came in to see him a >short while ago and told my husband and I that he expects a long recovery >for >, but expects that he will improve with his GERD problems and perhaps >his >asthma may improve as well (lets all pray that is correct). He is still >uncomfortable this evening. They are going to try to get him to sit up >tonight. He hates the NG tube with a passion. We are hopeful that, that >will come out tonight as well, but the surgeon is not making any promises. > >I will keep everyone updated as I can, thanks for the well wishes and >prayers. So far so good!!!!!! > >------------------------------------------------------------------------ >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. ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 1999 Report Share Posted November 12, 1999 Autumn, Glad to hear things are doing okay. We're praying for you and your family. Take care and God Bless. Belinda Rose, mom to Cassie, igg immunodefficient, asthma, chronic sinusitis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 1999 Report Share Posted November 18, 1999 Thanks Ursula, Too quiet eh!! In this house that can only mean trouble, hehehe!!! But boy I love it when they are quiet, especially when they happen to be sleeping. Hope Macey is feeling well. ;o) update > > > - Glad to hear Abby's home and I hope the IV's go quickly. I hope > is feeling better also. What month. > > - thanks for the drug comparisons. We've put off the oral steroids >(now they're not sure which to use) till Monday. Recheck then. The ped >stopped the nebulized Atrovent today. Wasn't doing anything for her. So >we're back at square one with the breathing. > >But they did find out today that she has a UTI. The thought process is now >that the UTI has made her bladder swell so that it is putting pressure on >her lungs thus causing the asthma flare up or decreased breathing capacity. >I'm not too sure of that theory but it'll work for now. The culture should >be back Saturday and they've switched her from Septra to Suprax. It's >considered a breakthrough in her kidney reflux but her VCUG and ultrasound >are scheduled for the 3rd so the urologist will let us know more then. >Leave it to Macey to have a UTI right before her reflux follow-up. >Hopefully when the UTI is wiped out then the breathing will get better. >Again I'm not too sure how the UTI and breathing are related but she doesn't >have anything that yells chest infection. If things aren't better on Monday >they'll do a chest xray and look at steroids. > >Helen - good luck with the surgery. I was one of the worst orthodontic >cases my doc had ever seen. I literally had 3 rows of teeth and had to have >6 removed just to make room for the other teeth, much less allow the >orthodontic appliances to do their job. Thankfully they did it over several >months. I hope he has an easy recovery. Good luck and let us know when it >is. Congrats on Matt's levels and good health. > >Autumn - hope the boys feel better. How did Mark do in Cleveland? Was it >for IVIG or something else? Any MRI results yet? > >Does anyone else out there have a child with little or no tonsils? > >Annette - my cortisol level is less than one usually. They did a special IV >test where they gave me an IV med and then retested my levels. It is >supposed to be the test for s'. It came out normal. So noone's >questioned the low cortisol since. Let me know if they come up with >anything. > > - they've mentioned CPT in the past but no training by RT. I do admit >that when she gets all lovey and lays over my lap that I pat alittle harder >than normal on the back (don't worry no where near the hardness that would >break anything). She gives me a nice cough usually but no sputum. It just >seems to move things around. Here's the weird thing that happened this >week. Macey has no wheezing when you listen with a stethoscope but when she >does her peak flow meter and blows out you can hear a squeak. > > - hooray for . So glad to hear that he's rebounded. Hope >everyone is doing well. > >Off to check on a too quiet child. > >Ursula - & Macey (4 yr old w/CVID) mom > >>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 November 18, 1999 Report Share Posted November 18, 1999 --mom to --dysgammaglobulinemia, ALL--in remission Ursula: also had " non-existent " tonsils until 2 years ago. His adnoids were also missing fron all the x-rays. Then, He started having constant sinus and chest infections. He also started having a lot of breathing problems during sleep. His ENT schedualed him for tubes in both ears--due to infections--and checked his adnoids and tonsils while he was out. She had to take his adnoids because they were literally dissinegrating in him. They weren't swollen or even large, just so full of infection that they crumbled as she removed them! His tonsils were also removed because they also were of normal size but too spongy and infected. He never had a case of tonsilitis, strep, or any other infection in his mouth besides thrush, so all of us were suprised by the removal. The cpt's are easy to do. Just cup your hand slightly and pat. Our pediatrican taught me to do it and I do it to both boys whenever their asthma acts up. We are fununate because our pediatrican treats asthma extremely aggressively and teaches parents or caregivers how to do a lot of the stuff. update > > > - Glad to hear Abby's home and I hope the IV's go quickly. I hope > is feeling better also. What month. > > - thanks for the drug comparisons. We've put off the oral steroids > (now they're not sure which to use) till Monday. Recheck then. The ped > stopped the nebulized Atrovent today. Wasn't doing anything for her. So > we're back at square one with the breathing. > > But they did find out today that she has a UTI. The thought process is now > that the UTI has made her bladder swell so that it is putting pressure on > her lungs thus causing the asthma flare up or decreased breathing capacity. > I'm not too sure of that theory but it'll work for now. The culture should > be back Saturday and they've switched her from Septra to Suprax. It's > considered a breakthrough in her kidney reflux but her VCUG and ultrasound > are scheduled for the 3rd so the urologist will let us know more then. > Leave it to Macey to have a UTI right before her reflux follow-up. > Hopefully when the UTI is wiped out then the breathing will get better. > Again I'm not too sure how the UTI and breathing are related but she doesn't > have anything that yells chest infection. If things aren't better on Monday > they'll do a chest xray and look at steroids. > > Helen - good luck with the surgery. I was one of the worst orthodontic > cases my doc had ever seen. I literally had 3 rows of teeth and had to have > 6 removed just to make room for the other teeth, much less allow the > orthodontic appliances to do their job. Thankfully they did it over several > months. I hope he has an easy recovery. Good luck and let us know when it > is. Congrats on Matt's levels and good health. > > Autumn - hope the boys feel better. How did Mark do in Cleveland? Was it > for IVIG or something else? Any MRI results yet? > > Does anyone else out there have a child with little or no tonsils? > > Annette - my cortisol level is less than one usually. They did a special IV > test where they gave me an IV med and then retested my levels. It is > supposed to be the test for s'. It came out normal. So noone's > questioned the low cortisol since. Let me know if they come up with > anything. > > - they've mentioned CPT in the past but no training by RT. I do admit > that when she gets all lovey and lays over my lap that I pat alittle harder > than normal on the back (don't worry no where near the hardness that would > break anything). She gives me a nice cough usually but no sputum. It just > seems to move things around. Here's the weird thing that happened this > week. Macey has no wheezing when you listen with a stethoscope but when she > does her peak flow meter and blows out you can hear a squeak. > > - hooray for . So glad to hear that he's rebounded. Hope > everyone is doing well. > > Off to check on a too quiet child. > > Ursula - & Macey (4 yr old w/CVID) mom > > > 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 November 19, 1999 Report Share Posted November 19, 1999 Ursula: Sorry to hear about Macey's UTI hope it clears up fast. Well Alissa blood work was finally found and then we have been playing phone tag with the immunologist and will catch up with him monday, will let you know how that goes. We tried lowering her flovent to one puff a day and she broke through last night and starting hacking so I bumped her back up to two puff bid and the hacking cough stopped. So much for that one, Take care and have a quiet weekend. God Bless.and hope all the other pumpkins are on the mend, annette and alissa > >Reply-To: PedPIDonelist >To: " PedPID - onelist " <PedPIDonelist> >Subject: update >Date: Thu, 18 Nov 1999 20:08:09 -0500 > > - Glad to hear Abby's home and I hope the IV's go quickly. I hope > is feeling better also. What month. > > - thanks for the drug comparisons. We've put off the oral >steroids >(now they're not sure which to use) till Monday. Recheck then. The ped >stopped the nebulized Atrovent today. Wasn't doing anything for her. So >we're back at square one with the breathing. > >But they did find out today that she has a UTI. The thought process is now >that the UTI has made her bladder swell so that it is putting pressure on >her lungs thus causing the asthma flare up or decreased breathing capacity. >I'm not too sure of that theory but it'll work for now. The culture should >be back Saturday and they've switched her from Septra to Suprax. It's >considered a breakthrough in her kidney reflux but her VCUG and ultrasound >are scheduled for the 3rd so the urologist will let us know more then. >Leave it to Macey to have a UTI right before her reflux follow-up. >Hopefully when the UTI is wiped out then the breathing will get better. >Again I'm not too sure how the UTI and breathing are related but she >doesn't >have anything that yells chest infection. If things aren't better on >Monday >they'll do a chest xray and look at steroids. > >Helen - good luck with the surgery. I was one of the worst orthodontic >cases my doc had ever seen. I literally had 3 rows of teeth and had to >have >6 removed just to make room for the other teeth, much less allow the >orthodontic appliances to do their job. Thankfully they did it over >several >months. I hope he has an easy recovery. Good luck and let us know when it >is. Congrats on Matt's levels and good health. > >Autumn - hope the boys feel better. How did Mark do in Cleveland? Was it >for IVIG or something else? Any MRI results yet? > >Does anyone else out there have a child with little or no tonsils? > >Annette - my cortisol level is less than one usually. They did a special >IV >test where they gave me an IV med and then retested my levels. It is >supposed to be the test for s'. It came out normal. So noone's >questioned the low cortisol since. Let me know if they come up with >anything. > > - they've mentioned CPT in the past but no training by RT. I do >admit >that when she gets all lovey and lays over my lap that I pat alittle harder >than normal on the back (don't worry no where near the hardness that would >break anything). She gives me a nice cough usually but no sputum. It just >seems to move things around. Here's the weird thing that happened this >week. Macey has no wheezing when you listen with a stethoscope but when >she >does her peak flow meter and blows out you can hear a squeak. > > - hooray for . So glad to hear that he's rebounded. Hope >everyone is doing well. > >Off to check on a too quiet child. > >Ursula - & Macey (4 yr old w/CVID) mom > > > > > >------------------------------------------------------------------------ >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. ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 1999 Report Share Posted November 19, 1999 and Ursula: My daughter's tonsils were left in for so long until she was ten that they disintegrated as they were coagulating them off the wall of her throat. Same with her adenoids..it is the worse surgery I have ever observed. She was much better since they removed them. annette and alissa > >Reply-To: PedPIDonelist >To: <PedPIDonelist> >Subject: Re: update >Date: Thu, 18 Nov 1999 20:57:53 -0500 > >--mom to --dysgammaglobulinemia, ALL--in remission > >Ursula: > > also had " non-existent " tonsils until 2 years ago. His adnoids were >also missing fron all the x-rays. Then, He started having constant sinus >and chest infections. He also started having a lot of breathing problems >during sleep. His ENT schedualed him for tubes in both ears--due to >infections--and checked his adnoids and tonsils while he was out. She had >to take his adnoids because they were literally dissinegrating in him. >They >weren't swollen or even large, just so full of infection that they crumbled >as she removed them! His tonsils were also removed because they also were >of normal size but too spongy and infected. He never had a case of >tonsilitis, strep, or any other infection in his mouth besides thrush, so >all of us were suprised by the removal. > >The cpt's are easy to do. Just cup your hand slightly and pat. Our >pediatrican taught me to do it and I do it to both boys whenever their >asthma acts up. We are fununate because our pediatrican treats asthma >extremely aggressively and teaches parents or caregivers how to do a lot of >the stuff. > > > update > > > > > > > > - Glad to hear Abby's home and I hope the IV's go quickly. I hope > > is feeling better also. What month. > > > > - thanks for the drug comparisons. We've put off the oral >steroids > > (now they're not sure which to use) till Monday. Recheck then. The ped > > stopped the nebulized Atrovent today. Wasn't doing anything for her. >So > > we're back at square one with the breathing. > > > > But they did find out today that she has a UTI. The thought process is >now > > that the UTI has made her bladder swell so that it is putting pressure >on > > her lungs thus causing the asthma flare up or decreased breathing >capacity. > > I'm not too sure of that theory but it'll work for now. The culture >should > > be back Saturday and they've switched her from Septra to Suprax. It's > > considered a breakthrough in her kidney reflux but her VCUG and >ultrasound > > are scheduled for the 3rd so the urologist will let us know more then. > > Leave it to Macey to have a UTI right before her reflux follow-up. > > Hopefully when the UTI is wiped out then the breathing will get better. > > Again I'm not too sure how the UTI and breathing are related but she >doesn't > > have anything that yells chest infection. If things aren't better on >Monday > > they'll do a chest xray and look at steroids. > > > > Helen - good luck with the surgery. I was one of the worst orthodontic > > cases my doc had ever seen. I literally had 3 rows of teeth and had to >have > > 6 removed just to make room for the other teeth, much less allow the > > orthodontic appliances to do their job. Thankfully they did it over >several > > months. I hope he has an easy recovery. Good luck and let us know when >it > > is. Congrats on Matt's levels and good health. > > > > Autumn - hope the boys feel better. How did Mark do in Cleveland? Was >it > > for IVIG or something else? Any MRI results yet? > > > > Does anyone else out there have a child with little or no tonsils? > > > > Annette - my cortisol level is less than one usually. They did a >special >IV > > test where they gave me an IV med and then retested my levels. It is > > supposed to be the test for s'. It came out normal. So noone's > > questioned the low cortisol since. Let me know if they come up with > > anything. > > > > - they've mentioned CPT in the past but no training by RT. I do >admit > > that when she gets all lovey and lays over my lap that I pat alittle >harder > > than normal on the back (don't worry no where near the hardness that >would > > break anything). She gives me a nice cough usually but no sputum. It >just > > seems to move things around. Here's the weird thing that happened this > > week. Macey has no wheezing when you listen with a stethoscope but when >she > > does her peak flow meter and blows out you can hear a squeak. > > > > - hooray for . So glad to hear that he's rebounded. Hope > > everyone is doing well. > > > > Off to check on a too quiet child. > > > > Ursula - & Macey (4 yr old w/CVID) mom > > > > > 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. > > >------------------------------------------------------------------------ >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. ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 1999 Report Share Posted December 1, 1999 from Autumn (Mark Cd5-Cd19 PID/ GERD-post Nissen, ASA,A1A) Thank you to those who have asked or commented on the boys. , I am sad to say, is having post complications from the Nissen surgery. At the time of surgery we opted not to have a G-tube placed (which can be routine with Nissen's). There is a condition that often develops post surgery in patients that do not have G-tubes placed. Apparently, has developed this and may very well need a second surgery for a G-tube in the very near future....like next week or sooner. 's belly is extremely distended, his air flow greatly diminished and he has severe back pain....all very common symptoms of the this syndrome that often arises post surgery. A placement of a G-tube would certainly resolve the problem. We were really hoping that this would not happen to and therefore opted on the gamble of refusing the G-tube at the time of surgery. I just spoke with his physician and the plan is to do a pulmonary function test in the morning as 's air flow is so diminished and then contact the surgeon with the results. What a bummer for . Barb, I will contact you regarding the ornament exchange. Please know that my thoughts and prayers are extended to all those who are having a difficult time right now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 1999 Report Share Posted December 2, 1999 Dear Autumn: Sorry to hear is not doing as well in recovery and will keep him in our prayers, we are with you as always,wish there was more I could do for you and your family, all our love and support, God Bless, annette and alissa >From: Autti@... >Reply-To: PedPIDonelist >To: scidmail@... >CC: PedPIDonelist >Subject: Update >Date: Wed, 1 Dec 1999 21:04:12 EST > >from Autumn (Mark Cd5-Cd19 PID/ GERD-post Nissen, ASA,A1A) > >Thank you to those who have asked or commented on the boys. , I am sad >to say, is having post complications from the Nissen surgery. At the time >of >surgery we opted not to have a G-tube placed (which can be routine with >Nissen's). There is a condition that often develops post surgery in >patients >that do not have G-tubes placed. Apparently, has developed this and >may >very well need a second surgery for a G-tube in the very near >future....like >next week or sooner. 's belly is extremely distended, his air flow >greatly diminished and he has severe back pain....all very common symptoms >of >the this syndrome that often arises post surgery. A placement of a G-tube >would certainly resolve the problem. We were really hoping that this would >not happen to and therefore opted on the gamble of refusing the G-tube >at the time of surgery. I just spoke with his physician and the plan is to >do a pulmonary function test in the morning as 's air flow is so >diminished and then contact the surgeon with the results. What a bummer >for >. > >Barb, I will contact you regarding the ornament exchange. > >Please know that my thoughts and prayers are extended to all those who are >having a difficult time right now. > >------------------------------------------------------------------------ >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. ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 1999 Report Share Posted December 2, 1999 Autumn... is number one on ours thoughts right now..I am so sorry that you are having to go through this...we will pray that everything will turn out all right for you.. mom to Tony cvid..scn..chronic sinusitis Update >From: Autti@... > >from Autumn (Mark Cd5-Cd19 PID/ GERD-post Nissen, ASA,A1A) > >Thank you to those who have asked or commented on the boys. , I am sad >to say, is having post complications from the Nissen surgery. At the time of >surgery we opted not to have a G-tube placed (which can be routine with >Nissen's). There is a condition that often develops post surgery in patients >that do not have G-tubes placed. Apparently, has developed this and may >very well need a second surgery for a G-tube in the very near future....like >next week or sooner. 's belly is extremely distended, his air flow >greatly diminished and he has severe back pain....all very common symptoms of >the this syndrome that often arises post surgery. A placement of a G-tube >would certainly resolve the problem. We were really hoping that this would >not happen to and therefore opted on the gamble of refusing the G-tube >at the time of surgery. I just spoke with his physician and the plan is to >do a pulmonary function test in the morning as 's air flow is so >diminished and then contact the surgeon with the results. What a bummer for >. > >Barb, I will contact you regarding the ornament exchange. > >Please know that my thoughts and prayers are extended to all those who are >having a difficult time right now. > >>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...
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