Guest guest Posted January 23, 2000 Report Share Posted January 23, 2000 Hi Debbie, had a Broviac cath. place in May when he had brain surgery because of very poor access (he had none) but that soon was accidently pulled out by a resident. Then in July, the peds. surgeon at 's Immuno's request placed a port-a-cath. has had absolutely no problems with the port and he is accessed every 4 weeks now for IVIg and if I remember right, has been accessed 3 other times in between. We decided to go for it because it was taking them 20-30 sticks each time needed work done to get access and we just couldn't stand the fact that it was happening. We do go to a major med center (Medical College of GA) by the way. The immuno we have there is absolutly wonderful;o) Catching Up >From: PIDDJS@... > >Welcome to the new members. Last week was pretty hectic with 's surgery. >I found a huge amount of mail had piled up while I was in hospital with >, and I'm still trying to get caught up. > >Ursula, I was surprised to read that Macey is having another port placed. >Since the doctor is having her infusions moved to the hospital, why does he >feel the port is necessary? As you know from the SCID Group mail, has >awful access. When was in hospital before this last surgery, they had >to place a jugular line because everything else blew out. We've had to pull >blood with a femoral stick. Despite all this, 's immunologist won't put >a port in because of the risk of infection. gets his infusion at the >Day Medicine Unit at Children's Hospital of Philadelphia. All the other >children there for infusions have their lines placed by the Day Med. nurses. >Except that the Day Med. nurses won't even try to access . His are >always placed by the IV team nurses, and they have a little chart they keep >on which reminds them where his last good vein was found. I thought >that the doctor was moving Macey's infusions to the hospital because of her >reactions, so if he is, why is he insisting on a port? Part of the reason > is still getting his infusions at CHOP, aside from his access problem, >is also because of his reactions. His blood pressure frequently falls, and we >have to stop his infusion, bolus some fluids, and wait for him to steady out. >You can imagine the headaches he has! can't mount a fever response. The >last blood infection he had, the highest his temp went was 37.5C (99.5F). As >for long term use being a reason.... well, unless gene therapy comes through, > will remain on IVIG the rest of his life. Unlike Macey, makes no >antibodies at all. > >I would really like to hear from other members on the list whose children are >on regular infusions. Does your child have a port? How did you make the >decision to have a port? Did your child's immunologist recommend the port? > >Thanks for sharing your thoughts and comments, > >Debbie, Mom to , 3.7 yrs old, Severe Combined Immunodeficiency post Bone >Marrow Transplant, IVIG dependant, Inflammatory Bowel Disease (IBD), GERD >with hiatal hernia, chronic hepatitis, G-tube, Hypotonic CP, non-verbal, >developmental delays, CVI, seizure disorder > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2000 Report Share Posted January 23, 2000 : Who do you see in Immunology at MCG? I lived in Athens,Ga. for 3 years & then in Augusta, Ga. for 2 years. Wade was seen at MCG for Immunology & they were great then also. We saw Dr. Betty Wray. Is she still there? If that's who you see, you are in wonderful hands! Please say " hi " to her from myself & Wade ....Childrey was my last name then. When I saw in your message that you guys get IVIG at MCG, I just had to write & ask for curiosity sake. Thanks! Good Luck. Beth, Mom to Wade...13yrs. with Asthma, GERD...status post Nissen, CVID,Chronic Sinusitis,Leukopenia,IVIG..... At 08:12 PM 1/23/00 -0500, you wrote: > > >Hi Debbie, > had a Broviac cath. place in May when he had brain surgery because of >very poor access (he had none) but that soon was accidently pulled out by a >resident. Then in July, the peds. surgeon at 's Immuno's request >placed a port-a-cath. has had absolutely no problems with the port >and he is accessed every 4 weeks now for IVIg and if I remember right, has >been accessed 3 other times in between. We decided to go for it because it >was taking them 20-30 sticks each time needed work done to get access >and we just couldn't stand the fact that it was happening. We do go to a >major med center (Medical College of GA) by the way. The immuno we have >there is absolutly wonderful;o) > > > Catching Up > > >>From: PIDDJS@... >> >>Welcome to the new members. Last week was pretty hectic with 's >surgery. >>I found a huge amount of mail had piled up while I was in hospital with >>, and I'm still trying to get caught up. >> >>Ursula, I was surprised to read that Macey is having another port placed. >>Since the doctor is having her infusions moved to the hospital, why does he >>feel the port is necessary? As you know from the SCID Group mail, has >>awful access. When was in hospital before this last surgery, they had >>to place a jugular line because everything else blew out. We've had to pull >>blood with a femoral stick. Despite all this, 's immunologist won't >put >>a port in because of the risk of infection. gets his infusion at the >>Day Medicine Unit at Children's Hospital of Philadelphia. All the other >>children there for infusions have their lines placed by the Day Med. >nurses. >>Except that the Day Med. nurses won't even try to access . His are >>always placed by the IV team nurses, and they have a little chart they keep >>on which reminds them where his last good vein was found. I thought >>that the doctor was moving Macey's infusions to the hospital because of her >>reactions, so if he is, why is he insisting on a port? Part of the reason >> is still getting his infusions at CHOP, aside from his access >problem, >>is also because of his reactions. His blood pressure frequently falls, and >we >>have to stop his infusion, bolus some fluids, and wait for him to steady >out. >>You can imagine the headaches he has! can't mount a fever response. >The >>last blood infection he had, the highest his temp went was 37.5C (99.5F). >As >>for long term use being a reason.... well, unless gene therapy comes >through, >> will remain on IVIG the rest of his life. Unlike Macey, makes >no >>antibodies at all. >> >>I would really like to hear from other members on the list whose children >are >>on regular infusions. Does your child have a port? How did you make the >>decision to have a port? Did your child's immunologist recommend the port? >> >>Thanks for sharing your thoughts and comments, >> >>Debbie, Mom to , 3.7 yrs old, Severe Combined Immunodeficiency post >Bone >>Marrow Transplant, IVIG dependant, Inflammatory Bowel Disease (IBD), GERD >>with hiatal hernia, chronic hepatitis, G-tube, Hypotonic CP, non-verbal, >>developmental delays, CVI, seizure disorder >> >>--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2000 Report Share Posted January 23, 2000 Hi Beth, YES, WE SEE BETTY!! She is soooo wonderful. SUFFERED for 10 months with totally broken out skin that had horrid ulcer type wounds and green pustuals all over and went through every antibiotic and test that can be done and everyone kept coming up with excema, ARG!! but with some persistance, we got a consult to see her , Dh is a marine so we have crappy ol' tricare. We were supposed to see another doc out there, but when the clerk asked what s condition was she said that the earliest we could get in would be July, it was April at the time. I guess I sounded disappointed and was asking if anyother docs could see him becuase he was so severe and I was convinced that it had to be allergies to something. Two minutes later she came on the phone and said Betty would see him in 2 days. After skin biopsy's and test at other clinics and tons of steriods, I was hopeful. We went to the appointment and low and behold, was allergic to EVERYTHING except his formula (hypoallerginic) and sweet potatoes, pure air and pure water. And she told me that he had an immune problem and that she was going to fix my baby boy. Nine months later, I love this woman and want to give her the moon in thanks. You are so right, she is the best. And we owe her sooo much for helping . In July, for the first time, we could take our boy out to dinner without covering his skin up to keep others from loosing the will to eat. I will be seeing her tomorrow so I will tell her you said hello ;o) Catching Up >> >> >>>From: PIDDJS@... >>> >>>Welcome to the new members. Last week was pretty hectic with 's >>surgery. >>>I found a huge amount of mail had piled up while I was in hospital with >>>, and I'm still trying to get caught up. >>> >>>Ursula, I was surprised to read that Macey is having another port placed. >>>Since the doctor is having her infusions moved to the hospital, why does he >>>feel the port is necessary? As you know from the SCID Group mail, has >>>awful access. When was in hospital before this last surgery, they had >>>to place a jugular line because everything else blew out. We've had to pull >>>blood with a femoral stick. Despite all this, 's immunologist won't >>put >>>a port in because of the risk of infection. gets his infusion at the >>>Day Medicine Unit at Children's Hospital of Philadelphia. All the other >>>children there for infusions have their lines placed by the Day Med. >>nurses. >>>Except that the Day Med. nurses won't even try to access . His are >>>always placed by the IV team nurses, and they have a little chart they keep >>>on which reminds them where his last good vein was found. I thought >>>that the doctor was moving Macey's infusions to the hospital because of her >>>reactions, so if he is, why is he insisting on a port? Part of the reason >>> is still getting his infusions at CHOP, aside from his access >>problem, >>>is also because of his reactions. His blood pressure frequently falls, and >>we >>>have to stop his infusion, bolus some fluids, and wait for him to steady >>out. >>>You can imagine the headaches he has! can't mount a fever response. >>The >>>last blood infection he had, the highest his temp went was 37.5C (99.5F). >>As >>>for long term use being a reason.... well, unless gene therapy comes >>through, >>> will remain on IVIG the rest of his life. Unlike Macey, makes >>no >>>antibodies at all. >>> >>>I would really like to hear from other members on the list whose children >>are >>>on regular infusions. Does your child have a port? How did you make the >>>decision to have a port? Did your child's immunologist recommend the port? >>> >>>Thanks for sharing your thoughts and comments, >>> >>>Debbie, Mom to , 3.7 yrs old, Severe Combined Immunodeficiency post >>Bone >>>Marrow Transplant, IVIG dependant, Inflammatory Bowel Disease (IBD), GERD >>>with hiatal hernia, chronic hepatitis, G-tube, Hypotonic CP, non-verbal, >>>developmental delays, CVI, seizure disorder >>> >>>--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2000 Report Share Posted January 23, 2000 Debbie, I'm not a kiddo, but I guess I made my port decision the same way I would have made one for my child -- very reluctantly! When I was first dx'ed at Dartmouth, I read the articles that suggested that in some people, central lines were necessary. But at that point, I'd only been on home IV's 5 times, and 2 of the five were midlines, the other 3 repeated peripherals (though ***sssssh*** my homecare nurse and I said that if it felt good we weren't going to follow protocol, just to pull a perfectly functional line. Then when I got home to Dallas, and I was told I'd need 6 months of IVIG therapy, to see if it would help, we again agreed, and I still used PICCs, Midlines, and peripherals. None of those were easy to find. In the few years after that, everything started scarring, so they couldn't get a peripheral anyway, and on top of that, they had to put in a subclavian line. Well, unfortunately, they collapsed my lungs twice putting in subclavian lines, so my doctors said, " never again. " But by that point, I was on home IVs of some sort (abx, ampho, IVIG, and IV iron) pretty much the entire month. And the ampho and some of the other pre-meds are best given through a central line. My doctors really pressured me into this one -- telling me how much simpler it would make my life So we gave up and got a port. My family's best friend put it in. I got a couple of infections - one probably from the port itself, the other seeded from a bacteremic shower, and both cleared with proper abx. But during one of those infections, the ID guys wanted to pull the line immediately. But my internist, pulmo and I knew that if they pulled it, no one would ever put in another line, because of the " evidence " they had for their theory that the port would be a constant source of infection. We all wanted to treat it medically first, and if it didn't work, I'd let them pull it out. The only reason my ID team agreed was that all three of those other doctors wrote in my choice that not having central venous access could kill me (I had NOTHING left, and I required central lines, so that's what they decided). I have grown to LOVE my port -- it is why I'm able to be so flexible and such today. But earlier this year (after having the last port for almost 3 years), it just stopped working. No one knows why...So we had to pull it, and it was the most nightmarish five days in the hospital you've ever seen. My doctor asked when the first one was taking out, if they could put the second in in the same sedation period -- they said no, in case the first one was infected. But at that point, there was no question by anyone on my team that the port was central to my health staying relativel stable, and my internist was on the phone scheduling things so I could get the new port in the next couple of days. Phewwww! More than you wanted to know, I'm sure...::-) Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2000 Report Share Posted January 23, 2000 Debbie, Forgot two major points -- I didn't have an immunologist then... my internist and pulmo joined forces. They were the ones who really wanted the first port, because the pulmo had been the one to hit my lungs! Also, I didn't have an immuno here when I lost my second, so again my internist and pulmo teamed up. They call an immuno for help if needed, but he's not really calling the shots. But both places I went, the primary doctor (whether that's immuno, pulmo, internist, etc) has to contact the surgeon him/herself and request the procedure, and say what it's being done for, because some surgeons won't do them if they don't think they're medically necessary. Hopefully I didn't forget anything else!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2000 Report Share Posted January 23, 2000 Dear : I am glad you got to a Good Doctor despite TRICARE, I just fought them to see the cardiologist I want to see, hope continues to improve with his HBOT treatments, annette and alissa > >Reply-To: PedPIDonelist >To: <PedPIDonelist> >Subject: Re: Catching Up >Date: Sun, 23 Jan 2000 22:49:34 -0500 > >Hi Beth, >YES, WE SEE BETTY!! She is soooo wonderful. SUFFERED for 10 months >with totally broken out skin that had horrid ulcer type wounds and green >pustuals all over and went through every antibiotic and test that can be >done and everyone kept coming up with excema, ARG!! but with some >persistance, we got a consult to see her , Dh is a marine so we have crappy >ol' tricare. We were supposed to see another doc out there, but when the >clerk asked what s condition was she said that the earliest we could >get in would be July, it was April at the time. I guess I sounded >disappointed and was asking if anyother docs could see him becuase he was >so >severe and I was convinced that it had to be allergies to something. Two >minutes later she came on the phone and said Betty would see him in 2 days. >After skin biopsy's and test at other clinics and tons of steriods, I was >hopeful. We went to the appointment and low and behold, was allergic >to EVERYTHING except his formula (hypoallerginic) and sweet potatoes, pure >air and pure water. And she told me that he had an immune problem and that >she was going to fix my baby boy. Nine months later, I love this woman and >want to give her the moon in thanks. You are so right, she is the best. >And we owe her sooo much for helping . In July, for the first time, >we >could take our boy out to dinner without covering his skin up to keep >others >from loosing the will to eat. > >I will be seeing her tomorrow so I will tell her you said hello ;o) > > Catching Up > >> > >> > >>>From: PIDDJS@... > >>> > >>>Welcome to the new members. Last week was pretty hectic with 's > >>surgery. > >>>I found a huge amount of mail had piled up while I was in hospital with > >>>, and I'm still trying to get caught up. > >>> > >>>Ursula, I was surprised to read that Macey is having another port >placed. > >>>Since the doctor is having her infusions moved to the hospital, why >does >he > >>>feel the port is necessary? As you know from the SCID Group mail, >has > >>>awful access. When was in hospital before this last surgery, they >had > >>>to place a jugular line because everything else blew out. We've had to >pull > >>>blood with a femoral stick. Despite all this, 's immunologist >won't > >>put > >>>a port in because of the risk of infection. gets his infusion at >the > >>>Day Medicine Unit at Children's Hospital of Philadelphia. All the other > >>>children there for infusions have their lines placed by the Day Med. > >>nurses. > >>>Except that the Day Med. nurses won't even try to access . His are > >>>always placed by the IV team nurses, and they have a little chart they >keep > >>>on which reminds them where his last good vein was found. I >thought > >>>that the doctor was moving Macey's infusions to the hospital because of >her > >>>reactions, so if he is, why is he insisting on a port? Part of the >reason > >>> is still getting his infusions at CHOP, aside from his access > >>problem, > >>>is also because of his reactions. His blood pressure frequently falls, >and > >>we > >>>have to stop his infusion, bolus some fluids, and wait for him to >steady > >>out. > >>>You can imagine the headaches he has! can't mount a fever >response. > >>The > >>>last blood infection he had, the highest his temp went was 37.5C >(99.5F). > >>As > >>>for long term use being a reason.... well, unless gene therapy comes > >>through, > >>> will remain on IVIG the rest of his life. Unlike Macey, >makes > >>no > >>>antibodies at all. > >>> > >>>I would really like to hear from other members on the list whose >children > >>are > >>>on regular infusions. Does your child have a port? How did you make the > >>>decision to have a port? Did your child's immunologist recommend the >port? > >>> > >>>Thanks for sharing your thoughts and comments, > >>> > >>>Debbie, Mom to , 3.7 yrs old, Severe Combined Immunodeficiency >post > >>Bone > >>>Marrow Transplant, IVIG dependant, Inflammatory Bowel Disease (IBD), >GERD > >>>with hiatal hernia, chronic hepatitis, G-tube, Hypotonic CP, >non-verbal, > >>>developmental delays, CVI, seizure disorder > >>> > >>>--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2000 Report Share Posted January 23, 2000 Dear : Alissa and I wanted to know how your studies are going? And how you are basicly doing? Hope all is all well for you, annette and alissa > >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Re: Catching Up >Date: Mon, 24 Jan 2000 00:22:14 -0500 > >Debbie, > >Forgot two major points -- I didn't have an immunologist then... my >internist and pulmo joined forces. They were the ones who really wanted >the first port, because the pulmo had been the one to hit my lungs! > >Also, I didn't have an immuno here when I lost my second, so again my >internist and pulmo teamed up. They call an immuno for help if needed, >but he's not really calling the shots. But both places I went, the >primary doctor (whether that's immuno, pulmo, internist, etc) has to >contact the surgeon him/herself and request the procedure, and say what >it's being done for, because some surgeons won't do them if they don't >think they're medically necessary. >Hopefully I didn't forget anything else!! > ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2000 Report Share Posted January 25, 2000 Debbie, Zach had terrible trouble accessing also. The Dr threatened to put in a port, but she had us try one thing first and it worked....I know most know this, but I'll go through it all again since we have so many new members. 1st...24 hrs prior, we make sure that Zach drinks a ton....and on the way to infusion, he drinks 24-32 oz of water. 2nd...NO caffeen (we never give) or any antihistimines 24 hrs prior. It constricts the blood vessels....and we do no pre med until AFTER he's accessed. 3rd and most important....we do not use a turniquite...instead, we use a blood pressure cuff. It tightens the arm up much more than a turniquite. Zach sometimes complains that it's too tight & it hurts, but he agrees that it's easier than getting stuck numerous times. And lastly...we use Emla to cut down on the pain. Hope this works as well for your children as it does for Zach. It's saved us the hasstle and risks of a port. Wife to Tom, Mom to 7 yr Zach, ???(don't know the specific type) PID, GERD, chronic sinusitis, IVIG, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2000 Report Share Posted January 26, 2000 , we do the same thing and it works well. We had wonderful news that Alissa actually responded to the cortisol challenge and now does not need cortisol replacement therapy. The IVIG is doing its job, God Bless, annette and alissa > >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Re: Catching Up >Date: Tue, 25 Jan 2000 11:22:19 -0500 > >Debbie, > >Zach had terrible trouble accessing also. The Dr threatened to put in a >port, but she had us try one thing first and it worked....I know most know >this, but I'll go through it all again since we have so many new members. > >1st...24 hrs prior, we make sure that Zach drinks a ton....and on the way >to >infusion, he drinks 24-32 oz of water. >2nd...NO caffeen (we never give) or any antihistimines 24 hrs prior. It >constricts the blood vessels....and we do no pre med until AFTER he's >accessed. >3rd and most important....we do not use a turniquite...instead, we use a >blood pressure cuff. It tightens the arm up much more than a turniquite. >Zach sometimes complains that it's too tight & it hurts, but he agrees that >it's easier than getting stuck numerous times. >And lastly...we use Emla to cut down on the pain. > >Hope this works as well for your children as it does for Zach. It's saved >us the hasstle and risks of a port. > > >Wife to Tom, Mom to 7 yr Zach, ???(don't know the specific type) PID, GERD, >chronic sinusitis, IVIG, > > > > ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2000 Report Share Posted January 26, 2000 Hi Beth, I just wanted to drop a line and tell ya that I told Dr. Wray that you said hello. She said hello back!! Catching Up >> >> >>>From: PIDDJS@... >>> >>>Welcome to the new members. Last week was pretty hectic with 's >>surgery. >>>I found a huge amount of mail had piled up while I was in hospital with >>>, and I'm still trying to get caught up. >>> >>>Ursula, I was surprised to read that Macey is having another port placed. >>>Since the doctor is having her infusions moved to the hospital, why does he >>>feel the port is necessary? As you know from the SCID Group mail, has >>>awful access. When was in hospital before this last surgery, they had >>>to place a jugular line because everything else blew out. We've had to pull >>>blood with a femoral stick. Despite all this, 's immunologist won't >>put >>>a port in because of the risk of infection. gets his infusion at the >>>Day Medicine Unit at Children's Hospital of Philadelphia. All the other >>>children there for infusions have their lines placed by the Day Med. >>nurses. >>>Except that the Day Med. nurses won't even try to access . His are >>>always placed by the IV team nurses, and they have a little chart they keep >>>on which reminds them where his last good vein was found. I thought >>>that the doctor was moving Macey's infusions to the hospital because of her >>>reactions, so if he is, why is he insisting on a port? Part of the reason >>> is still getting his infusions at CHOP, aside from his access >>problem, >>>is also because of his reactions. His blood pressure frequently falls, and >>we >>>have to stop his infusion, bolus some fluids, and wait for him to steady >>out. >>>You can imagine the headaches he has! can't mount a fever response. >>The >>>last blood infection he had, the highest his temp went was 37.5C (99.5F). >>As >>>for long term use being a reason.... well, unless gene therapy comes >>through, >>> will remain on IVIG the rest of his life. Unlike Macey, makes >>no >>>antibodies at all. >>> >>>I would really like to hear from other members on the list whose children >>are >>>on regular infusions. Does your child have a port? How did you make the >>>decision to have a port? Did your child's immunologist recommend the port? >>> >>>Thanks for sharing your thoughts and comments, >>> >>>Debbie, Mom to , 3.7 yrs old, Severe Combined Immunodeficiency post >>Bone >>>Marrow Transplant, IVIG dependant, Inflammatory Bowel Disease (IBD), GERD >>>with hiatal hernia, chronic hepatitis, G-tube, Hypotonic CP, non-verbal, >>>developmental delays, CVI, seizure disorder >>> >>>--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2000 Report Share Posted January 28, 2000 Dear Debbie, My two sons make no antibodies and will be getting ivig for the rest of their lives as well. Our MD is most definetley against ports in immune deficient children. The boys are 10 and 12 and believe me in the beginning it was torture to watch my babies get IV's while three people were holding them down. But once we studied the problems with sepsis my husband and I put it all into perspective and agreed with our immunologist not to risk it. We have had one septic episode which brought on the diagnosis of XLA and the residual complications for my eldest son makes the convenience of a port miniscule. XLA is a relatively easy disorder to control, I would not risk their virtually normal lives to a port infection. Can you imagine losing your child to something that could have been prevented. I am not in favor of parents accessing ports either. If there are repeated infections from the ports guess who can be accused of purposeful contamination, the parents. Scary to think of it but parents do get accused of making their children ill so they can get the attention for themselves. However, in the arena of managed care, many parents are expected to do the tasks once left only to registered nurses. So it is virtually a catch 22. There are good reasons for ports however, the one main reason is the repeated use of vesicants and irritants used in chemotherapy. With chemo you do need a larger vein access so you don't destroy the surrounding tissue. In the event of long term IV antibiotics my children have had mid-line catheters and PICC lines, however both have been pulled ASAP. The use of ports are pesonal ones which can only be reached after careful discussion with the physician, and one which should not be based soley for the convenience of others but for true necessity when other avenues have been exhausted. Sincerely, Lynne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2000 Report Share Posted January 28, 2000 Lynne, Your letter was well written. Our immunologist is in agreement with yours....avoid a port at all costs. I realize, that in some cases they are necessary and with that in mind, I can understand why some patients have to have them. We were told in time that Mark would probably have to have a port (he, like your son has -0- b-cells, less then 2% and an abundance of Cd5+ cells that make autoantibodies). I dread that day and hope that we can prolong it as long as possible. We have a friend with an immune deficient boy (diagnosed at 6 months old) who is now completely off of IVIG at the young age of 5 and only has to be on prophylactic antibiotics, it can happen. This boys PED had suggested a port years ago and the immunologist said NO WAY....I also believe that the appropriate doctors (specialty) should be the ones making the medical decisions for each specialty area. Many things can happen over time. Thanks for sharing your thoughts. Autumn mom to Mark Cd5-Cd19 PID/ ASA, A1A, GERD, Achalasia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2003 Report Share Posted March 8, 2003 Tammy and Everyone Thanks to all of you for the support and yes - AETNA is currently on my LIST - it's not a good list. And, I think they will be on my list for a LONG time! I am excited and scared all at once. Any, good thoughts and prayers and much appreciated. Hugs to all - in Santa > - best of luck to you. I'm sorry the insurance companies are such > bastards! But am happy you will be able to do this anyway. Yay you! > 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.