Guest guest Posted April 13, 2005 Report Share Posted April 13, 2005 , Did you ever have the titers checked and another IgA/IgG/IgM with subclasses done after the IVIG ran out for ? BTW, Dr. Shapiro asked about you when we did our spring visit. Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2005 Report Share Posted April 13, 2005 , Did you ever have the titers checked and another IgA/IgG/IgM with subclasses done after the IVIG ran out for ? BTW, Dr. Shapiro asked about you when we did our spring visit. Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2005 Report Share Posted April 13, 2005 , First BIG (((HUGS))) to you and . *he said that some people can do well and others do poorly and there isn't any way to tell who will do well or not* That statement right there makes me think, that each child needs to be looked at as a individual, and they need to take them seriously, because they DON'T know what can happen to these precious little ones. They should take the time to protect them, find a diagnosis the best they can, and take every precaution so that something bad doesn't happen, but also find a way also for these children to have the best " quality " life that they can. I think its a fine line. *whatever I'm doing, keep doing, cuz he should be sicker than what he is* This is proof that your doing a great job!! But it is a very heavy load to carry as a mother. Your mother instincts are great, and don't second guess them. I've found mine have never been wrong with Zach. *Am I just nuts for being scared and worried?????? Is this so abnormal??????????? This is VERY NORMAL. If you weren't worried or scared then you wouldn't be feeling. I'm sure every parent here has had these overwhelming thoughts and fears, some more then others. *Maybe if we had some sort of a plan/diagnosis, maybe I wouldn't be so worried......then you have how we've been treated when we bring in to walk in clinic and our ped isn't on* Find the dr who you feel is there for the best interests of . One that cares and knows him better then any other dr. Then have the dr make the decisions. Have them write it down if necessary. I found this is the best plan to have, especially after this past hospitalization we just had. Having drs who really don't know your child, and no idea really how to treat them is one of the worse situations to be in!! *Maybe I just need to get admitted to the pysch ward for awhile.......give me a padded cell..... * Make sure you reserve that bed next to you for ME!!~WINK~ I have felt that way many times. And when it comes to that husband subject...hmmm I won't even go there. If you ever want to talk. I'll be happy to email you my # or I'll call you since I have unlimited long distance. I'm here for you if needed. I might not have answers, but I definately can understand where you are right now.~MG Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2005 Report Share Posted April 13, 2005 Pam, The IGG sub class three was still low, the iga went to 14 and then I think we redid just the quantitative ones in february when his mouth was so bad and the iga was up to 40....... What did dr. Shapiro have to say.....I sometimes think about calling him also....but just don't know what to do. My ped is so comfortable with U of Minn that it's hard to do anything else........I may come to Fargo early this Friday....if so, will give you a call.....I got to see your ped on my first weekend in the PICU>>.. Quoting Pam Mork <pmork@...>: > > > > > > , > > > > Did you ever have the titers checked and another IgA/IgG/IgM with subclasses > > done after the IVIG ran out for ? BTW, Dr. Shapiro asked about you > > when we did our spring visit. > > > > Pam > > > > > > > > > > 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. > > > > To unsubscribe -unsubscribegroups (DOT) > > To search group archives go to: > /messages > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2005 Report Share Posted April 14, 2005 Dr. S said that he would really like you to come back again. He didn't like hearing that has been quite sick all winter. I know the guy is so dog-gone optimistic about not needing major treatment! I remember very well how shocked I was by his analysis that Rebekah would just need prophylactic antibiotics for several years. Well, after we did the correct bloodwork, the results were so bad, he called us at home to admit that he'd been wrong and that we needed to look at lifetime treatment options. Since you are collecting opinions for a very confusing case, you might reconsider seeing him. He sees most of the immune compromised children in a 5-state area. Call me if you come to town. I'll be home after 10:30 am until 1:30 pm and again after 4:30. Did you get the new job? Has it started yet? Pam RE: 's follow up Pam, The IGG sub class three was still low, the iga went to 14 and then I think we redid just the quantitative ones in february when his mouth was so bad and the iga was up to 40....... What did dr. Shapiro have to say.....I sometimes think about calling him also....but just don't know what to do. My ped is so comfortable with U of Minn that it's hard to do anything else........I may come to Fargo early this Friday....if so, will give you a call.....I got to see your ped on my first weekend in the PICU>>.. Quoting Pam Mork <pmork@...>: > > > > > > , > > > > Did you ever have the titers checked and another IgA/IgG/IgM with subclasses > > done after the IVIG ran out for ? BTW, Dr. Shapiro asked about you > > when we did our spring visit. > > > > Pam > > > > > > > > > > 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. > > > > To unsubscribe -unsubscribegroups (DOT) > > To search group archives go to: > /messages > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2005 Report Share Posted April 20, 2005 - I went through something very similar with my daughter last summer. We were told that she might have variant of SCIDS but, since I was still nursing/homeschooling/taking precautions, she was still with us. Until we went to Duke and saw Dr. Buckley, I was a wreck and afraid that if I so much as sneezed in the wrong direction that I could destroy my child. I have never felt such terror in my life. So what did we learn at Duke? That our daughter has immune irregularities but not SCIDS. So, wonderful no SCIDS but what the heck is it? Still, we don't know exactly what we are dealing with but our daughter is on IVIG and thriving. She still suffers more than most kids but is doing okay. is going to be okay too. But, of course, it will require that you do all of the mommying -- as you do. My heart to you and yours, (mom to Dani -- low everything and happy!) <lmschatz@...> wrote: Well, thanks for the words of encouragement. I did get ahold of a at CCMC.....she is going to touch base with the BMT nurse coordinator and I will get to talk with them. I haven't heard from IDF yet, but I did decide to call Dr. K in MPLS and just told him that basically I am having a real hard time with all of this. I am freaking out, I understand where he is coming from but feel that a face to face meeting to lay the cards on the table would be appropriate and he whole heartedly agreed. He informed me that since has entered his practice he has two other patients with an NK cell defect, one is doing well and the other is doing poorly..........The one doing poorly has some other things wrong, and he feels that the only defect with is the NK cells.....he said that some people can do well and others do poorly and there isn't any way to tell who will do well or not.....I think that I understand that, but I just need all the cards played out so that I can make my own decisions.....He felt that it was good of me to recognize that I am freaking out and that it is normal as a parent to be concerned, it is his job to reassure me and let me know all of the info out there. I do feel like a made a little headway with him.............. So, I called my hubby and told him we were set up for the 28th of this month to see him. I broke down and cried and told Warren how scared I am and that I'm not trying to be going nuts, but that the weight of all of this is on me...What if I miss something??????? we've been told he could die by the first hematologist that we saw.....Then when we went to Fargo, that dr. really painted a bad picture on how his immune system really didn't work and everything was low and he couldn't even fight off the normal bacteria in his mouth......then the IVIG fiasco and my ped tsk tsking me about doing that.....Then you go to MPLS and see an immunologist who basically negates everything that you've been told and takes your son off all his meds and you watch your son get sick and his counts go down.......and everything that they said wouldn't happen, did.......Then you fight with medicaid to get a second opinion with a different type of Dr. and have three days of testing.......and weeks of waiting and then retesting......... I won't forget what Dr. K told me.....he said his NK cells don't function at all, they did it twice and whatever I'm doing, keep doing, cuz he should be sicker than what he is................Am I just nuts for being scared and worried?????? Is this so abnormal??????????? Maybe if we had some sort of a plan/diagnosis, maybe I wouldn't be so worried......then you have how we've been treated when we bring in to walk in clinic and our ped isn't on...............No wonder I'm nuts....Maybe I just need to get admitted to the pysch ward for awhile.......give me a padded cell..... Then I tell my hubby that I see all the bad cases, and that doesn't help....so his reply is, well you see some good too, don't you???? well yah, but I see an awful lot of bad.....then I said to him, remember what Dr. B said to me when I became septic after delivering igh....he said well, if you weren't a nurse, this wouldn't have happened to you.....so my UNSUPPORTIVE husband says......is there any scientific evidence to support that only bad things happen to nurses....UGH>>>>>>>>>>>>>>>>>>>>>>>>>>>I told him thank you so much for being supportive and hung up on him........ Thanks for letting me vent. I'll keep you posted as to what plays out....... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2005 Report Share Posted April 20, 2005 , thanks for the reply, things got worse last friday when I read a letter sent to my ped....basically it sounds like there was a potential mistake on 's labs....but don't know which part. They have not come forth and told me this. I'll forward the other email that I sent, I may not have posted it here. We are going to cincinnatti childrens ASAP whether medicaid covers or not. The other post i sent is on the home computer and Kaitlyn is on it....I'm on the lap top and can't access my sent messages. I'll send it tomorrow and fill you in on the other details. Need to get to bed. Quoting Schulman <dietdoc@...>: > > > > > > - > > > > I went through something very similar with my daughter last summer. We were > told that she might have variant of SCIDS but, since I was still > nursing/homeschooling/taking precautions, she was still with us. Until we > went to Duke and saw Dr. Buckley, I was a wreck and afraid that if I so much > as sneezed in the wrong direction that I could destroy my child. I have > never felt such terror in my life. > > > > So what did we learn at Duke? That our daughter has immune irregularities > but not SCIDS. So, wonderful no SCIDS but what the heck is it? Still, we > don't know exactly what we are dealing with but our daughter is on IVIG and > thriving. She still suffers more than most kids but is doing okay. > > > > is going to be okay too. But, of course, it will require that you do > all of the mommying -- as you do. > > > > My heart to you and yours, > > (mom to Dani -- low everything and happy!) > > > > <lmschatz@...> wrote: > > Well, thanks for the words of encouragement. I did get ahold of a > > at CCMC.....she is going to touch base with the BMT nurse coordinator > > and I will get to talk with them. I haven't heard from IDF yet, but I > > did decide to call Dr. K in MPLS and just told him that basically I am > > having a real hard time with all of this. I am freaking out, I > > understand where he is coming from but feel that a face to face meeting > > to lay the cards on the table would be appropriate and he whole > > heartedly agreed. He informed me that since has entered his > > practice he has two other patients with an NK cell defect, one is doing > > well and the other is doing poorly..........The one doing poorly has > > some other things wrong, and he feels that the only defect with is > > the NK cells.....he said that some people can do well and others do > > poorly and there isn't any way to tell who will do well or not.....I > > think that I understand that, but I just need all the cards played out > > so that I can make my own decisions.....He felt that it was good of me > > to recognize that I am freaking out and that it is normal as a parent to > > be concerned, it is his job to reassure me and let me know all of the > > info out there. I do feel like a made a little headway with > > him.............. > > > > So, I called my hubby and told him we were set up for the 28th of this > > month to see him. I broke down and cried and told Warren how scared I > > am and that I'm not trying to be going nuts, but that the weight of all > > of this is on me...What if I miss something??????? we've been told he > > could die by the first hematologist that we saw.....Then when we went to > > Fargo, that dr. really painted a bad picture on how his immune system > > really didn't work and everything was low and he couldn't even fight off > > the normal bacteria in his mouth......then the IVIG fiasco and my ped > > tsk tsking me about doing that.....Then you go to MPLS and see an > > immunologist who basically negates everything that you've been told and > > takes your son off all his meds and you watch your son get sick and his > > counts go down.......and everything that they said wouldn't happen, > > did.......Then you fight with medicaid to get a second opinion with a > > different type of Dr. and have three days of testing.......and weeks of > > waiting and then retesting......... > > > > I won't forget what Dr. K told me.....he said his NK cells don't > > function at all, they did it twice and whatever I'm doing, keep doing, > > cuz he should be sicker than what he is................Am I just nuts > > for being scared and worried?????? Is this so abnormal??????????? > > Maybe if we had some sort of a plan/diagnosis, maybe I wouldn't be so > > worried......then you have how we've been treated when we bring in > > to walk in clinic and our ped isn't on...............No wonder I'm > > nuts....Maybe I just need to get admitted to the pysch ward for > > awhile.......give me a padded cell..... Then I tell my hubby that I see > > all the bad cases, and that doesn't help....so his reply is, well you > > see some good too, don't you???? well yah, but I see an awful lot of > > bad.....then I said to him, remember what Dr. B said to me when I became > > septic after delivering igh....he said well, if you weren't a nurse, > > this wouldn't have happened to you.....so my UNSUPPORTIVE husband > > says......is there any scientific evidence to support that only bad > > things happen to nurses....UGH>>>>>>>>>>>>>>>>>>>>>>>>>>>I told him > > thank you so much for being supportive and hung up on him........ > > > > Thanks for letting me vent. I'll keep you posted as to what plays > > out....... > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2005 Report Share Posted September 3, 2005 Hi I am impressed with your scores..97% in quiet is considered topping out,by my audiologist, so i doubt that a 2nd CI will make much difference there .Also 90 % in noise is super.I assume these are the HINT tests right?Yesterday i was tested with a different noise test.. has also had these.(pretty frustrating weren't they,?)As a man reads a sentence people in the background are talking and they get louder and louder.I did super with both my processors on ...much better than with either one of my processors individually.I would guess that you will have improvements in noisey places as well as with directionality. Dora Weber Nucleus Volunteer Advocate dora_weber@... Bilateral N22-96 N24C-01 Cochlear Otosclerosis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2005 Report Share Posted September 3, 2005 Hi Dora, The main reason my surgeon recommended bilaterals was for personal safety. I've read that bilateral CIs don't make a huge difference in one's ability to understand speech, so if/when I go bilateral, it will allow me to be safer as a totally blind person in being able to localize sound when crossing streets and using environmental sounds for orientation. Yes -- my speech scores were based on the HINT. I also took the test you mentioned with only my CI. (I scored 34% correct at 3 months post activation.) My audi said that is one of the most difficult tests for a CI user and that the top performer at our CI center scored 64% correct at 12 months post activation. Directionality continues to be a problem for me -- especially with orientation. When I hear a sound I automatically assume that it's coming from my left even though it might be a very loud sound coming from my right. I also have problems hearing and understanding people on my right side. It can be very disorienting when I'm talking to someone, turn to my left because that's where I hear sounds clearly and am told they are on my right side. When that happens, I need to reorient myself which causes me to turn completely around and end up in a different location/position/area from where I started. That can be really confusing especially when I'm using sound cues on my left, tactual landmarks on my right -- and momentarily forget that I need to make a 90 degree turn in order to get back to the original location/position I started from. LOL! If I have the chance to go bilateral, I will make sure to ask the surgical staff to keep my CI on at all times. I'm sure you were relieved to be able to hear the nurses around you instead of awakening to complete silence! I'm not sure what I would think if I woke up after surgery being unable to see or hear anything. I know I would be quite scared and would probably go into a panic. Implanted: 12/22/04 Activated: 1/18/05 Deafblind/Postlingual BTE hearing aid user 20 years Severe-profound hearing loss 10 years Quote Link to comment Share on other sites More sharing options...
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