Guest guest Posted March 8, 2001 Report Share Posted March 8, 2001 >>We had a child one time come from an outlying hospital and mom was giving Zithromax for what had been diagnosed an ear infection. The local hospital sent her to us when her workup was septic but failed to give her a loading dose of Rocephin before the ambulance transport. By the time she got to the PICU she was showing petechiae and started to stop breathing. Turned out to be meningitis and she passed later that morning. If only the local hospital had just hooked her up to a quick broad spectrum antibiotic but they wanted to send us the culture reports they had drawn and waited on those. <<<< Ursula, Oh, your story made me cringe. had been on amoxicillin for " back-to-back " ear infections, which more likely was one unresolved one. She awoke one morning with a terrible, unusual cry and had a fever of 103 rectal, which she'd never had before. By the time we got her to the ped she was starting to lose consciousness (we still had no idea something so serious was going on!!). The ped agonized over giving the shot of Rocephin there, because she didn't want to mess up the lumbar puncture when she sent us to the ER. She DID NOT give the shot. fell into a coma on the way to the ER (pneumoccocal meningitis). My husband to this day does not forgive her for that, he feels she should have given the shot. Since everything turned out okay (as far as we know, so far!), I am satisfied because the LP was able to tell us the first antibiotic they gave at the hospital, Cefotaxime (along with Vancomycin, which did work), was not going to work as well as Ceftriaxone. We wouldn't have known that if we didn't get a clean LP. But reading your story sent chills up my spine because I know it could just as easily have gone the other way. And I also know our regular ped would have given the Rocephin, without hesitation. In fact, he gives it to all the time!!! ) Well, every time she's over 102 rectal. Thanks for your reminder, seriously. Next time I won't be such a know-it-all since I know it's so common to give the Rocephin. (mom to , age 2, antibody def, IgA, IgM, IgG def - not on IGIV yet) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 Hi, Just wanted to give you an update on 's article that he wrote about his IVIG treatments. It was titled, IT Would Be Strange...He won 1 St. place for his age group 3-5th grade in the state. We just received the official letter from the California State PTA. He will receive the Award Of Excellence, an engraved medallion, a $100 savings bond and an Awards and Recognition book. Which his lit piece will be in. He has also been asked to read his piece at the California State Convention in San on April 28th, there will be 5,000 people in attendance!! They will also take care of our accommodations and travel arrangements. has agreed to read it! His peice has also been forwarded to the National PTA for future consideration. We are looking forward to Baltimore! I don't post much but am so thankful for this site. has been having a real struggle these past two weeks but it has been reassuring reading the post and knowing there is so much support out there! Thank you again for managing this site! le 10, selective antibody def. IVIG 3 years every three weeks, syringomyelia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 Hi, Just wanted to give you an update on 's article that he wrote about his IVIG treatments. It was titled, IT Would Be Strange...He won 1 St. place for his age group 3-5th grade in the state. We just received the official letter from the California State PTA. He will receive the Award Of Excellence, an engraved medallion, a $100 savings bond and an Awards and Recognition book. Which his lit piece will be in. He has also been asked to read his piece at the California State Convention in San on April 28th, there will be 5,000 people in attendance!! They will also take care of our accommodations and travel arrangements. has agreed to read it! His peice has also been forwarded to the National PTA for future consideration. We are looking forward to Baltimore! I don't post much but am so thankful for this site. has been having a real struggle these past two weeks but it has been reassuring reading the post and knowing there is so much support out there! Thank you again for managing this site! le 10, selective antibody def. IVIG 3 years every three weeks, syringomyelia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2001 Report Share Posted March 28, 2001 No - Macey got an exemption from the pediatrician but it has to be renewed each year. Ursula Holleman uahollem@... and Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://www.pedpid.com /group/PedPID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2001 Report Share Posted March 28, 2001 No - Macey got an exemption from the pediatrician but it has to be renewed each year. Ursula Holleman uahollem@... and Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://www.pedpid.com /group/PedPID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2001 Report Share Posted March 28, 2001 No - Macey got an exemption from the pediatrician but it has to be renewed each year. Ursula Holleman uahollem@... and Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://www.pedpid.com /group/PedPID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2001 Report Share Posted March 28, 2001 I guess we'll have to do that every year too. Good luck with your upcoming dentist appointment!! I hope Macey comes through it all well. Will be thinking of you. RE: Ursula > No - Macey got an exemption from the pediatrician but it has to be renewed > each year. > > Ursula Holleman uahollem@... > and Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD, > kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) > > http://www.pedpid.com > > /group/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 March 28, 2001 Report Share Posted March 28, 2001 I guess we'll have to do that every year too. Good luck with your upcoming dentist appointment!! I hope Macey comes through it all well. Will be thinking of you. RE: Ursula > No - Macey got an exemption from the pediatrician but it has to be renewed > each year. > > Ursula Holleman uahollem@... > and Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD, > kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) > > http://www.pedpid.com > > /group/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 April 7, 2001 Report Share Posted April 7, 2001 Macey has been on maintenance meds for 2-3 yrs. She will go back on the Miralax (made by the same company that makes Go-Lytely) once a day every day. We are to watch for the same symptoms that brought us back to the GI. Vomitting, weight loss, stomach cramps I want to thank everyone for their kind thoughts and prayers. It has been a wonderful thing to log on and read the encouraging emails and thoughts that have been sent. I truly realize once again why I needed to start this group. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2001 Report Share Posted April 17, 2001 Autumn - if has nephrogenic DI (which i think is what you told me before) then he will never concentrate his urine because he doesn't have the benefit of using DDAVP. Macey has shown post void and vaginal residual on all her VCUG's and it is a trying thing for us to keep her clear of yeast because the after-dribble of the PVR keeps the area moist and a breeding ground for yeast infections. I'm not quite sure why her bladder size is so large except that either she was drinking so much fluid before her DI diagnosis that it just stretched too much. Maybe that means that since she has been treated for 2 yrs with DDAVP and her volume has gone down that maybe she will grow into her bladder. Doubtful though because in 98' when we started the VCUG's her bladder size was 250 cc's and now it's doubled to over 500 cc's (couldn't get an accurate measurement because at 500 the Radiologist stopped hanging new dye bottles and just called it quits). The bladder spasms could be from pressure from too much fluid (large bladder) or from the bladder being squeezed by fecal impaction. Who knows. Whenever there's a urinary conversation in discussion groups I like to throw it out there in case anyone else has similar problems. And see it worked.... walla your email. Ursula Holleman Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://home.att.net/~maceyh/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2001 Report Share Posted April 17, 2001 Ursula, From the way the paper is describing this, there hasn't been a case like this one in our county for over 20 years. Thank you for the info on this. I didn't know there are two types of bacterial, only that there is viral and bacterial. I guess I'm just nervous about it because we only live 3 minutes from the hospital....can actually see it from our house. Chad has to go there both tomorrow and Thursday. Wish his treatment wasn't due just yet! Thanks again and take care. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2001 Report Share Posted April 19, 2001 So let me get this straight. You have a CBC drawn with a WBC of 40,000 and the lab will not release the result until you pay? So who is liable when the patient dies? There must be a law somewhere to protect this form of blackmail. I think I would call a regulating agency . or atleast a senator to make a law preventing this. I thought I had heard them all but boy this is a new one for me. Blue cross often does not pay for months. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2001 Report Share Posted April 19, 2001 So let me get this straight. You have a CBC drawn with a WBC of 40,000 and the lab will not release the result until you pay? So who is liable when the patient dies? There must be a law somewhere to protect this form of blackmail. I think I would call a regulating agency . or atleast a senator to make a law preventing this. I thought I had heard them all but boy this is a new one for me. Blue cross often does not pay for months. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2001 Report Share Posted April 19, 2001 So let me get this straight. You have a CBC drawn with a WBC of 40,000 and the lab will not release the result until you pay? So who is liable when the patient dies? There must be a law somewhere to protect this form of blackmail. I think I would call a regulating agency . or atleast a senator to make a law preventing this. I thought I had heard them all but boy this is a new one for me. Blue cross often does not pay for months. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2001 Report Share Posted April 20, 2001 Ursula, when I get tests I do not understand I decided a long time ago to try......to let it go because I use to ruin my weekends worrying and then find out on Monday it was nothing to worry about. I had then lost two days with my family and had made no difference in the big picture. So the questions that I now ask my self are? Does this need to be taken care of immediately? ( is it imminent) Will the result change the way my child needs to be treated? Is there anything I can personally do about it? Am I going to kill someone on Monday? ( just kidding, because if I have all weekend to think about killing someone then it is premeditated murder)I would rather it be a fit of rage explained by a distraught mother out of her mind protecting her child.) I am so empathizing with you that I got carried away. I so often have your dilemma. Sometimes I wish I could just let someone else make all the decisions. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2001 Report Share Posted April 20, 2001 Ursula, when I get tests I do not understand I decided a long time ago to try......to let it go because I use to ruin my weekends worrying and then find out on Monday it was nothing to worry about. I had then lost two days with my family and had made no difference in the big picture. So the questions that I now ask my self are? Does this need to be taken care of immediately? ( is it imminent) Will the result change the way my child needs to be treated? Is there anything I can personally do about it? Am I going to kill someone on Monday? ( just kidding, because if I have all weekend to think about killing someone then it is premeditated murder)I would rather it be a fit of rage explained by a distraught mother out of her mind protecting her child.) I am so empathizing with you that I got carried away. I so often have your dilemma. Sometimes I wish I could just let someone else make all the decisions. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2001 Report Share Posted April 20, 2001 Ursula, when I get tests I do not understand I decided a long time ago to try......to let it go because I use to ruin my weekends worrying and then find out on Monday it was nothing to worry about. I had then lost two days with my family and had made no difference in the big picture. So the questions that I now ask my self are? Does this need to be taken care of immediately? ( is it imminent) Will the result change the way my child needs to be treated? Is there anything I can personally do about it? Am I going to kill someone on Monday? ( just kidding, because if I have all weekend to think about killing someone then it is premeditated murder)I would rather it be a fit of rage explained by a distraught mother out of her mind protecting her child.) I am so empathizing with you that I got carried away. I so often have your dilemma. Sometimes I wish I could just let someone else make all the decisions. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2001 Report Share Posted April 20, 2001 Ursula Holleman wrote: Ok, so what do I do with the Hib information? Is this > a red flag or a red herring? > > I hate getting lab results on a Friday. Makes for the longest weekend. > Ursula, my unsolicited opinion on what to do with the HIB info: pretend you never got it, and go about the weekend as usual. Nothing you do this weekend is going to change the answer of the docs next week, and nothing you do this weekend will make a difference in whether Macey catches or responds to HIB this very weekend, and you'll just drive yourself nutty trying to figure everything out, when there probably isn't a simple answer. If you didn't have the result, and she came down with sinusitis this weekend, you'd probably use exactly the same antibiotics and treat her exactly the same you would if you told the on-call person she had no titers on this result you got today; that piece of information may affect her long-term management, but it isn't going to change your weekend, other than to bring you more stress. As I said to Beth A. in the last (big) message, I think that most of the time, these individual titer results have to be interpreted in light of each person's clinical status and their other results, so the doctors' response to a particular result in one person really doesn't shed a lot of info on anyone else's situation. I'm not talking about IgG levels or some of the more basic things, but more about the finer details, like specific antibody titers. Some people are devastated by an inability to make H. flu titers (we know a family who has dealt with a different strain of H. flu for years and is only now seeing the light of day after years and years of abx and even lung resection), and others really don't seem to have any problems with it even though their immune system appears not to respond, either because their immune systems are compensating well through some other mechanism, because HIB isn't as prevalent in their particular community (because of immunizations and antibiotic resistance differences in various parts of the world/country), or because antibiotic prophylaxis for other things is covering it okay. HIB responds to a lot of very common antibiotics (PCNs, cephalosporins, macrolides, even the bactrim Macey's on for prophylaxis), so I wouldn't let it cause you too much stress before you get the doctor's opinions on the whole picture. Have a *good* weekend! :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2001 Report Share Posted April 20, 2001 Ursula Holleman wrote: Ok, so what do I do with the Hib information? Is this > a red flag or a red herring? > > I hate getting lab results on a Friday. Makes for the longest weekend. > Ursula, my unsolicited opinion on what to do with the HIB info: pretend you never got it, and go about the weekend as usual. Nothing you do this weekend is going to change the answer of the docs next week, and nothing you do this weekend will make a difference in whether Macey catches or responds to HIB this very weekend, and you'll just drive yourself nutty trying to figure everything out, when there probably isn't a simple answer. If you didn't have the result, and she came down with sinusitis this weekend, you'd probably use exactly the same antibiotics and treat her exactly the same you would if you told the on-call person she had no titers on this result you got today; that piece of information may affect her long-term management, but it isn't going to change your weekend, other than to bring you more stress. As I said to Beth A. in the last (big) message, I think that most of the time, these individual titer results have to be interpreted in light of each person's clinical status and their other results, so the doctors' response to a particular result in one person really doesn't shed a lot of info on anyone else's situation. I'm not talking about IgG levels or some of the more basic things, but more about the finer details, like specific antibody titers. Some people are devastated by an inability to make H. flu titers (we know a family who has dealt with a different strain of H. flu for years and is only now seeing the light of day after years and years of abx and even lung resection), and others really don't seem to have any problems with it even though their immune system appears not to respond, either because their immune systems are compensating well through some other mechanism, because HIB isn't as prevalent in their particular community (because of immunizations and antibiotic resistance differences in various parts of the world/country), or because antibiotic prophylaxis for other things is covering it okay. HIB responds to a lot of very common antibiotics (PCNs, cephalosporins, macrolides, even the bactrim Macey's on for prophylaxis), so I wouldn't let it cause you too much stress before you get the doctor's opinions on the whole picture. Have a *good* weekend! :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2001 Report Share Posted April 20, 2001 UGGHHHH. poor guys. Ok, so what do I do with the Hib information? Is this a red flag or a red herring? I hate getting lab results on a Friday. Makes for the longest weekend. Ursula Holleman uahollem@... and Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://www.pedpid.com /group/PedPID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2001 Report Share Posted April 20, 2001 UGGHHHH. poor guys. Ok, so what do I do with the Hib information? Is this a red flag or a red herring? I hate getting lab results on a Friday. Makes for the longest weekend. Ursula Holleman uahollem@... and Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://www.pedpid.com /group/PedPID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2001 Report Share Posted April 21, 2001 Autumn, So sorry Mark is feeling bad again. Hopefully the Zithromax will work quickly for him. Autumn usually needs 2 bursts of it to clear out an infection. Did you talk with him about the hair loss yet? 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 April 21, 2001 Report Share Posted April 21, 2001 - now it helps to know that the Septra is a coverage. I have wondered very little over the results this weekend and since it's beautiful weather here now and we're outside most of today (except when I snuck in to check this email) its all in the back of my mind. Thanks for the note of encouragement. Ursula Holleman Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://home.att.net/~maceyh/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2001 Report Share Posted May 1, 2001 Autumn, I'm so sorry you're having such a difficult time. must feel terrible and without the docs being able to find some answers . . . ? I know (as does everyone else, I'm sure) what it's like to ask for answers & not get them. Hopefully they can find some things that will work for him quickly. I think in Mark's situation, you did emotionally what every mother would have done for their child. You avoided another traumatic situation, even if it meant not following drs orders. Now that you've faced that issue with the dr, I'm sure you'll come to some compromises with them to get the information they & you need to help Mark over this illness. Let us know how things are going. We all need to vent some times. You're in my prayers--along with the boys. God bless you. 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 May 1, 2001 Report Share Posted May 1, 2001 Autumn, I'm so sorry you're having such a difficult time. must feel terrible and without the docs being able to find some answers . . . ? I know (as does everyone else, I'm sure) what it's like to ask for answers & not get them. Hopefully they can find some things that will work for him quickly. I think in Mark's situation, you did emotionally what every mother would have done for their child. You avoided another traumatic situation, even if it meant not following drs orders. Now that you've faced that issue with the dr, I'm sure you'll come to some compromises with them to get the information they & you need to help Mark over this illness. Let us know how things are going. We all need to vent some times. You're in my prayers--along with the boys. God bless you. 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...
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