Guest guest Posted October 2, 2002 Report Share Posted October 2, 2002 Pam: I can give a little advice on Rocephin, gets dozens of those a year because of her antibody def and the fact she's had meningitis previously, they always go to that " just in case " and give Rocephin with any high white counts. Firstly, didn't so much get used to the shots but she came to realize they helped her... I called them " get better shots " . She got them when she was feeling really lousy and finally came to associate them with something that helped her get better. In fact, this winter she felt really sick with some bad constipation and suppositories weren't working. She asked me, " Maybe I could get a stick again some time? " which broke my heart but shows she knows it helps. But not for constipation!! Only prune juice in a turkey baster administered as if she was a farm animal worked for that. Also, you might want to make a note of where exactly on her thighs they administer the Rocephin. It's the really meaty muscular part, and that way you can see if you can't put EMLA cream on in advance if you think you'll need it. Good luck -- sounds very busy over there! (mom to Kate, born 9/19/02; and , age 3-1/2 -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2002 Report Share Posted October 2, 2002 Pam - they can run it in over about 30 minutes right before they infuse the IVIG. Macey's had it done that way several times. Plus they can also put lidocaine in with the Rocephin IM injection and that might help take the edge off the shot. Ursula Holleman Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2002 Report Share Posted October 2, 2002 OK, I'll throw my .02 in here too on rocephin shots. Autumn hates these with a passion. I call them medicine shots to differentiate between those & vaccines. She always asks me if we're getting a medicine shot. Our dr office mixes them with lidocaine which causes that initial sting that bothers her so much. Yes, the shot itself is thick, but sometimes I wonder if she could handle that if it weren't for that initial sting of lidocaine. I've had lidocaine shots in my hand before & it was no picnic--and it didn't even work! The injection of cortisone that followed was just as painful as it would have been without the deadener. If you have the option of infusing it by IV, I'd definitely take that route. We've done IV rocephin before & to me it's the less painful way to go. Ray, mother to Tabitha (age 7), Autumn, age 4 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan (16 months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2002 Report Share Posted October 2, 2002 Is it omnicef that makes the kids so sick or rocepherin? Pam mom to 4 Rebekah, 3, CVID Re: Mom's Radar Pam - they can run it in over about 30 minutes right before they infuse the IVIG. Macey's had it done that way several times. Plus they can also put lidocaine in with the Rocephin IM injection and that might help take the edge off the shot. Ursula Holleman Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org / 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 October 2, 2002 Report Share Posted October 2, 2002 Wow! The Emla idea is a great one! I'll have to file that away for the future. Just a quick question: how high is a high WBC? Rebekah's was 27.3. I've never seen it go above 14.9! She usually doesn't have an particularly elevated WBC when she's sick. Should I be startled about this count or just surprised? Pam mom to 4 Rebekah, 3, CVID Re: Mom's Radar Pam: I can give a little advice on Rocephin, gets dozens of those a year because of her antibody def and the fact she's had meningitis previously, they always go to that " just in case " and give Rocephin with any high white counts. Firstly, didn't so much get used to the shots but she came to realize they helped her... I called them " get better shots " . She got them when she was feeling really lousy and finally came to associate them with something that helped her get better. In fact, this winter she felt really sick with some bad constipation and suppositories weren't working. She asked me, " Maybe I could get a stick again some time? " which broke my heart but shows she knows it helps. But not for constipation!! Only prune juice in a turkey baster administered as if she was a farm animal worked for that. Also, you might want to make a note of where exactly on her thighs they administer the Rocephin. It's the really meaty muscular part, and that way you can see if you can't put EMLA cream on in advance if you think you'll need it. Good luck -- sounds very busy over there! (mom to Kate, born 9/19/02; and , age 3-1/2 -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2002 Report Share Posted October 2, 2002 ok, each child's PID is different (CVID) in particular. Is Rebekah known for mounting a white count with infection? Macey's not and a white count that high would have had them admitting her. Her counts are usually around 7-10 and anything around 12 gets a shot of Rocephin. Once she was 23k with a stomach bacteria and they admitted her for 23 hrs for fluids and IV antibiotics. I hope she's better soon and things improve. Ursula Holleman Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2002 Report Share Posted October 2, 2002 Pam: I hesitate to answer your question on the white count, because it seems like PID kids are different and their counts aren't always what you'd expect. All I can tell you is is very reliable with her counts and anything over 16,000 (16.0) IN HER definitely points to something bacterial. Her count was 18.0 with pneumococcal meningitis, something like 26.0 with a mystery illness the ped swears was sepsis (cultures were neg though) and 19.0 with bacterial pneumonia. So for US, Rebekah's count was quite high. I think it takes many many CBCs and illnesses before you can get a clearer picture of what the counts mean for your child, and maybe some kids aren't consistent with it anyway? (mom to Kate, born 9/19/02; and , age 3-1/2 -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2002 Report Share Posted October 3, 2002 No, Rebekah normally runs 12-15 for a serious infection. I was stunned by the WBC myself. Oh, ready for the latest?? They said to my face: " The sooner you and your husband realize that Rebekah's problem isn't a serious one, the better off you will be! " And, " At least she isn't bald from chemo. " This is a cancer treatment center for kids, but I was assertive. I looked right back at the nurse and very firmly and politely said, but cancer can sometimes be cured. Rebekah will have this for life. That stopped those kinds of comments. Pam mom to 4 Rebekah, 3, CVID Re: Mom's Radar ok, each child's PID is different (CVID) in particular. Is Rebekah known for mounting a white count with infection? Macey's not and a white count that high would have had them admitting her. Her counts are usually around 7-10 and anything around 12 gets a shot of Rocephin. Once she was 23k with a stomach bacteria and they admitted her for 23 hrs for fluids and IV antibiotics. I hope she's better soon and things improve. Ursula Holleman Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org / 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 October 3, 2002 Report Share Posted October 3, 2002 Thank you! I was hoping to hear what kind of WBC's other PID kids had. Rebekah never seems to have an elevated WBC when she is sick (and it never really drops below 11) but when I tell doctors this, they poo-poo it. So far, the radiologist could not confirm the diagnosis of pneumonia and the blood culture had not grown anything in 24 hours. Rebekah looks terrific today! She played for 4 hours today without a meltdown, without a nukie, and without her special blankies. She played in the yard, ran around and didn't fight with her sisters. She has complained of a headache this afternoon, but acts like she feels pretty good. I'm so excited to have ONE good day! Pam' mom to 4 Rebekah, 3, CVID Re: Mom's Radar Pam: I hesitate to answer your question on the white count, because it seems like PID kids are different and their counts aren't always what you'd expect. All I can tell you is is very reliable with her counts and anything over 16,000 (16.0) IN HER definitely points to something bacterial. Her count was 18.0 with pneumococcal meningitis, something like 26.0 with a mystery illness the ped swears was sepsis (cultures were neg though) and 19.0 with bacterial pneumonia. So for US, Rebekah's count was quite high. I think it takes many many CBCs and illnesses before you can get a clearer picture of what the counts mean for your child, and maybe some kids aren't consistent with it anyway? (mom to Kate, born 9/19/02; and , age 3-1/2 -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2002 Report Share Posted October 4, 2002 On the subject of white counts again -- 's counts ALWAYS drop to 5.5 or below (down to 3 at the lowest) with a virus. But that's just , that may not apply to your child. (mom to Kate, born 9/19/02; and , age 3-1/2 -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs) Quote Link to comment Share on other sites More sharing options...
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