Guest guest Posted February 14, 2012 Report Share Posted February 14, 2012 Terri,She could have an infection coming from the sinuses even if not in the ear itself. I would check into it. Also I am surprised they are not starting with a round of IV Gamma prior to the sub Q. It is usual protocol to get the body going before sub Q. I think I would consider asking so that she can bump these infections. Barbie Lucas 16 CVID From: cerdaclan@... Date: Tue, 14 Feb 2012 15:25:55 +0000 Subject: earlobe problem Has anyone dealt with a child having a swollen and painful earlobe......yes earlobe? Maggie has had a sinus infection for about 12 weeks now. She has had 2 rounds of tamiflu and 2 rounds of antibiotics without clearing. They are trying one more antibiotic today, then it is off to the ENT or ID if it does not work. She is not on immunuglobin....she has been approved FINALLY and they are shipping out tomorrow, but it will be subq and take a while to build up. Just wondering if anyone has dealt with this. She has never had mastoiditis and, when she was at the doc, she had no ear infection. However, she is tender on her mastoid bone, but no swelling there. She has no signs of an ear infection. Terri Mom and daughters with CID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2012 Report Share Posted February 14, 2012 So mstoiditis can come from a sinus infection? When she was in last week, the doc mentioned that she had eustachian tube " congestion " , but did not have an ear infection. My guess is that you cannot see an inner ear infection like you can a middle ear infection. We asked our immuno about a loading dose. The one other time they went off and back on immunoglobin, they did a loading dose. But our new immuno does not believe in loading doses. At this point, our insurance has stressed out our immunologist so badly, I am afraid to add anything else to the mix. I got and email at the end of last week that our insurance is demanding too much of their time and they cannot continue with it. You cannot believe how horrific our pharmacy coverage has been. They have denied every single prescription the doc wrote for....antibiotics, tamiflu etc....because it is " recommended to be used no more than once a year by the manufacturer " and they have to go by what the manufacturer says. She has had to appeal every single thing she writes for, then they keep losing the paperwork. We are on the homestretch now as all the approvals have finally been completed, but it has definately caused problems that we just don't need. Terri Mom and daughters with CID > > > Terri,She could have an infection coming from the sinuses even if not in the ear itself. I would check into it. Also I am surprised they are not starting with a round of IV Gamma prior to the sub Q. It is usual protocol to get the body going before sub Q. I think I would consider asking so that she can bump these infections. Barbie Lucas 16 CVID > From: cerdaclan@... > Date: Tue, 14 Feb 2012 15:25:55 +0000 > Subject: earlobe problem > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Has anyone dealt with a child having a swollen and painful earlobe......yes earlobe? Maggie has had a sinus infection for about 12 weeks now. She has had 2 rounds of tamiflu and 2 rounds of antibiotics without clearing. They are trying one more antibiotic today, then it is off to the ENT or ID if it does not work. She is not on immunuglobin....she has been approved FINALLY and they are shipping out tomorrow, but it will be subq and take a while to build up. Just wondering if anyone has dealt with this. She has never had mastoiditis and, when she was at the doc, she had no ear infection. However, she is tender on her mastoid bone, but no swelling there. She has no signs of an ear infection. > > > > Terri > > Mom and daughters with CID > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2012 Report Share Posted February 14, 2012 Exactly what I was going to say. When my son first started therapy, he did IVIG once, then started subQ the next week. This jump-starts the IgG level, and would get her well faster. mastoiditis is a very serious infection, and could have spread from her sinuses. She may need IV antibiotics for this infection. Has the doctor seen her in the past 2 days? I would make sure they know she has mastoid pain. You can even do IV antibiotics at home, if she has a central line, or they put in a PICC line. Mindy mom to , 9, hypogammaglobulinemia, on IVIG every 4 weeks > > Terri,She could have an infection coming from the sinuses even if not in > the ear itself. I would check into it. Also I am surprised they are not > starting with a round of IV Gamma prior to the sub Q. It is usual protocol > to get the body going before sub Q. I think I would consider asking so > that she can bump these infections. Barbie Lucas 16 CVIDTo: > > From: cerdaclan@... > Date: Tue, 14 Feb 2012 15:25:55 +0000 > Subject: earlobe problem > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Has anyone dealt with a child having a swollen and painful > earlobe......yes earlobe? Maggie has had a sinus infection for > about 12 weeks now. She has had 2 rounds of tamiflu and 2 rounds of > antibiotics without clearing. They are trying one more antibiotic > today, then it is off to the ENT or ID if it does not work. She is > not on immunuglobin....she has been approved FINALLY and they are > shipping out tomorrow, but it will be subq and take a while to build > up. Just wondering if anyone has dealt with this. She has never > had mastoiditis and, when she was at the doc, she had no ear > infection. However, she is tender on her mastoid bone, but no > swelling there. She has no signs of an ear infection. > > > > Terri > > Mom and daughters with CID > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2012 Report Share Posted February 14, 2012 So she is up now this morning. She said her earlobe does not hurt anymore, but she has mild (she rates it as a 3) over the bone behind her ear. Still no swelling at all. She saw the doc on Friday. She just cannot kick this sinus infection. We are being VERY careful about establishing with docs, but both the immuno and GP discussed having both of the girls followed by an ENT due to their chronic sinus problems. In all of their lives, dealing with chronic pan sinusitis, no one has ever had them see an ENT. Everything I am finding says that she should have swelling, redness and a draining ear infection if it were mastoiditis. Terri > > Exactly what I was going to say. When my son first started therapy, he > did IVIG once, then started subQ the next week. This jump-starts the IgG > level, and would get her well faster. > > mastoiditis is a very serious infection, and could have spread from her > sinuses. She may need IV antibiotics for this infection. Has the doctor > seen her in the past 2 days? I would make sure they know she has mastoid > pain. You can even do IV antibiotics at home, if she has a central line, > or they put in a PICC line. > > Mindy > mom to , 9, hypogammaglobulinemia, on IVIG every 4 weeks > > > > > Terri,She could have an infection coming from the sinuses even if not in > > the ear itself. I would check into it. Also I am surprised they are not > > starting with a round of IV Gamma prior to the sub Q. It is usual protocol > > to get the body going before sub Q. I think I would consider asking so > > that she can bump these infections. Barbie Lucas 16 CVIDTo: > > > > From: cerdaclan@... > > Date: Tue, 14 Feb 2012 15:25:55 +0000 > > Subject: earlobe problem > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Has anyone dealt with a child having a swollen and painful > > earlobe......yes earlobe? Maggie has had a sinus infection for > > about 12 weeks now. She has had 2 rounds of tamiflu and 2 rounds of > > antibiotics without clearing. They are trying one more antibiotic > > today, then it is off to the ENT or ID if it does not work. She is > > not on immunuglobin....she has been approved FINALLY and they are > > shipping out tomorrow, but it will be subq and take a while to build > > up. Just wondering if anyone has dealt with this. She has never > > had mastoiditis and, when she was at the doc, she had no ear > > infection. However, she is tender on her mastoid bone, but no > > swelling there. She has no signs of an ear infection. > > > > > > > > Terri > > > > Mom and daughters with CID > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2012 Report Share Posted February 14, 2012 ENT would be a good idea. I do understand about not wanting to get on the bad side of relatively new doctors. As parents of children with chronic illness, I think we all walk this fine line. I recently switched immunos for my son, while the old one still sees the other kids I tried to do that very, very carefully... Mindy > > So she is up now this morning. She said her earlobe does not hurt > anymore, but she has mild (she rates it as a 3) over the bone behind her > ear. Still no swelling at all. She saw the doc on Friday. She just cannot > kick this sinus infection. We are being VERY careful about establishing > with docs, but both the immuno and GP discussed having both of the girls > followed by an ENT due to their chronic sinus problems. In all of their > lives, dealing with chronic pan sinusitis, no one has ever had them see an > ENT. Everything I am finding says that she should have swelling, redness > and a draining ear infection if it were mastoiditis. > > Terri > > >> >> Exactly what I was going to say. When my son first started therapy, he >> did IVIG once, then started subQ the next week. This jump-starts the >> IgG >> level, and would get her well faster. >> >> mastoiditis is a very serious infection, and could have spread from her >> sinuses. She may need IV antibiotics for this infection. Has the >> doctor >> seen her in the past 2 days? I would make sure they know she has >> mastoid >> pain. You can even do IV antibiotics at home, if she has a central >> line, >> or they put in a PICC line. >> >> Mindy >> mom to , 9, hypogammaglobulinemia, on IVIG every 4 weeks >> >> > >> > Terri,She could have an infection coming from the sinuses even if not >> in >> > the ear itself. I would check into it. Also I am surprised they are >> not >> > starting with a round of IV Gamma prior to the sub Q. It is usual >> protocol >> > to get the body going before sub Q. I think I would consider asking so >> > that she can bump these infections. Barbie Lucas 16 CVIDTo: >> > >> > From: cerdaclan@... >> > Date: Tue, 14 Feb 2012 15:25:55 +0000 >> > Subject: earlobe problem >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > Has anyone dealt with a child having a swollen and painful >> > earlobe......yes earlobe? Maggie has had a sinus infection for >> > about 12 weeks now. She has had 2 rounds of tamiflu and 2 rounds of >> > antibiotics without clearing. They are trying one more antibiotic >> > today, then it is off to the ENT or ID if it does not work. She is >> > not on immunuglobin....she has been approved FINALLY and they are >> > shipping out tomorrow, but it will be subq and take a while to build >> > up. Just wondering if anyone has dealt with this. She has never >> > had mastoiditis and, when she was at the doc, she had no ear >> > infection. However, she is tender on her mastoid bone, but no >> > swelling there. She has no signs of an ear infection. >> > >> > >> > >> > Terri >> > >> > Mom and daughters with CID >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2012 Report Share Posted February 14, 2012 My son's earlobe does that ALL the time and no one knows why. Gets bright cherry red and swollen with a small bump on the lobe. We have had everyone look at it but no answers. Sent from my Verizon Wireless Phone Barbie Jimenez <mother5590@...> wrote: > >Terri,She could have an infection coming from the sinuses even if not in the ear itself. I would check into it. Also I am surprised they are not starting with a round of IV Gamma prior to the sub Q. It is usual protocol to get the body going before sub Q. I think I would consider asking so that she can bump these infections. Barbie Lucas 16 CVID >From: cerdaclan@... >Date: Tue, 14 Feb 2012 15:25:55 +0000 >Subject: earlobe problem > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Has anyone dealt with a child having a swollen and painful earlobe......yes earlobe? Maggie has had a sinus infection for about 12 weeks now. She has had 2 rounds of tamiflu and 2 rounds of antibiotics without clearing. They are trying one more antibiotic today, then it is off to the ENT or ID if it does not work. She is not on immunuglobin....she has been approved FINALLY and they are shipping out tomorrow, but it will be subq and take a while to build up. Just wondering if anyone has dealt with this. She has never had mastoiditis and, when she was at the doc, she had no ear infection. However, she is tender on her mastoid bone, but no swelling there. She has no signs of an ear infection. > > > >Terri > >Mom and daughters with CID > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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