Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 Your situation sounds like what I'm going through with Les right now. Since being diagnosed he has become difficult to talk to about his health. He thinks at every turn we're trying to " get a line in him " or set him up for surgery. Right now his CT showed infection in both sides with 3 of the 4 sinuses nasty. He is on Avelox but if it doesn't clear things up then they may need to do surgery. He asked me today not to recommend surgery to the ENT if the next CT is still bad. The ENT has said the only way to get a culture of the most infected area is surgery. Les said no. So basically I've told him that until he wants to maturely manage his illness then he can complain to the wind. I don't want to hear it. I don't want to see him curled on the couch with a sinus headache and he better not take one quality bit of time away from these girls (one of which has her own sinus junk to deal with right now) because he doesn't feel good. Tell her to wallo in that self pity somewhere else if she won't do what's recommended. sorry, sore subject around here right now. -- Ursula Holleman Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://home.att.net/~maceyh/ wife to stubborn mule (Les) 35, CVID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 Dale & all other Moms & Dads, This is Lynne', you responded to my questions a while back. I'm new to this, so I'm not even sure I'm doing this right. We got a call today from my doctors' nurse, she said her IGG2 was borderline, the quantitive imugobulin was 362, and subclass-1 was 285. She said it was the same numbers three years ago when all this started. They said when they took the blood I would have no choice but to infuse the IVIG, if her scores were the same. We go in Friday to " discuss " my options. You said you would do it over 1000 times again. So is the consences out there that I should not be afraid of the IVIG? I'm sooo scared. Scared for her, of what this will do, even though I know the Lord will give her the strength. All the numbers they gave me I have no idea what they mean. Can anyone help? God Bless, Lynne' Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 Dale & all other Moms & Dads, This is Lynne', you responded to my questions a while back. I'm new to this, so I'm not even sure I'm doing this right. We got a call today from my doctors' nurse, she said her IGG2 was borderline, the quantitive imugobulin was 362, and subclass-1 was 285. She said it was the same numbers three years ago when all this started. They said when they took the blood I would have no choice but to infuse the IVIG, if her scores were the same. We go in Friday to " discuss " my options. You said you would do it over 1000 times again. So is the consences out there that I should not be afraid of the IVIG? I'm sooo scared. Scared for her, of what this will do, even though I know the Lord will give her the strength. All the numbers they gave me I have no idea what they mean. Can anyone help? God Bless, Lynne' Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 Dale, Just remember this is her choice...... you can not feel guilty if she is not feeling well. God has given us a free will and when we realize we need help he is there. She will do the same thing......when she realizes you are going to let her call the shots.....when its gets bad you know where she will come running to...Maybe she needs this to see how things can get. Of course you'll be keeping a close and protective eye but sounds like she will need to stumble before she realizes and takes responsibility...........Growing up.....UG I do not want my kid to get any older!! Love ya and praying for you and the wisdom you will need during this time. le Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 Dale, Just remember this is her choice...... you can not feel guilty if she is not feeling well. God has given us a free will and when we realize we need help he is there. She will do the same thing......when she realizes you are going to let her call the shots.....when its gets bad you know where she will come running to...Maybe she needs this to see how things can get. Of course you'll be keeping a close and protective eye but sounds like she will need to stumble before she realizes and takes responsibility...........Growing up.....UG I do not want my kid to get any older!! Love ya and praying for you and the wisdom you will need during this time. le Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 Hi Dale, Wow, I don't think I'm prepared for a quiz!! Just teasing, that was wonderful advice. Now, I have a question--I am gathering up info before I see a Rheumatologist. How much did IVIG help Katy's headaches? And what about muscle weakness? The other theory my Doc had for my bad health lately (besides Lupus) would be simply an IgA or IgG def. just like my son. So I appreciate any info you can share. The problem with that theory is that my head pain is so very severe. You have really made me think with your last e-mail, though. Thank you-- Sandi--Mom to , age 9. Suspected IgA def., Tetrology of Fallot, chronic sinusitis, chronic ear infections, asthma, severe allergies, GERD. Ten surgeries, heart surgery pending. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 Hi Dale, Wow, I don't think I'm prepared for a quiz!! Just teasing, that was wonderful advice. Now, I have a question--I am gathering up info before I see a Rheumatologist. How much did IVIG help Katy's headaches? And what about muscle weakness? The other theory my Doc had for my bad health lately (besides Lupus) would be simply an IgA or IgG def. just like my son. So I appreciate any info you can share. The problem with that theory is that my head pain is so very severe. You have really made me think with your last e-mail, though. Thank you-- Sandi--Mom to , age 9. Suspected IgA def., Tetrology of Fallot, chronic sinusitis, chronic ear infections, asthma, severe allergies, GERD. Ten surgeries, heart surgery pending. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2002 Report Share Posted July 18, 2002 from Dale, Mom to Katy, CVID, age 18 Sandi -- Katy's headaches were 24 x 7 every day all the time. Then on top of that one she had neurological ones (for want of a better name) and they were worsened by light, and sound, and movement very similar to a migraine -- those were probably 3 times a week for 3 or 4 hours at a time. Then she had some that I labeled " ice pick headaches " that would suddenly occur right in her temple and she would just melt in pain and grab her head. These occurred about once every 2 or 3 weeks but only lasted for 5 minutes. About 6 months into IVIG we reviewed her " complaint " list and realized that she had not had a single ice pick, the neurological ones were few and far between and the ongoing all the time one was actually having 3 or 4 times a week when it would totally be gone. By one year on IVIG she was only having the neurological one every 3 or 4 months, and that may or may not be migraine. But the daily headaches were gone. Also the muscle cramps were gone and the pain inside her bones (for want of a better description) was gone. It's definitely worth getting tested if you are having those symptoms. You need to check quantitative IgG with subclasses, IgA and IgM. Then you need to know your response to tetanus (protein coated bacteria) and pneumoccocal (sugar coated bacteria) to see if those immunoglobulins know what to do in the presence of germs! If you only have an IgA deficiency -- there's nothing that will help that except aggressive antibiotic treatment. But if any of the the above show up problematic, the recommended treatment is replacing the IgG. Hope that helps. In His service, Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2002 Report Share Posted July 23, 2002 Thanks, Dale. You are right, it is good timing before school. And I am glad that there is no waiting. He is a very good ent and I am praising God that it was found now. I know that part of it was that I did think there was infection there or blocked tubes. But once that problem was taken care of he should have been able to hear much better these last couple of weeks and he is not. Pretty much everything you say to Kody has to be repeated and usually more than once. I feel pretty guilty about the times I got mad at him for making me repeat myself, saying that he wasn't listening! Well, no more of that. I am now going to quit wallowing and face this thing. Tomorrow is the testing, at 2pm. I know you are praying. Thank you so much. Someday I'd give anything to give you a hug in person. Diane, Mom to Kody Quote Link to comment Share on other sites More sharing options...
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