| samsmama | -- 08-18-2003 @ 12:29 AM |
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My duaghter was diagnosed with an immune deficiency about 4 months ago. She was being sent to an allergist because of all of her sinus infections, he was the one who actually found this. (My husband is in the Army and we were sent to University of Kemtucky because her white blood count was 38,000 and was told nothing was wrong.) I thought this was no big deal until I began reading more about it. My daughter had been well for a couple of months but now has another sinus infection. I am concerned that something more should be done for her except a daily dose of a sulpher antibiotic to prevent infection. When her Dr. explained this to me he was very laid back like it was no big deal. The only treatment was the pneumonnia vaccine to help boost her immune system. ANY HELP ON THIS MATTER would truly help. I am looking for someone who knows more about this and can help direct me on what I need to do??? PLEASE HELP!!!
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| Beauregard | -- 08-26-2003 @ 3:00 PM |
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Hello I also have a daughter who is 7 years old and had the same thing happen to her. They do the vaccine to diagnose her not to help her. my Daughter has had her adnoides removed and had tubes put in her ears because she had puss built up. She had one sinus infection after that but over the summer she has done ok. She still gets the stuffy nose once and a while but nothing major. My daughter had that vaccine done and they didn't do the blood work done right so she was just diagnosted with Low IGG levels. I hope to have her retested in the fall. I hope i have helped out.
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| talulanj | -- 09-26-2003 @ 6:52 PM |
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HI, I HAVE A SON WHO IS 8, HE HAS BEEN SICK SINCE A BABY. AT THE AGE OF 5 THEY FINALLY DID A CAT SCAN ON HIS SINUS, THEY REALIZED THERE WAS A BLOCKAGE. ON TOP OF THIS IS ASTHMA. HE HAD A SINUS SURGERY W-ADNOIDECTOMY AT AGE 5 - TONSILS FOLLOWING YEAR. SINUS' DEVELOP BY THE AGE OF TWO. ANYWAY, MY SON ALSO JUST RECENTLY WAS DIAGNOSED W/LOW IGG1. THEY GAVE HIM THE PNEUMONNIA VACCINE BECAUSE IT PROTECTS AGAINST MANY DIFFERENT TYPES OF BACTERIA, THIS SHOT IS GOOD FOR YOUR DAUGHTER SHE MAY NOT GET SICK SO OFTEN. THIS VACCINE IS ALSO A TITER TEST. THEY DRAW BLOOD BEFORE THE INNOCULATION, THEN THEY GIVE THE SHOT, SIX WEEKS LATER THEY DRAW BLOOD AGAIN TO SEE IF IMMUUNE SYSTEM BUILT ANTIBODIES AGAINST THAT SHOT. I DONT KNOW WHAT TYPE OF IMMUNE DEFICIENCY YOUR DAUGHTER HAS, BUT IF IT IS IN THE IGG'S THEY ARE GOING TO NEED TO TEST TO SEE IF HER BABY SHOTS HAD TAKEN. BEST OF HEALTH TO YOU AND YOUR FAMILY - LISA
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| cheri | -- 11-27-2003 @ 8:26 AM |
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My son has the shot 3 times in his life time. He had it once as an infant. They have given it to him twice this year. His titers have gone from 0 out of 12 to 6out of 12. His titers are still not in the normal range. We still do not have a PI diagnosis.
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| Beauregard | -- 02-03-2004 @ 10:32 AM |
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My daughter did have the shot and it didn't do any good for her sinuses. she is still going through one sinus infection after another one. They want to do a cat scan on her sinus next and I feel it is a lost cause. they have not yet diognised her yet with immune dif. because her body responded to the shot but they messed up on the blood work so it wasn't that accurate for me. I want the doctor to re-do the bloodwork but he doesnt' want to put another needle into her. I'm ready to go to boston and find someone who will do something. I have to keep fighting and trying to do something.. thanks for the support...
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| jennypeekaboo | -- 06-14-2004 @ 3:27 AM |
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I'm a grown-up w/CVID. I had sinus infections and low IGg's but good response to the pneumoccal vaccine. One of the tests for PID is how well you respond to vaccines. The vaccine also helps if you do respond well b/c then you have antibodies to other things that might make you sick or turn into a sinus infection. However, even if you respond well to the vaccine (like I did & was told that it "wasn't a problem"), and have borderline IGg levels (as I do, they aren't that low), you can still have CVID or another ID that needs treatment w/IVIG IF you keep having infections you can't shake (that was me). So I'd ask "what kind of Immune deficiency" b/c some can and somem can't have IVIG as treatment. If it can and your daughter is still sick even on preventative antibiotics then look into IVIG. After a couple months of it I'm still not "well" but I feel better. It can take several months to build up. Just be careful to write down the lot # and manufacturer in case of recall, take the pain meds on the schedule the dr gives you (gets rid of pain assoc w/infusion). Also watch the speed b/c if it goes in too fast you feel really bad.
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| tenderheart | -- 10-13-2004 @ 2:21 PM |
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I am also an adult with CVID. My IGG is now up within normal limits with IGIV infusions. My IGM is low at 15. My problem for last 6 months, is I am unusually fatiqued. I used to have energy to spare. I have joint aches in most of my major joints with swelling and have several lumps or bumps under my skin that the Doctor says is fatty tumors and nothing is done for them. Also have recently had suggestion from my Internist that he thinks I have fibermyalgia and some polymyalgia. I used to be infused with Gamimune 30 gms. and now because of choice of my HMO am getting infused with Polygam 30 gms. I have headaches evening of infusion, and worse aches and pains two to three days after the infusions with feeling very very tired. Wonddering if anyone of you are having similiar symptoms with your CVID and side effects from your infusions. My rate has been lowered to 125 for 30 gms. and gets infused within 5 hrs. I get my infusions in our Clinics oncology dept. Usually at the end of my infusion they flush my remaining Polygam and saline at 360 to 600. Wondering if maybe that is too fast even though the nurses are saying that is only 20 to 30 ccs going in that fast. Would appreciate you alls feed back on this. I am getting to the point of not wanting to return for my infusions at all because of these side effects but hate to go back to repeated sinus infections and bronchitis.
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| anthony | -- 10-18-2004 @ 11:05 PM |
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I was diagnosed when i was 13 now im 36 I've been through it all. I have cvid im infused with 42gms of gamimune-n 10% every 2 weeks I've taken just about every drug they can think of for the side effects,but nothing seems to help the only thing that keeps me going back is knowing how bad i used to feel without the infusions .I still get sinusitis more than likely I'll have another surgery on them next month if my lungs can handle it.
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| ljackson | -- 12-11-2005 @ 3:06 PM |
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im a single parent and both my children have iga(now 8 and 5) , i take 1 day at a time , this helps us maybe it might help you ......no aerosols of any description (damp dust is a must),no pets,20 minutes walk 5 times a week, outdoor fun ie football,trampoling, cycling etc,limited teddies, laminate flooring all through the house, dust mite covers on beds and pillows, even the settee is guarded againts dust mites, healthy diet ie 5 a day friut and veg , garlic helps when eaten and blowwing bubbles or balloons up help their lungs as would a wind instument , the pnumonia jab, then yearly flu jabs ..... yes they still get poorley but after 8 years it seems 2 be getting a bit more livable with
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| KCsMom | -- 01-02-2006 @ 10:46 PM |
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My daughter also has chronic sinus infections and she has had her tonsils and adnoids out. She is on her 4th round of antibiotics since August. She was diagnosed with CVID in August. Atleast we know what we are dealing with now. Please get her to an Immunologist ASAP and get her B and T cells tested. My daughter is doing much better after she was diagnosed and they did re-immuniztions the pre-shot tests showed she was bottomed out for Diptheiria, Tetnaus & Pneumonia. she responde well to the immunizations. She is still getting sinus infectins and we have four Drs working with us her Pediatrician, her ENT Dr, and (2) Immunologists. She has x-rays and ct scans that show no blockage. The ENT also used a scope to look at her sinuses and hopfully after he cofers with the other Drs they will be able to come up with a game plan. I wish you both the very best and I hope I was helpful, I made myself a promise that after she was diagnosed I would do what I could to help others. It has been so caotic and nerve racking. However the hours I hve spent researching form this website have been very helpful. Print out some of the information and take it to her DR and the Immunologist. Take care and let me know how she does. PI Mom
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