Guest guest Posted January 20, 2006 Report Share Posted January 20, 2006 Ursula, I've wondered about the fluid issue. As a baby/toddler Hayden often had fluid problems, but went away at about age 3 or so. He was never bad enough to need tubes, but I wonder if fluid can permantely damage hearing. When he was 8 he started losing hearing rapidly, it's considered a " mixed " loss, part conductive and part sensorineural. His ear drums move freely, but obviously there is some kind of problem causing nerve damage, it's actually his sensory hair cells that are dying, but they have no idea why. They don't know what is causing the conductive part of the loss wither, no longer a fluid problem. I keep wondering about something autoimmune. We've consulted specialists all over the country and none of them can give him a diagnosis... sounds a lot like Conner and his immune disorder! We expect that Hayden will likely become deaf at some point and we've already consulted with a cochlear implant specialist and know that he's a candidate for that when it happens. I just wish we could figure out why it's happening and how to stop it before he goes deaf! Evan has also had some issues with hearing loss, but his was mostly conductive and has improved with time. I know several kids in the SCID group have hearing problems, I should ask around there to see if I can get any leads on auto-immune issues - I suspect most of those cases are medication related though. If you think of anything else, let me know. Thanks, Mom to Conner (11, Asperger's, mild CP, partial seizures, asthma, GERD, Hashimoto's disease, hypogammaglobulinemia, complement deficiency, antibody deficiency, NK cell defect, and resolved adrenal insufficiency), Hayden (11, PDD-NOS, IBS and moderate hearing loss/aided), Evan (11, asthma and mild hearing loss/unaided), and Kelsey - (9 going on 19!) Please visit us at www.caringbridge.org/in/connersmith Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2006 Report Share Posted January 21, 2006 I know several kids in the SCID group have hearing problems ... Thanks, , had problems since birth with fluid in his ears. The fluid was constantly there and caused hearing impairment. At 9 months old he had tubes put in to relieve the pressure this also improved his hearing. After having tubes for over two years (one fell out and one was removed one month prior to his 3rd birthday) he still has a large hole in his Right ear drum that hasn't healed. It has been patched twice, but the pressure keeps blowing it off. He received speech therapy until age 3, and was just reviewed for speech again. Our ENT told us that has small ear canals and fluid can get caught/build up easily (his hearing is similar to being underwater), so he doen't plan on patching the Right ear again until he is older. He did say that ' allergies and immune disorder contributes to the fluid in his ears. he never attributed the ear problems to antibiotics. Mom to , 3, CVID, asthma, eczema, chronic sinus infections, peanut allergy, environmental allergies , 4, healthy , 7, asthma, eczema, environ. allergies www.caringbridge.org/visit/thomasreising Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2006 Report Share Posted January 21, 2006 Most of the SCID kids and many CVID kids have been on Gentamycin at some point IV wise. The prolonged Gent exposure causes loss. Ursula - mom to Macey (10,CVID) and (13) http://members.cox.net/maceyh Immune Deficiency Foundation http://www.primaryimmune.org Pediatric PID email list Modell Foundation http://jmfworld.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 Thanks, Ursula. We swore by the butterfly sets until a few of the 6mm ones started fish hooking -- and my daughter refused to do SQ. I assumed you were still using the discs because I saw Macey's picture. Thanks for letting me know. I assume that you are using the 6mm butterfly without problems. If they are not , do you mind telling me what manufacturer distributes them? I feel like we have exhausted our resources. As for the Freedom pump, it did not work for us. I love the concept of the pump and perhaps you will have more luck with it. It seems like it would be easy to use -- and I have heard that it works for most people. The one we had did not have a mechanism to tell us whether or not it was administering the product. At one point, Dani sat there hooked up for an hour before the nurse realized that it was not pumping. We reset the crank (which is loud and scared my daughter) and still could not tell whether or not it was operating correctly. We had two nurses try the pump (two different ones) and failed. You are very experienced dealing with SQ/medical stuff and will probably have more success. mom to CVIDer Quote Link to comment Share on other sites More sharing options...
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