Guest guest Posted March 29, 2005 Report Share Posted March 29, 2005 Hello Roomies, Since this is Ellie's third bout with croup (2/04, 12/04 (in hospital for 4 days) and now), and it seems that steroids (prednisone) is the only thing that clears her airway, I am starting to wonder how they really affect mito kids in long run. Does anyone have any experience with this? I have asked her ped to request an airway test from an ENT - we are scheduled for May 4th. I know Leigh's ultimately affects the respiratory system...how do I know if we are heading down that road? What should I expect? What questions do I need to ask? Did you get all that (ha, ha!)!?! I am just confused and scared of what the future holds for Ellie and want to be as prepared as we can be for both medical and emotional reasons. Any insight would be greatly appreciated. As a side note, Ellie tested positive for strep throat twice in the last six weeks and was on antibiotics for both... Thanks in advance for your help...hugs to everyone. KK Mommy to Ellie, 3.5, C-IV and Leigh's and my angel www.caringbridge.com/oh/ellie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2005 Report Share Posted March 29, 2005 We have been told that steroids can really run havoc in a Mito person and should only be used when absolutely needed when used for a prolonged period or frequently. BUT...in Asenath's case, we have found that they seem to be helping immensely for not only her narrow arteries, but also to control her SLE's. While on steroids, she rarely has any significant stroke activity. We still see tiny changes but nothing large. When we took her off the steroids she fell apart! So, they placed her back on them again and we are slowly decreasing the dosage again. Noone wants her on them much longer as they can damage organs if kept on them for a long time. She has been on them for over 1 1/2 years now. Too long, and yet, they seem to help her soooooo much! I would recommend really talking to your metabolic docs about steroid use to see their stance. If she really needs them then use them, but at least know the possible side effects and negatives that come with them. If she is only taking them in spurts, she should be fine, but when taken routinely, they cause many issues including major swelling/weight gain, unwanted hair growth, easy bruising, lower immune system, organ damage potentials... As far as the Leigh's issues, we do not deal with it and can't help you to know if her condition is getting worse. I would definitely pursue the testing you have planned and stay on top of her airway issues and try to see if she needs more help than just steroids. I hope you are able to get her better help. See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org (a photo look into Mito) Darla: mommy to Asenath (5) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomia, SID, global delays, cyclic vomiting, bladder issues, some wheelchair use, eye issues, gastric emptying issues... Zipporrah (17 months) Mito, strokes, neuro-motor planning, SID, GERD, dysphasia, G-tube fed, speech delays, extreme fatigue, aberrant subclavian artery, disautonomia, hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (17)migraines, sensory issues, & some evidence of SLE's... Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4), Marquis (3) Joey (15 months) with hydrocephalus, dysgenesis of the corpus callosum, encephalomalacia & leukomalacia, G-tube, GERD, immobile, severe dev. delays, left hemiplegia (arm)... (15 months) SID, dev. delays, right hemiparesis issues... Steroids Hello Roomies, Since this is Ellie's third bout with croup (2/04, 12/04 (in hospital for 4 days) and now), and it seems that steroids (prednisone) is the only thing that clears her airway, I am starting to wonder how they really affect mito kids in long run. Does anyone have any experience with this? I have asked her ped to request an airway test from an ENT - we are scheduled for May 4th. I know Leigh's ultimately affects the respiratory system...how do I know if we are heading down that road? What should I expect? What questions do I need to ask? Did you get all that (ha, ha!)!?! I am just confused and scared of what the future holds for Ellie and want to be as prepared as we can be for both medical and emotional reasons. Any insight would be greatly appreciated. As a side note, Ellie tested positive for strep throat twice in the last six weeks and was on antibiotics for both... Thanks in advance for your help...hugs to everyone. KK Mommy to Ellie, 3.5, C-IV and Leigh's and my angel www.caringbridge.com/oh/ellie Quote Link to comment Share on other sites More sharing options...
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