Guest guest Posted October 17, 2004 Report Share Posted October 17, 2004 Well, it seems as though the steroids have helped in several areas. First of all, Asenath hasn't had any new narrowings in her brain. Since last year she has only had the four arteries affected. She also has had very little apnea and the docs think the steroids must have shrunk her adenoids and tonsils; thus now that the steroids are almost done, her apnea is returning. We plan to see some doc to address this issue after speaking to Dr. Whiteman in November. She hasn't had any large strokes since about February of this year and the docs and we feel the steroids probably are the cause. With the steroids shrinking inflammation in the brain, it probably has helped avoid both the vascular and the metabolic strokes. But then some doctors just wonder if it is coincidence. Guess if she declines in that area this winter we will get a good idea of whether the steroids prevented the strokes or not. Her arteries have still did the tightening and slightly opening some in the affected ones, but none of the four have ever opened totally and the docs don't think they will ever be normal again. We return to Mayo on November 14th (Sunday) and enter the hospital to do the MRI and MRA again on the 15th to have a baseline of what her brain looks like at the end of steroids. They want this so they can compare her brain to any images that are taken later should further strokes occur. We have no idea what to expect in the future after she is off the steroids. We hope she doesn't start to decline, but know it is a big possibility. The docs told us usually the disease is a stepping down process and usually the person dies from a aneurysm or a stroke from the disease. The steroids were sort of a " last-ditch-attempt " and the outcome was totally unknown as to what to expect. The docs have been shocked that at this point it seems to have helped, even if temporarily. The only other thing to try would be chemo drugs, which of course is very dangerous in our kids. Their immune systems already stink. I hope we never have to make that choice to use them or not! Asenath will be done with the Prednisolone on the 7th of November. It has been somewhat frustrating to see issues returning as we have lowered the levels. Her chronic diarrhea has returned in full force, she has been having a few small episodes the past few weeks, and her apnea is getting worse as well. I don't know what to expect. How is your son? I often wonder how he is dealing with this monster. Has he had any brain scans since I last spoke to you about it? How many narrow arteries does he have now? I recently found out that my sister had a narrow artery near her kidneys recently that was operated on at Mayo. She also seems to have some Mito symptoms. The adult Rheumotologist that treats Asenath for the vasculitis believe Mito is the total blame for the CNS vasculits. The sad thing there is Zipporrah seems SOOOOOO much like Asenath. It really scares me to think she might deal with this issue in the future too. Do the docs suggest any reason for your son becoming affected by the disease? Did he have any viruses before he declined? Chicken pox? Do they think Mito did caused it or any other ideas that they have suggested? Sorry so many questions but you, Ann, and Asenath are the only ones that deal with this rare issue that I know of. Way too rare! Ann's son, Sam, hadn't had any brain scans done last I knew to see if it is in Sam's brain though. She just knows it is in Sam's body. Usually the narrowings are found in the body, near the kidneys or other organs, NOT in the brain. I often wonder why our kids had to get them in such a difficult, unfixable location, but then I assume that when Mito causes inflammation to the brain, it probably for some reason or other clamped down permanently on our kids' arteries there. I would love to hear from you again. If you want to talk on the phone some, send your phone number to honeybear50317@... and I will call you. Hope your son is doing ok. Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (11 mon.) Mito, strokes, SID, GERD, 100% G-tube fed, asthma, trach issues, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) Re: Re: Kim- Frustrated with continual episodes (concerning Zipporrah) > Darla, > so sorry to hear that the girls are struggling. I wish I could do more > to > help. > I am curious if Aseneth's vasculitis has improved with the steroids. As > you > remember we have the CNS vasculitis as well and the docs here said no to > the > prednisone. they said that the prednisone would lower an already > struggling > immune system. > I wonder though if it would help... I worry so much about the > strokes..... > Keeping you in my thoughts and prayers. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2004 Report Share Posted October 23, 2004 Darla. the last MRA we had ( last december ) still showed three occluded arteries. The vasculitis has moved around a bit which they said is typical of this disorder. He has had several SLE's but with no major residuals. the docs decided with his immunedeficiency, mito, and diabetes the risk of steroids was to great. I agree. we are left with being very anxious about what may happen to him. heis seizures have gotten worse as has his behaviors. Now if you told me that aseneth did the steroids and it cleared the majority of the vasculitis then I may ask docs again about trying it but that doesnt seem to be the case. so for now we will wait and see. Happy birthday to zipporah....hope all are doing well there.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2004 Report Share Posted October 23, 2004 Darla, I menat to ask you what did Aseneths muscle biopsy show? just curious if we are similar there.. Quote Link to comment Share on other sites More sharing options...
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