Guest guest Posted February 3, 2005 Report Share Posted February 3, 2005 Darla, have they ever told you what type of vasculitis Aseneth has? we just went back to hte neurosurgeon for my sons vascultits and I forgot to ask him that question. All he says is it is in the arteries which we knew. And that it is continually moving around, he also said he is missing an artery in one part of the circle of willis, just one of his many quirks. He also emphasized to never ever let him get dehydrated as that is very bad for vasculitis, have you heard this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2005 Report Share Posted February 3, 2005 Darla, have they ever told you what type of vasculitis Aseneth has? we just went back to hte neurosurgeon for my sons vascultits and I forgot to ask him that question. All he says is it is in the arteries which we knew. And that it is continually moving around, he also said he is missing an artery in one part of the circle of willis, just one of his many quirks. He also emphasized to never ever let him get dehydrated as that is very bad for vasculitis, have you heard this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2005 Report Share Posted February 3, 2005 All I know is that they refer to it as a CNS Vasculitis but have never really figured out why it has happened. She only has narrow arteries in her brain, rather than throughout the body. I haven't heard how bad dehydration is for Vasculitis, but sadly from experience have learned it. That is one of the reasons Asenath's virus in December landed her in the hospital with a stroke from the flu. The docs wouldn't give her the IV she needed feeling she could handle it on her own so she ended up very dehydrated and of course from there she had the stroke that left her with eye damage and more left-sided issues. Any time Asenath gets slightly dehydrated she goes downhill. I assumed it was more the Mito that caused her problems when dehydrated, but guess it could be either. Don't you wish we could understand why our kids are dealing with the Vasculitis? It would really help to know more about it, but it is so rare the docs are confused about it. See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see a photo look into what Mito looks like Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting, bladder issues, wheelchair for distances, eye issues, autistic behaviors, gastric emptying issues... Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD, dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy, hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency, ... Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), & Marquis (3), Joey & (12 months) (some with Mito symptoms) Darla > > > Darla, have they ever told you what type of vasculitis Aseneth has? > we just went back to hte neurosurgeon for my sons vascultits and I > forgot to ask him that question. All he says is it is in the > arteries which we knew. And that it is continually moving around, he > also said he is missing an artery in one part of the circle of > willis, just one of his many quirks. > He also emphasized to never ever let him get dehydrated as that is > very bad for vasculitis, have you heard this? > > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2005 Report Share Posted February 3, 2005 All I know is that they refer to it as a CNS Vasculitis but have never really figured out why it has happened. She only has narrow arteries in her brain, rather than throughout the body. I haven't heard how bad dehydration is for Vasculitis, but sadly from experience have learned it. That is one of the reasons Asenath's virus in December landed her in the hospital with a stroke from the flu. The docs wouldn't give her the IV she needed feeling she could handle it on her own so she ended up very dehydrated and of course from there she had the stroke that left her with eye damage and more left-sided issues. Any time Asenath gets slightly dehydrated she goes downhill. I assumed it was more the Mito that caused her problems when dehydrated, but guess it could be either. Don't you wish we could understand why our kids are dealing with the Vasculitis? It would really help to know more about it, but it is so rare the docs are confused about it. See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see a photo look into what Mito looks like Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting, bladder issues, wheelchair for distances, eye issues, autistic behaviors, gastric emptying issues... Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD, dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy, hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency, ... Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), & Marquis (3), Joey & (12 months) (some with Mito symptoms) Darla > > > Darla, have they ever told you what type of vasculitis Aseneth has? > we just went back to hte neurosurgeon for my sons vascultits and I > forgot to ask him that question. All he says is it is in the > arteries which we knew. And that it is continually moving around, he > also said he is missing an artery in one part of the circle of > willis, just one of his many quirks. > He also emphasized to never ever let him get dehydrated as that is > very bad for vasculitis, have you heard this? > > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2005 Report Share Posted February 4, 2005 Darla, I thought it was CNS but wasnt sure. when I go back to see him on march 3 I will ask why he emphasized dehydration so strongly, he repeated over and over about not ever letting him get dehydrated. he is a remarkable neurosurgeon so I know he knows his stuff.. how are aseneths arteries? right now we are down to two occlusions but who knows what the next mra will show, it keeps changing with each MRA, new arteries all the time. always on the left side though.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2005 Report Share Posted February 4, 2005 Darla, I thought it was CNS but wasnt sure. when I go back to see him on march 3 I will ask why he emphasized dehydration so strongly, he repeated over and over about not ever letting him get dehydrated. he is a remarkable neurosurgeon so I know he knows his stuff.. how are aseneths arteries? right now we are down to two occlusions but who knows what the next mra will show, it keeps changing with each MRA, new arteries all the time. always on the left side though.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2005 Report Share Posted February 4, 2005 After a year and a half of steroid treatment we did have great news with the last MRI/MRA. All four are still narrow, but definitely much more open than before. She has three narrow on the right side of her brain and one narrow in her speech/cognitive area in the left side of her brain. We have always wondered how many of her stroke episodes were from Vasculitis and how many were from her metabolic Mitochondrial Disorder because there are definitely parts of her body that become affected that do not have narrow arteries (that are seen at least on MRA). Also, Zipporrah has the same exact stroke episodes as Asenath during and just following viruses even though we have never found any narrow arteries at this point. Besides the point that it seems to be pretty routine for Mito kids/adults to have regressions or strokes (which ever you choose to call them) during and just following viruses. It is a frustrating and confusing issue to think through. We know that dehydration is bad for Mito kids and it causes episodes. Sometimes I wonder if there is an issue with many or all of Mito kids during viruses where their arteries may temporarily clamp down during viruses, yet I know that even depriving the brain of energy and oxygen also cause the episodes. Guess I am rambling here, but the Vasculitis is such a confusing one with our docs. They just can't understand WHY it happened. One issue we are having is that each time we lower Asenath's steroids she begins having stroke episodes again. She had a small one last week and so the planned decrease of 0.2 ml. has been postponed for two weeks. We have always wondered if steroids would also help Zipporrah but the docs don't want to try it. She continues to have episodes and just currently is getting toward the end of pneumonia and double ear infections. With it came an episode of course. It is a bouncing ball effect in our home. Bad-getting better-bad-etc. Zipporrah's biggest issues seem to be more in the equilibrium-positional/balance areas, neuro-motor planning, and sensory dysfunction areas. After short periods of play she becomes very fatigued and way off balance. She had an OT evaluation on Wednesday that challenged her in different areas than she normally tries (although she LOVED the activities) and has been totally wiped out since then. She is way off balance and wobbly, running into things and falling tons. I am going to post some questions about this issue today. I would be interested in hearing anything your neuro-surgeon has to say and even receiving a call from him if he is interested in Asenath's case. See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see a photo look into what Mito looks like Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting, bladder issues, wheelchair for distances, eye issues, autistic behaviors, gastric emptying issues... Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD, dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy, hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency, ... Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), & Marquis (3), Joey & (12 months) (some with Mito symptoms) Re: Darla > > > > > Darla, > I thought it was CNS but wasnt sure. when I go back to see him on > march 3 I will ask why he emphasized dehydration so strongly, he > repeated over and over about not ever letting him get dehydrated. > he is a remarkable neurosurgeon so I know he knows his stuff.. > how are aseneths arteries? right now we are down to two occlusions > but who knows what the next mra will show, it keeps changing with > each MRA, new arteries all the time. > always on the left side though.. > > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2005 Report Share Posted February 4, 2005 After a year and a half of steroid treatment we did have great news with the last MRI/MRA. All four are still narrow, but definitely much more open than before. She has three narrow on the right side of her brain and one narrow in her speech/cognitive area in the left side of her brain. We have always wondered how many of her stroke episodes were from Vasculitis and how many were from her metabolic Mitochondrial Disorder because there are definitely parts of her body that become affected that do not have narrow arteries (that are seen at least on MRA). Also, Zipporrah has the same exact stroke episodes as Asenath during and just following viruses even though we have never found any narrow arteries at this point. Besides the point that it seems to be pretty routine for Mito kids/adults to have regressions or strokes (which ever you choose to call them) during and just following viruses. It is a frustrating and confusing issue to think through. We know that dehydration is bad for Mito kids and it causes episodes. Sometimes I wonder if there is an issue with many or all of Mito kids during viruses where their arteries may temporarily clamp down during viruses, yet I know that even depriving the brain of energy and oxygen also cause the episodes. Guess I am rambling here, but the Vasculitis is such a confusing one with our docs. They just can't understand WHY it happened. One issue we are having is that each time we lower Asenath's steroids she begins having stroke episodes again. She had a small one last week and so the planned decrease of 0.2 ml. has been postponed for two weeks. We have always wondered if steroids would also help Zipporrah but the docs don't want to try it. She continues to have episodes and just currently is getting toward the end of pneumonia and double ear infections. With it came an episode of course. It is a bouncing ball effect in our home. Bad-getting better-bad-etc. Zipporrah's biggest issues seem to be more in the equilibrium-positional/balance areas, neuro-motor planning, and sensory dysfunction areas. After short periods of play she becomes very fatigued and way off balance. She had an OT evaluation on Wednesday that challenged her in different areas than she normally tries (although she LOVED the activities) and has been totally wiped out since then. She is way off balance and wobbly, running into things and falling tons. I am going to post some questions about this issue today. I would be interested in hearing anything your neuro-surgeon has to say and even receiving a call from him if he is interested in Asenath's case. See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see a photo look into what Mito looks like Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting, bladder issues, wheelchair for distances, eye issues, autistic behaviors, gastric emptying issues... Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD, dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy, hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency, ... Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), & Marquis (3), Joey & (12 months) (some with Mito symptoms) Re: Darla > > > > > Darla, > I thought it was CNS but wasnt sure. when I go back to see him on > march 3 I will ask why he emphasized dehydration so strongly, he > repeated over and over about not ever letting him get dehydrated. > he is a remarkable neurosurgeon so I know he knows his stuff.. > how are aseneths arteries? right now we are down to two occlusions > but who knows what the next mra will show, it keeps changing with > each MRA, new arteries all the time. > always on the left side though.. > > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2005 Report Share Posted February 4, 2005 Dehydration leads to lower blood pressure. If there is already an issue with blood flow in the brain due to narrowing or inflammation in blood vessels you can see why lower pressure , less blood to bring oxygen and nutrients would not be good. > All I know is that they refer to it as a CNS Vasculitis but have never > really figured out why it has happened. She only has narrow arteries in her > brain, rather than throughout the body. I haven't heard how bad dehydration > is for Vasculitis, but sadly from experience have learned it. That is one > of the reasons Asenath's virus in December landed her in the hospital with a > stroke from the flu. The docs wouldn't give her the IV she needed feeling > she could handle it on her own so she ended up very dehydrated and of course > from there she had the stroke that left her with eye damage and more > left-sided issues. Any time Asenath gets slightly dehydrated she goes > downhill. I assumed it was more the Mito that caused her problems when > dehydrated, but guess it could be either. Don't you wish we could > understand why our kids are dealing with the Vasculitis? It would really > help to know more about it, but it is so rare the docs are confused about > it. > > See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see > a photo look into what Mito looks like > Darla: mommy to > Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G- tube, > hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting, > bladder issues, wheelchair for distances, eye issues, autistic behaviors, > gastric emptying issues... > Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD, > dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive > phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy, > hypertonicity, migraines, possible seizures, dumping syndrome, iron > deficiency, ... > Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), & > Marquis (3), Joey & (12 months) (some with Mito symptoms) > > > Darla > > > > > > > > Darla, have they ever told you what type of vasculitis Aseneth has? > > we just went back to hte neurosurgeon for my sons vascultits and I > > forgot to ask him that question. All he says is it is in the > > arteries which we knew. And that it is continually moving around, he > > also said he is missing an artery in one part of the circle of > > willis, just one of his many quirks. > > He also emphasized to never ever let him get dehydrated as that is > > very bad for vasculitis, have you heard this? > > > > > > > > > > > > > > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2005 Report Share Posted February 4, 2005 Dehydration leads to lower blood pressure. If there is already an issue with blood flow in the brain due to narrowing or inflammation in blood vessels you can see why lower pressure , less blood to bring oxygen and nutrients would not be good. > All I know is that they refer to it as a CNS Vasculitis but have never > really figured out why it has happened. She only has narrow arteries in her > brain, rather than throughout the body. I haven't heard how bad dehydration > is for Vasculitis, but sadly from experience have learned it. That is one > of the reasons Asenath's virus in December landed her in the hospital with a > stroke from the flu. The docs wouldn't give her the IV she needed feeling > she could handle it on her own so she ended up very dehydrated and of course > from there she had the stroke that left her with eye damage and more > left-sided issues. Any time Asenath gets slightly dehydrated she goes > downhill. I assumed it was more the Mito that caused her problems when > dehydrated, but guess it could be either. Don't you wish we could > understand why our kids are dealing with the Vasculitis? It would really > help to know more about it, but it is so rare the docs are confused about > it. > > See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see > a photo look into what Mito looks like > Darla: mommy to > Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G- tube, > hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting, > bladder issues, wheelchair for distances, eye issues, autistic behaviors, > gastric emptying issues... > Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD, > dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive > phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy, > hypertonicity, migraines, possible seizures, dumping syndrome, iron > deficiency, ... > Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), & > Marquis (3), Joey & (12 months) (some with Mito symptoms) > > > Darla > > > > > > > > Darla, have they ever told you what type of vasculitis Aseneth has? > > we just went back to hte neurosurgeon for my sons vascultits and I > > forgot to ask him that question. All he says is it is in the > > arteries which we knew. And that it is continually moving around, he > > also said he is missing an artery in one part of the circle of > > willis, just one of his many quirks. > > He also emphasized to never ever let him get dehydrated as that is > > very bad for vasculitis, have you heard this? > > > > > > > > > > > > > > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
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