Guest guest Posted October 7, 2004 Report Share Posted October 7, 2004 I was talking with our OT replacement which happens to be your girls' therapist and she was talking about having another Mito family in her case load. After she said you were going to Mayo it clicked in my brain that you were going to do the brain scans! How did they go? Sorry I haven't called you but it has been pretty busy over here lately since Zipporrah wasn't feeling well. Hope all went well. Let me know. You can call me if you would rather do so. :)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) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 Hi Kim: We recently met with the doctor responsible for VNS at Sick Kids Hospital in Toronto. We had been referred to her about 6 months ago but since then, Kirk's respiratory issues have progressed to the point where I wouldn't risk a surgical procedure and neither would a anestheologist. Another main consideration was the fact that he isn't able to handle his secretions. Apparently, when the stimulator sends impulses, the patient feels it and needs to know enough to stop swallowing for a moment until the impulse is sent otherwise there's a risk of aspiration. Pneumonia is a problem for Kirkland already and he's just too sick to add more fuel to the fire. re: Keto diet Kirkland was on it for almost a year. He was followed by lin Curtis keto specialist at Sick Kids hospital, Toronto. He was her first ever mito patient on the diet. She is now retired. Kirk was also our mito doc's first patient on the keto diet as well, so this was quite experimental. He never would have been accepted if Dr. Curtis had known at the time of referral that he had mito disease but we didn't have the biopsy results yet. When he started the diet he was still on oral feeds so we added MCT oil instead of other fats. Before long, he started aspirating the fats and having pneumonias. Within a few months of starting the diet, Kirk needed a GJ Tube and other issues started to occur with his bloodwork. ie) inconsistent calcium, iron, phosphate, etc. levels. He was at one point admitted with hypercalcemia which was lethal and we couldn't find the cause. In the meantime, because he was so sick, his seizure activity was worsening. We couldn't assess the diet anyway because he was always so unwell. The keto doc was very nervous about him being on the diet even though I'd pooled through this group and found other kids on the diet. I was reluctant to give it up but didn't feel I had her faith in it so I wanted to return to our own neurologist, Conrad Yim. We needed to start investigating new AED's so we left the diet. There were no differences in his seizure control when he came off the diet. It's hard to assess the diet at this point. He was very sick throughout it. Did the diet bring on these illnesses and setbacks or would they have happened anyway? I'm sure they would have happened anyway but would I say that it sped up the progression of the disease? Probably. I don't know that he would have required the feeding tube and started the pneumonias when he did if we hadn't been playing around. We very well may have shortened his lifespan. Would I try it again? Yes. If not, I'd always be wondering what if???? Good Luck in your pursuit of these options. Hope I was of some help. Take care, and Kirkland Kim Novy wrote: Hi ! I noticed on a post that you said you inquired about the vagus nerve stimulator for Kirkland and he did not qualify. Could I ask why? Plus, how did the keto diet work? Those are both things we are considering for the twins. Thanks! Kim - Mom to and Lindsey Please contact mito-owner with any problems or questions. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 Thanks for all of the information, ! We meet with our neuro on Wednesday so I plan to pick his brain about many things. Kim Re: Kim Novy Hi Kim: We recently met with the doctor responsible for VNS at Sick Kids Hospital in Toronto. We had been referred to her about 6 months ago but since then, Kirk's respiratory issues have progressed to the point where I wouldn't risk a surgical procedure and neither would a anestheologist. Another main consideration was the fact that he isn't able to handle his secretions. Apparently, when the stimulator sends impulses, the patient feels it and needs to know enough to stop swallowing for a moment until the impulse is sent otherwise there's a risk of aspiration. Pneumonia is a problem for Kirkland already and he's just too sick to add more fuel to the fire. re: Keto diet Kirkland was on it for almost a year. He was followed by lin Curtis keto specialist at Sick Kids hospital, Toronto. He was her first ever mito patient on the diet. She is now retired. Kirk was also our mito doc's first patient on the keto diet as well, so this was quite experimental. He never would have been accepted if Dr. Curtis had known at the time of referral that he had mito disease but we didn't have the biopsy results yet. When he started the diet he was still on oral feeds so we added MCT oil instead of other fats. Before long, he started aspirating the fats and having pneumonias. Within a few months of starting the diet, Kirk needed a GJ Tube and other issues started to occur with his bloodwork. ie) inconsistent calcium, iron, phosphate, etc. levels. He was at one point admitted with hypercalcemia which was lethal and we couldn't find the cause. In the meantime, because he was so sick, his seizure activity was worsening. We couldn't assess the diet anyway because he was always so unwell. The keto doc was very nervous about him being on the diet even though I'd pooled through this group and found other kids on the diet. I was reluctant to give it up but didn't feel I had her faith in it so I wanted to return to our own neurologist, Conrad Yim. We needed to start investigating new AED's so we left the diet. There were no differences in his seizure control when he came off the diet. It's hard to assess the diet at this point. He was very sick throughout it. Did the diet bring on these illnesses and setbacks or would they have happened anyway? I'm sure they would have happened anyway but would I say that it sped up the progression of the disease? Probably. I don't know that he would have required the feeding tube and started the pneumonias when he did if we hadn't been playing around. We very well may have shortened his lifespan. Would I try it again? Yes. If not, I'd always be wondering what if???? Good Luck in your pursuit of these options. Hope I was of some help. Take care, and Kirkland Kim Novy wrote: Hi ! I noticed on a post that you said you inquired about the vagus nerve stimulator for Kirkland and he did not qualify. Could I ask why? Plus, how did the keto diet work? Those are both things we are considering for the twins. Thanks! Kim - Mom to and Lindsey Please contact mito-owner with any problems or questions. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2005 Report Share Posted March 16, 2005 He has been having quite a few seizures since December. We can not seem to get them under control. This past week he is having 3-4 a day. Within the last 12 hours he has had 7. If this was his baseline it would be ok but it is not. I'm use to one seizure every six months. We go in tomorrow to the neuro for another eval and to figure out what we are going to do next. Hope all is well with you guys. Geri-Anne > Hey Geri-Anne! and Lindsey were on Zonegran for about 2 years. We just recently took them off it last month. I honestly don't think it did anything for the girls. We had it combined with Keppra. I didn't notice any bad side-effects with it though. Is Wyatt having seizures more frequently? What types of seizures are you seeing? > > Kim - Mom to and Lindsey > zonisamide (spelling) or zonnegram > > > > Anyone one on either of these seizure meds and if so what has been > your experience? We are on lamictal and keppra right now with no > success. We may add zonisamide tomorrow. I do know that it can cause > acidiosis but we are left with very little to try. Any suggestions, > comments would be greatly appreciated. > > Thanks > > Geri-Anne and Wyatt, complex I > caringbridge.org/mn/wyattc > > > > > > Please contact mito-owner with any problems or questions. > > > Quote Link to comment Share on other sites More sharing options...
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