Guest guest Posted August 14, 2004 Report Share Posted August 14, 2004 Hi Darla, Hope all is well--or stable at least. Gosh, you have such long Mayo trips----you are amazing..I don't know how you do it. One day trips exhaust me and send the boys into little crashes. Ask Krystena--- those would be my boys screaming and jumping off the furniture in the waiting areas. I am bummed...I think we will miss you. We check in at 4pm on the 17th for overnight IV fluids. The lumbar puncture schedule says 630am on the 18th for the first boy. So if all goes well I think we should be out of there by noon. It seems like we just miss you by a day or 2. What is going do be done for the girls at St. 's? I actually look forward to the overnight stay because it means I don't have to feed the boys during the night (we don't have G-T's so we wake every 2-3 hours to stick a sippy in their mouth). The docs have called the episodes dystonia and oculargyric crisis---- but I am wondering why in my kids the docs think that mito is not the cause----when other mito kids have these symptoms. Granted my boys are different than others, but it seems each mito child has a unique presentation. Glad to hear the girls don't have continuing problems with it, it is quite troubling to the boys. I am frustrated with everyone right now because the boys are having headaches and pain related to these episodes and I am told to use " distraction " to relieve their pain (we were told no motrin, tylenol, nothing). Distraction does not work for my headaches and certainly does not work for a 3 year old. Best wishes and prayers for a noneventul Mayo trip for you. Kris > We have had temporary symptoms of dystonia with Asenath about a year ago. Her toes would curl and her legs would get real tight and she would cry with the pain. For some reason this was only temporary following one of her strokes. We have also seen temporary dystonia/muscle tightness in Zipporrah following her two strokes. I don't really understand why theirs have been temporary rather than permanent, but we are very thankful. > I noticed that you will be at St. 's on the 17-18th. We will be going up on the 18th-24th. We will be staying at the RMH or a hotel on Wednesday evening, then a sleep study Thursday evening, back to the RMH or hotel from Friday to Sunday evening, and lastly going to St. 's Hospital from Sunday-Tuesday. Lots of moving around and complicated, but we think we have it all worked out. Asenath will stay home with daddy until Sunday and be taken care of by her oldest sister, who thankfully knows how to give all her meds, use the oxygen and apnea/pulse-ox monitors, and use the feeding pump. So it will be just my oldest son, Zipporrah, and I up at Mayo for the first several days. Then Asenath and my oldest daughter Leah will be with us and Luke will go home with his father for the last several days. It means a couple trips for my hubby as we want to use one car this time around, but better than the alternative of having to deal with Asenath during Zipporrah's sleep study. If you are going to be around late Wednesday evening or over the next few days, let me know if you would want to meet. That goes for anyone else going to Mayo from the 18-24th! > > Darla > Do any others have these neuro symptoms? > > > Hi all, > > I was wondering if any other kids have similar symptoms to mine > because there is now a question of what is their primary disorder. > > This is what we see and all occur at the same time: Eyes deviate to > the right and get stuck their briefly (this is very painful for them-- > they cry and tell us to get the " bees out " ), fingers began twisting > in odd positions and get stuck in these odd positions, up on toes > with toes curled under, somethimes they will stick their tongue out, > they either bob their head, cock it to the right, or shake it. > > These episodes usually occur around a stress (bowel movement, burp, > startle, sudden change in temp, excited about an activity). They > usually occur daily with increase in frequency after illness or > stress. > > Our last Mayo visit it seemed to be a group consensus amoung the docs > that our children might have a neurotransmitter disorder causing all > the mito symptoms. The boys are extremely responsive to thiamine and > COQ10, we have a partial complex 1 biopsy in one of the twins, and > one always has a high lactic acid; yet they say their neurological > symptoms are not seizures, but classic examples of a neurotransmitter > disturbance (especially the less affected one). > > We will be at St. 's on the 17 and 18 for LP's to rule this out. > > Thanks for any input, > > Kris > > > > > Please contact mito-owner owner > with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2004 Report Share Posted August 15, 2004 Usually my trips have been 1-2 day trips but the last few have been much longer. It does totally wear me out and I have to take long naps to stay together. Last time we had several days there that Asenath, Zipporrah, and I all slept 4-5 hours during the late afternoon or early evening and still were dragging. Hopefully this one will hold more energy for us. Asenath will be inpatient for a PH-probe and a scope to see what is causing the vomiting. Zipporrah has a sleep study and that is all for this trip. We had a horribly full schedule last time we were there so this is just some needed testsing that came as a result of the last trip. We hope it will all go well and get the needed information and that it won't be a wasted trip. You know how sleep studies go at times. Sometimes Zipporrah sleeps terrible and other times not so bad. Anyway, thanks for your compliments. I don't feel like supermom, just a worn out mom who does what she needs to do to keep her little ones healthy. Hope things are going well on your end and that the trip goes well with good results and ANSWERS. Darla > > We have had temporary symptoms of dystonia with Asenath about > a year ago. Her toes would curl and her legs would get real tight > and she would cry with the pain. For some reason this was only > temporary following one of her strokes. We have also seen temporary > dystonia/muscle tightness in Zipporrah following her two strokes. I > don't really understand why theirs have been temporary rather than > permanent, but we are very thankful. > > I noticed that you will be at St. 's on the 17-18th. We > will be going up on the 18th-24th. We will be staying at the RMH or > a hotel on Wednesday evening, then a sleep study Thursday evening, > back to the RMH or hotel from Friday to Sunday evening, and lastly > going to St. 's Hospital from Sunday-Tuesday. Lots of moving > around and complicated, but we think we have it all worked out. > Asenath will stay home with daddy until Sunday and be taken care of > by her oldest sister, who thankfully knows how to give all her meds, > use the oxygen and apnea/pulse-ox monitors, and use the feeding > pump. So it will be just my oldest son, Zipporrah, and I up at Mayo > for the first several days. Then Asenath and my oldest daughter Leah > will be with us and Luke will go home with his father for the last > several days. It means a couple trips for my hubby as we want to use > one car this time around, but better than the alternative of having > to deal with Asenath during Zipporrah's sleep study. If you are > going to be around late Wednesday evening or over the next few days, > let me know if you would want to meet. That goes for anyone else > going to Mayo from the 18-24th! > > > > Darla > > Do any others have these neuro symptoms? > > > > > > Hi all, > > > > I was wondering if any other kids have similar symptoms to mine > > because there is now a question of what is their primary disorder. > > > > This is what we see and all occur at the same time: Eyes deviate > to > > the right and get stuck their briefly (this is very painful for > them-- > > they cry and tell us to get the " bees out " ), fingers began > twisting > > in odd positions and get stuck in these odd positions, up on toes > > with toes curled under, somethimes they will stick their tongue > out, > > they either bob their head, cock it to the right, or shake it. > > > > These episodes usually occur around a stress (bowel movement, > burp, > > startle, sudden change in temp, excited about an activity). They > > usually occur daily with increase in frequency after illness or > > stress. > > > > Our last Mayo visit it seemed to be a group consensus amoung the > docs > > that our children might have a neurotransmitter disorder causing > all > > the mito symptoms. The boys are extremely responsive to thiamine > and > > COQ10, we have a partial complex 1 biopsy in one of the twins, > and > > one always has a high lactic acid; yet they say their > neurological > > symptoms are not seizures, but classic examples of a > neurotransmitter > > disturbance (especially the less affected one). > > > > We will be at St. 's on the 17 and 18 for LP's to rule this > out. > > > > Thanks for any input, > > > > Kris > > > > > > > > > > Please contact mito-owner owner > with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
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