Guest guest Posted October 3, 2004 Report Share Posted October 3, 2004 I had a feeling this was on its way. its still not official but theres alot making me think B's on his way to another crash. His pre op appointment (muscle biopsy is on tuesday) was last Wedensday, and he had been doing SO well till then... gained 5 lbs in a month, sleeping only 13-14 hours a day, so active, and happy. Then on Thursday his eating slowed down BIG TIME (were talking a small bowl of cereal and a few macaroni noodles all day). Since then his naps have slowly increased, his sleeping at night is longer, hes now up to 16-17 hours of sleep a day. His tremors are back REALLY BAD, another thing that had been gone for a while. except now he gets them when hes up and about instead of just first thing in the morning. Overall hes still in good shape, hes not falling yet, and no fever so far... He had Chicken Pox 3 weeks ago and just finished them up a week and a half ago.... My worry is that by tuesday we could be in really bad shape... will they still do the surgery? will there be more risks? should i be worried about this??? If we try to schedule surgery for a time hes either not sick, or not having a crash, i will never happen... (especially since theres generally a 3-6 week wait for appointments each time). gah. Keely (Mom to , 21 months, suspected mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2004 Report Share Posted October 3, 2004 Chicken pox can really wreck havoc with Mito kids. After my Asenath had them she fell apart. She began having major migraines, stopped eating, and her metabolics fell apart and led to a major stroke. I am not trying to scare you by any means but want you to make sure and keep an eye on him. Asenath became very low in her Carnitine and she had metabolic acidosis problems among other issues from that point on. Of course, we did not know what her problem was so we couldn't stop the decline. I just wanted to make sure you knew that the chicken pox can be pretty nasty sometimes to a Mito kid. As far as the biopsies go, it is really an individual choice on your and the docs behalf as to whether it would be a good time or better to wait. Hold off on canceling it until that morning or the day before as he may start improving before then and then you would regret it. However, if he seems to really be struggling and you are concerned he is in a downward spiral, it may be best to wait. The results can help, but many times inconclusive and so not always a necessity to rush into. We had the same choice when we did Asenath's biopsies and G-tube placement. She had been sick all spring and didn't seem to have a break. We went ahead with the operation because we knew she needed the G-tube placed and didn't know when she would be healthier. It all went smoothly and we didn't regret the choice. Hope he starts to improve for you and makes the choice an easy one. Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, chronic vomiting... Zipporrah (11 mon.) Mito, strokes, SID, GERD, 100% G-tube fed, asthma, trach issues, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) Surgery during a crash?? > > > I had a feeling this was on its way. its still not official but > theres alot making me think B's on his way to another crash. > His pre op appointment (muscle biopsy is on tuesday) was last > Wedensday, and he had been doing SO well till then... gained 5 lbs > in a month, sleeping only 13-14 hours a day, so active, and happy. > Then on Thursday his eating slowed down BIG TIME (were talking a > small bowl of cereal and a few macaroni noodles all day). Since > then his naps have slowly increased, his sleeping at night is > longer, hes now up to 16-17 hours of sleep a day. His tremors are > back REALLY BAD, another thing that had been gone for a while. > except now he gets them when hes up and about instead of just first > thing in the morning. > Overall hes still in good shape, hes not falling yet, and no fever > so far... > He had Chicken Pox 3 weeks ago and just finished them up a week and > a half ago.... > My worry is that by tuesday we could be in really bad shape... will > they still do the surgery? will there be more risks? should i be > worried about this??? > If we try to schedule surgery for a time hes either not sick, or not > having a crash, i will never happen... (especially since theres > generally a 3-6 week wait for appointments each time). > gah. > > Keely (Mom to , 21 months, suspected mito) > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2004 Report Share Posted October 4, 2004 Dont forget too, he may be going through a growth spurt. I know growthspurts take a toll on my kids. Its hard to remember the " normal " kid growth stuff in our kids because they're nothing close to normal when it comes to health. I do remember though my kids eating less and sleeping more, complaining of joints hurting. Zach will usually stop eating also when hes getting a cold and tis that time of year. I hope he perks up and the biopsy goes alright. Be prepared to wait 3 months for a result. > > I had a feeling this was on its way. its still not official but > theres alot making me think B's on his way to another crash. > His pre op appointment (muscle biopsy is on tuesday) was last > Wedensday, and he had been doing SO well till then... gained 5 lbs > in a month, sleeping only 13-14 hours a day, so active, and happy. > Then on Thursday his eating slowed down BIG TIME (were talking a > small bowl of cereal and a few macaroni noodles all day). Since > then his naps have slowly increased, his sleeping at night is > longer, hes now up to 16-17 hours of sleep a day. His tremors are > back REALLY BAD, another thing that had been gone for a while. > except now he gets them when hes up and about instead of just first > thing in the morning. > Overall hes still in good shape, hes not falling yet, and no fever > so far... > He had Chicken Pox 3 weeks ago and just finished them up a week and > a half ago.... > My worry is that by tuesday we could be in really bad shape... will > they still do the surgery? will there be more risks? should i be > worried about this??? > If we try to schedule surgery for a time hes either not sick, or not > having a crash, i will never happen... (especially since theres > generally a 3-6 week wait for appointments each time). > gah. > > Keely (Mom to , 21 months, suspected mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2004 Report Share Posted October 4, 2004 My worry is that the doctor seems unwilling to start any sort of treatment until the biopsy is done... weve basically been told to 'wait and see' until then, so if we reschedule it, were then in a wait mode before anything is done to help him... hes still a little iffy today, but we meet with the anasthesiologist this afternoon so i will talk with her about my concerns. He actually did just finish a growth spurt (5 lbs in 4 weeks!) so that could account for it as well! > > > > I had a feeling this was on its way. its still not official but > > theres alot making me think B's on his way to another crash. > > His pre op appointment (muscle biopsy is on tuesday) was last > > Wedensday, and he had been doing SO well till then... gained 5 lbs > > in a month, sleeping only 13-14 hours a day, so active, and > happy. > > Then on Thursday his eating slowed down BIG TIME (were talking a > > small bowl of cereal and a few macaroni noodles all day). Since > > then his naps have slowly increased, his sleeping at night is > > longer, hes now up to 16-17 hours of sleep a day. His tremors are > > back REALLY BAD, another thing that had been gone for a while. > > except now he gets them when hes up and about instead of just > first > > thing in the morning. > > Overall hes still in good shape, hes not falling yet, and no fever > > so far... > > He had Chicken Pox 3 weeks ago and just finished them up a week > and > > a half ago.... > > My worry is that by tuesday we could be in really bad shape... > will > > they still do the surgery? will there be more risks? should i be > > worried about this??? > > If we try to schedule surgery for a time hes either not sick, or > not > > having a crash, i will never happen... (especially since theres > > generally a 3-6 week wait for appointments each time). > > gah. > > > > Keely (Mom to , 21 months, suspected mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2004 Report Share Posted October 4, 2004 You may want to seek out a different doctor if the approach is " wait and see. " If I would have continued to listen and abide to that theory which our doctors took with our Asenath in 2002, she would have died! No doubt about it! Dr. Whiteman told us to our face that Asenath was close to having a cardiac arrest when we first met him and she barely made it through that winter and spring of 2003 with his help. I am so glad we did NOT listen to that advice! 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: Surgery during a crash?? > > > My worry is that the doctor seems unwilling to start any sort of > treatment until the biopsy is done... weve basically been told > to 'wait and see' until then, so if we reschedule it, were then in a > wait mode before anything is done to help him... > hes still a little iffy today, but we meet with the anasthesiologist > this afternoon so i will talk with her about my concerns. > He actually did just finish a growth spurt (5 lbs in 4 weeks!) so > that could account for it as well! > > > > > > > > > > I had a feeling this was on its way. its still not official but > > > theres alot making me think B's on his way to another crash. > > > His pre op appointment (muscle biopsy is on tuesday) was last > > > Wedensday, and he had been doing SO well till then... gained 5 > lbs > > > in a month, sleeping only 13-14 hours a day, so active, and > > happy. > > > Then on Thursday his eating slowed down BIG TIME (were talking a > > > small bowl of cereal and a few macaroni noodles all day). Since > > > then his naps have slowly increased, his sleeping at night is > > > longer, hes now up to 16-17 hours of sleep a day. His tremors > are > > > back REALLY BAD, another thing that had been gone for a while. > > > except now he gets them when hes up and about instead of just > > first > > > thing in the morning. > > > Overall hes still in good shape, hes not falling yet, and no > fever > > > so far... > > > He had Chicken Pox 3 weeks ago and just finished them up a week > > and > > > a half ago.... > > > My worry is that by tuesday we could be in really bad shape... > > will > > > they still do the surgery? will there be more risks? should i > be > > > worried about this??? > > > If we try to schedule surgery for a time hes either not sick, or > > not > > > having a crash, i will never happen... (especially since theres > > > generally a 3-6 week wait for appointments each time). > > > gah. > > > > > > Keely (Mom to , 21 months, suspected mito) > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2004 Report Share Posted October 4, 2004 Im certain once the biopsy confirms it, there wont be a need to wait and see anymore... I have total faith in our doctor as I have heard nothing but great things about her from all the other docs I have talked to, and she has gotten the testing to happen alot faster than it normally does up here... However if things are not progressing fast enough I wouldnt hesitate to seek another opinion... although that is very difficult here because there is only one doc in my area that deals with mito patients, however our next option would be to travel to Toronto, and I know that it is always an option if i feel things arent going well... Im so glad you didnt take that advice either!! Keely > > > > > > > > I had a feeling this was on its way. its still not official but > > > > theres alot making me think B's on his way to another crash. > > > > His pre op appointment (muscle biopsy is on tuesday) was last > > > > Wedensday, and he had been doing SO well till then... gained 5 > > lbs > > > > in a month, sleeping only 13-14 hours a day, so active, and > > > happy. > > > > Then on Thursday his eating slowed down BIG TIME (were talking a > > > > small bowl of cereal and a few macaroni noodles all day). Since > > > > then his naps have slowly increased, his sleeping at night is > > > > longer, hes now up to 16-17 hours of sleep a day. His tremors > > are > > > > back REALLY BAD, another thing that had been gone for a while. > > > > except now he gets them when hes up and about instead of just > > > first > > > > thing in the morning. > > > > Overall hes still in good shape, hes not falling yet, and no > > fever > > > > so far... > > > > He had Chicken Pox 3 weeks ago and just finished them up a week > > > and > > > > a half ago.... > > > > My worry is that by tuesday we could be in really bad shape... > > > will > > > > they still do the surgery? will there be more risks? should i > > be > > > > worried about this??? > > > > If we try to schedule surgery for a time hes either not sick, or > > > not > > > > having a crash, i will never happen... (especially since theres > > > > generally a 3-6 week wait for appointments each time). > > > > gah. > > > > > > > > Keely (Mom to , 21 months, suspected mito) > > > > > > > > > > > > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 DARLA, I SAW YOUR LETTER ON MITO. MY HEART GOES OUT TO YOU.GENTICS IN WISCONSIN GAVE ME SOME THINGS TO DO FOR MY CHILDREN .WE HAVE A POSSIBLE DIGNOSISI OF MITOCHONDRIAL MYAPHY.E-MAIL MEDarla Klein wrote: You may want to seek out a different doctor if the approach is "wait and see." If I would have continued to listen and abide to that theory which our doctors took with our Asenath in 2002, she would have died! No doubt about it! Dr. Whiteman told us to our face that Asenath was close to having a cardiac arrest when we first met him and she barely made it through that winter and spring of 2003 with his help. I am so glad we did NOT listen to that advice!Darla: mommy toAsenath (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: Surgery during a crash??>>> My worry is that the doctor seems unwilling to start any sort of> treatment until the biopsy is done... weve basically been told> to 'wait and see' until then, so if we reschedule it, were then in a> wait mode before anything is done to help him...> hes still a little iffy today, but we meet with the anasthesiologist> this afternoon so i will talk with her about my concerns.> He actually did just finish a growth spurt (5 lbs in 4 weeks!) so> that could account for it as well!>>>> > > >> > > I had a feeling this was on its way. its still not official but> > > theres alot making me think B's on his way to another crash.> > > His pre op appointment (muscle biopsy is on tuesday) was last> > > Wedensday, and he had been doing SO well till then... gained 5> lbs> > > in a month, sleeping only 13-14 hours a day, so active, and> > happy.> > > Then on Thursday his eating slowed down BIG TIME (were talking a> > > small bowl of cereal and a few macaroni noodles all day). Since> > > then his naps have slowly increased, his sleeping at night is> > > longer, hes now up to 16-17 hours of sleep a day. His tremors> are> > > back REALLY BAD, another thing that had been gone for a while.> > > except now he gets them when hes up and about instead of just> > first> > > thing in the morning.> > > Overall hes still in good shape, hes not falling yet, and no> fever> > > so far...> > > He had Chicken Pox 3 weeks ago and just finished them up a week> > and> > > a half ago....> > > My worry is that by tuesday we could be in really bad shape...> > will> > > they still do the surgery? will there be more risks? should i> be> > > worried about this???> > > If we try to schedule surgery for a time hes either not sick, or> > not> > > having a crash, i will never happen... (especially since theres> > > generally a 3-6 week wait for appointments each time).> > > gah.> > >> > > Keely (Mom to , 21 months, suspected mito)>>>>>>> Please contact mito-owner with any problems or questions.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2004 Report Share Posted October 23, 2004 Darla, here. I am soory I havent responded sooner,but the last 2 weeks both of my children have been sick.The last two months have been crazy with appointments and now gentics wants me to be a phamaces to make vitamens into a elixor for the kids .I f I get the names would you or any of the famlies might know were i could get a liquid?write back soon.elizabeth hopkins wrote: DARLA, I SAW YOUR LETTER ON MITO. MY HEART GOES OUT TO YOU.GENTICS IN WISCONSIN GAVE ME SOME THINGS TO DO FOR MY CHILDREN .WE HAVE A POSSIBLE DIGNOSISI OF MITOCHONDRIAL MYAPHY.E-MAIL MEDarla Klein wrote: You may want to seek out a different doctor if the approach is "wait and see." If I would have continued to listen and abide to that theory which our doctors took with our Asenath in 2002, she would have died! No doubt about it! Dr. Whiteman told us to our face that Asenath was close to having a cardiac arrest when we first met him and she barely made it through that winter and spring of 2003 with his help. I am so glad we did NOT listen to that advice!Darla: mommy toAsenath (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: Surgery during a crash??>>> My worry is that the doctor seems unwilling to start any sort of> treatment until the biopsy is done... weve basically been told> to 'wait and see' until then, so if we reschedule it, were then in a> wait mode before anything is done to help him...> hes still a little iffy today, but we meet with the anasthesiologist> this afternoon so i will talk with her about my concerns.> He actually did just finish a growth spurt (5 lbs in 4 weeks!) so> that could account for it as well!>>>> > > >> > > I had a feeling this was on its way. its still not official but> > > theres alot making me think B's on his way to another crash.> > > His pre op appointment (muscle biopsy is on tuesday) was last> > > Wedensday, and he had been doing SO well till then... gained 5> lbs> > > in a month, sleeping only 13-14 hours a day, so active, and> > happy.> > > Then on Thursday his eating slowed down BIG TIME (were talking a> > > small bowl of cereal and a few macaroni noodles all day). Since> > > then his naps have slowly increased, his sleeping at night is> > > longer, hes now up to 16-17 hours of sleep a day. His tremors> are> > > back REALLY BAD, another thing that had been gone for a while.> > > except now he gets them when hes up and about instead of just> > first> > > thing in the morning.> > > Overall hes still in good shape, hes not falling yet, and no> fever> > > so far...> > > He had Chicken Pox 3 weeks ago and just finished them up a week> > and> > > a half ago....> > > My worry is that by tuesday we could be in really bad shape...> > will> > > they still do the surgery? will there be more risks? should i> be> > > worried about this???> > > If we try to schedule surgery for a time hes either not sick, or> > not> > > having a crash, i will never happen... (especially since theres> > > generally a 3-6 week wait for appointments each time).> > > gah.> > >> > > Keely (Mom to , 21 months, suspected mito)>>>>>>> Please contact mito-owner with any problems or questions.> Quote Link to comment Share on other sites More sharing options...
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