Guest guest Posted February 22, 2005 Report Share Posted February 22, 2005 Hi all, My daughter is almost 8 months old and I just found out today that she has Complex I. It was something I didn't want to hear but she has been having intractable seizures and we couldn't figure out why. I am just learning about all of this and it is a lot to understand and take in. I'm wondering if anyone can tell me about or direct me to any (easy to understand) information about this disorder. I was told to start her on Coenzyme Q10 and was wondering about any results you all have had with it. I just need to connect with people that are in the same shoes as I. Thanks, Jessy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2005 Report Share Posted February 23, 2005 Welcome to the group. A good place to start is the UMDF website. However I remember looking at it for the first time thinking where do I begin. So the easiest thing I found to do was read the postings here and then post my questions. Someone here will be able to answer. Geri-Anne and Wyatt, Complex I p.s. I've been told the sooner you start the mito cocktail the more success you are likely to have.- -- In Mito , " ******* " <brandyand7@y...> wrote: > > > Hi all, > My daughter is almost 8 months old and I just found out today that > she has Complex I. It was something I didn't want to hear but she > has been having intractable seizures and we couldn't figure out why. > I am just learning about all of this and it is a lot to understand > and take in. I'm wondering if anyone can tell me about or direct me > to any (easy to understand) information about this disorder. I was > told to start her on Coenzyme Q10 and was wondering about any results > you all have had with it. I just need to connect with people that > are in the same shoes as I. > > Thanks, > Jessy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2005 Report Share Posted February 23, 2005 The United Mitochondrial Disease website (www.umdf.org) is an excellent resource. CoQ 10 helped my son, as did several other supplements and a medicine called L-Carnitine. What you really need is a good doctor to guide you. The UMDF can help with that. And keep coming here. There are so many of us who know what you are going through and want to help. Hang in there. Donna mom to Craig (age 8 with unspecified mito) and Dalton (possible mito, but doing well so far) New with some questions Hi all,My daughter is almost 8 months old and I just found out today that she has Complex I. It was something I didn't want to hear but she has been having intractable seizures and we couldn't figure out why. I am just learning about all of this and it is a lot to understand and take in. I'm wondering if anyone can tell me about or direct me to any (easy to understand) information about this disorder. I was told to start her on Coenzyme Q10 and was wondering about any results you all have had with it. I just need to connect with people that are in the same shoes as I.Thanks,JessyPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2005 Report Share Posted February 24, 2005 Hi Jessy, My name is Ange and my daughter has Complex I-III what I can offer to you as some advice is find a good nuerologist one with Mitochondrial background if possible. What I have experienced is that the seizures control alot of functions of the body so if you can control them then most everything else will follow. has three different types of seizures, which in turn causes her stomach to be delayed in processing food and emptying. Her coordination is off and so is her speech. With the supplements I have found because is active already it made her more active. We are on 8 different medications and and feeding tube we have been dealing with this disorder since she was 18 months old and now she is 5 1/2 and going to play t-ball in the spring. Trying to take it all in at once is too much take each day and illness as it comes I have also learned to treat the symptoms not the disorder and it will help each day last longer. It might not be everyones way but it works for us as has a 8 year old sister who needs a normal life too. Ange -------------- Original message -------------- > > > > Hi all, > My daughter is almost 8 months old and I just found out today that > she has Complex I. It was something I didn't want to hear but she > has been having intractable seizures and we couldn't figure out why. > I am just learning about all of this and it is a lot to understand > and take in. I'm wondering if anyone can tell me about or direct me > to any (easy to understand) information about this disorder. I was > told to start her on Coenzyme Q10 and was wondering about any results > you all have had with it. I just need to connect with people that > are in the same shoes as I. > > Thanks, > Jessy > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2005 Report Share Posted February 24, 2005 To All can anyone throw any light on the follwoing does it ring any bells? Lucas is very floppy after an acidosis attack and dystonia has just started can anyone make any suggestions to what supplemnt we could question the hospital about? we are awaiting a fresh MRI slot at present martin newelljosh@... wrote: Hi Jessy, My name is Ange and my daughter has Complex I-III what I can offer to you as some advice is find a good nuerologist one with Mitochondrial background if possible. What I have experienced is that the seizures control alot of functions of the body so if you can control them then most everything else will follow. has three different types of seizures, which in turn causes her stomach to be delayed in processing food and emptying. Her coordination is off and so is her speech. With the supplements I have found because is active already it made her more active. We are on 8 different medications and and feeding tube we have been dealing with this disorder since she was 18 months old and now she is 5 1/2 and going to play t-ball in the spring. Trying to take it all in at once is too much take each day and illness as it comes I have also learned to treat the symptoms not the disorder and it will help each day last longer. It might not be everyones way but it works for us as has a 8 year old sister who needs a normal life too. Ange -------------- Original message -------------- > > > > Hi all, > My daughter is almost 8 months old and I just found out today that > she has Complex I. It was something I didn't want to hear but she > has been having intractable seizures and we couldn't figure out why. > I am just learning about all of this and it is a lot to understand > and take in. I'm wondering if anyone can tell me about or direct me > to any (easy to understand) information about this disorder. I was > told to start her on Coenzyme Q10 and was wondering about any results > you all have had with it. I just need to connect with people that > are in the same shoes as I. > > Thanks, > Jessy > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2005 Report Share Posted February 24, 2005 Hi . I can not help you with Lucas' particular symptoms, but I can tell you where to find a good summary of supplements for mito disease. The United Mitochondrial Foundation website (www.umdf.org) lists them out, and you could show it to the doctors at the hospital and get started trying them one at a time to see if they help. That's how Dr. Cohen, who really knows his stuff, had us find the right mix for Craig. The list is located under "information center", "patients and families", "treatment". We are using one other, very, very new supplement called magnesium orotate as well with very promising results. God bless, Donna Re: New with some questions To All can anyone throw any light on the follwoing does it ring any bells? Lucas is very floppy after an acidosis attack and dystonia has just started can anyone make any suggestions to what supplemnt we could question the hospital about? we are awaiting a fresh MRI slot at present martin newelljosh@... wrote: Hi Jessy, My name is Ange and my daughter has Complex I-III what I can offer to you as some advice is find a good nuerologist one with Mitochondrial background if possible. What I have experienced is that the seizures control alot of functions of the body so if you can control them then most everything else will follow. has three different types of seizures, which in turn causes her stomach to be delayed in processing food and emptying. Her coordination is off and so is her speech. With the supplements I have found because is active already it made her more active. We are on 8 different medications and and feeding tube we have been dealing with this disorder since she was 18 months old and now she is 5 1/2 and going to play t-ball in the spring. Trying to take it all in at once is too much take each day and illness as it comes I have also learned to treat the symptoms not the disorder and it will help each day last longer. It might not be everyones way but it works for us as has a 8 year old sister who needs a normal life too. Ange -------------- Original message -------------- > > > > Hi all, > My daughter is almost 8 months old and I just found out today that > she has Complex I. It was something I didn't want to hear but she > has been having intractable seizures and we couldn't figure out why. > I am just learning about all of this and it is a lot to understand > and take in. I'm wondering if anyone can tell me about or direct me > to any (easy to understand) information about this disorder. I was > told to start her on Coenzyme Q10 and was wondering about any results > you all have had with it. I just need to connect with people that > are in the same shoes as I. > > Thanks, > Jessy > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2005 Report Share Posted February 25, 2005 It sounds like others have given you good advice on visiting umdf.org and so I just wanted to welcome you to the group. Feel free to post any questions you may have and the group will try to help you. 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) New with some questions > > > > Hi all, > My daughter is almost 8 months old and I just found out today that > she has Complex I. It was something I didn't want to hear but she > has been having intractable seizures and we couldn't figure out why. > I am just learning about all of this and it is a lot to understand > and take in. I'm wondering if anyone can tell me about or direct me > to any (easy to understand) information about this disorder. I was > told to start her on Coenzyme Q10 and was wondering about any results > you all have had with it. I just need to connect with people that > are in the same shoes as I. > > Thanks, > Jessy > > > > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
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