Guest guest Posted April 1, 2005 Report Share Posted April 1, 2005 I am new to this site but it seems to be a great place to be for information. I have a daughter that will be 4 years old in July that might have mitochondrial. Her muscle biopsy came back normal but one of the other test (blood I believe) had a slight elevation for mitochondrial. So me and my wife have now been referred to Childrens Hospital in Cinci, OH for further tests and evaluations for our daughter. By the way her name is Jenna. I have a couple of questions: 1. What is a cocktail. 2. For those that has a child with mitochondrial, if and when did your child start to walk. Any answers or words of encouragment would be greatful. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2005 Report Share Posted April 4, 2005 Hi . My daughter is also four and was diagnosed not by a muscle biopsy but by her labs. We saw Dr. Kelley @ s-Hopkins but Cleveland is a wonderful hospital and Dr. Cohen is one of the leading specialists. Abbey started her " cocktail " just after the diagnosis of Mito Complex I. There is no cure for Mito disorders but some people have a positive reaction to vitamin compounds or " cocktails " . Each one is formulated for the individual. Most have CoEnzyme Q10 as well as Riboflavin, Thiamine, Vitamin C etc. Abbey's is compounded through Vilage Green in Bethesda, MD. She is also on Carnitor which is a muscle stimulant. As soon as we stared the Carnitor we began to see increased strength. She started walking just after her third birthday but has just now really grasped her balance & perception of uneven surfaces. She still isn't talking but she communicates in her own way & we are having some success with Picture Exchange. We started her in the preschool class at the public school & despite early concerns she is thriving. She can't wait for Mondays to come around! Whether it is purely coincidence or not Abbey has improved physically and cognitively since beginning her meds. Two years ago she fatigued easily, barely pulled up on furniture, was still on a bottle and slept about 4 hrs more than most kids her age. Today she spends hours at the park and can (just recently) climb the steps to the ladder on her own. She feeds herself and most importantly shows a desire to be independant. This is a crazy disorder that leaves you with more questions than answers. Even the specialists can't predict how each child will respond. But there are a lot of websites with information and this is a wonderful place to get information & support. Good luck in Cleveland and our family will be praying for yours. All the best, > > > I am new to this site but it seems to be a great place to be for > information. I have a daughter that will be 4 years old in July that > might have mitochondrial. Her muscle biopsy came back normal but one of > the other test (blood I believe) had a slight elevation for > mitochondrial. So me and my wife have now been referred to Childrens > Hospital in Cinci, OH for further tests and evaluations for our > daughter. By the way her name is Jenna. I have a couple of questions: > 1. What is a cocktail. 2. For those that has a child with > mitochondrial, if and when did your child start to walk. Any answers or > words of encouragment would be greatful. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2005 Report Share Posted April 5, 2005 Welcome to the group. Our daughter Grace saw a liver specialist in Cincinatti, we really liked that hospital. They are actually the ones who convinced us that she did have a mito disorder and they referred us back to Cleveland Clinic. Do not be surprised if they want you to head up to Cleveland Clinic, because a doctor named Bruce Cohen is at CCF. He is a leading doctor with Mito, and who our daughter is seeing now. Thankfully we are in the Cleveland area, so it is much nicer going to CCF instead of Cincinatti. The cocktail is a mix of supplements or vitamins wich is different for each person. The two "staple" medications are usually Co Q10 and Carnitor. Both of these are usually deficiant in someone with mito, but are good even if they are not. Other supplements or medications are added depending on the individuals need. Our daughter Grace has varied with her cocktail. There have been times where she has taken up to 14 different medications 3 times a day. Thankfully she is rather stable now so only needs the Carnitor and Co Q10 (she is deficiant in both). As far as walking and development go, it is really on an individual basis. Our daughter walked at about 1 year wich is very typical. She is 2 1/2 now and is physically age appropriate, yet she does have foot orthotics to help stabalize her ankles. She does have speech delays, and goes to speech therapy weekly to help with this. If you were to look at her, it would be nearly impossible to know how sick she really is. Thankfully she does respond to the cocktail well, so we are optimistic with regards to her future. She has many medical issues, but we deal with them as they arise and get through it. If you need some more info, just feel free to ask. Some really great websites to check out are www.umdf.org and www.mdausa.com. (mda may be a .org, i forget.) Best wishes Download your favorite songs at MSN Music - Over 1 million songs for just 99¢ each Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2005 Report Share Posted April 5, 2005 hi paul and welcome. this is a great place for information and support. 1. the mito cocktail is a compounded form of vitamins/supplements. and can vary on which vits/supps. my daughter, anna grace, was on it a few years ago for a good 9 months and we noticed no difference, therefore she was taken off. however, many here have see a great response. 2. anna grace (who is 5 years) is nonambulatory and nonverbal. we were told that she would probably never even crawl, but she has been crawling for two years. feel free to ask any questions you may have. bethany mom to brennan 8, palmer & anna grace (leighs) 5 > > > I am new to this site but it seems to be a great place to be for > information. I have a daughter that will be 4 years old in July that > might have mitochondrial. Her muscle biopsy came back normal but one of > the other test (blood I believe) had a slight elevation for > mitochondrial. So me and my wife have now been referred to Childrens > Hospital in Cinci, OH for further tests and evaluations for our > daughter. By the way her name is Jenna. I have a couple of questions: > 1. What is a cocktail. 2. For those that has a child with > mitochondrial, if and when did your child start to walk. Any answers or > words of encouragment would be greatful. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2005 Report Share Posted April 5, 2005 Welcome to the group. I am sure others have filled you in on what the " cocktail " is but thought I too would tell what our girls take. Both girls take Carnitine and COQ10, and then Asenath also takes Vitamin E, and Vit B2. She also takes Cytra regularly which helps to control her metabolic acidosis, but I know that isn't usually included in the cocktail. She actually takes many other meds for different issues, but I think these are the only ones specifically in the cocktail that she takes. Asenath walked at 10 months so she wasn't behind. She did drag one leg though due to a probable stroke which we saw as only some leg weakness at the time. Zipporrah took a little longer but still walked at 12 1/2 months. She was ready by 10 months but the SLE's held her back so mush. She still is real wobbly on her feet due to weakness and balance and fatigue issues, but does pretty good. Both girls wear SMO leg braces to help with their walking issues. Hope this helps. See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org (a photo look into Mito) Darla: mommy to Asenath (5) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomia, SID, global delays, cyclic vomiting, bladder issues, some wheelchair use, eye issues, gastric emptying issues... Zipporrah (17 months) Mito, strokes, neuro-motor planning, SID, GERD, dysphasia, G-tube fed, speech delays, extreme fatigue, aberrant subclavian artery, disautonomia, hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (17)migraines, sensory issues, & some evidence of SLE's... Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4), Marquis (3) Joey (15 months) with hydrocephalus, dysgenesis of the corpus callosum, encephalomalacia & leukomalacia, G-tube, GERD, immobile, severe dev. delays, left hemiplegia (arm)... (15 months) SID, dev. delays, right hemiparesis issues... Cocktail > > > > I am new to this site but it seems to be a great place to be for > information. I have a daughter that will be 4 years old in July that > might have mitochondrial. Her muscle biopsy came back normal but one of > the other test (blood I believe) had a slight elevation for > mitochondrial. So me and my wife have now been referred to Childrens > Hospital in Cinci, OH for further tests and evaluations for our > daughter. By the way her name is Jenna. I have a couple of questions: > 1. What is a cocktail. 2. For those that has a child with > mitochondrial, if and when did your child start to walk. Any answers or > words of encouragment would be greatful. Thanks > > > > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2005 Report Share Posted April 8, 2005 , I am behind on emails so if someone already answered I apologize in advance. The " cocktail " is actually the vitains that are usually prescribed. It is individual for each child but the main ones are usually Coenzyme Q 10, B vitamins, and carnitor. The UMDF site tells about treatments and gives you an idea about dosages. That is best discussed with a geneticist who hopefully you will see at Cincinnati. My son Lucas started to walk at 4 years of age. I never thought I would see the day. Now we are doing what we can to preserve that level of functioning for him. Lucas has been receiving PT in school and also 1 hour a week outside of school all year round. Don't give up on Jenna. Only time will tell. Loriann - mom to , , and Lucas --- hopeforjenna wrote: > > > > I am new to this site but it seems to be a great > place to be for > information. I have a daughter that will be 4 years > old in July that > might have mitochondrial. Her muscle biopsy came > back normal but one of > the other test (blood I believe) had a slight > elevation for > mitochondrial. So me and my wife have now been > referred to Childrens > Hospital in Cinci, OH for further tests and > evaluations for our > daughter. By the way her name is Jenna. I have a > couple of questions: > 1. What is a cocktail. 2. For those that has a child > with > mitochondrial, if and when did your child start to > walk. Any answers or > words of encouragment would be greatful. Thanks > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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