Guest guest Posted March 30, 2005 Report Share Posted March 30, 2005 You are not alone! We all have our good days and then our bad ones. I think that it is only natural to desire our children to live pain free and disease free lives. I have dealt with health issues in myself since I was a teen but really started to be affected in 1990. I handled that decently assuming it to be MS and not the form that would be terminal. Then, in 2000 my daughter Asenath was born and was a little different from the beginning with chronic diarrhea and popping joints, but otherwise thought to be healthy. At 7-8 months she started dragging her left leg and still be thought it a quirk. But then in 2001 and 1 1/2 yrs. of age she began experiencing almost continual migraines and stopped eating. She started having stroke episodes regularly; one paralyzing her entire left side and leaving lots of damage. After this, we were desperate for answers and started seeing different neurologists trying to help her. Finally after going to Mayo in Minnesota we heard about Mito and boy did it fit! We were able to get her on the Mito cocktail quickly and have a g-tube placed and started seeing her improve in man ways. Unfortunately, we had another blow in 2003 when we learned she also had a very rare condition called CNS (brain) Vasculitis. She had four narrow arteries in her brain that could cause strokes or even aneurisms at any time. She began taking steroids and still is fighting to get off them, however, when we try she begins to experience more strokes again. Another thing happened along the way as well. In 2003, we gave birth to another daughter, Zipporrah, who was affected by Mito. She has had more issues than Asenath thus far and it has been hard to watch her too struggle. If you look at my signature you will notice we have 11 children as I am sure you along with many others who don't know us will wonder how many of our other children show Mito symptoms. To answer, 2 children are adopted and the two youngest are my foster/pre-adopted children. Of the other 9 children, besides Asenath and Zipporrah, we are still wondering how many really do have Mito. My oldest son, almost 17, has had migraines and SLE's for the past several years and thus I assume he has it, and then there are several others that show only minor symptoms and so if they do have it at least at this point it is mild. Anyway, sorry for the long message. I just want you to know that you are not alone and the answer to your question as to what helps me is several things. First, this group! They have been through soooo much with me and have been not only my best friends, but understanding shoulders to lean on. I have been privileged to meet about 8 of them personally, and those I haven't met still seem like I meet them daily because of the daily notes back and forth between us. Secondly, for me, my faith gets me through. I believe that God is in control and even though it can be extremely hard to deal with all of the issues we face daily, I know that He is there beside me to comfort me. Thirdly, coping techniques can really help. Taking each day at a time rather than trying to focus on now and the future... We have to be realistic about what the future could hold, but if we focus too much on the future then we will drown in sorrow and not be of any use to others around us, especially our children who need us. Some days it is a moment to moment thing, not just a day to day focusing. There are days you have to cry and feel like pulling your hairs out, but we have to continue to pull ourselves back together again and refocus to give our kids the best we can. Our kids deal with so much! They deserve the best from us. I hope you are starting to feel better. It always seems to help to just " get it out. " Thanks for sharing with us, and welcome to the group. Feel free to visit my kids' web pages seen below. It sometimes helps to put a face on others dealing with the same issues as you. (By the way, we deal with the cyclic vomiting too!) 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... Help me cope > > > > Hello, My name is and I have a seven yr. old boy for whom we > are testing for Mitochondrial Disease. He had a muscle biopsy in > January and I am patiently (okay not so patiently) waitng for the > results. Ever since I learned of this disease stuff I have seen a > lot of signs of Mitochondrial disease. We have been looking for a > real diagnoses for the last five years. He started out with a > metabolic disorder Ketotic Hypoglycemia, and has pretty much resolved > the hypoglycemia but still has few episodes of ketosis. He has also > has started having seizures for the last year and a half. > Developmentally delayed and little for his age, he also has the > ataxia. He has often bouts of vomiting for which we do not know the > cause. I am finding that I am very tired and often feel helpless. I > just want him to feel better and not have to know what it is to be > sick most of the time. > As parents of children with this diagnoses, how did or are you > getting through the hard times? > Not all days are hard but they do come up occaisionally. I am > desperate to get to know other parents who walk through this on a > daily basis. contact me at karenbrbkr@... > > > > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2005 Report Share Posted March 31, 2005 , Your question is profound. How DOES one deal with this emotional roller coaster called mitochondrial disease? With the ups and downs? The not knowing? The "what ifs" (those are the worst in my mind)? At the risk of sounding trite, the answer is one day at a time. Sometimes just getting through one hour or even another breath at a time. Most days i can keep the panic and worry at bay, just thinking about how far my kids have come and knowing that for right now, things are okay. But then, something will happen (like when Suhad lost her precious Leanna a few days ago) and reality comes crashing back in on me. This IS real, and not going away. And there is always that possibility that my kids will deteriorate, just as many families on here have already experienced. What keeps me bouyed is knowing that i really have done the best that i can for my kids. I've done my research, looked into the most recent developments on treatment. I've gone to the conferences, i network with other families, raised $$ for UMDF research, and faithfully take both my kids to their appointments ( a frustrating experience in and of itself). But even having done all of that, i still can't take the disease away. So i enjoy my kids, read with them every night, tuck them in bed with lots of kisses and i loves yous, and try to keep the worry in check. Some days are better than others. I know some day it might be our turn. But i'm just thankful it's not today. I hope this helps in some small way. my love to you ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2005 Report Share Posted March 31, 2005 Hello, I know what you are going through, it's rough. I remember before Gracies diagnosis, the doctors could not tell me anything other than that she was really sick. I hit rock bottom when I bluntly asked her GI "Is she going to be O.K.?" Her doctors responce was "I don't know." Unfortunatly I can't give you advice on making this seem better, other than cherish the good days. Grace can go for months at a time with nothing, then even the smallest little virus, or sometimes for no reason, she hits a wall. This disease really is an emotional rollercoaster. I have days where I wonder if maybe she was misdiagnosed. (Even though she had a very positive muscle biopsy.) I also end up on the other extreme on days I wonder if she will make it to her teenage years. That being said, this is where I resort. This email group offers so much advice and support from parents dealing with all the same issues I am. I think it keeps me grounded. I love reading the reports from parents when a kid is doing great, especially when Gracie is down. It is also great to see the support everyone brings when someone is down. We all see the ups and downs with this so we can relate to each other. I have very good family support as well, but they just don't understand like this group does. Best wishes. MSN Premium helps protect against viruses, hackers, junk e-mail pop-ups. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2005 Report Share Posted April 5, 2005 HI, My son is being referred to a GI doctor now because in the last month and a half he has vomited so much. I do know about how little colds will set him back too. Sometimes those good days are all to short and the bad ones far to long. I know that soon we will have some kind of a diagnosis, because I have faith in a Higher Power that He will ease our hearts. Thank You for your words of hope and strength. How old is Gracie? That is such a pretty name. What is her diagnosis? Sincerely, wrote: Hello, I know what you are going through, it's rough. I remember before Gracies diagnosis, the doctors could not tell me anything other than that she was really sick. I hit rock bottom when I bluntly asked her GI "Is she going to be O.K.?" Her doctors responce was "I don't know." Unfortunatly I can't give you advice on making this seem better, other than cherish the good days. Grace can go for months at a time with nothing, then even the smallest little virus, or sometimes for no reason, she hits a wall. This disease really is an emotional rollercoaster. I have days where I wonder if maybe she was misdiagnosed. (Even though she had a very positive muscle biopsy.) I also end up on the other extreme on days I wonder if she will make it to her teenage years. That being said, this is where I resort. This email group offers so much advice and support from parents dealing with all the same issues I am. I think it keeps me grounded. I love reading the reports from parents when a kid is doing great, especially when Gracie is down. It is also great to see the support everyone brings when someone is down. We all see the ups and downs with this so we can relate to each other. I have very good family support as well, but they just don't understand like this group does. Best wishes. MSN Premium helps protect against viruses, hackers, junk e-mail & pop-ups. Please contact mito-owner with any problems or questions. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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