Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 Hi my name is Adrienne I have 4 little girls 7,5,3,9months. My 9 month old ()was diagnosed last Thursday w/ Mitochondrial. The Drs we went to didnt know much about it. She has had every test that you can think of. We finaly got the muscle biopsy test back and the Nuerologist couldnt read the numbers so now we have to wait until September to go see another specialist. Everything and all the discriptions that I have learned about this has been from the internet. I dont know what to do until September.I found this page and thought maybe if I could get other parents input on how to cope with the unsurity of whats going to happen maybe I can stay saine until then. Thank You, Adrienne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Welcome to the group. Personally, I am no good with lab reports and numbers, sorry, but many in this group are. I am sure if you post some of the results, there are people here who can tell you, at least a little, what it means. If your daughter has a specific form of the disease, please let us know. It truly amazes me, that every time I have a question, someone here has experienced it before. This disease is hard to understand, so be glad your neuro was vain enough to admit that he did not know alot about it (those can be hard to find.) What specialist is your daughter going to see? Best wishes, and feel free to ask away. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Do you have a copy of the report with the numbers? I can get our report out and we can talk over the phone and I can help you understand them. that would be the best thing...just email me privately if you are interested. You can send me your number b/c I have free long distance... deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 5 with High Functioning Autism & dysfluency and Bliss age 3 with very very mild Cerebral Palsy.http://www.heartliftersgallery.com/http://www.lifeofloveproject.org/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 hi thank you for writting me. She has hypotonia and she has a feeding tube. her ventricals are swollen .She also has excess fluid around the brain. I didnt get a chance to get a report I was so overwelmed by what I had been told.All I know is that I looked at the report and there was a list of 8 things and 4 had numbers on them and 4 didnt and those said nd or na not really sure I do know all the numbers that were there were in the 130's and above. I have no idea what that means. I am very confused right now and I am so thankful for a site like this. thanx again for writting me so quickly. Adrienne >From: albregra@... >Reply-To: Mito >To: Mito >Subject: Re: dont know what to think >Date: Wed, 2 Jun 2004 17:14:29 EDT > >Welcome to the group. Personally, I am no good with lab reports and >numbers, >sorry, but many in this group are. I am sure if you post some of the >results, there are people here who can tell you, at least a little, what it >means. >If your daughter has a specific form of the disease, please let us know. >It >truly amazes me, that every time I have a question, someone here has >experienced >it before. This disease is hard to understand, so be glad your neuro was >vain enough to admit that he did not know alot about it (those can be hard >to >find.) What specialist is your daughter going to see? Best wishes, and >feel >free to ask away. > _________________________________________________________________ Looking to buy a house? Get informed with the Home Buying Guide from MSN House & Home. http://coldwellbanker.msn.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2004 Report Share Posted June 5, 2004 Adrienne, Let me start by saying "welcome". I'm glad you found us, but sorry that it had to be under these circumstances. Having a dx of anything wrong with your kiddos is completely devastating...but this emotional roller coaster called mito is a whole different creature. i gurantee you that everyone on this list has been/is/will be in the boat you're sailing in right now...the uncertainty is one of the more difficult aspects of this dx. It's sort of like walking around knowing that there is an enormous boulder that could come crashing down on your head at any given moment. You don't really know IF it will, or WHEN it will, or event what might make it happen faster or sooner...only that there is a boulder that MIGHT come crashing down on you. My kids are both mito affected. My daughter Lexi started having problems at 4 hrs old, my son Mitch didn't show any symptoms until age 6 1/2. So having said that, probably one of the most important things to know is that EVERY child/person with mito presents with different symptoms. No two are exactly alike, even if they have the same complex. And that of course means that no two people will have the exact same prognosis. The docs first told me Lexi would never live to see her first birthday...well she just celebrated her 6th b-day in March and finished her kindergarten year. But that is not to say that this group of diseases is not life threatening in many cases or fatal in others. I would encourage you to read as much sa you can, but understand that the info you gather may or may not pertain to your daughter. The UMDF has a great library of info to read up on, and a super parent pack that explains some of the things to look for, ideas for teachers, caregivers, doctors, etc. If you've not found them go to UMDF.org. I know right now September seems like an impossibly long time away. But if your docs aren't mito specialists, BELIEVE me when i say the wait is worth it. This is a dx that you do NOT want to be misread, mishandled, etc. I give your neuro credit for having sent you on to someone with more experience. Is there a good mito clinic in your area that you can get to? If so, that's where i would be taking my kiddo. This is a highly specialized field of knowledge and you REALLY want someone who knows what they are doing. I sure wish i could find those magic words to take the ache and fear away...but having been in your exact same spot before all i can do is encourage you to not get too tangled up in what MIGHT happen. Whenyou do that,you lose sight of what wonderful things ARE happening in your child's life right this very minute. Sending you great big mito mommy {{{{{HUGGGGGGGGSSSSSS}}}}}}. ruth mom to Mitch (9) and Lexi (6), both mito affected and my treasures Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2004 Report Share Posted June 5, 2004 Hi Ruth, Thank you so much for your encouragement. Its unbelievable how kind everyone has been to me. As the days go by and I spend time with my family and friends I am not focusing on whats going to happen. I still think about it but dont dwell as much. I dont really know if thers a mito clinic anywhere in FL. I guess Ill ask when I go in Sept. Thanks again . Adrienne >From: hilandgang@... >Reply-To: Mito >To: Mito >Subject: Re: dont know what to think >Date: Sat, 5 Jun 2004 08:45:34 EDT > >Adrienne, > >Let me start by saying " welcome " . I'm glad you found us, but sorry that it >had to be under these circumstances. Having a dx of anything wrong with >your >kiddos is completely devastating...but this emotional roller coaster called >mito is a whole different creature. i gurantee you that everyone on this >list >has been/is/will be in the boat you're sailing in right now...the >uncertainty is >one of the more difficult aspects of this dx. It's sort of like walking >around knowing that there is an enormous boulder that could come crashing >down on >your head at any given moment. You don't really know IF it will, or WHEN >it >will, or event what might make it happen faster or sooner...only that there >is >a boulder that MIGHT come crashing down on you. > >My kids are both mito affected. My daughter Lexi started having problems >at >4 hrs old, my son Mitch didn't show any symptoms until age 6 1/2. So >having >said that, probably one of the most important things to know is that EVERY >child/person with mito presents with different symptoms. No two are >exactly >alike, even if they have the same complex. And that of course means that >no two >people will have the exact same prognosis. The docs first told me Lexi >would >never live to see her first birthday...well she just celebrated her 6th >b-day in >March and finished her kindergarten year. But that is not to say that this >group of diseases is not life threatening in many cases or fatal in others. > I >would encourage you to read as much sa you can, but understand that the >info >you gather may or may not pertain to your daughter. The UMDF has a great >library of info to read up on, and a super parent pack that explains some >of the >things to look for, ideas for teachers, caregivers, doctors, etc. If >you've not >found them go to UMDF.org. > >I know right now September seems like an impossibly long time away. But if >your docs aren't mito specialists, BELIEVE me when i say the wait is worth >it. >This is a dx that you do NOT want to be misread, mishandled, etc. I give >your neuro credit for having sent you on to someone with more experience. >Is >there a good mito clinic in your area that you can get to? If so, that's >where i >would be taking my kiddo. This is a highly specialized field of knowledge >and you REALLY want someone who knows what they are doing. > >I sure wish i could find those magic words to take the ache and fear >away...but having been in your exact same spot before all i can do is >encourage you to >not get too tangled up in what MIGHT happen. Whenyou do that,you lose >sight >of what wonderful things ARE happening in your child's life right this very >minute. Sending you great big mito mommy {{{{{HUGGGGGGGGSSSSSS}}}}}}. > >ruth >mom to Mitch (9) and Lexi (6), both mito affected and my treasures _________________________________________________________________ Stop worrying about overloading your inbox - get MSN Hotmail Extra Storage! http://join.msn.click-url.com/go/onm00200362ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
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