Guest guest Posted April 16, 2003 Report Share Posted April 16, 2003 Hi : I'm sort in the same boat as you are. My oldest son, , has been showing signs that concerns me; but my husband and I don't want to go overboard in thinking mito. It could just be a few things that has issues for and doesn't have to do with mito. A couple of things of concern is his dyfluency, and for these past two days he complained of not being able to handle the heat. He use to have headaches but our neuro feels that is stress related. does have a few issues with fine motor skills. We are going to his neuro next week to evaluate his dysfluency. is a little worried that he may have what Leah has and at least voiced his concern on it. And we hope that isn't just saying this about the heat just to get our attention. I know what your husband says is what I feel. Why push issues when they aren't real apparant and also afraid that what the answer may be. But by talking to your doctor you are getting all your facts together to make a sane decision as when to push the issues. We'll know more next week after 's EEG and discussion with his ped. neuro. So we are in the same boat so to say. And when to cast off to say something is going on let us pursue this further. Good luck with your decision. mom to Leah, , PINE LAKE TOWNSHIP wrote: > Hi, > > Well I talked with Lily's neuro(Norberg) on Friday. She finally got to > talk to Whiteman. Finally got the results from her last round of blood > work. DNA studies for MERF, NARP, MELAS. All negative! Norberg & Whiteman > both were a bit surprised that it was not positive for MELAS. (I also). > They were thinking of testing next for Pyruvate Dehydrogenase or > Carboxlase if there are still some fibroblasts. Lots of issues attached > to that-if there are any, they are frozen, since April 2001, may not be > good, the lab that does the testing (Cleveland) prefers fresh, and lastly > the cost. How will I get insurance to pay for it? Sure they won't she's > dead and she had different insurance then we do. So I think that's a dead > end. (Sorry, that was not an intended pun.) I'm not sure how much it > cost, and whether or not we should pay for it, and if it will yield any > needed information. She's already gone. > They also talked about my concerns about Ada. Prone to infection-catches > everything, no fever control > ( no low only high, but remember no seizures when her fever was 105, so > that's great news!) and shares her sisters dairy, penecillin > sensitivities. She is as smart as a whip, no mental or physical delays, > just " something " I can't quite put my finger on. I'm trying to sort out > my concerns or Ada. if their justified, if it's because I'm trained to > think Mito. If I'm over reacting. Whiteman said he would see Ada and > evaluate her, decided if we should test her farther and at the sametime > reveiw Lily for me. To give me peace of mind, he was willing to do that. > Part of me thinks they wouldn't find anything to " test " on Ada, as she's > so healthy when she's not sick. Part of me thinks they couldn't even find > out " what made " Lily so sick and she was soooo bad- so they'll never find > anything wrong with Ada. Part of me thinks they never found anything > wrong with Lily because it was those damn shots- and they weren't > looking for that cause-so they never found anything. Hubby is inclined > to leave well enough alone. Leave it-Ada is what Ada is. We love her, > what more can one do. If something happens down the road we'll deal with > it then. > Help-I'm rambling. I need some fresh perspectives on this. I'll be gone > sun-tues, so it may take me awhile to get back to any who reply. Thanks > in advance. > > > Mom to Red, Ada, Angel Lily > > ________________________________________________________________ > Sign Up for Juno Platinum Internet Access Today > Only $9.95 per month! > Visit www.juno.com > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2003 Report Share Posted April 18, 2003 , Thanks for responding. If I may, can I ask one more question. is 7 (I think), how do you handle his concerns that he has what Leah does? What did you say to him about the upcoming tests? I'm asking because Ada is as smart as a whip. She has shown us in the past to be very astute in making leaps of understanding we would not think a four year old to be capable off. I have tremendous fear that if I took her to see Whiteman that there is nothing I could do to prevent her from making the leap to " she has what Lily had " . Lily's death is still so fresh to her. I'm still struggling with the decision to see Whiteman or not, I might make a different decision later. Things are still " fragile " in our house. Especially with Ada. She was bonded to her little sister. Sorry, rambling. Best of luck on s tests. I will be thinking of all of you. ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
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