venting....trust me..VERY LONG

[Guest guest]

I am at my wits end. Not sure what to feel or think or even say or ask.

For 15 years we have dealt with medical problems with no answers as to why we have these strange medical issues...we have been told I have maunchousins disorder, which offended me greatly. And we have been told its a fluke in the systems....

We went through genetic counseling after we were trying for another child, only to be told " the child u have so many issues with tried to miscarry itself and u fought to keep it viable, sometimes the body knows best"...in other words it is my fault.

After our last child was born it was obvious there were immediate issues..and after a few months it snowballed until one metabolic Dr got involved and diagnosed possible mito. from that point it was easy to look at all the kids and realize this was the case with them all....and me! Once we began clinical visits and testing it was obvious. EXCEPT no positive tests to show what type. blood work looks questionable but never definite....way too many organs involved, and too many medical issue to not be the answer, we get told....now we come to this past month....

one child goes into the hospital for G tube placement...never a problem until past year! now all of a sudden seizures appear and heat rates go crazy, blood pressure soars...etc. Mito Dr (Dr Korson) is sure of the diagnosis now!! BUT..we still have no "proof" or specific name....the treatment from other drs and staff is like we are crazy. They say "well this is ok, so what if he has diarrhea, he doesn't need to drink that much, its only a seizure post surgery probably......" ok...I get it can be normal for some kids....or even not a real problem...but my child is different. I keep getting told about cancer kids and their needs, but my kids get left to fall through the cracks....social service people at the hospital tell us to be vocal, when we do it is considered rude on our behalf....if we don't, something goes wrong, we get asked why we didn't speak up. I am starting to hate drs! Suddenly we went from medical problems requiring medicine, to medical problems requiring the use of 3 wheelchairs, tubes, tubing, syringes, hospital beds, pumps and cpaps.....yet there is no answer as to WHY we need this stuff except "working diagnosis of Mito" and " we really believe fully this is the case"....well I want and need proof...for once I just want to walk in to a hospital with certainty as to what is wrong and get treated like we know what we are talking about. Only a few drs understand and the rest are unwilling to be taught. Meanwhile how can I be an advocate for the children if I am losing the fight myself....some days I simply want to give up fighting and just let them screw up and say "told u so"! but it hurts my children not them....

we have had one child biopsied in Atlanta, nothing from that....except to be told "if this test is negative your child does not have MITO". then to be told "o, that's not true..." ARGH what is true?? we just had an exercise test done where u squeeze a ball and draw lactic acid and carbon dioxide levels....one child was negative and the other didn't do it long enough- so inconclusive! now we are all on cocktails, so how do we accurately test for anything???? Please..is there anyone out there who really feels this way??

I feel like a real failure to protect and failure for possibly giving this to my kids...5 of them....when I see my son with a tube out of his stomach I really feel like a failure.....and I know more is coming....

sorry for so long, I just need to know I am not alone....we have lost ALL our friends due to this "disease" and feel very abandoned....

Donna

wife to Rod, and 5 kids with "working diagnosis of mito" for all of us....