I am going to start this blog so hopefully it will be of some help to somebody. When we first heard of this thing we searched a lot and had trouble finding any information. I am hoping that we will be able to contact other parents and other people with this affliction. I say affliction because they say it is not really a disease.
To start our hospital had a very hard time even diagnosing his DI. They really still do not know exactly why or which one he has. The hospital we go to is Chicago Childrens Memorial. Which is considered by many to be one of the best. Well they have tried very hard as for the best I don't know. I have my problems with them and you may say it is just a frazzled parent but I think I have some real issues. I will not go in to it in this first post and will save it for another except that they really have no coordination between specialties. I really think they should have a case manager for situations such as ours. Nobody really was on the same page and we seemed to be hampered with our treatment. Which by the way we still really do not have a legitimate one. By that I mean one that works.
Now I know there are a few different kinds of DI but only 3 are possible in our case and that is what is up in the air still! There is a vasopressin test and they did not do it until just recently. This test checks the level of the hormone that the brain does not make. That is if you have Central DI or what the kidney cannot accept. That kind is called Nephrogenic DI. we have tried treatments for both and still with no headway. We are at our wits end with this and are just about fed up with CMH.
Right now we are still waiting for the test result. We were told it was a 2 to 3 day test and then come to find out that it is a 2 to 3 WEEK test. These are the kind of things that should not happen I believe. Also they have to retest now they said because the result was weird. Still so wishy washy! It just drives me nuts. While they are faltering we sit here with a baby that does not grow and we are thinking that it is becoming more and more serious to find a treatment.
The longer this goes on the more it can harm Johnny. We try to convey these worries and get no where. We have tried other doctors but no one really seems to know what to do. AHHHHHHHHHHHH!!!!!!!! It makes me want to scream my head off!
So anyway here is a good link to a informative site. This site started us on our right path as to understanding what was going on.
http://www.diabetesinsipidus.org/
Here is another link for some information.
\http://www.freundpublishing.com/Journal_Pediatric_Endocrinology_Metabolism/
So that iis it for now see ya all later!
No comments:
Post a Comment