Seriously, how hard is it just to get good care for your kids these days. It seems like we are always battling with someone just to get what the kids need. I know that is being a good advocate for your child, but when do people just back off and do what is best for the family. I am so sick of fighting. When you have a healthy child and only a few appointments a year it can be painful. Think of two children with medical issues. It seems like it never ends, but I will never stop the fighting as long as it is for the best interest of the kids.
It started with Zak around 4 months old - trying to get his stomach figured out, which later was Acid Reflux. It was months of doctoring and changing until we got an answer. Three doctors later we had it figured out. Then his neck - which was even a bigger episode since we were up against time and all we got was the run around. Then it was Zak's Nose and ears.. Now it is Callie and her twitches. We have never got an answer from our current doctors. Just put her on a random med and see what happens. No idea what is going on just drug her. We are not OK with that. At the time anything was worth a try. 60 hours of constant screaming in pain and we were told just to watch her. If they don't know just tell us. So we made our appointment in Madison and away we went finally feeling good like we have a plan. Even if it is the wrong diagnosis and medication we had a start. (so far we have not had any more issues with twitching - knock on wood).
So after her latest diagnosis and medication change we had an appointment with our pediatrician and we gave her the update of meds letting her know what was said and her report should follow in the mail. She was uncertain if she agreed with the diagnosis but was accepting of giving the new medication a try. Well honestly what am I suppose to say. I am not a doctor and I don't know if twitching causes headaches, but I know she is in some sort of pain and I will try anything. And headaches do make sense to me - and if not well we will continue to search for an answer. Only later to talk to several people that have had kids that start talking and are diagnosed with headaches.. don't tell me something is not possible - look at our children, anything is possible.
So today our current Neurologist got wind and I got a phone call from the nurse. Needless to say they are not happy and want us to choose where we will be getting our care from to keep all the records together. I am just fed up with the whole system. It does not matter what doctor, what clinic or what system. They all want your business. Every time we do not stay in that network it seems like questions arise why we did not see one of those doctors and are told it is hard to keep records together. Not every doctor knows everything.. that is why there are second opinions and that is why it is called Medical "practice". If we only saw doctors that know about our kids chromosome abnormality we would not be going anywhere since it is so rare - they are the only two in the world with that exact diagnosis. I love Dr. Park's theory - He always says "I will never say never. Anything can happen in Medicine." Why can't we find more doctors like him. To think he is going to retire this year or next year.. bummer!! A huge loss. I am starting to think the doctors take it as an insult when you change or go elsewhere. I don't expect them to always know everything and see it all. We continue to go to our doctors because we like they and think are of value, sometimes we just need to check elsewhere.. and sometimes just to ease our minds.
So we go in on the 2nd and we are suppose to talk things through with the doctor to see what the plan is. It should be interesting. We won't be backing down on this one. We have just had way to many issues the past year.