And the Nightmare Continues March 30, 2009
I fully plan to answer all of the questions posed in the comments section of my last post, but I think I’m going to wait until I’m in a better place to do so. Today was not a good day.
A SPC* investigator came to our house this morning. Adam and I were not home, but I ended up speaking to him on the phone this afternoon. We now have a home visit/interview scheduled for tomorrow afternoon. Have I mentioned the unfairness of this whole situation?
Then, for the icing on the cake, we got our discharge summary from National Jewish in the mail today. It was horrible. I cried while I read it. It was that bad. They blamed me for everything. I have done nothing but try to help my child, and they made it out to be the exact opposite.
I just love how they didn’t wait for Adam’s last test results to come back before writing it. Oh, it makes me so angry. This report has been sent to our pediatrician and God knows who else and is now a permanent part of Adam’s record. It’s so inaccurate that I could scream.
We will be writing a letter in response at the very least. Ugh, it’s such a frustrating situation, all of it. This shouldn’t be happening.
- Posted in : our main man
- Author : amanda
Comments»
why on earth couldn’t they wait for the last set of results! stupid A*holes! sounds like they were too busy congratulating themselves on a stella diagnosis, to actually let a little thing like proven medical test results get in their way.
Keep fighting them and don’t let up until they send out correct information to everyone they’ve sent this load of claptrap too.
I’m so sorry honey, i hope tomorrow goes well for you keep a copy of the newest results handy and refer to it often. huge hugs chickling
Amanda, I just cannot believe what you are going through. It’s insane. Those b-tards owe you a MAJOR apology. It just breaks my heart how you were so excited to go to this place and hopeful they would help you only to have them accuse you (!!!) of mistreating Adam. Unbelievable. I hope today’s visit with SPC clears all of this up and you are left alone. There are enough legitimate situations to keep them busy for a lifetime without them wasting time on you.
Wow - frustrating is the understatement eh? Can you get on the phone and ask them why they didn’t wait for the results and instead produced an inaccurate and potentially damaging document? Also - I think it’s within your rights to know who the letter was sent to. I’m sorry Amanda - I wish there was something I could do!
Amanda, it is just an extraordinarily awful situation, to put a cap on all the difficulties you have gone through trying to get adam the right treatment and support. Hang in there. This will get better.
I hate this situation for you. What a nightmare. I so wish there was something I could do - it makes me so angry for all your sakes! I am thinking of you!
That just bites. What a bunch of jerks.
Hoping the next few days and weeks bring better news and happier things.
What a nightmare. I would deal with the SPC first and once that file is closed, and it will be… then I would use the closed file and the results of the latest test to demand an apology and hopefully a retraction of that letter.
So sorry that you are dealing with this Amanda.
I just can’t believe this! I’m so sorry! I hope this nightmare ends soon.
Wow, I can’t believe that this is going on! I am so sorry that they are such absolute awful idiots, and that you’ve got to deal with this on top of working out Adam’s issues. I am furious with them for you.
Disgusting. I am enraged on your behalf.
And all of this just because you care enough about your son to want to improve his quality of life.
Sorry to offer totally unsolicited advice, but…don’t write the letter yourselves.
Have your attorney write it. Your malpractice attorney. You can’t throw a stick without hitting a lawyer in your neck of the woods; given all of the medical infrastructure around, the number of malpractice lawyers must be enormous.
Making a “final” diagnosis and calling Children’s Services on you BEFORE ALL OF THE TEST RESULTS WERE IN is egregiously bad medicine. Malpractice snares no few good and caring doctors; the justification for its existence is doctors like the ones tormenting you at the moment.
I’m sorry you had to go through this, and I apologize for ordering you around, but…you got screwed here, and there should be some backlash hitting the parties involved.
Good luck with the visit.
This is horrifying! I hope you get some good direction on the enzyme front. I don’t know if it’s the same sort of thing or not, but I see a nutritionist who specializes in enzyme therapy. It may be worth looking for a practitioner in your area: http://www.loomisenzymes.com/locator.asp
They were able to show me that despite what any doctor’s tests showed, my body reacts harshly to excessive sugars. I take enzyme supplements and don’t eat too much sugar (no simple sugars/starches) and I feel good.
Good luck!
Amanda, I am so sorry that it’s not over yet. I am completely dumbfounded by the absurdity of this. I just can’t understand what NJ wanted - were you supposed to ignore Adam’s problems as opposed to trying to solve them? I hope your visit was not too bad, and pray that this is all resolved quickly.
Amanda, it’s beyond insane that this has happened to you. I’m with Marion–maybe it is time to involve an attorney. Why on earth would they feel that it’s even remotely appropriate to send a letter like that BEFORE they get the test results?
We all had such high hopes for NJ-I can’t believe how horribly wrong it has gone. I am definitely with Marion on this one. I would at least think about consulting an attorney to see what options you may have.