Wednesday, September 14, 2005

Crummy few days - lots of ranting here.

I know, I know. I have been MIA. I apologize. The emails are piling up, the to do list is getting longer, but FIRST - let me explain. Well, I guess more accurately I should formally invite you to my self-held pity party.

Calista was scheduled to receive and MRS and MRI test yesterday. Dr Marc Patterson, an infamous neurologist who specializes in metabolic disorders at Columbia - Cornell University Hospital, concurred with Dr. Harvey Singer of Johns Hopkins that this test is our next step. Both of these neurologists are well-known in their field and basically the top drs in the country.

On Friday at 4:30pm EST, I received a phone call from my insurance company telling me they will not cover the MRS due to it being an "experimental" test, with the results "not being supported by conventional research". Now, as you may or may not know, Calista (she is 19 months old) has some very rare conditions in addition to her asthma and developmental delay. One of these is PDC, or paroxysmal dystonia for short ( a neurological movement disorder that causes movements similar to seizures). The other is an elevated lactic acid level in her blood, or acidosis (a metabolic issue). We do not know if these are related conditions, if the elevated lactate is causing the neurological difficulties, or if they are separate. The only test available to show (1) if the lactic acid build-up is occurring in her brain and (2) the amount of build up is if we do this MRS test, which measures the brain's bloodflow. So obviously, because Cali's conditions are very uncommon, the tests to help her are most likely going to be not "routine". However there is no explaining this to the insurance company. I told them we are more than willing to work with them, and if this test is denied what option do they give us? Is there another test that will give us the same data? Insurance company's answer, "no". So, all we have is this MRS test which costs tens of thousands of dollars to measure the lactate in Cali's brain. The test that insurance will not cover. The test we will have to re-mortgage our house for if we decide to get it done. And, the even sadder part? We aren't even sure if the test shows anything what we can do about it! Anyway, we have appealed the decision by the insurance company for what it's worth.

Sunday brought back alot of memories from 4 years ago when the twin towers fell. It was a tough day for everyone here - Jeff still works in NYC and i worry every day!

Monday we had a meeting with Colton's (who will be 4 next month) school and the advocate. The meeting included everyone, from Colton's teachers, speech pathologist and OT to the direcotr of the program and superintendent of the school district. Basically it was a one hour screaming session between our advocate and the director. NJ law states that children with autism spectrum disorders (ASD) receive 25+ hours of education services per week. Colton receives 10 -12 hours per week. We have pointed this out, and the school says that Colton does not require that much service. LIE! Colton needs structure, the school is not following the law! So for an hour the advocate kept saying "what gives you the right to not follow the law?" and the director answering "maybe you should go through due process / mediation if you feel we are doing things illegally? we are not!" So the director is basically telling us to sue the school. WE would much rather go through the proper channels and not have to hire lawyers, but the school obviously sees no issue with what they are doing. And that 25 hour bit is just the tip of the iceberg! You all would be amazed at the things they are doing in Colton's special ed class! So wrong! But we just can't afford to send him to the autism schools, which are about $50,000 per year without therapies. The law states that the school district where we pay taxes needs to provide this education to disabled children. We aren't even asking for a lot - we are asking for the basics! Ugh. So frustrating.

After the meeting Monday, Cali started coming down with a fever. It was up to 103 Monday night. Yesterday she woke up with a fever of 104 and a rash all over. The whole day was spent hugging her (she was extremely irratable and clingy) and tyring to get her to drink. She was up 5 times last night and seems a bit better this morning. Her fever is "down" to 102. BUT..........

Guess who else was up alot during the night vomiting? Colton! HE now has a fever of 103 and is throwing up all over the place! And the child does not know when the vomiting is coming, so it is all over everything! I keep shoving bowls under his chin when I think its coming but he turns his head the other way. And he just wants to lay with me, as does Cali. I feel really bad for them - they look awful! Trouble is they have very different symptoms except the fever, so I don't know if they have the same thing. EEEK! Ah well.

Then my mom calls me this morning. I am covered with vomit, feeling sorry for myself for the way things are going, still down about September 11th, really upset about the MRS test and the school meeting, and had just got done watching a news blurb about the dreadful state in the south, when she announces that the eye doctor told her yesterday that she has corneal dystrophy. I must do some research on it, to figure out what that is about - anyone know?

So that about sums up my last few days. Thanks for coming to my pity party, and hope you have a good day. I am going to work on the RAKScraps mega kit preview while Colton is napping and Cali is watching Wiggles...