Medial Frustration and Life in Transition

For the past 6 months I have fought with my insurance company to get a medical authorization to get Joseph a fresh muscle biopsy done to test for mitochondrial disease.  Once I FINALLY got the medical insurance to approve the biopsy I have spent the last month trying to get the doctor's office to call me to set up an appointment.  In the last month I have called them AT LEAST 10 times and I have gotten only 3 calls back.  Today was the FIRST time someone called me AND I was able to get the phone.  Keep in mind I have left two messages a day for the last three days.  I even called the insurance case manager to complain that my calls were not being returned.

When I got to speak from someone in the neurology department at UCLA I was told they did not have my son's records.  YOU'VE GOT TO BE FREAKING KIDDING ME!!!  So the guys goes on the explain I need to talk to the registration department.  I said, "why was that not in the message so I could check up on things instead of losing time?"  His response, "I don't know but I could put in a request to get the message changed to add that information."  UGH!!!  SHOOT ME!!!

So if you do not have a patient ID with the UCLA then do yourself a favor and contact the registration department (phone - 800-825-2631, fax - 310-301-5391) since they are in charge of everything anyways.  So I had to called Joseph's referring doctor again, the geneticist, and asking her office to fax over the information again.  A week ago she had faxed it over while I was on the phone and now here I was asking her to fax over the information again.  I explained how I had been trying to make this appointment for the last month and I was getting frustrated over the bureaucracy of the UCLA system.  The nurse at the geneticist's office was kind and she said she would fax it over and then call to make sure UCLA registration had what they needed.  I told her that was VERY nice and THANK YOU!

I was able to make a few calls to Arizona today.  I was able to talk to an advocacy group for disabled children.  I was able to get some good information and I am sure I will get some more.  I found out about a great homeless shelter program called UMOM.  I may have to take advantage of one of their programs until I can get my first paycheck from my new job.  Otherwise I will only have $1700 to $2100 to support all of us for the month.  Plus, once I start my job I will not get any pay right away.  The first paycheck will be at least two weeks after I start and I have to find someone to watch the children for me and I will have to pay them in advance (at least partially).  Just need to determine how I am going to pay to for everything.  By taking advantage of one of UMOM's programs for a bit it will help me to get us on our feet.

On a possible positive note I remembered that Good Night Pediatrics is located out of Phoenix.  Yea!!!  I cannot recommend the office in Henderson, NV enough.  They are GREAT and MUCH faster than an emergency room.  With the office hours from 5pm to 5am I can take care of emergencies during the night with ease.  That is a HUGE relief to me since Joseph has a TERRIBLE tendency to have some sort of respiratory emergency on the weekend or during the night.

I have a lot of friends on Facebook and they are some super great people with super great information that I like to share on my blog.  One post was taking about Gluten Sensitivity and Magnesium Deficiency by Dr. Osborne.  It is a great article explaining how this can occur.   Someone also found an idea off of Pinterest that is a great idea to get yogurt into children.  You can make your own yogurt dots. 

Trip to St. George and the Geneticist

Its fun having the kids in the car. This is the First time they are pointing out geographic features.


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Again, I was trying to use the mobile blogging feature. I have to work on this and see if I can get it worked out.

We had an appointment for Margaret and Joseph at the geneticist at 1:00pm Utah time. Dr. Arch is in St. George, Utah. There is only ONE geneticist in the state of Nevada and to get to see her there is at least a three year waiting list. So we went to Utah. The drive should take about two hours and twenty minutes but the drive was more like three hours. There was a small traffic accident on the way out of Las Vegas and I had to go through two construction zones before I arrived at the hospital (this is where the geneticist has her office). Luckily for us there were other patients from Las Vegas that day and they were late also so when I called and said I was running late it was not a surprise to the staff.

On the way there the children really where pretty good. I had the foresight to through in some books and toys into the car before we left. The kids played and shared SO nicely back there. I was SO proud of them. They were also having fun pointing out geographic features like cacti, mountains, rivers and trees. Especially when we went through the Virgin River Valley Gorge. James got out of the car and lead the way into the hospital. The kids played in the waiting room and got into the bag of food I brought with me as I went over paper work. Then we were escorted into the back and into a waiting room.

The kids now wanted to play with the toys in the room. It was about 10 minutes later the Dr. Arch walked in. We quickly discussed Margaret. With Margaret having a normal micro-array analysis and the MRI of brain damage I feel as though I know what I basically wrong with her. I think all of her problems stem from brain damage. Joseph on the other had is COMPLETELY different.

With Joseph having a normal MRI and DNA analysis but he is severely impaired in function I can only think there is something wrong that the doctors have not found yet. Joseph did have some blood work that showed some abnormalities. We discussed getting a muscle biopsy done. I will be working on getting the authorization re-approved.

If we get the muscle biopsy done it will be a BIG deal because we will have to drive four hours to Los Angeles and Joseph will have to be put to sleep. It would be like an out-patient surgery sort of thing. Very scary in some ways but it would be SO good to get it done and determine if he has any muscle myopathy or mitochondrial problems.

On the way home Margaret was getting restless. Sitting in a car seat for so long makes he cranky. About two hours into our return home Margaret got mad at James for some reason and the next thing I know he is screaming in the back. Then he says that Margaret bit him. I made her apologize. Man, it is rough making a car trip with her. She can get so hostile sometimes. Got to remember to put her on the outside and not between the boys. This would at least limit the amount of damage she could do because she could only reach one person.

I would guess most people would not be surprised when I say I was exhausted when I got home and couldn't have been more thrilled to stop for the night...lol.

What a day! (in that good kind of way)

OMG, what a day!!! The day started off in a panic. John and I were not thinking. I had taken my van in for mechanical work. This left us with only one car. When John got up int he morning he knew I had the IEP meeting today for the children but it did not register with him. So he took the car this morning and I had no ride. Lucky for me John carpools with a co-worker and she came up with an idea. She was able to get her oldest daughter to come and pick me up and drop me off at John's car.

Another friend, D., was kind enough to come over and watch the children. It would have been really difficult for me to follow what was happening if I had the children with me during the meeting.

I arrive at ChildFind at see Cheryl, the advocate, waiting. We we soon greeting by one of the IEP team members and we went to a large room. Then the rest of the IEP team arrived. I was nervous but I knew in having Cheryl there I would at least do OK. John, since he is a school teacher with district, wanted nothing to do with the IEP meeting. There have been teachers written up for being a strong advocate for for their child. So I understand why he does not want to be involved.

We started with James' IEP. We started by going over the results from the testing. I had picked this information in February but we decided to go over the information again since it had been seven months ago. We spent about 40 minutes going over all the previous information and making changes where James has made improvements. Then we spent the next 70 minutes going over all the goals and benchmarks for James. Where the advocate really helped is in getting James more therapy time. The school district offered three hours of therapy time a week. Then they said they would have offered James the autism program where it is a full-day program that is 5 days a week. The advocate then said that should equate to at least 5 hours of direct therapy time a week. There was a small argument but the District agreed and basically doubled his therapy time per week. Yea!!!

Then we had a very short break and started on Joseph's IEP. I pulled out the medical letter from Joseph's pediatrician, pulmonologist and ophthalmologist. The letter from the eye doctor told of Joseph's eye prescription. It was in cones and not a typical 20/20 sort of prescription. The school nurse and I argued about the prescription. She said they could not give Joseph vision services without knowing a 20/20 prescription for him. I told her several times the ophthalmologist would NOT give him a 20/20 prescription and SHE (school nurse) would have to get it out of her. That is was not my responsibility. I did what I had to do and that is to get a current prescription for him. Then the letter from the pulmonologist said Joseph was not to be in a school setting for the risk of respiratory disease. The last letter, from the pediatrician, threw the entire meeting into an uproar!

In that letter it was said that Joseph suffered from autism. The school system did not assess for autism nor did they think they saw signs of autism. At that point the team was at a lost. The advocate stepped in and said now that I had presented this information they could not ignore it. She suggested the IEP team follow through with Joseph's IEP as it is now (Orthopedic with a secondary of Developmentally Delayed) than to risk owing Joseph compensatory services. So the IEP team decided to call in the supervisor. She came in and explained that the IEP would be be configured as it is and then the school district would have to come and assess Joseph for autism. She made sure to point out that I initially was not complaining of autism for him AND the diagnosis from the doctor is just a medical diagnosis not NOT an educational diagnosis. So all was agreed to and we formulated the IEP for Joseph. Again, I am glad the advocate was there because she really helped in formulating the benchmarks for both the children and I think they are better benchmarks because of her help.

I am not sure when services for the children will start but I will be contacted and a schedule set up. I am a bit surprised by Joseph's qualifying criteria for an IEP only entitles him to two hours of therapy a week. The only way that could be changed if he is not meeting his IEP goals. It seems to me though developmentally delayed children should get as much or more therapy time per week as a child with autism. VERY interesting!!! The advocate also helped me to convince the IEP team to use PECS with Joseph. I am hoping PECS will help him to understand that words can mean objects and words can help you get the things you want.

Overall it was a SUPER busy but good day. The advocate was even kind enough to be there on her birthday! So thank you Cheryl!!!

More good news for the day was when I came home I had recieved a notification that some one had donated to Joseph's fundraiser. It seriously made me cry! To Feel as though I did well for with the IEP and then to find someone with a VERY kind heart donated to help me send Joseph to the Hypotonia Center at Johns Hopkins just made my day!

Then today John went and picked up my car. The auto guys did not repair my side door but I am assuming the other work was done.

Sigh, I have been trying to write this post for three days. I keep getting interrupted. I was hoping yesterday (Saturday) to go and see my friend D. because she is about to move to KY. I am sad she is leaving. :( Anyways John needed to run several errands and it just got too late. Then today he has school work to do and so do I. Heck, I am not even sure D. is available today to do anything. I will have to see.

I also got a chance to drive my car yesterday to the store. OMG, it runs SOOOO much better is WAY quieter! The mechanics I took my car to said the front tires of my car were bad especially the driver's side tire. While John was out yesterday he took the car over to a tire place for me. They looked at the tires and said it was the back tires. They were the ones that were bad and showed him. So $350 later my car was out of the tire shop with new rear tires and it rides SO nice now. I am disappointed in the general mechanic shop I took my car to because of the door not being repaired and the incorrect information they gave me on my tires. These people even had a good review on Yelp!. John is going to drop my car off at the mechanic again and I will have to call them on Monday and ask why the door was not repaired.

Saturday even I got more good news for Joseph's fundraiser. Someone was kind enough to donate $100. This brings the total up to $640! We are at 21.33% of our goal! Yea! I was hoping I would be able to cancel the fundraiser because Joseph's genetic tests would show something. This was not the case though and that brings me to my final bit of news.

John took James and they went to Quest to see if Joseph's test results were ready. They were!!! He got the results and then called me. He said the MicroArray analysis of Joseph's DNA showed NOTHING! He has completely normal DNA. The neurological problems Joseph has should be cause by one by one of the following reasons: brain, metabolic and/or genetic. I think we have pretty conclusively ruled out genetic causes. We have mostly ruled out the brain with the normal MRI and at the very least there are no obvious (subtle or otherwise) reasons why Joseph is having nuerologic, retardation and balance issues.

Then we come to the metabolic problems. These are typically caused by really small genetic errors and you have to know what you are looking for so you can do the genetic testing. Some of Jospeh's blood work has shown an increase in very-long-chain and long-chain fatty acids. So maybe his body is having problems with breaking down fatty acids. If so then he may have a mitochondrial disorder. If Joseph has a mitochondrial disorder then it is super important we take him to the hypotonia clinic. So on with the fundraiser!

Still looking for fundraising ideas. Please let me know if you have any!