Visit to New Pediatrician

This is not a good start when we have been sitting in the back office now at least 40m and it is now 6 pm. Our appointment was at 4:30pm.


I was trying to post from my phone. The above post is only part of a what I wrote. Our old pediatrician has changed practices and the new practice does not accept our insurance. I am SOOOOO bummed but I had to start looking for another pediatrician. Since I don't really know anyone here with small children that are disabled and are not vaccinating their children it is hard for me to get a referral....lol.

Also, before anyone even tries to flame me about not vaccinating my children I have looked into it. They have all had some of their vaccinations. Once we moved I fell behind. Now the children are behind in vaccinations and with Joseph's health problems I have decided I was no longer going to vaccinate him until I knew better what was going on. The other two children I will vaccinate but I will not give them more than one shot at a time. The more I learned about vaccinations the more I think the schedule they advise doctors to vaccinate children is ludicrous. If you want to know why I think that please just ask I and I will send you some information.

OK, so back to finding a pediatrician. Since I did not know what else to do I decided to look on Yelp! I mean, why not? Many doctors in Las Vegas are not even listed on Yelp! I think this is a shame and I do make sure I write reviews for the specialists we see. There were a couple of pediatricians that had positive reviews so I looked them up. I picked Dr. Robertson. So I made an appointment. It was for June 11th at 4:30pm. The doctor's office is on the other side of town from me. I am NOT familiar with the area at all. With my Garmin dead I am SO LOST! LOL

Luckily, I made it there, got the children out of the car and into the wagon along with the bag of binders holding everyone's medical information. My computer and the print have not been talking to each other since we moved so I had to hand wrote out the list of doctors Joseph sees and my questions for the new doctor. I am a terror with doctors and I can't say I really apologetic over it either. My old pediatrician was GREAT! He was the coordinator of all care for Joseph. Trust me when I say that is a LOT to ask of a doctor...lol. When I had even set this appointment the receptionist asked why we were coming and I said it was to check the doctor out and to explain Joseph's complex medical history. The receptionist chuckled and I know she did not believe that Joseph's medical history takes an ENTIRE appointment just to explain everything. LOL

So I get there at 4:30pm because I had a hard time finding the place. Once I get there the office is full. The office staff was nice enough. I got the paperwork and I started to fill it all out. I get it filled in and turned back to the staff. At 5:05pm we were called into the back and put into a room. The room was cute at least, it was done in a Disney Cars motif, but I was surprised there were NO covers over the outlets. I had to tell Margaret four times not to put her fingers into the socket.

At 6:15pm the Dr. Robertson finally entered the room. I appreciated that the FIRST words out of his mouth was to apologize for the wait. That was nice. Then He looked at the list of doctors Joseph has seen since we have been in Vegas. He looked at me and asked if I saw all of them and I said yes but we do not see all of them on a regular basis. He looked at me and said, "I am SO sorry! You are VERY busy!" ROFL! NEVER had a doctor say that! Then we started talking. He asked why I was there. I told him our old pediatrician had changed practices, he knows who our old pediatrician is, and we have to find someone who takes our insurance. He looks at my list of questions and says, "I am a man, if a list is more than 2 items long I can't read it." ROFL! He asks me to tell him what is most important. I tell him I need a referral to a feeding specialist for Joseph. At 4.5 Joseph can only eat baby food, tiny star pasta, oatmeal and eggs. He drinks from a bottle and has NO idea what to do with a straw if you put it in his mouth. In the last two years his weight has not really changed even though he has grown 2 inches. He weights about 25.5 lbs. He wears a 2T shirt and a 12m to 18m pants in the waist. He is SO small!

I also told the doctor that I wanted to take Joseph to a GI doctor and I explained that we were going to see a geneticist the next day. I said we were seeing about getting Joseph a muscle biopsy to check for mitochondrial diseases. He asked why were we thinking this and I said he had some bloodwork that was off in the very long chain fatty acids. He said, "Is it a metabolic problem?" and I said I did not know. He asked for the blood work that shows the unusual numbers and I pointed to the 3" 3-ring binder. He laughed. I said I would look for the lab work and if I could find it I would have the office staff make a copy. He said there is a metabolic specialist that comes to Las Vegas once a month and he would send a referral to him for us. How awesome is that???

Overall it was a good visit through rushed. I left the office and had the kids at the car at 7:10pm. I still had to drive across town to get home. By the time I got home, fed them and got them to bed it was 9:00pm. Wow, that was a LONG afternoon!

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!