Saturday, December 17, 2016

Reno Results

We finally got our Reno results and can move forward, problem is getting Dylan to take his medication.

So basically we found out that he has a high percentage of Strep and gut bacteria that is most likely making its way to his brain.  He would be a good candidate for GCMAF because he has really high Nagalase levels, but unfortunately that is unavailable at this time.  We are supposed to put him on all these supplements as  well as an antibiotic that was going to be $2000 to buy here in the US so we ordered it from a Canada Pharmacy for about $90.  We are also supposed to give him some kind of Injections that has something to do with Vitamin B12 and put him on Oxygen, but I really don't know why.  I asked if we were supposed to meet for the results but they just emailed them instead and then when I asked about the food part and if we need to cut something out was told they don't give that unless you meet.  I just don't know what to do with these guys because there is definitely a culture barrier in the way the pass on information, but I don't know that I want to push it much more because we can't even get Dylan to take this medicine.  It is all in pill form and well he is 5 and can not, will not swallow a pill.  We tried mixing it in things like applesauce and even apple juice and force feeding him, but not working and we don't want to traumatize him more.

I heard about compounding medicine into a cream and letting the body absorb, but they said that wouldn't work.  I asked about compounding it into a liquid, but again that won't work.  Basically we paid $3000 for good to know information but until we can get him to swallow a pill, there is nothing we can really do about it! So for now, we sit on this information and hopefully down the road we can put it to good use!

Sunday, December 4, 2016

Utah Autism Academy

This past Summer I started looking into options of Autism schools for Dylan because I had the rude reality thrown at me, that the wait lists are LONG!  I left messages for a couple of the schools in Utah County but didn't hear back from them for a long time.  Finally someone from Utah Autism Academy called me back, after a month or two, and told me that you could sign up for the "Interested List" but that list is anywhere from 1 to 1 1/2 years long.  I figured that was fine because I love the preschool he is at and the teacher is my friends Mom so I am very comfortable having him in there.  I was more thinking Kindergarten anyway, so I signed him up in June.  I got a call in early November saying they had an opening and they had reached Dylan's name, I was completely shocked/caught off guard and was not expecting this call for another year.  I felt torn on what to say to them.  So I asked a few questions and found out our insurance would not cover it any way, so that made the decision easier.  I asked if he could remain on the list and she said that would be fine and they could let us know when another opening was.  I figured by that time he would be out of preschool and I would be fine paying what we had to pay.

I text Brandon to tell him of my surprise call and to also forget about it because our insurance didn't pay CRAP for this service.    At the same time, I would do anything to get him this service because I think the one on one and more hours including summer time, will help tremendously.  I just figured we would continue on Preschool and cross this path when the next opening popped up.  They didn't tell me how much it would be but "Quite a bit, as in most families can not afford it on their own with out insurance" we would figure it out when the time comes.  Well Brandon called me and we talked and then he called back and said he thinks he has an option for different types of insurance, so to find out what kind of insurance would be good for their services and we would look into it.  So I called her back and got a list of insurances.  Lets just say this timing could not have been any better and Brandon realizing there were different options has given us hope once again.

I have been talking to UAA and found that the other option Brandon has is going to be great for this service.  The timing was perfect because open enrollment was 2 weeks later and so talking to both the insurance company and UAA we have hope and would get him enrolled as soon as they had another opening.  We were concerned because this new insurance cost us more out of pocket and we didn't really want to switch if we had to wait another year to year and a half and pay for nothing really.  They had a informational meeting for the UAA so we went to ask questions and to meet Linzy that we had been talking to.  After the meeting they met one on one with us and said they would look into their list and give us an estimated time of when they could get him in.  When an opening comes up, they go down the list and whoever can commit first gets in.  They knew how hard we were working on getting things set up just for this opportunity and knew an opening would be coming up the first of the year, so they called all the other prospects and no one else would commit to starting then.  I think most people are kind of waiting for Summer time when the class they are in is over and they have to move on to something else.  That was our original plan because Dylan regressed over the Summer not having the consistency so that was the time frame I really hoped for when signing him up.  Linzy called to see if we decided to go with this new insurance, which we did because SelectHealth pays shit for Autism services we are now finding out, and she was beyond excited!

She told us as long as we will commit to starting him in January then he is next on the list and they will have an opening for him.  She wanted to see about starting the preauthorization process now so that he could start right away in January, but because of insurance and the hassle of going between 2 insurances, they want to wait until January.  So I don't know his exact starting time, but I am beyond thrilled that we are getting him in here!  I am also beyond saddened to pull him out of his preschool because that is all we have known for the past 2 years and I love it and I love the teachers he has had.  I like to think that they have a bond with Dylan and will be sad to lose him, but I hope they understand this is for his future!

As hard as the last 2 1/2ish years have been on us, things have seemed to fall in place.  First, his preschool!  As soon as I saw Sherry, my fears were put to ease.  I knew she had a son on the spectrum and that she could handle him.  I have had nothing but good experiences with her and her class.  Now this!  The timing was perfect!  Had they not called when they did, enrollment would have been over and we would be waiting another year or so to switch insurance companies.  So basically that would be another year or longer of not having this one on one intensive services.  From what I understand, ABA therapy can be at least $50,000 a year or more, so insurance is CRUCIAL.  I love that they have worked so well with us and already I feel they love my son and haven't even met him!  Let's just hope(which I think it will) this experience remains very positive as it has began!  Between (hopefully) getting Dylan on this medication for the Reno Dr and getting him in this program we have high hopes for what's to come his way this year!

Costco

I took Dylan and Desi to Costco the other day and as we were checking out the cashier tried making small talk with them.  Dylan just turned away and the lady was like, "Well Ok."  You could tell she thought he was being a little rude because obviously he is old enough to make conversation.  My mind raced because I didn't want her thinking he is a rude little boy, because he is not, but I didn't want to make her feel dumb either.  I spoke up and said, "he doesn't talk."

She was like, "Oh, he really doesn't" (but she was sincere about it) so I said, "Yes, he is Autistic and nonverbal, but oh how we would love to hear his sweet voice."  I told her I didn't want her thinking he was being a rude little kid, but that is why he didn't respond.  She was very sincere and I don't think I made her feel bad so I think my job was done.

I figured this day would come because when they are little and don't respond it is no big deal, but now that he is obviously older and should at least respond with eye contact then people will notice more.  I love that this was a positive experience and hopefully they continue this way for a long time.