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!

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.

Boys Sleep Over

The other night Boston surprised us and said he wanted to sleep in Dylan's room to help "calm him down" because he was pretty hyper that night.  We kind of laughed and said "Ok, we'll give it 5 minutes and see how it goes!"   I really didn't expect him to stay in longer than that, but I jumped in the bath and left it up to Brandon.  While I was in the bath I heard Brandon talking to the boys, so I assumed Boston had knocked on the door and wanted out, but when I said something to Brandon about it when I got out of the bath he said Boston was still in there.  I never heard Boston but could hear Dylan in there bouncing and laughing away.  After about 1 1/2 hours it was silent and I did my nightly routine of checking in on Dylan to see if there was damage done.  As soon as I opened the door, I could smell poop so I started searching the floor but found nothing.  I opened the toilet and there was quite the load in there, ha ha.  I then figured Boston had somehow fell asleep during the commotion and that was done after he was asleep.  I snapped this cute picture of my two cute sleeping boys:

My Momma heart melted because unfortunately this does not get to happen at our house and this was the first actual boys sleeping together for them.

When they woke up the next morning they were both all smiles.  We asked Boston about the poop and he knew about it, but we asked why he didn't tell us because we wouldn't have wanted to sleep in the stinky room.  Well, my suspicion was confirmed because he has always been somewhat interested in the toilet in Dylan's room and I think he decided to pee in it himself.  It was a good excuse to try it out I guess ha ha.  I guess the boys also had a bathroom party as well, but at least it was a clean(or as clean as that situation could get) one!

Morning Cuddles

For a good month me and Dylan had our special morning routine and about the only time that I could lay with him and relax and enjoy the moment.  I would go in in the morning and lay by him and it was my favorite part of the day.  I went to exercise at the Church one day but was stressing about getting home in time for this, that is how important it was.  Unfortunately, life and school got in the way and I rarely get that anymore.

Energy Work

Let Down, Morbid, Careless and many more energy readings like this, but looking back really quick on my blog those were 3 I had reported having been picked up from Dylan while we did the ASA Balance treatment way back when we started this journey. I am pretty sure there were more disturbing reading then those but for the sake of time, I am just going to leave them here.  Brandon's cousin, Danielle, has a friend that has been finding out some interesting family information through Energy work and so I keep going back to these readings.  I was very concerned when they would tell me his readings because they said he could be picking up on others energy and so it concerned me on "whos" energy he was picking up.  I certainly hoped we aren't exposing him to that type of energy!  When Danielle's experience happened I really wanted to look into this more for Dylan's sake for this reason.

We went to California for 2 weeks and decided to see if we could meet up on our way home and have her check Dylan's out for us.  She confirmed my suspicions and makes you a bit sad to realize that he is being attacked this way, but apparently according to her and her mentor, they came up with the same number, they have never seen anyone have so many entities attacking him as Dylan has.  What does that mean, there is a lot of not good energy swarming around him.  Abuse is really strong in him as well, she said that could have been carried down for generations upon generations.  That really stressed me out because I sure hope we aren't somehow adding to that because I know we aren't abusive parents, but maybe things we say really puts him down.  I don't know, but I have made a point to not say negative things even jokingly around him, just in case.  It is hard and sometimes you just have to speak out loud and I am sure it hurts him, but that is as abusive (other that a butt spanked occasionally) as we get around here.  I am being honest because this is not an easy thing and I know we are all guilty of venting when he is not cooperating or making things easy on us!  Mental Illness is strong through my Mom's side and Lori's side and have attacked him, so he has that hurdle to jump as well.  Some of his emotions she read that she cut off were the same type of things they would say at the Chiropractor but also, "why am I different," and things like that were read from him.

We were curious who he has on the other side battling for him, just as we are here battling for him.  He has Ezekial for a biblical angel.  Then she said he has 10 constant angels protecting him, 3 being relatives.  2 have been here since birth and happen to be Brandon's Great Grandpa on his Mom's side and his Great Grandpa on his Dad's side(this one being in charge).  The next one got a little interesting because she said this one came when Dylan was 2 years and 3 months old!  Why is that interesting?  That was about the time he pulled the barstool over on his head and the regression began.  I honestly was prepared for her to say it was Grandma Gene at that time, but it isn't.  It is (and I may be off a generation or so) my Dad's Great Grandpa or Great Great Grandpa on my Grandpa Clarks side.  She said maybe they knew something was about to happen or happened and sent more help.  All I know is he can use all the help they can give.  I don't know if I am supposed to really talk about this, but I really want Dylan to know this stuff one day, so therefore, I am documenting it!

 Also, she sensed that he is holding on to some memory but for now we do not know what that memory is.  I have racked my brain trying to think of any traumatic memory that it could be, but it is not.  She said it has nothing to do with Brandon and I, so that makes me feel good, but then worry about what it is.  I am convinced it could be something passed down to him, but who knows.  He is storing this memory right above his ear which according to Britney's research, is also the part of the brain that is where SPEECH comes from.  Coincidence, I think not.  I really hope we can get down to it and bring that beautiful voice out soon.

She set up a lot of protection for Dylan and we are to continue keeping him protected.  We need to build up his spirit and help him to truly understand he is here for a reason and he is loved and needed more than he knows.  We have to seek and ask for the help of these angels because we have our Free Agency that they can not override but if we ask for help they are there when asked.  The others they are free to do what they want and put all sorts of unkind things in our mind, so we are going to do our best to keep him safe and sound and surrounded by love and light!( I am being a little short on this post just because I really don't want to put something out there to harm all the good energy, but like I said I really want to have it documented for Dylan someday.)

Reno, the next adventure!

So it has been A LONG TIME since I have posted anything on here, I just can't believe Summer break is here and gone already! Dylan had 5 weeks of Summer school through the Summer and loved(or maybe not so much)it!  I really think he likes school but I know he LOVES his TV and watching shows and ransacking the kitchen all day long, so I think he hates leaving the house for that reason!

I think I may have mentioned in a post earlier that we were going to a Dr in Reno that is out of Belgium?  I don't remember for sure, but that is where I will play catch up!  Unfortunately, we haven't seen much more progress from stem cells but his skin is oh so soft now, so even if paying all that money was just to get soft skin, I will take it!  I really think they have done some magic on the inside of his body and maybe one day they will manifest themselves but I guess we just need to be patient, right?  I am not completely giving up on the stem cell idea, but think that we need to have his body in a better position to see more healing and I think if we were to try stem cells another time, then we may try Cancun next.  They use the childs own stem cells from bone marrow and do things a little differently, however, it is more invasive and a little scary for a young child.  Some people argue that doing it this way the cells would go directly to the brain where others say that the way we did it, it still goes to the brain.  I am watching a few families on Facebook that have now gone to both places to see if they notice any changes and their opinion comparing the two clinics.  For now we have found a new route to go!

One of the Mothers that I have become friends with(facebook friends at least) posted about taking her son to Reno where a Dr from Belgium comes once a month, the results sounded very promising and so we decided to go that route for now.  Here is the results that she posted that got us excited to try it out:

"Through blood work and stool samples, we have learned the following:
- Trey's body creates a very high amount of bad bacteria that travels from his gut, to his blood stream, creating him to have neuro inflammatory issues.
- He has the same symptoms as anyone with dementia would have. 
- His MTHFR tests came out normal, and the doctor said this is very strange with autism, because usually this is A HUGE factor, when it comes to autism. This means he has a regressive form of autism, not a genetic form. This means it is easier to reverse, since he was not born with it. This was triggered by the seven vaccinations he was given (at once), which caused issues in his gut, because he could not handle them. That is where it started.
- The expression of his disease is neuro inflammatory syndrome, which is driven by LPS (intestinal bacteria). What supports this theory is that he has vey high Perforin. Perforin is made by white blood cells when there is an infection.
- He has high D- lactate levels in his body. We do not make D- Lactate. D- lactate comes from bad bacteria in the body.
- His only food intolerance is egg. Any type of eggs.
- He also tested for very high Prevotella, which is a gramnegative anaerobe bacteria, that produces a lot of toxins.

This doctor is amazing. We have a treatment plan that starts tomorrow. I recorded our whole visit and if anyone would like to listen, I can send it to you. He is from Belgium, so he speaks directly with not very much enthusiasm. Haha, but he is a genius and has treated so many kids and people with many different issues. I know it sounds too good to be true, but he said he can help Trey. He said every child who has seen him and followed his plan, has come out of this. A twelve year old girl who has been seeing him for some time, just started speaking! How miraculous. How miraculous will be the day when we hear our sons voice again. I know this won't be instantaneous, but at least I can have hope again."

After reading this we knew we had to give it a try!  I scheduled an appointment to go in June.  We went down there and had a little scare.  When we got to the appointment the Dr did not have Dylan on the schedule, so I showed him the email with his nurse that books the appointments and he said we were in the right place.  (You go to the college in Reno and it turns out this is a Professor and so it is all based on studies, but it's all the same thing in the end right?)  I was starting to freak out in my mind thinking that we had just traveled 8.5 hours for nothing, but thankfully, he was more than willing to still see us.  We went over Dylan's story and he told us information on what they do and what they think is leading up to more cases of "autism."  I should have wrote this all down back then because I don't remember everything. He also felt Dylan's stomach and said he could feel something between his small and large intestine that was leading him to believe he is a "regressive" case and one that has a chance of being treated!  The good thing was we just needed to run some blood work and get a stool sample!  The bad thing, he needed to be fasting!  We had not been told this information and had just gone to eat that morning wasting time until the appointment.  A little frustrating because we then had to rebook and drive that 8.5 hour drive the following month just for blood work! (Had we been thinking we probably could have stayed an extra night and seen if they could squeeze us in the following day, but we didn't think of that until we were more than half way home!)

The idea is to heal the gut by giving some antibiotics and then supplementing certain things his body is lacking throughout his life.  We asked the Dr if he believes the barstool had something to do with Dylan's regression and he said he doesn't know if it does, but we aren't the first ones to come in with a story like that.  He also said that he does not believe Dylan was born this way but sometime during gestation the proteins started being blocked and going in different places than they should have, so we just have to get that back on track and we should start seeing changes!  They have just been studying this for about 3 years and there are 5 different Drs similar to his protocol but they are all seeing pretty good things.  I asked if he would need to be on this treatment for life and he said probably because his body is not producing things correctly and this would help keep it flowing.  Also when asked if the body will get used to the medicine did he have a chance of it quit working and have to switch around, he said it is mostly supplements that he will be given so that shouldn't be an issue, however, it is new so that is not a guarantee.  He told us once his gut is healed, he could refer us to another professor at UCLA that can help reprogram the brain.  We also asked about vaccinations, because you bet I am scared to death, and he said he is not anit-vaccination  but we do need to get his body in a good position before subjecting him to them.  He said that one professor has actually came out with a simple urine test that you can take to show if your body has any infections at the time and is able to accept them.  That makes me angry that that is out there and it is not practiced, because we need to take every precaution to protect our children and yes I now have mixed feelings about this subject.  I will have to worry about this when the time comes though.  Because if we fight so hard and, God willing, get Dylan in a good position and then a simple shot sends him back, I WILL NOT BE A HAPPY MOMMA!  We will have lots of prayers before that is done to my little boy, but I can't worry about it right now!  This is the main points I remember of the meeting!

We went back the following month (end of July) for blood work.  They had given me an envelope and jar to collect his stool.  When we got into the hotel that evening I was able to get the sample we needed.  He could not eat anything from midnight until his appointment that was at 9 or 10, so we made sure not to have anything in the hotel.  We got there and when we saw the lady taking the blood we knew she was in for the shock of her life.  We had been told it was a nurse that deals with children all the time, but not our Dylan ha ha.  She was a very petite oriental women and no helpers.  She tried getting blood in his arms but the veins weren't all that great and then with him fighting with us didn't help much either.  Brandon tried suggesting his foot but she didn't catch his drift so I had to rephrase it and that is where we got the blood.   She had to get a lot of blood, like 6-8 vials full.  On the 5th or so one, I noticed the blood wasn't going in the vial and then realized his foot was turning blue and then realized Brandon was holding his leg so tight, trying to keep him still, that the blood circulation was cut off.  He loosened his grip and then she was able to get a little bit more blood.  However, it stopped a little into the last vial. She asked the professor if that was enough or if she would need to get more.  We had to poke his other foot one more time to fill up that last vial, and then he was done!!  We were so relieved to have that part over and hopefully won't have to do something like that again in the near future! 

As we were about to leave they handed us one more container for a stool sample(oh we also had to have him do a urine sample while we were there).  When they gave us that we mentioned that we already gave them one and then that is when they said they need two samples?!  Why the heck were we not told this before.  He had pooped first thing that morning and I honestly almost grabbed it out of the toilet "just in case" but then figured that was crazy, ha ha.  They said we could bring it back anytime during the day and they would be there until 3 or something like that.  I asked if we could mail it in and they looked at me like I was crazy!  I think the culture difference has made communication not so great, but don't get me wrong he is a nice guy, just not great at letting you know what they need beforehand.  We decided we would just stick around in Reno and wait and hopefully have another sample sometime soon, wishful thinking right?  At this point, we had pretty much planned on staying another night because Dylan pooped earlier that morning and I just knew he would not need to go again until after they left the office.  Brandon and I are the parents that jokingly but seriously argued over who would change Brielle's first poopy diaper(which I won because she pooped when the Pediatrician came to look her over and told Dad that there was his first diaper ha ha) and we are now "Poop Cleaning Experts" and it doesn't phase us much when we have to clean it from random places!  Now there is a positive in all this madness, right?!

We went out to eat because we had starved the poor kid and prepared ourselves for another long day.  Lori had the other kids but had plans the next day, so we had my Dad pick up the kids so they could stay at their house that night.  We are beyond grateful to our families support, without them, none of this could be done.  We knew the kids had a place to stay for the extra unexpected night and were good to go.  After we ate, we decided to find a mall that we could go walk around and waste sometime.  We went in there and Brandon decided out of pure desperation and a whole lot of wishful thinking that he would take Dylan in to see if there was anything.  He literally walked back out in minutes and I started to walk off.  Then I realized he had just told me Dylan had gone!  So I started following him in but then didn't want to be in the Men's restroom, so I told him to bring out a piece(yes we are talking about poop like it is a piece of gold).  I figured he would bring it on a paper towel or something but instead he brings it out bare handed.  I run into the Women's bathroom and grab a paper towel and he puts it on there and then I run back to the bathroom to scoop out a chunk of this wonderful piece of Poo!  It was seriously amazing and we have never been so excited for Dylan to poop as we were that day, because it was only 11 or 12 at this time, AMAZING!  We headed to the car and back to college and dropped it off and headed for home!!!

We are now waiting for results and was told it would be about 6 weeks, so we should be getting these results within the next week or two and I can't wait!