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!
