Stem Cells?

Taken from Cellmedicine.com:

What is the rationale behind using stem cells to treat autism?

Current investigative therapies for autism attempt to reverse these abnormalities through administration of antibiotics, anti‐inflammatory agents, and hyperbaric oxygen. Unfortunately, none of these approaches address the root causes of oxygen deprivation and intestinal inflammation.

Mesenchymal stem cells can regulate the immune system. It is thought that they may help to reverse inflammatory conditions and is currently in the final stages of clinical trials in the US for Crohn’s disease, a condition resembling the gut inflammation in autistic children.

Through administration of mesenchymal stem cells, we have observed improvement in patients treated at our facilities. The biological basis for our scientists in the peer published treatment method reviewed in the Journal of Translational Medicine:Stem Cell Therapy for Autism.

Which types of stem cells are used to treat autism and how are they obtained?

The adult stem cells used to treat autism at the Stem Cell Institute come from human umbilical cord tissue (allogeneic mesenchymal). These stem cells are recovered from donated umbilical cords. Before they are approved for treatment all umbilical cord-derived stem cells are screened for viruses and bacteria to International Blood Bank Standards. In some cases, we also utilize stem cells harvested from the patient’s own bone marrow.

Umbilical cord-derived stem cells are ideal for the treatment of autism because they allow our physicians to administer uniform doses and they do not require any stem cell collection from the patient, which for autistic children and their parents, can be an arduous process. Because they are collected right after (normal) birth, umbilical cord-derived cells are much more potent than their “older” counterparts like bone marrow-derived cells for instance. Cord tissue-derived mesenchymal stem cells pose no rejection risk because the body does not recognize them as foreign.

Because HUCT stem cells are less mature than other cells, the body’s immune system is unable to recognize them as foreign and therefore they are not rejected. We’ve treated hundreds of patients with umbilical cord stem cells and there has never been a single instance rejection (graft vs. host disease). HUCT stem cells also proliferate/differentiate more efficiently than “older” cells, such as those found in the bone marrow and therefore, they are considered to be more “potent”.

What are the advantages of treating with allogeneic umbilical cord tissue-derived stem cells?

• Because HLA matching is not necessary, anyone can be treated.
• The stem cells with the best anti-inflammatory activity, immune modulating capacity, and ability to stimulate regeneration can be screened and selected.
• Allogeneic stem cells can be administered multiple times over the course of days in uniform dosages that contain high cell counts.
• Umbilical cord tissue provides an abundant supply of mesenchymal stem cells.
• No need to collect stem cells from the patient’s hip bone or fat under anesthesia, which especially for small children and their parents, can be an unpleasant ordeal.
• There is a growing body of evidence showing that umbilical cord-derived mesenchymal stem cells are more robust than mesenchymal stem cells from other sources.

Dr. Riordan on the Umbilical Cord Selection Process at Stem Cell Institute

“Through retrospective analysis of our cases, we’ve identified proteins and genes that allow us to screen several hundred umbilical cord donations to find the ones that we know are most effective. We only use these cells and we call them ‘golden cells’.

We go through a very high throughput screening process to find cells that we know have the best anti-inflammatory activity, the best immune modulating capacity, and the best ability to stimulate regeneration.”

How are the stem cells administered for autism treatment?

The umbilical cord-derived stem cells are administered intravenously by a licensed physician.

Stem Cell Treatment: Autism *Protocols

Below is an example of a typical autism protocol:

• Treatment length (Monday – Friday): 1 week
• 4 intravenous infusions of allogeneic mesenchymal stem cell

Here is also a link to a study they have done /are doing on stem cell use with Autism:

https://www.cellmedicine.com/wp-content/uploads/2012/11/Stem-Cell-Therapy-for-Autism.pdf

Dylan's First 3 Years in a nutshell!

Dylan was born on a Wednesday in December of 2011.  He was induced just like my other children and everything went smoothly like the others.  Once I was at a 5, I dilated super quick and was ready to have him within an hour.  I remember thinking I can't do this much longer because for some reason the epidural didn't work as well as the others and I could feel tons of pressure.  He was our third child.  The nurse came and checked me and said we were ready.  I was so relieved!  We did not know what his gender was until he was born, so out came our handsome little Dylan at 7 lbs 7 oz and we were so excited to have him here!  He was the 7th grandchild on my side of the family, so my Dad deemed him the "lucky" child, because the three "7's"!
I did have Gestational Diabetes when I was pregnant with him, but other than that everything went as smooth pregnancy wise as it did with the others.  I do remember though there was a couple times when he was being held later in his first year that we noticed his feet and legs would look blue as if the circulation was cut off.  I am only writing this now because I just remembered and maybe that has something to do with what we are going through now, the reason I am starting this blog, AUTISM!

Our first two years went great with Dylan, and everything developmentally was progressing right on track.  He was our earliest walker around 10 1/2 months, he loved to play with his siblings, he would smile when I came home and be excited to see me, he was talking like anyone his age.  He was always "that child" that was going to keep us on our toes and the one I thought was going to be our most social child. He was also our BIG boy.  Brandon and I say that we don't really remember him as a baby, because he really didn't have a "baby" stage because he grew so quick.  He outweighs his brother that is a little over 2 years older than him, as of now 3/2015.  He is built quite husky and always has been.

Dylan turned 2 in December 2013 and was your typical little guy:

Then in March of 2014 he pulled over a really heavy barstool on his forehead.  It left a pretty good goose bump and even now 1 year later you can still see a little bump on his forehead where it was.  I just blew it off thinking "boys will be boys," consoled him and went on our way.  My Grandma passed away a week or so later and then in early April after her funeral, one day Brandon and I both noticed that he hadn't been talking as much lately.  When Brandon told me that, I mentioned I had actually called Early Intervention to have him assessed and in my mind thinking he was having hearing problems.  Brandon had tubes in his ears like 7 times when he was younger and it wasn't until he was older that he really could hear.  They said one day he was really surprised by the sound of the heater and that was when he was like 7? or something.  I had tubes once, so I really thought maybe his ears are bad.  The next day, I went to get him out of the crib and noticed the eye contact was very hard to obtain.  He had also been disappearing off on his own and we would find him watching shows on the Ipad.  Watching shows had just started in the last few months, which I am guilty and enjoyed that I was able to distract him with shows for a bit so I could get stuff done around the house for a little while.  After putting that together in my head and when Brandon came home from work that day, he started to play with Dylan.  This time he also mentioned the eye contact.  I told him I noticed it to and that maybe he was along the lines of Autism, but at the same time, I didn't really think that was the road we would be going down.  I really thought it was something to do with his hearing.

Right after pulling the barstool over

That weekend we went Easter camping and reality started to sink in. We were emotional to think we may be heading down the road of Autism and then to watch him around his cousins, one being a couple months younger, and see the difference in them was hard.  That was not our Dylan just a few months prior, he was now a completely different little guy.  He was playing on his Grandpa's razor(side by side), it was parked, and he tumbled out landing on his head again.  So now I stressed out and thought maybe there was really some damage done by the barstool and so we ran him into the ER to be safe.  The Dr just looked him over and said there was no signs of a concussion and didn't want to sedate him to do a scan.  He also said give him a year and he would be a completely different guy because we were also wondering if he was regressing due to the fact of having a new baby in the house.  We left feeling good, but still I was a little concerned.  I contacted our pediatrician and he ordered an MRI to put our minds at ease.  The MRI came back showing no damage so that was good, right?  The chiropractor later told me that and MRI of a living vs. deceased person would look the same, so now I don't know that I trust that finding.

For the past year now we have had speech therapy, occupational therapy and a play group through early intervention.  We have had him treated with a Chiropractor that has done ASA Balance(balance his body to accept things it wasn't at the time), adjustments, metal detox treatments.  Now he is enrolled in the school districts preschool program that is Autism based.  He started that in January of this year (2015), once he turned 3 and was done with Early Intervention. We started the home program with Brain Balance, but that just stressed me out with the nutrition.  They want you to go Soy, Nut, Gluten and Dairy free.  I am sure that helps, but it was too hard for the time being.  We have seen some changes in him for the better but they are not coming and staying all the time.  He was constantly getting naked at times and was a flight risk at others( one time within a five-seven minute time frame he was a block and a half a way) but luckily he has been better with these two things for the past several months.  But you always have to be prepared!  He constantly eats and we have to tie the fridge shut!  He sleeps in his crib with 2 mattresses on top to keep him in there.  He will use words occasionally but then you won't hear that word or any words for that matter for who knows when, but oh how I love when I hear a word!  I know the knowledge is in there, we just need to figure out how to help him get it out and keep it flowing!

He is such a sweet little boy and will at least give kisses on occasion.  I wonder sometimes if he may try and kiss his teachers because I usually ask for a kiss when I give him something and so sometimes he immediately is waiting with the kiss when I get him things, ha ha.  His second home is his Grandparents house!  They take him once a week or two and spend some time with him and gives us some time to focus on the other 3 as well.  He loves going with his grandparents and probably has more fun there and gets more attention then we are able to give him, so it is great for him and for us.  We each get a little time to recharge and prepare for what will come next!  And lets face it, without these grandparents we don't know how we would be able to handle this trying time.  It is a hard road to go down and takes lots of patience, which I have learned I do not have!  I am very thankful for these two because I don't know where we would be without them!

Here is a few videos taken throughout the year:

We have decided, with the help of his grandparents, both by finding the treatment and financing the treatment, to take Dylan to Panama to receive stem cells!    We also found a group on Facebook that has given me much hope that this is the road we need to be on!  They are a very uplifting and supporting group and have seen a lot of changes in their children that have gone there.  So here's to our new road we will go down in a couple of weeks from now!

Back Post # 10

This was originally posted on my family blog on 2/27/15, but I want to eventually print this out and pass it on to Dylan so I figured these posts would be great to include here as well.

Autism Spectrum Disorder

We can officially say that Dylan is on the Autism Spectrum.  We finally gave in and had him "labeled."  Something I was hesitant to do, not because I didn't want him to get the help, but for medical reasons in the future if we are able to get him to a place where he doesn't really show many signs of Autism.  My Mom has said with her depression that she feels a Dr sees that on her chart and automatically treats her according to that diagnosis, even if it should not factor into what she is there for at the time, and I don't want that for Dylan.  I don't have a problem with him because he has Autism, I love him just the same, but it is tough.  A different tough than I planned on with him just a year ago.  I thought he would be our kid that kept us on our toes, was very social and full of life, but last April he took a completely different course and I am determined we will find a way to help him out to get him back on the original track!

I decided to give in and get the diagnosis because we are looking into Stem Cell Therapy in Panama and they need a diagnosis to accept him.  Lori has been asking us to look into this pretty much since the beginning but I was very skeptical of it because it is a lot of money and out of our country.  After trying several things with the chiropractor, which I feel have helped a little, and Brain Balance, which we feel he is too young for right now, I feel that this would be a good option to try.  Lori had talked about Ethan and Ken's story she saw on Youtube so I watched those, but felt they could just be editing it to look as if it helped them but maybe there was something they weren't showing  you, just trying to get your money.  Then I found a page on Facebook that they started, that is like a support group of Stem Cell Therapy for Autism.  I joined that and have learned so much and can see these people have done their research.  Not only the original parents of the stories Lori was following, but a hundred other people.  It has been amazing and we feel comfortable doing it so we are now waiting to get the approval and set up our first visit!  Most of them plan to go several times.  Ethan went 4 times and Ken went 5 times and they feel they are almost recovered!  They were a little older when they went so hopefully getting Dylan young, we see improvements quicker and don't have to go as much!

While we were at Dr Knochel's office(the Dr that diagnosed him because Dr Paxton referred us to Salt Lake and would be $1000 to get a "name") and he was looking through Dylan's paper work from the District and Early Intervention and observing him as well, I didn't feel worried about what he was going to tell us.  I knew we were walking out with the diagnosis, there is no denying that.  I also know I feel very comforted in knowing that this is not how Dylan will be his whole life.  There is more to him and I am not just accepting it and moving on.  He may never be completely "cured" but I know we can get him to a place that he will communicate and be able to live a mostly "normal" life and we ARE going to get him there.  I have never felt like this is him and he will be this forever on this Earth.

I still believe the Drs are here to take care of our children, but I don't know that I completely trust them like I have up until now.  I do not believe this was brought on by vaccines, but I feel lost on what to do going forward because IF it had something to do with it then I could not live with myself if when getting his final shots, it sends him down again.  It also makes me a bit nervous with Desi because I just could not imagine this with her too.  It also makes me lose all trust in the FDA, because if stem cells work and they "know" this but are trying to keep it from the US because all the money they would end up losing, then what else are they hiding.  You think you live in a safe place but then something like this happens and your eyes are opened to so many possibilities that it is scary to think that could be the case.  Whatever the case is,  we are not letting it stop us for the fear that it is not "FDA approved"  I have seen many stories now of where this has helped and people have gone to this clinic in Panama and they are safe.  We will try this and we are very hopeful that it will help our little Dylan.  We will be that source of hope mentioned in his blessing and we will be another story for people to see and give them the same hope that we once had.  I love my little guy and I just can't go through life accepting that his fun little personality is no longer him.  We will find that once again!

Back Post # 9

This was originally posted on my family blog on 1/5/15, but I want to eventually print this out and pass it on to Dylan so I figured these posts would be great to include here as well.

Dylan's first day of Preschool!

Dylan started preschool today!  He is going to Spring Lake Elementary preschool that is geared towards autism.  We feel blessed that he got into this program because there is only two in the district and about 8 kids per class and many more kids that could benefit from it.  My old college roommates Mom is the teacher, Sherry Heelis, and she too has a child with Autism.  I think he was the first person with Autism that I ever met, so things seem to be falling together.
Dylan was so excited to get on the bus and seemed to enjoy his day at school!  We are just going to let him go half a day for a while to get him adjusted and then he will start going as if he was in the first grade, all day!  That is a long time to have him gone, but I am glad to know who has him and I know he will be taken care of.  Plus I know they will be much better at helping him, then I am doing, so that is where I know he needs to be at this time!

Back Post # 8

This was originally posted on my family blog on 12/27/14, but I want to eventually print this out and pass it on to Dylan so I figured these posts would be great to include here as well.

Brain Balance

JoDee saw a commercial in October about a place called Brain Balance that had opened up in Pleasant Grove.  She said what she read about on it sounded like Dylan so we should check it out.  I looked up the website and emailed them.  The lady called me back and is so passionate about it.  She has two sons on the spectrum and had tried everything ABA, hyperbaric, extreme stuff and she found this back East and said this is what has worked.  We went up for a meeting and they evaluated him.  Where he is younger than most of their clients they weren't able to do some of the stuff, but they said he is Left Brain dominant so he has a Right Brain delay.

They focus on primitive reflexes and there are 8 that should drop off mostly within the first few months to year of life, but in these kids for some reason they haven't.  All his are still very much there:

They have a home program which we are doing now where you do these exercises to build up the right brain and are to avoid left brain activities.  The exercises are things like having him follow things with his eyes but not moving his head, moving his body a certain way so it is making both hemispheres work together and then they also say you need good core muscles so we are doing situps and pushups too.  They also gave us a bag full of containers that have certain smells that stimulate the right brain and a cd with right brain music to listen to.  We are supposed to do these 3 times a day, but typically get at least 2 in because it requires Brandon and I to be home and do it together since he is young and doesn't know how to do it on his own.

The hard part of this is along with the program comes nutrition!  They say that you need to be Gluten, Soy, Dairy and Peanut free.  Since that is such a big change, it is something we as a family are going to have to all adjust to.  I have stressed and yelled and screamed at Brandon so many times on this one, because we have picky children(mainly Brielle) and I have no idea what to feed them.  They have given us several recipes and I have found several but I feel like I am feeding the garbage can more than my family and it is expensive.  I don't know how long this is going to go on because I am not doing good with it.  The chiropractor we are taking Dylan to said his body is not having a hard time with the food, so we shouldn't have to really worry about going to crazy about it.  I sure hope he is right, because I am about to give up on this part of it.  But I just don't know what to do!  I want to focus on getting the kids to at least eat more veggies and fruit at least because I know we eat like shit and really do need to change our ways, but it is super hard!

It is now the end of December and we have seen some changes in him so I feel that it is working, but December is a busy month and Brandon has been working longer hours so we have slacked super bad with both exercises  and eating, but hopefully will get back on board in January.  Once we have him to a point that he would be able to go to the center and sit for periods of time and follow their lead, they have a different program to help him.  That also costs another $4500 on top of the $1500 that we have already paid.  It gets so expensive but if it works, then I will do it!  We are also lucky, and extremely grateful/appreciative/will never be able to express how much it means to us, because Brandon's grandparents have been giving us money to try these things on Dylan.  Words can not express what that means to us!  Dylan is one LOVED little boy and has a whole army behind him!

Back Post # 7

This was originally posted on my family blog on 12/14/14, but I want to eventually print this out and pass it on to Dylan so I figured these posts would be great to include here as well.

Dylan is 3!!!

My handsome little big guy is 3, holy cow!  This has not been the easiest 8 months of his life but he is such a great kid and we can only hope things get better for my little Bubber!

8 1/2 months ago, I didn't expect him to be somewhere along the Autism Spectrum but that quickly changed in April and now this is where we are at.  He has pretty much lost all his vocabulary but will occasionally say a word here or there.  I know it is in there, we just need to figure out how to get it out and keep it coming!  For the most part he understands what you are telling him, I just think it is a matter of him wanting to do it.  We have quite a few different approaches that we are going to try and help him because I am convinced I will find something and I will get my little boy back!  I love this little guy and I am not about to just accept that something flipped a switch and this is how he will be the rest of his life.  If it is I will still love him just as much and we will learn to understand and help each other through time, but I just don't understand how he can go from one extreme to the other so quickly with nothing traumatic causing it.  I say this is the cruelest condition out there, because you see his cute little personality and fall head over heals in love with it and then bam!  Don't get me wrong, I love him still, but wow talk about a punch to the face.  I remember specifically thinking several times with him, "I don't have to worry about autism with him."  WHY would I worry about Autism?  I guess because Jake's son Deegan is on the spectrum and so I knew it could be a possibility in my kids, but not Dyl.  This being said, I have seen improvements in him in the past 8 months and so I am still hopeful that we have got him help early enough that we will pull through.  They say Early is key and that is what we are working on!

He has also been accepted to a preschool in the district that will be 5 days a week 5 hours a day and is Autism based.  He starts that the first part of January!  My old college roommates(Heidi) Mom(Sherry), will be his teacher!  When we went to the meeting and I saw her, that was such a big relief to know that I knew who would have him and be with him for that long.  She too has a son with Autism that is 26 and he is probably the first person I had ever met that was Autistic.  Brandon said that is probably why I met Heidi, everything definitely feels as if it is falling in place now.  I know she will be a great teacher and he will be in good hands!

I wish I had more to say about Dylan but right now this consumes us and there isn't much more to be said.  Other than he is my son, I love him more than he will ever know and I would gladly take this from him if I could!  I am not saying I need him to be completely cured or anything because I know we all have to have our trials and we need to learn from them, but like I said this is cruel.  I am sure he is just as confused as us and wants to express himself to us like he used to, but can't do it anymore and is frustrated, but he handles it pretty well!  He is my hero!  Carl gave him a blessing a couple months ago and in it he said that Dylan would learn to communicate with his parents, that is all I really need.  I need for him to be able to speak with me and communicate.  I am fine if there is "different" things about him and he is not "normal" but I need to hear that cute little voice again!  The blessing also mentioned that he would give others hope, I am also holding on to hope.  HOPE that we will find something to help him and the hope others in the same situation can turn to.  I am not giving up hope and will continue to fight this fight for my little guy, as helpless as I feel, just keep fighting!

I love you Dylan and look forward to the rest of your life and watching you grow!  You are a tough little guy and I know you are going to be just fine, no matter what!  Like I tell you all the time, if you don't know anything I just need you to know how much I love you and that is all you need to know!

Back Post # 6

This was originally posted on my family blog on 12/11/14, but I want to eventually print this out and pass it on to Dylan so I figured these posts would be great to include here as well.

Grandpa Rick and the World Team Roping Competition

Rick took up team roping a few years ago after having a long break, he did it back in high school and a little after I think, but has been doing amazing from the start.  He has done quite a few competitions and always does a great job.  I tell Brandon to find out when he is roping so we can watch if he is up this way, because I think it would be fun and the kids would love it!  Well he qualified to go to the World Team Roping Competition in Vegas this year!  I got a call from Lori and she said that he made it to the final round and it would be streaming online, so I found the website and got it set up so we could watch it!  As they started coming out and across the arena I was trying to find him and when it was his turn I yelled to Boston.  Boston had already noticed him and was waving away!  I thought that was cute to see how excited he was!

Rick was in the middle of the pack and would be going around 20ish out of the 40 remaining teams, so we just kept watching!  I couldn't believe how quick they run them through.  I am sure if you have any sort of jitters, you aren't going to do well, so the mental preparation is just as much as the physical act of roping the cow.  I can't imagine waiting and then before you know it you have gone, crazy fast.  There he was, Bos was so excited!  He went, he caught and then his partner caught, they were in 1st place!  Woohoo, amazing!  So much fun, when you know the person!  He held his 1st place spot for about 5 or 6 people I believe, but then got kicked down.  He ended up taking 10th place, which is amazing considering to begin with I think Lori said their was something like 400 or so teams!  10th place that is amazing!

I figured Rick wouldn't have his phone on him, but I thought it would be a fun surprise for him to have a message so I told Bos that we would call and leave Grandpa a message.  I was surprised when Rick answered and let Bos talk to him.  He told him we watched him on the TV and that we knew he took 10th place!  Rick told him he won some money and Bos said, "Yeah I saw you took 10th place!"(in his excited Bosty voice)  Brandon later found out that Rick called Lori right after and it really meant a lot to Rick to hear from Boston.  I am glad it worked out that way!  Rick walked away with around $23000 from this little gig and do you know what he chose to do with most of the money!  Well he bought him some nice boots and a nice jacket!  But do you know where the majority of his hard earned, well deserved money went, to my little boy!  He told Brandon he had made a deal and was roping for Dylan!  If he won some money, it was going to him to see what we can do to help him!  $15000, he gave to his 3 year old grandson!

Rick and Lori have been nothing but our lifesavers on many occasions and in many ways with Dylan.  The most important way is through Love!  They have taken Dylan one on one and spent some quality time with him.  No it is not easy at times, but they do it because I know they have nothing but love for the kid!  I have had to learn to step back and allow them to take him a lot, not that I don't like them spending time with him, but I just hate having my kids gone.  I am a stingy Mom and like my kids with me but I like to complain that I have no time to myself too, funny how that works.  I have come to accept that I can not do this without their help and it is ok to let my kids out of my sight sometimes!  I also need a break to reboot and be prepared for what the next day may be like too.  Lori can't come to our house because Dylan sees her and is pulling her out the door!  He doesn't even let her in the house pretty much ha ha.  When Rick has came and picked him up for a sleep over, Dylan smiles from ear to ear and couldn't be any more excited!  What better place then to be with Grandparents any way, right?

I was talking to Lori one day and was telling her how I was sitting by Rick's phone when it rang one day and looked over to see my little boy as his wallpaper cover on his phone.  I know they love every single one of their grandchildren and would do anything for anyone of them, but seeing that picture and Dylan being the one he chose to put on there, I knew that he is the one that is on his mind!  That meant so much to me to see that and brought me to tears that day.  Lori said that Rick is constantly talking about Dylan and wondering what he is doing that day and I know Lori is the same way!  My children are spoiled rotten with these Grandparents!

I am not one that is able to express myself, but really how do you tell someone, your child's Grandfather, your Father-in-law, how much this means to you?  Not only the money, because yes the money is a big deal and has great potential to help us find some help for Dylan that we wouldn't be able to do on our own, but the amount of love, time, thoughts, prayers, everything that they have done for your child!  I know it is his grandson and so of course he means a lot to him, but I know Dylan has a big piece of both their hearts!  It is heart braking what my little boy is going through, but with all this love and support that we have from them and Brandon's whole family and my family I know things will be ok!

To Rick and Lori, I know I do not express my appreciation very well, your son will tell you I am much better at pointing out what isn't done than what is done, but I have nothing but love for the two of you!  I have married into a wonderful family and am proud to be a part of it!  I will never be able to repay you for anything you have done for my family, but I know my children are very blessed to call you there Grandparents and me to call you family!  I appreciate everything you have done and I know without you guys we would not be able to make it through this! Thank you for being there and being such a big part of Dylan's life, without you I have no idea where he would be or where I would be, because without you taking Dylan I would probably have lost it by now(not saying I don't have my moments)!  THANK YOU, THANK YOU, THANK YOU!  I love you two and hope you know that!