Stem Cells Update

We have been overwhelmed the past two weeks with all the love and support for Nolan since he received stem cells! People have asked lots of questions and we welcome and love that! So here is a little info and update!

How do stem cells work? How can they help Nolan?

-Stem cells are attracted to inflammation in the body and once injected begin to make their way to these areas. Once there, they begin to heal the inflammation. There is no way to know where they will go first or how much they will heal because every person is different and so is their body. Nolan has inflammation in his gut and brain because of a genetic mutation he has that makes detoxing foreign chemicals very difficult. Things like pesticides on food, preservatives in vaccines, and chemicals in cleaning products and laundry detergent, are a few examples of things his body has trouble getting rid of. Because of that, he has inflammation that causes a load of problems for him such as speech problems, problems with awareness and focus, hyperactivity, sleep issues, stimming, and more. A lot of these are symptoms of autism and we are by no means trying to change who he is. Our only goal for Nolan is to be happy, independent, and able to function in the world and be comfortable doing that. The more we have treated inflammation in his body the happier and more functional he gets! Once we learned what stem cells can do, we had to at least try. The worst case scenario is that we have zero results.

Have you seen any progress yet?

-We aren’t expecting to see any changes in Nolan from the stem cell treatments for a few months. The doctor told us we may see small things here and there within the first week but don’t be surprised if it takes a few months. Most families that we’ve talked to see the majority of changes between months four and six after the stem cell treatments. It’s hard to know right now whether something is the stem cells or just coincidence. Here are a few things we’ve noticed though:

-Saying things on his own that he only repeated in the past like nana, papa, baby cat, baby elephant, and more!

-I took the kids to the pool the other day and when we got in the car I said, “we are going to Nene’s pool!” and Nolan looked right at me and said, “papa.” I told him that papa doesn’t have a pool and he said, “papa’s house.” Of course, I cried and freaked out because he’s never verbalized what he wanted like that before. Of course, his Papa loved that too!

-He has been holding our hands... which sounds pretty normal, but Nolan has never done that. He just sits by me or Hunter and holds our hand. He even held someone’s hand in his Sunday school class at church!

-He seems more aware and able to focus on what’s going on around him. I can’t really explain this... it’s just something you have to see. He’s usually in such a hurry doing whatever it is he is doing but sometimes he slows down and really engages with us and that is very new!

-At school his teacher gave him some work to do writing his alphabet. He can write it, but it is wrong a lot and you usually have to tell him or do hand over hand each letter. This time he just took off. Thank goodness she was able to grab her camera and make a video because I wouldn’t have believed it!

When the stem cells die off after six months and stop working does his progress go away?

-No, it doesn’t. The stem cells are sort of like medicine for the inflammation he has. So, they heal what they can, and they are done, and you are left with the effects of that. If you do see progress from the treatments, you choose to go back again. They recommend between 6-12 months after your treatment but after 12 months is okay too. We met families while we were in Panama that were there for the 2nd, 3rd, or 4th time. Each time they saw more progress in different ways! Of course, we hope to see good progress and go back but we are keeping an open mind and trying to be patience and wait.

Are there any negative side effects?

-Yes and no. There are no long term side effects to receiving stem cells. However, it is possible for him to have flu like symptoms and/or extreme hyperactivity during the six months that the stem cells are working. Most families we’ve talked to experience this around month three or four and they say it can last a few weeks or a few months. All of their advice has been to hang in there and push through it because it does end, and progress is on the other side of it. It is seen as almost a regression because things like irritation, night waking, excessive stimming, and major hyperactivity are seen. I have talked to a few families that didn’t have any experiences like this, but several have. We are prepared if it does happen though!

We are always open to questions, and I want to say thank you again for everyone who has been praying for Nolan! He did really well with all the travel and his first plane ride too! Hunter is not looking forward to the traveling I’ll be planning now that we know Nolan can handle flying now! Ha! I’ll keep posting updates frequently because it’s not just our journey anymore! I’ve always been open about our world with autism because hearing other’s stories helped us so much and still do!