Panama Round 3!

We decided spur of the moment to try stem cells one more time and this time my Mom came with us.  The sucky part is that almost 3 of us can fly out of Vegas for the price of 1 ($430 compared to $1130) so on top of the already long journey we add on to it, but saving money is worth it, right?  Since I don't know the language as good as I should, I get nervous really exploring so we stick to  the area that we stay for the most part.

We did go to the Panama Canal and just missed seeing a cruise ship go through but did see a smaller cargo ship go through.  Dylan was not used to the heat and humidity so he was not really behaving too well so I tried to let my Mom experience it a little bit.  We were going to go on a tour where you go to the jungle area and monkeys climb on to your boat, but the weather was not the best this time and then they cancelled it because they said the monkeys don't come out in the afternoon as often.  That was probably for the best because I don't know if Dylan would have sat on the boat as long as we were going to be on it.  November is their rainy season and that was very true this time around.  We had a lot of rainy weather!  Other than that our exploring was the local mall and then we took Uber to an even bigger and fancier mall once.  I almost forgot, we did make it to Casco Viejo this time, a really old part of Panama, to look around.  They are in the middle of remodeling the area and making the old look new but in an old way.  I think basically for tourist and to draw them in.  The sad part about that is the buildings, if I remember right, have basically been passed down from generations but with this rebuild I heard it is really expensive so I am sure it has pushed a lot of people out of what has always been theirs.   It is really fun to look at all the architecture though! It was fun having my Mom come along and share this experience with us!

They have changed the procedure a little bit since we went the last time and it is now very convenient because you stay at the same hotel that the office is located at.  We were able to meet several different families there for Autism and hear their stories.  When we first got off the plane and went to the lounge a lady could tell what we were there for because Dylan was bouncing off the walls.  Her little boy, Truman, was coming back for his second treatment too.  She said last time he could only say one word and now, I honestly had know idea he was on the spectrum.  He was calm and talked.  We saw them eating breakfast throughout the week and talked a bit.  We met a family from California that was there with their son, David, who is 14 and here for the first time.  They have done several different things with him prior to this.  They were our favorite and we will be keeping in touch with them.  David has a great memory and when we saw him at breakfast the second day, my Mom thought about saying Hi to him but we weren't sure if he would remember.  We started talking to Ivana, his Mom, and he came running up to my Mom and called her by name and gave her a hug.  He is a funny kid and we just loved him.  He quizzed me pretty good on my knowledge of the Disney Princesses and Villians, but I don't know if I did to well, ha ha. I have spoke to his Mom since we got back and she is noticing more awareness in several different areas so far.  There was a couple different bellboys that we got to know, Luis and one other but I don't recall his name.  They were always quick to come talk to us and just loved Dylan.  We saw several other patients eating breakfast that you could tell was here for different reasons like MS.  I enjoyed this set up more so you could actually get to know people!

As for the treatment,  Dylan is completely different since the last time and no longer requires being held down!  We saw Dr Diez again this time.  His labs looked good except allergies were a little triggered.  Last time he got 36 million stem cells, this time with the new protocol he got 60 million (60.6 to be exact)!  The infusions went well except the second one.  He got a little squirmy but nothing to bad so they had to poke him a second time.  When they did that in the wrist, for some reason blood would come out but could not push anything through.  They tried again in his other arm but it wasn't working.  They brought in another nurse to help out and was able to get it in the 4th time.  They said that was really strange and had never seen it before.  After that because they felt bad and didn't want to go through that again, they just had the 2nd nurse assist them the rest of the week.  The last day they almost had it all in but then his vein started refusing it because that was the one we used most of the week, because it is his best, so they had to poke him one more time to get the rest  in.

Our second visit, first infusion, we had a different Dr and I am glad we did because he mentioned the APEX clinic in Florida that he has seen good results with from some of his patients.  He told me there was a patient of his that had come to the clinic a whole bunch of times and he was starting to think that they weren't going to get any further with him, but he came back and was making small sentences, so he asked the Mother what she had done.  I had an idea who he was referring to because on the Facebook group there is lady that has take her son like 10 times so I wondered if that was who he was referring to .  He said this clinic has called Panama and wondered what their protocol was because he has seen more improvement of his patients that have also gone to Panama.  I am obviously interested in pursuing this option more!  I called this clinic and found out it is a personalized daily program that helps reconnect neurons and is used with a lot of stroke patients.  He gave me a number of a mother to call and she said this is the best treatment she has done so far.  She has been with them for 1 year and plans to keep with it for 3 years.  The funny thing is that this is the same patient that I am pretty sure the Panama Dr was talking about.  It was good talking to her personally and i found out she has gone to Panama 13 times, wow!  She said each time they saw improvements, but her sons gut and immune were in a really bad place so like Dylan it has been more internal improvements.  So now I really want to give this Apex a shot! Maurice that I spoke to there said, with the info I gave him about Dylan, that he thinks we would be looking at a year of treatment.  Great, right?  That only comes with a almost $40,000 price tag!!!!  I am determined that it is going to happen though so I may be looking into finding a job soon.  Problem is, it would have to be night because between getting kids to where they need to be, then I would be working with Dylan and this program for an hour in the morning around 9-10 so a day job really wouldn't work, so we'll see, that just may be my new adventure!!

You meet amazing people.  This is Ivana throwing Dylan into the pool.  Her and her husband, Tex, were amazing!  They were here with their son, David.

David and my Mom

Lab Results prior to stem cells

A little Update

So we have(or me ha ha) to take Dylan back to Panama to give it another shot.  I just felt out of the blue last month that I needed to take him and take him soon.  Brandon had mentioned it a couple months ago that maybe next year we should try again, but nothing more was really talked about.  I told him last month that I felt we needed to go and so he said that was fine to call and see when we could get him there, so we leave on Sunday for our 3rd round of stem cells!  We are still doing Dr Goldbergs protocol and seeing small changes and plan to continue that still as well.  The last time I talked to Dr Goldberg the labs weren't looking so good, so we are trying to be better with the eating, but that is a very hard task. I feel that hopefully we have his  body in a good spot and under control now that maybe the cells will have the ability to push through and we will see more this time, fingers crossed!

We now take him to speech twice a week and several technicians at his school have said they noticed he is attempting to say more and making more noises.  The speech therapist wants us to get this device that will sit at the top of his mouth(hugging his mouth like Brielle's retainer) and has dots on it that will help him to learn where his tongue goes when making certain sounds.  I need to call the dentist and see about getting an electronic image of his mouth so we can move forward with that as well.  We here words here and there like: Bacon, water, yeah, he signs candy really well.  The other day we were at Walmart and Boston was pestering him to say words.  All of a sudden we heard, "Leave me alone," but it was all jumbled together but definitely sounded like that, not once but twice!  Later that night when Brandon went to brush his teeth and get him off to bed, he said it again and this time grabbed hold of the door frame so that Brandon couldn't get him through the door.  We had to laugh, with excitement of course!!  So anyway, here is a little update and lets hope and pray that stem cells will add more excitement in the progression of Dylan!

Dr Goldberg Followup

I spoke with Dr Goldberg yesterday and things didn't go as well as I had hoped.  His lab results came back not so good this time and his ANA is back and at high levels, so we need to really focus on his eating.  I have been horrible lately and so will make a better effort because maybe that really is the key.  Dr Goldberg does not like ABA therapy and therefore the school we have him going to is not on his ok plan.  I have not completely told the truth about what school he is in and told him we have him in an Autism class.  He wants him out of that and into a multi disability class because they actually try to catch them up in that class, in his opinion.  To say I am a little stressed about this is a big lie, I am a lot stressed!  Dylan seems to love his school and the people love Dylan!  I do have my concerns and plan on pulling him out by next year for sure because they do not focus on Academics at all.  They also don't have a speech therapist on site is another strange thing but we have him going to a speech therapist too.  I called the district and Kindergarten would only be half day, so that has me all sorts of confused on what decision to make.  When I talk to Dr Goldberg at the end of October he plans on me having switched classes, so I don't know what to do and need to figure this out fast.  Or continue to fib for the school year and get him out and into the class he wants him in for first grade(probably what I will do).  The reason he does not like ABA is because they "refocus and redirect" which down the road leads the kids to believe they can not do anything right and will have internal issues down the road.  I totally understand that but I feel the way this school does it, doesn't make him feel that way, but to Dr Goldberg ABA is ABA and he hasn't really given us the chance to explain how they do things.  So I guess only time will tell.

We did increase his Tenex a couple weeks ago and after the call increased Lexapro.  He seems to be attempting more vocal sounds with us, so once again, time will tell.  If we could get him talking, I would for sure be willing to pull him out and get him back to the district, but I fear where he is now, they will put him in a really low functioning class and I don't see how that would be more help than where he is now!  Parenting is hard, but special need parenting is hell somedays but I know it will be worth it in the end!

More updates

Again, I haven't posted in a while but I am here and we are living the life and it is great, stressful at times, but great!  We are still working with Dr Goldberg and are seeing small but good things!  We have been slacking with the diet and I need to get better at it.  At this point, I am going to focus on the no dairy and we will try our best with the rest.  It gets so hard, especially when he only eats certain things.  We now have him on Valtrex for the herpes virus, which a couple months ago Dr Goldberg said the labs showed that was under control and now to keep with it.  He currently has 3/4 a tab in the morning, 1/2 afternoon, 3/4 in  the evening of a 500 mg tablet.  He is on 1/2 10 mg tablet per day of Lexapro, to help regulate the brain more or less. We have him on  Tenex to help with the focus and attention span at 1/4 1 mg tablet twice a day.  We may up that a little bit in the next week or so.  I like this approach because it is low doses and I don't feel that he has turned into a zombie.  In fact today when I dropped him off at school, a tech that I have never seen before came to the car extremely happy.  She asked if I was Dylan's Mom.  She said that she absolutely loves Dylan and is beyond excited she gets to work with him today.  I get told that quite frequently and it makes this Momma heart so happy to see that he brings joy to everyone he meets.  Why do I mention this now, because it shows my son has a personality and one that EVERYONE loves.  With the regression being as hard as it is, I am very thankful his personality(the little stinker he is) continues to shine through!  We did more lab work last week

and will find out more at the end of the month on the results!  He has came a long way with blood draws.  We have gone from having 5-6 people hold him down, to him basically doing it himself ha ha.  If you notice he is holding the rubber strip to tie around your arm.  He grabs it and wraps it around his arm and waits.  This time he touched his arm after they cleaned it off, so the tech gave him a new sterilized pad and he wiped his arm as well.  That in my book is a major WIN!

As for school, he is loving it!  He is normally very happy to go, except the occasional, I want to stay home and watch TV days.  I regularly get told how much they like Dylan from all sorts of people and I can tell it is genuine. I have to lie to Dr Goldberg about where he is going because he doesn't like ABA but the way the school does it is not the normal boring(punishment as he calls it) way and it is not affecting his happiness and willingness to learn so for now he remains.  I am a little bothered by the fact that they have no education teaching and focus only on life skills, so I don't think it is a long term facility for what I believe Dylan deserves, but for now we love it.  

At his IEP type meeting(I forget what they call it) they have been impressed with how he is working on his goals and has passed several and close to passing more.  They also did this testing that they should have at the beginning but didn't that had me a little sad reading through because, wow, it made him look worse off then I realized.  I know he is no where near where he should be but I feel good about where he is so seeing that was hard.  They did say though that he is doing pretty good considering where it shows him, so that made me feel a bit better! They added some home goals for us such as:  Using his AAC Device (Cough Drop app) at home to get his needs met and also help him communicate more efficiently, Using positive statements instead of "don'ts, Use antecedent based strategies.  The one thing here is being an Autism parent pretty much makes you all kind of therapists that you never went to school for and have no idea how to implement all of this stuff.  Yeah, I magically know all this stuff and yes I will do it at home.  We can only do our best and that is what we are doing!

I got after Brandon the other day because we have not really worked with Dylan much on our own time.  To give ourselves credit, we are a crazy busy family and it is hard to really want to fit it in.  However, for the past 3 weeks we have started Dylie School!  We have made our own little school room, in the computer room, where we work with him at least 30 minutes a day on the basics like, colors, letters, sounds, shapes, patterns, etc.  My goal is to try and get him up to level on Preschool/Kindergarten and get him back in the district next year. I don't know with the way his birthday falls and him already being one of the older ones if they would allow us to hold him back, but if that is a possibility maybe we could do that.  Dr Goldberg did mention that he is ok with a Special Needs class just not the Autism Only class, which makes sense to me.  In the Autism class they are more working on life skills and not focusing on them getting better and catching up with his peers where a general special needs class does more catching up on education as well.  So we'll see, but hopefully we can get him there!   

So in a nutshell, and in my limited amount of time to catch up, here is where we are currently.  Just keep swimming, just keep swimming translates to just keep working, just keep working translates to just keep living, just keep living translates to just keep surviving, just keep surviving translates to I will do whatever I have to to help Dylan out and hope anything I do will help him in the most positive way!  I love this boy and I am beyond grateful that he is my son!  I love you Dylie boo!

Phone Consult #1

We started Dylan on Valtrex a couple weeks ago and things have been going pretty well.  He has seemed a little bit calmer and attends to activities at school for longer(5-10 minutes) periods of time seems to be a constant thing we are being told!  We didn't see any die off affect like Dr Goldberg says could happen, so we will hope that is a good thing!  We had our first over the phone appointment with Dr Goldberg the other day to discuss his lab work and our next step of treatment.  We are going to start him on a very low dose of Lexapro on Sunday(like 1/8 of a 10 mg pill, low. Then the following week we will up it to 1/4 a pill.) I am a little nervous because we could see a regression or something and I just don't know how it will affect him.  The pharmacist said it could also make him tired or make things worse(I think she was thinking more along the lines of depression not knowing what Dylan is using this for, so I just have to really watch his mood and guess how he is feeling since he doesn't talk.)  This medication in Dylan's case should help to activate his temporal lobes and get the whole brain begin to function correctly. I am hoping since it is a very low dose that it will not affect him to negatively, but then again it could cause a huge surge in the brain that hasn't been working and be a bit overwhelming, so we are a team and going to help him through the best we can.

He wants us to really focus on a 3-4 year old level teaching and work on shapes, colors, numbers, etc. by pointing out those either in a learning setting or just when we are out and about and have him point things out  for us.  As far as speech goes, we really need to focus on Early Oral Motor Skills because that is where he is going to relearn everything that has been locked away and needs to be retaught to bring it out!  We also need to give him pep talks and help him to really understand that it is not him that is at fault for  having not been able to function properly but the illness that has consumed his body for the past 3 years.  Dr Goldberg believes these kids are really down on themselves and blame themselves for what has happened.  This goes along with what we did when we did the Energy Work, which a few things with this treatment really goes along with what we learned there as well.  I am excited and a bit nervous to see where we are in a week or two with this medication!  He has been in a pretty good place and been pretty happy and content for the most part, that I hope we don't have a huge downhill slide, but if I can get my little boy talking I will do whatever I have to!  He deserves the best in life and I am not just going to let it fly by!  I will keep pushing with him and we will help him!  I have never felt that this was Dylan so I may be crazy but we are on a mission and we will find the answer!

Here is a few of the labs we went over, but it is just from my chicken scratch and I don't necessarily know what they all mean but maybe one day I will read more into it and understand more!

CD4 is good
CD8 is good
NK Cells not bad

Allergies 2%
Basal Bills 1%(grain based) 0% normal
Chemistry and Imoglubins were fine
Another test, but I didn't catch the name indicates No Celiac so that is why the Paleo type alternative flours wouldn't help him

Herpes 1 (Cold Sore) High
Thyroid Normal
HHV6 Elevated 6.23
Herpes IGM- Positive should never be in the body
ANA- Positive Very High ( This is the Anti Nuclear Antibody where your body is basically making mistakes and attacks the immune system, i think)  This is a main problem from my understanding

They are sending me the Food Screen results but the way he sounded is that Dylan's look very good, kind of like Dr Joe said that food is not his problem, so that goes along with that as well.  He did say to make sure and stay away from Kidney Beans!  We still need to watch what he eats and stick to the diet to give his immune system the proper support and rid it of anything that could attack it so that the medicine can do it's job and attack and get rid of the virus.  We will talk to Dr Goldberg again at the end of June and go from there!  Wish us luck!

Dr Goldberg

I haven't posted in a while because we have been at a standstill.  But don't worry, I haven't given up!  I know some may think of me as a crazy Mom, but when you just know there is something out there to help your son, well... you'll do anything!  I just can't give up on him and we are given that Mother's Intuition for a reason, so I will follow that as long as it tells me to.  So here is what we are onto now:

I have been watching this set of Triplets(according to their Moms posting on the Stem Cell Group I am on) about how this Dr Goldberg has done wonders for them.  The Mom says that they did not talk until they were 4 and had been on his protocol for a bit before they started, and are now 7.  She did stem cells once after starting Dr Goldbergs protocol but she says Dr Goldbergs treatment did the most for her sons treatment.  One of them she says is completely recovered and the other two are about 70%, so I finally decided to give it a go.  Mainly because he does a SPECT Scan which would show in depth what kind of damage that barstool could have actually done on Dylan's brain.  We had the Spect Scan on Monday April 16th and met with Dr Goldberg on Thursday April 20th to give them time to read the results.  We had prepared the scan group of how strong Dylan was and their professionalism and preparedness showed us other wise.  That was the smoothest procedure ever and Dylan didn't even put up a fight!  We were there the whole time while they did the procedure and I have to be honest, it was a bit nerve wracking!  At one point that anesthesiologist seemed a bit concerned about something and they weren't finding the solution quick enough for her liking, but she was holding Dylan's head back the entire time and listening to his vitals so I knew it would be ok, but as a parent, it is better to not see that, ha ha.  This procedure took about an hour and a half and then we were done until Thursday.  They were seriously amazing and I knew my little boys safety was in their best interest and they would take great care of him!

Thursday we met with Dr Goldberg to go over the results.  He is an older man and very educated.  He is actually a pediatrician but when his wife got sick and no one could find answers he started looking into different causes and found some connections to Neuro Immune Dysfunction, which he believes is what most of the people that are labeled with "autism" have.  From my understanding and maybe I am wrong, but what I got out of Dylan's scan results is that the barstool some how triggered his brain to shut off and protect itself from this virus type thing(a herpes virus) somehow.  He finds it hard to believe it was the one blow that did it, but possible.  He did mention something about ADHD possibly, and I said oh I am sure he had that, but that was Dylan and nothing I was concerned about.  Other than that we can not think of any signs before the barstool.  Anyway, his brain has been shut off at the temporal lobes and is still getting connections in the cerebellum(lower brain) but not seeing any activity in the frontal lobe(which if I remember correctly is big with speech, or the lack of in our case).

We are supposed to cut out dairy, limit sugar and get lots of protein in him.  Wish us luck, mainly myself because I want to see if cutting out dairy can help us all. So we are in this journey together as a family!
He believes the scan was sufficient evidence to show the viral activity but we also needed to do some lab work when we got back home.  I talk to him on the 16th of May to go over these results.  We have started him on Valtrex to go after this virus and from his book he could add on an antifungal and a low dose of an ssri such as prozac.  The triplets I have been watching have been on the procedure for 3 years so it is a long term thing but if it helps Dylan and can't hurt him then I am all for trying!  According to him it is a good thing we didn't put Dylan on all the medication/supplements the Reno Dr prescribed, especially the oxygen because that could have made things worse, but who knows, right?  He went as far to say that we should demand our money back even!  So this is where we are on the treatment of Dylan.  He told us that I am doing good with my Mothers intuition and he said he is a successful person and won't give up, so here is to hoping this will help our little guy!!

Speech Therapy

We have also started Dylan in Speech Therapy because this school follows a speech therapist but the speech therapist does not technically work directly with Dylan.  I found a list of therapists that accepted our new insurance and called one that mentioned working with kids in a school setting so I figured she would be a good fit.  We are going to meet with her one or two times a week and go from there.  We have been told to pretty much make him work for ANYTHING he wants, so basically he should not have access to roam and do what he wants, when he wants.  Fun, right?  Just more work for us, but if we want to help him in the long run, we really need to take it serious.