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.

Utah Autism Academy

Dylan started at Utah Autism Academy this week and we are excited to see where things go from here.  Sherry and her team have done the hard work and have him in a good position to move forward.  I meet with them tomorrow to fill out paperwork and then next week to go over his treatment plan.  I love that they send an email everyday to show how the day went, here are the two emails I have received so far:
 January 23rd:
"Afternoon - By Katie 

Dylan was motivated by puzzles, playing with snow, the gym, playing the piano, the sensory room, and playing with water. With that motivation we worked on pairing with peers and staff, following safety instructions, using eye contact, appropriately gaining attention (vocally and physically), rolling a ball, following one step directions, cleaning up after activities, parallel play with peers, waiting, and relinquishing items. He had maladaptive behaviors for the function of access and escape. This looked like flopping, crying, attempting to head bang, and pinching. The effective intervention used was giving choices and prompting functional communication. Something Dylan did well today was parallel play. He was able to sit and play with a bucket of snow with his peers for an extended period of time.

Mid-Morning - By Cindy

Dylan was motivated by the hula hoop and a Frisbee. We used the hula hoop for interacting with staff and we used the Frisbee to help with transitions from one location to another.  He exhibited some head banging behaviors on the arm of staff, for the function of access when it was time to transition away from an activity. The intervention was to give him choices of other activities by showing him items he could choose from.  He did well transitioning from room to room.

Morning - By Megan 

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Dylan was motivated by throwing balls in the air, tickles, being chased, and swinging.  With that motivation we worked on pairing, gaining attention appropriately, following safety directions (hold my hand, wait, stop and come here), cleaning up and following directions. Dylan had maladaptive behavior for the function of escape/access that looked like attempting to elope, and head bang. The effective intervention for head banging was to give him squeezes on his head throughout the session and block his eloping.  Something Dylan did well today was showing me he was ready to leave an area. He would go to hold my hand or clean up the activity he was doing. He also did well requesting to "go". Dylan ate a few gold fish and a string cheese for snack."

January 24th:

"Afternoon- By Mikayla 

Dylan was motivated by hula hoops, a timer, the sensory room, and dumping a bin of balls from the ball pit. With that motivation we worked on pairing, transitions, following directions, Manding for desired items and actions, and going to the bathroom. He had maladaptive behaviors for the function of access and escape. This looked like flopping and eloping. The effective intervention was prompting Dylan back to the original spot of elopement and to follow directions. We also used a timer to visual show Dylan how much time was left at a specific task (approximately two minutes.) Something he did well today was engaging in a game of dumping the balls in the ball pit. With some prompting, Dylan helped fill a bin full of balls. When it was full, he sat in the ball pit and echoed an approximation of "dump." The balls were then dumped on Dylan. He ate goldfish.

Mid-morning - By Bailey 

Dylan was motivated by being pushed in the rolling chair, playing on the teeter totter, playing with play dough. He was also motivated by building towers with blocks then knocking them over. He was motivated by playing musical instruments, being pushed in the swing, playing in the ball pit, and being tickled. With that motivation we worked on pairing, following one step directions, following safety instructions, and rolling and throwing the ball. He had maladaptive behaviors for the function of escape. This looked like attempting to elope. The effective intervention was priming him with a timer. Something Dylan did well today was he did a great job throwing the balls in the ball pit. He also did a good job with the safety instruction "hold my hand".

Morning -By Blia 

Dylan was motivated by swinging, the sensory room, gym, a car, and ball. With that motivation we worked on paring, following directions, appropriate ways of gaining attention, holding hands, vocally imitating push, and rolling a ball standing up. He had maladaptive behaviors for the function of access. This looked like eloping and falling on the ground. The effective intervention was a blocking response, and helping him to follow through with the direction. Something he did well today was appropriately taking my hand if he wanted to leave the room or carry him on my back. He ate some gold fish crackers."

Brandon and I have both got a kick out of this because we can just envision how he is flopping to the floor, head banging their arm, or trying to elope, ha ha. Dylan did make me feel good when I dropped him off the second day!  We just drive up to the door and a lady comes out to see who is there and radios to whomever will have Dylan for the morning, that person then comes to get him from the car, so nice!  Well I got him out of his car seat and was waiting for them to come, so he climbed on my back. A lady came out to get him so I got him down and told him bye.  The lady asked him to give her five but instead he waved to her and grabbed her hand.  I told him bye and then he reached for my hand.  I walked a little way with them and told him bye again and he waved to me, but then reached for my hand again.  I told him I had to go as they got to the door and let go of his hand.  He continued to reach out for me, but wasn't sad, so I told him bye and I love him and will see him later. That made me feel good that he actually wanted me!!

IEP

Even though we have pulled Dylan out of the school district, they wanted to have his IEP meeting so that if we change our mind and bring him back they have that on file.  I think I say this every time, but I have read so many comments on Facebook groups of IEP's being scary and you leave them crying or having to fight for what you want, well I don't really know what I am doing, but feel that they have my sons best intention in mind and I am happy with what they have on there.  Sherry said they already miss him in class but want to be updated on him!

I mainly love going and seeing what they have to say about Dylan and the changes they are seeing.  But most importantly, I love seeing the love and care they show for him!  He has definitely been in a place for these past 2 years where he has been well taken care of and that is sad to take him away from, but I think they will love him just as much at Utah Autism Academy.

My take aways from this meeting is that they know Dylan and he loves his treats, therefore, he works to get those treats!  They said he often tries to skip past some work to get to the treat, such as, when looking through a book of things he should do(each page has an assignment type thing) he often does the first page and then looks for the page with the snack on it, so that he can get his snack.

The speech therapist had so much excitement for his progress and wants us to make sure they know what they have been doing this year because she feels it is working out so well.  Instead of having her come once a week for a longer amount of time, she has been coming 3-4 times a week for 5-10 minutes at a time.  She wonders if he has Apraxia.  The way she described it is say you want to go to a store but you walk out your door and there is a field with very tall grass blocking your way.  You trudge through until you get to your destination.  The next time you go to the store, same problem, however, you have created an idea of where to go from walking on the grass previously so you know where you are going and that continues until the grass has been pushed down and you have your path made.  Dylan has the same problem, but instead of the trail being made more visible, his grass grows quickly and covers his previous trail. It may take him a lot more "trips" and more frequently for his "grass" to stay down.  She used an example of one day he kept referring to Bubbles as "buh" all session long, she was amazed.  The next day, nothing!

She wants us to make sure we have an actual Speech Therapist working with him to continue working on motor development so that he can make connections on how to move his mouth to get the correct sound out.  She talked about how he has been babbling so much more and that he can produce sounds she asks for, but it is usually with another sound attached.  For example, she asks him to say "ee" He will start babbling(but she can see he is working and really trying to get to the right sound) so it sounds something like, "mmmemegubmee"so they want him to really work on the motor part of it and be able to produce only the sound asked for on command.  Sherry had showed her our video of Dylan saying,"I love you" and that made her ecstatic!  I could see she loves Dylan just like the teachers do. She laughed about the treats and said she had quit telling Dylan "No" when he came to her.  She would take him into the kitchen area of the class to work with him.  Dylan knows that was where the good stuff was kept, so he would search the cupboards and find his treat.  She would place it on the table and when they were done that was what he earned!

The Occupational Therapist started off by saying he must not have got the memo of Dylan's love for treats, because he didn't always work as good with him, ha ha.  He is able to unbutton things, take lids off, stack 9(on this attempt) blocks and a few other things.  He wasn't able to button back up, put lids on, build things out of blocks or copy what he did in drawing(like OT draws straight line and Dylan then does the same).  He did say, he felt like Dylan was just "Done" and didn't want to put forth the effort so he probably could do some of this stuff but didn't.  He said maybe if he had the treats, he would have been willing to do more ha ha!  In this area we need to work on the writing because he just doesn't care for that too much.  They want him to be doing as they do and follow their lead.  I learned something here as well, and this just shows I haven't really worked with him in this area(oops) but when the OT was talking about scissors, it requires him using both hands but he knows what needs to be done, but when forced to use one hand he would use the right hand.  Sherry spoke up and said they had decided a while ago that they thought he was left handed and asked my opinion.  I really didn't know what to say, because I have seen him use both hands but I just assumed right handed, but there is a lot of left handed on both sides of the family.  It will be interesting to see what he ends up being and I will try to work with him a little bit!

In a classroom setting they are continuing on matching, following directions, sitting in group settings for longer amounts of time, and his social skills.  They said he has come a long way in this and when completing tasks he often looks up to them for approval.  Before he would just continue on and not pay attention to there being someone there.

Final Parent Teacher Conference at Spring Lake Elementary

I was a little nervous to meet with Sherry for Dylan's Parent Teacher Conference this time because I had just told her about pulling Dylan out and putting him in Utah Autism Academy, as long as everything went as planned with insurance and being accepted.  I told her on the day (1/4) that he had his evaluation when I took him back to school. She was busy with kids as I talked to her, but she seemed bugged by what I was telling her, but also wanting me to make sure he did not go somewhere where Discrete Trial was not an option because she has seen good things with him.  I left that day feeling a little sad by her reaction, but at the same time I knew it was a reaction of shock, love and concern.

When I went to Parent Teacher Conference she asked me a bit about it and then said she is on board with my decision and feels that I am making the right decision and one she would also make if she was in my position!  She said that she told one of the Aides after our conversation and that Aide went home and looked up UAA and saw that they do Discrete Trial, so that made them feel comfortable with my decision.  That started the meeting out on a good note! She said that we have had 2 Summers now where we have seen the regression and so it is obvious that he will benefit from having full time help throughout Summertime.  That is my main reason for jumping on this opportunity and not delaying it.  I just needed her approval because she knows my son and I know they have had to grown quite an attachment these past 2 years.  I have loved him being there and know that is where he needed to be and will never be able to repay her for the work she has put in to Dylan.  I am really quite sad to be pulling him out of her class but I know this is where he needs to be going at this time, so it is a rather bittersweet time for us.

Sherry said that Dylan has back to where he was at the end of the school year last year and is starting to really progress.  His social interaction is improving immensely!  She told a story of having Dylan and another boy sitting by each other on a chair.  She sat across from them and threw a ball to the other boy.  Dylan reached over to grab it.  She threw it back to the other boy.  Dylan slumped over in his chair to show his disappointment that he wasn't getting the ball.  When she called out his name to throw him the ball, he shot up in excitement!  She said that is a huge improvement from when he began because he would just throw the ball in another direction and go about his business.  

They are starting to hear a lot of different sounds and more on command.  For example, vowels.  They will ask him to say, "E"  He will say it but usually has a consonant attached.  He still does not care much for writing and she said that is something they need to find something to create excitement for him because he just isn't liking it.

I got the call the following day that insurance has approved Dylan's treatment plan.  They said we could start school at Utah Autism Academy on Monday, but I asked to wait a week, so that Dylan can get his goodbyes in, or at least give the opportunity for the teachers to tell him goodbye.  I would hate just pulling him out of there without some type of closure because he has been there for 2 years and Sherry and Loni have been there the whole time.  Those two and the other aides will always have a special place in my heart, because they have worked so hard to get Dylan to where he is.  I will give them credit forever and hope that he can continue on from what they have taught him and go further! So beginning on January 23, Dylan's next journey begins!