A Day With Jack- Ups, Downs, and Tear Provoking Progress

Yesterday was action packed.  I took the day "off"(insert the usual laughter here).  I did actually have from about 9:15 to 10:30 all to myself-  took a shower, put on real clothes- good stuff.

Jack had two doctor appointments yesterday- one with his pediatrician- for preop, and one with the pediatric dentist, also for preop.  Jack has had dental issues since the day his first tooth can in- well, let me rephrase- I could see abnormalities in the enamel right away.  By age 3 he needed 6 fillings and crowns on his back teeth.  It was not a pleasant experience at all- we were asked all of those "irresponsible parent" questions such as- how often do you brush his teeth (twice a day), how much juice does he drink (not much and it's always diluted 50/50), did you give him a bottle in bed?  Well no doctor, because my son refused all bottles after the age of 6 months, he solely nursed until he was 22 months old- a former babysitter was reduced to trying to squirt water into his mouth with a bath toy while I was working. Try again.  And of course, because of the extensive nature of the work needed, and jacks oromotor guarding he had to be under general anesthesia- so about $7000 later...out of pocket...we were all set.  Except that one of his crowns fell off, and then last week one of his crowned teeth fell out??

Anyway- one of his teeth has always been malformed- they tried to reshape it (I am guessing with white filling material) when he went to the or, but it keeps decaying- it's his enamel again.  And he had swelling in his gums around one of the crowned teeth.  We took him to our dentist, who tried to extract the tooth in the swollen area (after an x-ray showed infection)- but jack almost kicked HIS teeth out in the process.  So he sent us to a new pediatric dentist- who wants to extract two teeth, put in spacers, and potentially fill two more. It sucks. But it has to be done

I was looking at the treatment plan yesterday while we were in the office and noticed one of the teeth to be filled was one of his NEW molars- ie in for about 5 months!!! What. The. Heck???? The dentist asked if I had any questions and I was like ummmmm yes.  I told her how concerned I was and she went on to explain that about 10 percent of people are born with this issue.  He has very weak enamel, the fact that any type of decay could happen that quickly just further proves that.  She recommended getting every one of his current teeth sealed, and then, as soon as a new tooth erupts, bringing him in to have that one sealed as well.  This stinks, but at least she is not blaming us and wants to be proactive.  I am thankful for that.

When both appointments, which were obviously quite stressful and stimulating for jack, were over we headed back to his school.  His end of year party was scheduled for yesterday afternoon, all the parents come, and I didn't want to miss it. (Even though if I'm being honest, I would have loved to miss it).  The kids write a book each year, and at the party they share their book with the class- it's a really big deal to them, and I knew Jack really put effort into a story he was very excited about (this year the children were sharing an experience they had had)- although the whole quietly waiting his turn and listening to others first concept is still extremely difficult for him.  Anyway, off we went  As we walked down the hall, his class was coming back from art or music from the other direction- another transition on top of like a million others yesterday.  This is one of Jack's biggest challenges btw.  Then we walk into a classroom full of parents and with lots of food that he couldn't have yet.  It was loud, it was different, and Jack was discombobulated to begin with from the appointments.  And he was really having a hard time.  Now in the hard time department we are actually pretty lucky.  No violence, no self isolation, nothing "unpleasant".  But his little arms start flapping, his whole body stiffens, he starts shouting (louder than normal) and running from person to person, asking them about planes, locusts, dragonflies, etc.  You can immediately tell which parents and children are good with this (some of the kids just LOVE him and it is very apparent) and unfortunately tell those who are not just as easily.  Someday I SWEAR I will stop caring, but yesterday wasn't that day.  When jack has a hard time, I have a hard time.  I just wanted to grab him and wisk him awake from the few disapproving looks.

Turns out, I didn't have to.  His special ed teacher happened to walk into the room, she took one look at Jack, walked over to me, and before she opened her mouth, I said "this is way to much for him.".  She agreed, and asked Jack if he would like to have a chance to read his book to just us.  At first, Jack protested, he said he would have nothing to eat (or, if you want to know his real, scripted answer, he said, "but I'll have no food, no water, no communication"), but then she asked if he would like to fly into the other classroom and he was game.  If you look below, you will see that Jack's teacher has a shelf of vehicles with propellers, all there for one very special Jack, as rewards.

She handed him a plane and we "zoomed" next door to read his book.

I have to say this.  I am so incredibly proud of my boy and his progress this year.  Looking at this book drove it all home, not just his progress with reading, but his ability to coherently tell a story, his follow through, and his willingness to do fine motor activities.  I know that they had a long period of time to work on these books, but even so, compared to last year, this was fantastic.  Not to mention that last year, getting him to go through his book was like pulling teeth (no pun intended, ha).  This year, he just, read it.

 

This is about when my waterworks started.....

But here is where I really started blubbering.  This little boy could barely write his name at the end of kindergarten.  If you asked him to draw a picture, he would likely try to run away or literally scribble a few lines and say that's it.  I know that the drawing above looks very very basic- I know that "most" first graders' pictures look very different.  Don't care.  If you look- the blue is my CRV, the little guy with the big smile is Jack, wearing his favorite color, orange.  The big person in the front is me, also with a huge smile.  This took thought and planning, and most importantly for Jack when it comes to fine motor, motivation

And look at his colossal squid (I commented to his teacher that the person who helped him with this probably had to look up how to spell humboldt, ha)!  It looks completely awesome!    

I wrote this (other than the typo that reads Max- guess he had his typed up right before Jack's, ha).  I LOVE this picture of Jack from Easter, it is so him.  

He continued to have a pretty rough time when we returned to the class for snacks- he had a hard time waiting in line, actually what he yelled was "I DO NOT want to be the line ender".  Guess what, a little girl in his class who was done with her snack came and stood behind him, not to get more food, but to be the line ender so Jack wasn't.  That is a nice kid, right??  I was still trying to keep him calm for the rest of the "party" (or trial by fire for autism families), but I was also in a bit of a bubble- no matter how hard of a time Jack was having, all I could really think about was the book, and his teachers and classmates that are always looking out for him.  Forget those few snotty looks- for the most part, he is surrounded by such positive people every day.  And look at how he is thriving.  I am one happy mama.  

Mind Blowing Technology: ZYTO Scans

Last week John and I took the boys to an appointment with a new provider in Richmond.  It just about blew my mind.  I am, as always, extremely overwhelmed and in total information overload.  To the point where when some of my autism mama friends asked me about the appointment I basically said, shhh, not ready.  Luckily, they get that.  I should just get a sign to plaster across my forehead....PROCESSING

And I'm not done.  I am actually going to use this post to get through some of this.  The provider that we saw uses a technology called "zyto scan ".  Here is a description:

"Your body is energetically connected and constantly in communication with itself. The primary function of this communication is to maintain overall health and functionality. Biocommunication between your body and ZYTO software takes advantage of this and is a breakthrough method for 'listening to' and 'communicating with' your body.
By interacting energetically with your body the ZYTO software will essentially 'ask your body questions' and record your body's responses or 'answers'. Information gathered in this way can help you be more proactive about your health and help you and your healthcare provider make better decisions regarding your healthcare.

ZYTO scans do not diagnose or recommend treatments, they simply provide information that should be considered by a qualified healthcare professional in determining a course of action.
https://zyto.com/technology.html

OK now this lady right here is a cynic!  I would not have undertaken all of this, except it just seemed meant to be. This practitioner, Michael Payne, was fairly well known in the autism world about two years ago.  I discovered when I did my research on him that he kind of disappeared all of the sudden (not a good sign right?).  But actually in this case it was- he moved on- to lyme disease (many kids with autism have this in case you didn't know- no really they do) and cancer.  He is still studying autoimmune processes, but from what he said to me, he was very discouraged with fighting big pharma, and frankly, autism moms.  Sigh.  I get it.  However, two weeks ago, when Jack had strep, our pediatrician mentioned him to me because she was having a business dinner with him to discuss zyto scan (which she is getting in her office) and several other topics.  It was kismet.  She had my boys on her mind because she had seen Jack for strep, and thus mentioned their cases at dinner- and he was interested.  So he agreed to see the kids.  And I trust our pediatrician implicitly.  Michael Payne has worked with other practitioners who are very well known in the autism community, such as Amy Yasko, and  is someone who clearly thinks "outside the box".  Well here's the thing- the box is just not working out too well for many kids with autism.  I continue to hold the strong belief that you can hurl every therapy on earth at someone in enormous quantities, and if it's not able to "get in" (ie, the brain can't process it), it's not going to do a hill of beans worth of good- however it will cost the same as effective therapy.

OK, so I went into this appointment with an open mind, but also with a certain degree of skepticism.  I mean, seriously, they were going to be able to tell what is going on with the boys by putting their hands in a cradle and having a computer send electrical impulses (tiny ones) through their bodies?  Hmmmmm....
However, there is this:

DEVICE: ZYTO HAND CRADLE
ZYTO TECHNOLOGIES, INC            510(k) NO: K111308246(TRADITIONAL)
ATTN: VAUGHN R COOK               PHONE NO : 801 224 7199   
387 SOUTH 520 WEST SUITE 200      SE DECISION MADE: 30-AUG-11
LINDON UT 84042                   510(k) SUMMARY AVAILABLE FROM FDA

http://www.fda.gov/MedicalDevices/ProductsandMedicalProcedures/DeviceApprovalsandClearances/510kClearances/ucm270810.htm
That's the FDA clearance for the device.

Still, I would believe it when I saw it.  I took Nate back first and had to hold his little hand on this cradle for 5 minutes.  Would you believe this upset him way more than a blood draw or ecg?  He does not like having to be still, especially if it's because you are making him.  About 2 minutes into the scan Michael looks at me and asks me if there is any history of chronic infection in the tonsils in either of our families, such as tonsils that had cavities in them where infections could hide, because Nathan shows signs of this.  Welp, that was kinda crazy- like that moment when a psychic can tell you something  that no one should know?  Because, my mother, me, my sister, and Jack have ALL had to have our tonsils removed due to chronic infections that could not be cleared by antibiotics.

Then when Jack sat down and put his hand in the cradle, he asked if he had dental problems.  Those of you who have been reading for awhile know that Jack had to have dental surgery at age 4 due to a significant enamel defect- it was essentially multiple fillings, and then caps put on his back teeth.  So I explained that he had these procedures.  He said, no, but there is some type of infection in there- maybe strep? (you know, the thing he was treated for 2 weeks ago?)  He said it was in the gum under the cap on this one particular tooth.  This was on Thursday.  On Saturday morning Jack woke up complaining of tooth pain- we took him to the dentist and guess what?  That tooth has an infection.  The dentist actually recommended we just go ahead and take it out- it already had a pulpectomy and cap, it's not decay, but if it's infected now it will be very difficult to clear and it's a baby tooth.  So that's our next fun appointment.

But seriously, how freaky is that?  I mean these are very random issues to be able to pinpoint, but zyto scan found them right away.  Also, I was told by Nate's NIH neurologist last week that he has a mild conduction defect (nothing serious) on ecg- this was also picked up on the zyto scan.  Now, as per the device description, one does not "diagnose" with this tool, but rather use it as kind of a compass pointing to where there may be issues.  Both boys showed responses consistent with chronic yeast and bacterial infections, as well as brain inflammation.  Particularly Nathan.  Midbrain inflammation (think speech).  And while I am not going to "say" it, I will say what Michael said.  This type of inflammation is consistent with a particular injury that can be caused by a particular substance injected into children at a very young age.  One cannot say that it is definitely what they are seeing, right?  But does it give us a direction to explore?  yes, it does.  And while it upset me to see this in black and white, it was not surprising, not in the least.  Because despite what people in general want to believe, this does happen.  Not to ALL children, but to children who are already vulnerable due to a genetic predisposition to these problems.  This regression that we saw was not a "coincidence", it was a reaction.  I was too observant with this child, hyperobservant really after Jack's diagnosis, to have a foggy memory and accidentally label it as an incident when it was really a slow regression.  It was sudden.  It was within a week of 18 month vaccines.  These are things that you cannot dispute- don't try anyway, I will kick you :-).

There are things that can be done.  Not mainstream things.  More biomedical, but really homeopathic things.  The idea is that the brain inflammation and genetic predisposition both contribute to his inability to clear toxins that wouldn't bother most of us since we don't have this issue.  The inflammation has, for lack of a better term, turned off his body's ability to remediate these "insults", and that's really the root cause of the chronic infections, etc.  The infections can be cleared over and over again, but because of this, they will always come back.  But the hope is that this ability to protect can be turned back on, with intervention.  If this happens- guess what?  Therapy can get in, it can be effective.

I will delve deeper into the planned interventions in future posts.  This is as far as I can make it tonight.
Consider my mind blown.

The Scoop on Nate- Latest Developments

First of all, to those of you who have donated to Nate's medical fund- I want to make sure I say thank you.  Some of you I don't even know, some I haven't spoken with since high school.  I can't begin to express how touched we are.  So here's what we know so far, I submitted all of the paperwork to take both boys to Dr. Usman; I decided it just made more sense to take them both at once, and plus, the last few posts that have been about Jack have made me really think about how much his life is impacted at this point- it's a lot.  I didn't hear back for quite awhile, so I emailed the office staff, who informed me that she hasn't gotten to our intake sheets (she will then decide if she will "accept" the boys- although when you have two kids with the same developmental diagnosis few practitioners can resist), but she also shared this pretty piece of news- new patients are currently being scheduled for spring of 2015.  Sigh.  I should have expected this.  It doesn't change my level of disappointment though.

So clearly, if you have met me you know that I am not one to sit twiddling my thumbs for one of the most important years of my child's development whilst "waiting" for an appointment.  Not going to happen.  I have been looking at other, more homeopathic treatments to try while we are waiting, and am very enthused about some options.  Maybe someday I will talk about this, but not right now.

About a week ago I decided to give Nathan a break from his diflucan and antibiotics.  He's been on them for two months with no break, and I worry about his little system.  Three days later I found him standing on his head (one of his major sensory seeking behaviors from when he was first diagnosed- we would find him this way in his crib).  Not a coincidence.  And further confirmation that an unbalanced gut and immune system are significant contributors to his behaviors.  This actually gives me hope though- that's the world I live in- I just want to know how to help him.  Even if it means confirming a new problem- who am I kidding, finding a solvable problem is a big victory.

He continues with school, speech, OT, Cisco Center, etc.  I think he is in a very good place with his therapies actually.  Working with Carla "officially" for speech (she was always "working" with him, just not one on one) is very beneficial for him.  Not only is she able to sit down and work on the methods that she employs during a session, but she is able to reinforce this on a daily basis when they are working in the classroom setting.  Consistency is key for these kiddos. 

Today he was playing with Carla a little bit right before we left- they were doing some singing and then peek a boo.  Nate literally said "I see you".  I heard it clear as day.  When these phrases pop out it's like winning the lottery.  The one unfortunate part of that is that recurrence is not likely (at least not in the near future).  But Carla pushes him- she is not afraid of pushing his limits, I think that is part of what makes her such an effective practitioner.  And even though Nate often ends up crying in frustration, he is always happy to see her the next day.  It's a great balance.  Anyway, Nate continues requesting things consistently at home- he will point to which cabinet the item he wants is kept in if verbal attempts are not effective.  I guess the point of this is that he is trying, he is really trying.  His repetition of familiar words also continues.  He is still working with PECS as well, but because of how much effort he is making verbally, it's hard to decide how much to use them.  I don't want him to get frustrated, but I don't want to take away the incentive to use words (since he seems to want to use them).  So we are finding our own balance, as I guess every family does.  He will say "watch" if he wants a program on TV.  We put on netflix and he walks over and points to the program he wants, and says "want".  This is great progress, especially since it doesn't involve his biggest motivator- food.  The other day, I was giving him a "grain free cookie" (don't judge, I am an awesome mom, lol), and I said "just one".  Swear to God the kid looked right at me and said "two".  Luckily John heard it too- so either I'm not crazy or we both are ha.

This is his last full week on the Aricept trial through NIH.  He will stop taking the medication next Friday night, at which time we will go through a battery of tests- developmental, blood, ecg, and a sleep study (only one night this time, thank GAWD).  Then they will follow up with us for the next year.  I have mixed emotions about stopping the medication.  His speech has definitely progressed in the last six months, and I do think that Aricept must have something to do with that.  On the other hand, we have been very consistently treating his yeast issues also.  The positive part of stopping the medication is that we are free to try other interventions.  I have held off on certain things because we didn't know if they would interact with Aricept.  So we shall see...either way, I would highly recommend NIH to any parent who is looking for cutting edge treatment for their child.  They have been an absolute pleasure to work with.  At least from mommy's perspective. 

And Just Like That- Nate's Back

It’s freaky really.  In a good way, but still freaky.  Nearly two weeks ago, Nate’s pediatrician agreed to put him back on the antibiotics and antifungals that he was on in December when he had a big burst of language and joint attention.  In the past two days, several people have told me they see a huge difference in him. First up today was the speech pathologist at the private practice where he is now being seen.  He wouldn’t cooperate with what she wanted him to do, but he used several words, and more importantly he was paying attention.  To the point where he did such a typical little kid thing that I almost laughed out loud.  He was screaming because he was angry that I picked him up early and took him somewhere as offensive as SPEECH.  Eventually he started to smile and play with the speech pathologist, and then he would realize what he was doing and his face would crumple and he would start screaming again.  He had enough focus to remember that he was supposed to be upset, not having fun.  I see little kids do this all the time- just never mine.  The speech pathologist noticed it too, and mentioned the fact that he wasn’t running laps like he had been before.  When she handed him a ball he stared at it (it was translucent) and said ball.  He did play with the ball and a little bird for a couple of minutes, but the session was only 30 minutes.

Again this evening, when I picked up Nate at Cisco Center one of the teachers mentioned that Nate seems different (and no she did not know about the medication changes).  In fact she said this- “remember like a month and a half ago when Nate was repeating everything we said and really making progress?  He seems to be acting like that again this week.”  I told her about the medication changes, and thanked her for letting me know what she saw.  It’s just so encouraging when people who aren’t aware of any changes in his treatment notice these differences.  It’s also confirmation that I am headed in the right direction.  I did, however, already notice it myself.

He is definitely repeating, he is definitely stimming less, although he still grinds his teeth painfully frequently.  And two days ago now, while I was changing his diaper before school he picked up his brother’s stuffed bird, handed it to me, and said “bird”.  I freaked- this child only names food objects, and usually not even then.  Usually it’s “more” “go” “bye bye”, etc.  He said bird!  Appropriately.  Then- while still holding the bird he said “bird fly”.  That’s all it took to turn me into a snotty mess.  He repeats this on command now, which is great, but the fact that he used the terms in the correct context means even more.  He has had several other new words with us in the past few days, and he is definitely more aware of his surroundings.  Get a load of this!

One other thing that I started with him about a week ago was grapefruit seed extract. 

http://www.ourkidsasd.com/products/9055%7CGrapefruit%20Seed%20Extract-Pure%20Encapsulations

Grapefruit seed extract is a highly concentrated fungal and microbial balancing extract. Grapefruit seed extract exerts these effects within the gastrointestinal (GI) tract, promoting healthy microflora and gut ecology. A preliminary clinical trial reported that grapefruit seed extract supplements helped support healthy GI function and comfort. An in vitro study using human skin fibroblast cells indicated that grapefruit seed extract promoted healthy gram-positive and gram-negative balance. Other studies support these findings, citing that grapefruit seed extract promotes a healthy environment when exposed to a wide range of bacterial biotypes.

We have tried this one other time in the past without much effect, but this time he is also on the antibiotic and antifungal.  I also ordered another natural supplement to try- CD Herbal

http://www.ourkidsasd.com/products/379%7CCD-Herbal-Kirkman%20Labs

CD-Herbal™ is a powerful hypoallergenic blend of herbal components that support gastrointestinal health by helping control undesirable gut flora. This product was formulated to be used with CD-Biotic™, a specialty probiotic designed to support healthy gastrointestinal flora when certain difficult bacteria have populated the gut.

Under certain circumstances and very frequently among sensitive individuals, certain strains of bad bacteria become concentrated in the gastrointestinal tract and are very difficult to eradicate using conventional probiotics or drugs. This is especially true if the strain of bacteria is a spore-forming organism. Spores of these types of organisms can lie dormant in the gut following various types of control procedures, only to repopulate when conditions are right.

CD-Herbal™ contains thyme, oregano and curcumin (turmeric) herbs, all of which can exhibit inhibitory support on harmful gut flora. It also contains cumin, an herb which stimulates the growth of the probiotic strain Lactobacillus plantarum, which is also present in CD-Biotic™ and instrumental in helping crowd out undesirable flora.

This hasn’t arrived yet, but it should soon.  Nate has also been on curcumin in the past with a little improvement, so I am wondering how he will do with this combination.  As you can see from the ingredients, it’s all very benign stuff.  I am doing these things while waiting for an appointment with Dr. Usman.  We submitted our paperwork last Friday, and thus far received an email response of two words- thank you.  That’s pretty much what I expected, knowing how busy the practice is.  I guess I will have to start my stalker mommy calls in the next week or so.  I feel like we at least have a reasonable plan in place until we get in to see her.

On that note, I just want to mention how incredibly touched our family has been by the donations we have received toward our trip to Illinois.  I mean, some donations are from people we have never met, people that I have never even spoken to.  We have also heard from people that we should not be hearing from, people who have enough on their plates without worrying about us.  There’s really nothing else I can say except thank you for your kindness and generosity.  And thank you for having faith that I am doing my very best for my children.  That is what means the most.