Saturday, February 23, 2013

Back from a Break

I didn't know it, but I guess I needed a little break from blogging. Hence the lack of posts around here lately. I had the time on a few occasions around here to write a post, but I found myself doing anything but. So, I decided to come back when the time felt right, and I felt like I had something to say.

Buzzy has been doing a lot better in terms of his articulation and general understandability. (Is that even a word?) Whereas before he would call a banana "na-na" it's now a "ba-na-na". It doens't flow together like an NT child would say it, but it has 3 distrinct syllables, which is good. Also, we call pacifiers around her "buzzifiers". He would call them "fiers". Now he says "buzz-fier" which is also an improvement. "Gro mama" has become (with some reminding) "gro-sssss mama". That last one is one of his catch-phrases. Lots of things around here are gross.

Just a little update on where we are with all the irons I have in the fire...

-Service dog - we will hopefully hear something in between June and December. I am really hoping and praying they will have a match for him. So, that's where that is, and where it will be for the foreseeable future. This is from the place locally. On hold is the place where we would have to fundraise. I am not doing anything with that right now. And hopefully won't have to ever.

-Allergy testing - we received the test kit last week and I just had his blood drawn for that on Monday. We should have results in 2-3 weeks. I wrote on the calendar when we should start getting our undies in a twist about that.

-Pyroluria testing - A friend told me about this issue. The body doesn't remove some metabolic byproducts properly. It can be tested with a simple (ha ha, is anything simple?) urine test. I ordered the test kits for everyone in my family (except my husband) on Tuesday or Wednesday. I definitely meet a lot of the criteria for this particular issue. It is easy to fix with vitamin supplements  If Buzzy is positive, I will definitely go over the results with his doctor.

-Baby sister - she is now a year old and is showing a lot of similar delays to her brother, but fortunately not as severe. We will be adding her as a patient to Dr. Usman. I am going to try to get them both in at the same time to avoid multiple 2 hour drives up there. I am heartbroken about this. When I think of my beautiful baby girl having the same problems as Buzzy it's almost unbearable. And how I am I going to give her shots if she needs them? And watch her get her blood drawn? It just sucks. There are no other words for it.

-Urine testing - I am going to try to combine this with the pyroluria testing. For both of them he needs to be off any supplements for a period of time, so I hoping to kill 2 birds with one stone.

-Dr. Goldberg - this is the doctor in California. We have not heard anything back from him. I filled out a bunch of records requests and hope they have made their way to him and we get an appointment scheduled. I am still interested in his opinion, but I am wondering if Dr. Usman can't pretty much do the same thing he does (minus the neuroSPECT). So, given some time, I am less enthusiastic.

-Geneticist - We have an appointment for March 29th. We were originally scheduled for the 22nd, but that had to be changed. Grrr. I still have to fill out release forms and fill out the regular registration forms. I am wondering if they will test me for MTHFR, because I really want to know where the bad copy of the gene came from.

-More therapy: Skill Sprout is very close to being able to provide speech therapy for Buzzy (they do his ABA already). All I need to do is get a hold of my service coordinator and make it happen. Sounds easy, right? Bwhahaha! They will be able to see him twice a week (Mondays and Tuesdays) and back-to-back with his ABA. As long as I can get EI to sign off. See below.

-Did I mention getting a hold of my service coordinator? And how I can't ever seen to be able to? Yeah. She never returns my phone calls any longer. When I last saw her in October, she told me to look out for the transition meeting "at the end of January". I called her mid-January to ask about it. And again at the end of January. And then I pulled out the big guns and had my husband call her. Amazingly (since he called her from work - he's a principal) she answered. Turns out the transition meeting was the following day and she was sure I knew about it. WHAT???!!! Anyhow, I managed to show up and got Buzzy's evaluation for special education services reserved, but just barely. She wouldn't even look at me, and didn't acknowledge my presence. Guilty conscience, I suppose. The thought I may have to deal with more EI crap for the baby makes my butt itch. Ugh. But, the good news is, at least for Buzzy, we will now deal with the special education association for our county. And they seem to return phone calls. Yay.

-Someone I go to church with works as a PT for kids. I have an evaluation set up with them for additional speech services. I called them when I was waiting for Skill Sprout to make things happen. I will take Buzzy to the eval and maybe we can get speech through them, too. Maybe insurance will even pay for it. I don't know. All I know is that I want to keep my options open. And avoid EI as much as possible.

Whew. I think that's all I have on the medical/therapy front.

I want to talk a little about ABA. I meant to stick around last week and watch part of a session, but I can't now remember how I talked myself out of it. So, I am still largely clueless about how the sessions are conducted. However, after every session I receive an email that talks about the skills worked on and the results. I know he is given a task, and he does 10 trials of it. Each trial is recorded as a (+) or a (-). The + is given if he successfully completes the task. If he gets (out of 10 trials) 80% completion, then that's good. But, he has to have an 80% (or higher) success rate, 3 times before a task is considered mastered. And once a task is "mastered" they periodically do it again with him as "maintenance" to make sure the skill is retained.

Here is a recent report:

Responding to nonverbal communication: Get item therapist points to on floor (further away) field of 1 100%  Mastered. Way to go! 

Same/Different: Give different picture 80% Keep up the good work!
Letters Expressive: O Expressive: P BL 100% BL 100% Awesome!
Letters Maintenance 100% Great work! 
Yes/No questions: Do you want this? Yes with object not present 40% Keep working.
Joint Attention: Faces Various face changes 0 n/a
Mands for missing items and actions: I need ____. Cup/Milk 60% Keep trying hard.
Mands for missing items and actions: Maintenance 100% n/a
Greetings Waving bye, further proximity 60% Doing better. 
Listener responding maintenance 100% n/a 
Listener responding: What eat and drink BL 90% Great job!
Colors Receptive in messy array (red) 100% Awesome!
Direct instruction emotion Expressive happy BL 60% First time having to expressively identify. 
Direct Instruction emotion Maintenance 90% n/a 
Shapes Expressive: Rectangle BL 100% Diamond BL 100% n/a
Learning to talk: Repeat what therapist says (meow, moo) 90% Mastered! Way to go! 
Gross Motor Imitation: Put arms out to side 60% Keep working!
Fine Motor imitation: Making right fist 70% Keep trying hard.
Beginning parallel play: Rolling ball 90% Amazing rolling back and forth today! 
Joint attention duration: Listen to story for 1 minute intervals 80% Good listening and turning pages. 
Respond to name: Eye contact in unstructured setting on floor 60% Keep looking when name is called. Sitting at table 2 minute intervals at end of session 100% Amazing sitting at the end!


So, those are some of the skills he is working on in ABA. When I look at his progress, I am proud of how hard he is working. All of these are things that come so naturally to children his age, without intensive instruction  Which then makes me feel sad and angry all at the same time. He is going to have to work hard to be able to do some of the simplest things. But, then I think about how easily he's learned his letters and numbers and he can count so well, and I don't feel quite so depressed. It's still a long, hard road for him. But,  he is happy and making progress, so I will take what I can get.


Yes. He wrote the last post. I have no idea how he managed.

I will do a proper post later today.

Saturday, February 9, 2013

A real post!

       We have been put through the wringer here, lately. I finally came down with this terrible cold. The last few nights I've had to sleep in a recliner and my sleep wasn't all that restful.

       Anyhow, I last mentioned I was reading this book The Myth of Autism.

       And a lot of the things he says in his book make complete sense to me. I have always felt that autism was NOT a psychiatric condition. And that its designation as such makes no sense to me. I have felt it was more properly categorized as a medical condition. And, as such, could be treated (and dare I say it?) cured.

       He also makes the point that it's not normal to have a child that is meeting all their milestones at 12, 18, or 24 months and then they stop developing or they regress. Which is also something I've said and been thinking. How can it be normal? If its evidence is not present from birth, how can you suddenly develop it?

       He also points out the differences between what he refers to as "autism" and "classical" (or Kanner's) autism. And he makes the point that they are different disease states. In classical autism, the child has NEVER been affectionate. Ever. 

       The doctor who wrote this book treats children with autism. He feels its caused by a breakdown of the immune system which affects neurodevelopment. He thinks the body (and brain) are being overrun by a form of herpes virus and that its damage can be reversed. 

       The first thing I saw in the book when I opened it to read it was a set of images (called a neuroSPECT) which measured brain blood flow in an autistic child. It literally looked like there were holes in the brain. In other words, places where there was zero blood flow. It was, most notably, in the temporal lobes. Fascinating. And then there were the after scans, images where the blood flow looked remarkably (but not entirely) restored. And with that restoration, came amazing improvements in the child. 

       I am not unhappy with Buzzy's current treatments. But, I want more for him. And I want to know that I have exhausted every avenue available to me. So, I called Dr. Goldberg's office. We received the new patient packet Monday. By Friday morning I had it completed and had records request forms faxed back out to 4/5 of Buzzy's doctors/therapists. (One sent his records without the form - because they weren't a doctor, so I guess it wasn't needed). The final one, the doctor's office was closed on Friday. So, I emailed them. 

       I am praying we can get a good time for his first appointment. This doctor is right outside of LA. Yes, Los Angeles. We are wanting to arrange a time when I can fly out there alone with Buzzy and stay for as long as we are needed (a few days at the most) and then fly home. To say that the thought of navigating LA by myself is terrifying would be an understatement. But, I am focusing on one thing at a time. First, we make sure they have all the records, then we get the appointment. Then, we will worry about the rest. Ha!

       There are some definite contradictions in the two treatments - Dr. Goldberg treats NIDS (neuro-immune dysfunction syndrome) and feels that some of the treatments that biomed/integrative medicine doctors do are detrimental. He finds the excessive supplementation a bad idea, along with chelation. Well, in terms of chelation - not just bad but potentially dangerous and damaging. I am sure integrative medicine doctors wouldn't like Goldberg's use of SSRIs in the later stages of treatment. I am not sure how I feel about that, either. Same with chelation - I am not sure how I feel about it. Sometimes I think it's a good idea, sometimes I just don't know. 

       That being said, both approaches start with the same thing: change the diet. And since we haven't gotten too far into the supplementation plan, I am comfortable with trying to take what I feel are the best ideas from both approaches. It's all I can do.

       I called Buzzy's biomed doctor to get his allergy testing taken care of. We have the prescription already. We are now waiting on the kit to come in the mail. Once the kit arrives we will go to the local hospital and have his blood drawn. The kit tests for 96 IgG allergies and 12 IgE ones. (I may have those numbers reversed.) I think those results will be interesting. 

       We also have an appointment with a geneticist for March 22nd. That will be here before we know it. I feel like we are going to get a better picture of what to do for Buzzy with all of this additional information. I also have full intention of getting him an MRI and EEG. I want to know as much as possible. Knowledge is power, as they say.

       I still intend on doing a post about what Buzzy's therapies look like. Unless something ground-breaking happens, I will do that on Wednesday. (I am taking Sunday off.)

       So, for right now, I am happy with the direction we are moving in. We still have tantrums. We still have echolalaia. And verbal perseveration. But we also have a loving, sweet boy who loves to give hugs and kisses to his sister (especially his baby sister) and everyone else. And who is doing awesome with learning his letters and numbers and is doing great at ABA. And loves to play chase with his older sisters and loves to climb the stairs and lure the baby up after him. He is fun and playful - and I really want to get to know him. He wouldn't be where he is right now without the diet and treatments, so we will keep pressing on.

Wednesday, February 6, 2013

So much to say...

And so little time. I am afraid I have to postpone a real entry, yet again. My husband had to go back for a meeting and it's already time to give the babies their bath.

Perhaps tomorrow? I hope I will have the time then!

Monday, February 4, 2013

A Day in the Life

       I don't spend too much time talking about how Buzzy behaves on a day-to-day basis. I am going to do that right now. Sometimes it is so painfully apparent that things aren't quite right with Buzzy. Sometimes I feel he is right where other kids his age are. And in some situations, I feel he is advanced. And I am grateful that there are any instances at all where I can feel he is advanced. Yay for progress!

       Buzzy does well at night. He does sometimes make some noises in the middle of the night, but it's not too difficult to settle him back down. I just have to go in there, fix his covers and tell him it's time to go to sleep and he is good. Then I walk back out.

       Buzzy wakes anywhere between 7:30 and 9:00. He is pretty patient. He will generally stay in his bed, chattering to himself - for a little while. If you let him go too long, though, he might get noisier and get cranky. Fortunately (knock on wood) he doesn't try to escape his room (we have a gate up). I change and dress his. He isn't potty trained. And he doesn't know how to dress himself, or even really help me get him dressed. He likes to play on my phone while I am taking care of this. I haven't pushed the whole "self-help" issue yet with him, because I feel we have bigger fish to fry at the moment.

       Then we do breakfast, which is all his vitamins and supplements and everything else. Generally, he sits really well for breakfast in his chair. Then, some mornings he has ABA right away. If he doesn't, then he bumps around the living room, doing his own thing. And what does doing his own thing mean? Playing with items not appropriate for a 2 year old, of course! He likes to find cords and plug them into phones, or plug them into outlets. I have given up a long time ago trying to get him to NOT plug things in, so I have showed him how to do it properly. I don't like it, but it is what it is. He likes to drag one of the big vacuums around, as well. He likes to take the telescoping handle out and pretend to vacuum with that. He will (at times) run up to his sister and give her kisses. He also likes to take down the gate that gates off the stairs and lure his sister upstairs. I am not sure why that amuses him (getting his sister to come upstairs), but he really likes doing that. Probably because I really like him NOT doing that.

       Lunch is a little harder to get him to sit down for. He also likes to constantly raid the cabinets and fridge (if I am dumb enough to leave them open and unlocked). He definitely likes to graze. I try to engage him to play with baby and me or do therapy with him, but that can be challenging. A perfect example of this was yesterday. We were all settled in watching the Super Bowl game, and Buzzy was off in the kitchen by himself playing with a little tube pretending it was a vacuum. It made me sad to see him there off by himself. He did later come to me and put his head in my lap and fall asleep, though.

       During the day, he doesn't want to be read to. He sometimes will want to play with puzzles or play with trains, but it's hard to get something set up that will hold his interest - and that the baby won't come over and destroy.

       While I've been typing this, he's been down in the basement with me, turning the air hockey table on and off, turning the fake fireplace on and off, and plugging cords into a surge protector. It's like he doesn't need me at all - for interaction.

       But then, he has started to want me to do everything for him: put him in his car seat, he needs me right there when it's bath time (he won't go upstairs unless I am right behind him), I do his bedtime routine, and I also have to put his shoes on, even if one falls off in the middle of church. He also has to be loitering when I shower, and will tantrum if he's not in the same room. So, I shower while he hangs around in our bedroom. He doesn't bother me or anything - he just wants to be where I am, I suppose. Fortunately, he doesn't really get into anything. He just plays with the vacuum up there and looks for pacifiers to steal.

       I've been reading this interesting book, called The Myth of Autism. I will have to talk about that next time, because it's getting late here and I need to help with the bedtime routine.