Wednesday, January 30, 2013

Plotting and Planning

I am just going to jump in with my random thoughts and whatnot during the last few days.

  • I am still tired of the process of getting Buzzy more therapy, particularly speech. In fact, his speech therapy appointment this week was virtually useless. He had a fit the minute his therapist walked through the door. He ended up doing about 15 minutes tops, while I had to sit right there with him. I still have no idea why he was so unahppy. He did great just that morning with ABA.
  • I finally looked into various autism websites. I don't know what took me so long. I have found a lot of resources and now have some more ideas of where to go next with things.
  • So, here's one of them: Talk About Curing Autism (Also known as TACA.)
  • And here's another: Generation Rescue
  • I even became a member of TACA. TACA has been really awesome already. They have blueprints on their website of what to do, each step of the way with biomed treatments, after the diagnosis, for IEP meetings, etc. Oh, and all of these things were free. I became a member to support their cause (and the Kirkman supplement discount didn't hurt, either.)
  • I signed up to get a mentor with TACA as well. I am really looking forward to talking to someone who has been through it all.
  • I asked my pediatrician for a referral to a geneticist. I have been uneasy that no one has mentioned getting Buzzy tested in this manner - despite the fact that I am reading of other parents who as soon as their child got an ASD diagnosis, they also saw a geneticist. That, and the fact that developmental pediatrician he saw said [the appointment he was diagnosed at] that this was the last time we would probably see him. So much for continuity of care.
  • I am getting Buzzy tested for food allergies. I am tired of trying to guess and second-guessing if this food or that food is okay. I want to know for sure. I am going to have this done in a couple of months at his next appointment. Maybe. If I can do it locally (and sooner) I will end up doing that. Action is progress to me. 
Well, that's really all I have for now. I have plenty to keep me busy for sure. 

Monday, January 28, 2013

Appointment Updates

      On Thursday we had our much-awaited appointment. The two hour drive up there went (relatively) uneventfully  but we were about 10 minutes late. I have no idea how it took us 20 minutes to get loaded into the car and out the driveway, but there you have it.

      We went over the blood work first. I can't remember the significance of the creatinine level (oops), but she said it wasn't a big deal. The alkaline phosphatase wasn't a big deal, either  She said that level was probably a little off because it is in kids who are undergoing growth spurts. So, the blood work had nothing we needed to take action on.

      I already talked about Buzzy's poop results at length. What the nurse said we needed to do was get his clostridium down and increase his lactobacillus. So, we added a yeast supplement (Saccharomyces Boulardii) and added a single strain lactobacillus product.

      However, the night before his appointment, I took him off the probiotic that I put him on - my thought being it was too much for him and was causing his decrease in appetite. I guess I was right - since putting him on the doctor prescribed ones, his appetite has returned and he is eating like he used. And I am breathing I sigh of relief. No more self-prescribing for me, I guess.

      She also added methylfolate because of the MTHFR mutation. After he is on all of these new supplements, we are going to follow up with a urine test. I am actually kind of confused about the requirements of the test. I thought the nurse told me that he needed to be on the new stuff for 6 weeks before we tested him. When I read the instructions for the test, it said he needed to be off all of his supplements for at least 24 hours. Hmm. So, I called and asked. And they said he need to be off of his supplements. But, I am still confused - if he needs to be off of them, why wait 6 weeks? Or maybe the follow-up appointment was for 6 weeks out and has nothing to do with when he's on or off of things. Sigh. Maybe I will have to re-read the paperwork.

      And have I mentioned that the thought of taking him off of his supplements for even one day makes me twitch?

      Either way, we go back in about 5-6 weeks to talk about what the urine test results are and see what the next steps are.

      We still have obsessive speech. We still have a lot of time spent playing with vacuum cleaners and my iPhone and not much time being social. We still have me eating holes in my stomach with worry/stomach acid. And there are times when I am proud - so proud - of his accomplishments and then I hear about someone with a child his age (or younger) and what they are doing and I feel like I crash down to Earth again.

      In other random news, today wasn't a particularly good day with speech. Buzzy had a number of frantic, hysterical fits and he did maybe 15 minutes of work. He did well in ABA, so I am not sure what was going on there. I just found it terribly frustrating. I had to stay with him the entire time, and baby kept distracting him. Usually we do speech at the kitchen table, while he's strapped in his booster chair. We had to do it in the living room in his EduCube, which was fine and all, but he was very distracted, as I mentioned.

      Here's hoping all of that is die-off and in another week he makes even greater strides forward!

Sunday, January 27, 2013

Taking a sick day

I have come down with some sort of crud that is making me feel like death. I will do my best to get an update in tomorrow. Chills, then I get hot, aches, pains, and misery.

I feel as miserable as Sheldon acts on the Big Bang Theory when he is sick. I also feel like a wimp. My husband has been taking care of me, so hopefully tomorrow will be a better day.

Wednesday, January 23, 2013

Of haircuts and headway

       We still have our appointment Thursday. That's tomorrow. Yikes!

       We still have ABA tomorrow, too. We will be doing 8:00 to 10:00. That's early for some of us, considering how my husband has been sick this week and baby hasn't been sleeping well at all. She seems to just be constantly crabby, even all day. I am not sure what her issue is, but I hope it resolves soon. Sleep deprivation is no fun.

       The Buzz has been eating less and less lately. He used to have such a hearty appetite, but he's eating pretty lightly now. I worry. I worry about all kinds of stupid things. I worry that he's going to get worse because he's not getting enough healthy food to eat. I don't have too much control over that, so I guess I need to let it go.

       We took Buzzy to get his hair cut today. He did a lot better than he did the last time we got his hair cut. He only whined a few times, but he didn't have the all-out crying fit (where I had to bear hug him most of the time) and then I had to hold his head still. That was fun. We have started using his pressure vest, so I made sure he was wearing that when we started. I am not sure it helped, but I know it sure didn't hurt. I am trying to get him to wear the pressure vest as much as I can at home before the more difficult parts of his day come. I am hoping it helps.

       We also have been having more tantrums here, ones that I can't predict or anticipate. He started with one this morning, but I am wondering if it was because I didn't get him up right away and just let him be awake for a bit before I went to get him ready. He wasn't upset or anything, just awake for a little while before we started the morning fun.

       Well, that's really all I have for the moment. I will do my best to update before Sunday if there are some Earth-shattering developments, otherwise I will keep to the schedule.

Sunday, January 20, 2013

Here we go!

I was puttering around the house the other day, composing an awesome blog post in my head. And it was something more profound than "I am waiting for poop test results". And yet, here I am now, and I have nothing witty to say and nothing profound to write. I guess by the time I am "allowed" on the computer, I am too worn out to dig very deep and writing something that doesn't suck. Ha ha. 

Buzz is still obsessing with vacuums, cords, electrical outlets, and the like. He is still talking about the vacuum and how it broke the light. And how it ate his pants. He has added "gross" followed by one of the family members' names - usually baby. And he will look in the pantry and point to all the cereals he can't eat and say "gross yuck". I had to train him to do that. We don't want him to want to eat those cereals, or to even want them, so it appears my teaching has worked. [The only reason we have those cereals is because my sister works for General Mills and she got them for us.]

He has started to nod and to say "no". And I continue to struggle with myself when I hear about kids his age and what they are saying and doing and how far from that ability level it feels like he is. I have decided to tell myself as long as he is caught up by kindergarten, his chances are good to lead a "normal" life, whatever that may be. That usually makes me feel better. I know it beats where I was even 4 months ago. 

We are also experiencing a lot of echolalia here. I sometimes imagine what my day would be like if Buzzy were developing age appropriately, and to be honest, it's like a blank, black image. It has been so long since I have had a child his age and I just don't remember what it was like. I have no perspective. 

Okay, well now that I have that out of the way, it's time to talk POOP. We finally got the results in the mail! Once I started reading it, I was wondering what went wrong, because the results were so normal. Mostly. He had absolutely no evil bacteria present. Small amounts of "commensal" bacteria - those which are neither beneficial nor pathogenic, and a good amount of expected and beneficial bacteria. He was low on Bifidobacterium, though. And the weird part - he had absolutely no Lactobacillus and Enterococcus. I am wondering if those latter two flourish when you have a measurable dairy intake. Or if his system is just really bizarre. 

Yeast - none found. No parasites. No protozoans  (I would have died if he had parasites. I hate anything resembling worms, unless it's earthworms or other innocent worms. Maggots and lavae make me insane, though.)

All the other tests fell within the normal ranges, except for secretory IgA. That was low. And from all appearances (based on my consultations with Dr. Google) leads to many of the issues we are seeing with Buzzy. Low IgA contributes to the whole leaky gut idea. So, I suppose it's amazing that Buzzy doesn't have more issues and isn't sick more, since his immune system isn't doing what it's supposed to doing at the most fundamental level. 

We have an appointment on Thursday to go over these results and the ones from Buzzy's blood tests. I know they will recommend a more focused probiotic (I am hoping it's the one I already bought and am using on him - which I bought before I got the test results). Also, I am guessing they will recommend a glutamine supplement. So, we will see about that and what else they might suggest. I am sure there will be at least more thing to supplement him with. 

I am still kind of surprised at the results, though. I thought Buzzy would be over-run with yeast and have oodles of nasty bacteria in him. In fact, I did a double-take when I saw the initial test results. I guess the Buzz is full of all kinds of surprises! 

I may not do an update until after his appointment on Thursday, unless I have a lot to say about this week. So, either Wednesday or Thursday I will have an update. 

Wednesday, January 16, 2013

Midweek News

       Still no progress on the poop front. Every day I check the mailbox waiting for something from Buzzy's doctor. Yes, I am going to call tomorrow. I can't stand it.

       One of the behavioral analysts that was here to evaluate Buzzy said they had openings for speech therapy at their office. She said she put in a referral. As we know, I hate waiting. I called today not mentioning anything about a referral. She said they would now move to the next step: getting insurance approval and I would hear back "later today or tomorrow". I didn't. So, Plan B. I call back and get it started, like I do (it seems) every other time.

       I also set up Buzzy to go back to KCC this summer. So, we are taking a vacation to Michigan as a family and getting Buzzy therapy at the same time. Kind of twisted, but I know he will be seeing the best there is in the area, and we will get to do a road trip. I set up speech and OT for him while we are there.

       I still haven't heard back from our services coordinator about a meeting "in January" about getting him placed for school in August. I am really irritated. We also are supposed to have a transition meeting 6 months before the Buzz turns 3 to talk about where we go from here, and that's obviously not happening. I have called twice. Ugh.

       Please, don't think I am a nasty piece of work when I call and nag all these people. I understand that the person I am speaking with directly has none of the blame. I blame the state of Illinois and the system in general. I may occasionally talk about how frustrating things are to them, but I am not rude or nasty. I do wonder if they roll their eyes when they hear it's me on the other line. Of course, that's never stopped me from making phone calls.

       Also, I am looking into getting him more OT. It has come to my attention that the OT he is getting at home may not really be doing anything useful. And that we need all of the special ball pits, tubes, slides, swings, etc. for it be really be beneficial. Sigh. And the only way we can do that is to go outside of the home. Yay! So, I have some feelers out and I am looking into that. I am not sure when we would pick it up. It's something that I need to see if insurance will cover it and then see if there are openings and go from there.

       Buzz is doing great with ABA. He knows most of his colors and numbers 1-9 (except he gets 6 and 9 mixed up). He is putting 2 words together. He is just making incredible progress.

       However, he is still super obsessed with the vacuum cleaners and cords and "charging" things. We will keep up what we doing and keep hoping that some of my phone calls get some more things going on.

       Tomorrow are our early ABA days, so I need to get going and return to the family. (Although the break I get from them while I blog is pretty sweet!)

Monday, January 14, 2013

More Changes

       I know, I know. I missed posting yesterday. (I hate missing a day!) I did have a good reason, though. I actually showed up to a book club meeting. Ha!

       Buzzy has been worrying me for about the last month. Well, more than usual. He has been eating terribly and causing me a lot of frustration. It's not that he's eating things that are unhealthy - it's more like his already limited diet is becoming even more limited. There were some days where the only things he ate were cereals and fruits. No meat. Which was driving me crazy. He was eating hot dogs, but I was buying crappy ones, and I felt really guilty. And he was looking a little pink around his eyes and getting what looked like allergic shiners.

       I still have no definite idea what caused them, except maybe the crappy hot dogs or the chocolate (GFCF chocolate, but still chocolate). But they have definitely diminished the last few days.

       We found a grocery store that carries quite an extensive array of GFCF foods, which is awesome. I wish it were closer. I wouldn't have even been motivated if it hadn't been for a fellow blogger, whose son has apraxia and she went over what her son ate every day. All I have to say is that Applegate Naturals makes some pretty awesome stuff. We got organic 100% beef hot dogs, salami, chicken nuggets, and turkey patties. I know Buzzy will eat the first two things (he already has). I am hoping he will also eat the latter two. I also got some hemp protein powder, which I will be putting into smoothies and having him drink part of as well. I will worry about getting veggies into him later. And I bought some chicken links (breakfast sausage). I didn't get a chance to see if he will eat those, yet.

       We are still waiting to hear about the poop. I wish his doctor up north would get back to us so we can schedule another appointment. Hmmm. I feel like I have said that before!

       ABA continues to go well. I am so happy with Skill Sprout. I hope I continue to be as happy.

       Buzzy has been doing well with requesting things. I have even been using the phrase "use your words" and I think he may understand what I am asking of him. Of course, it's usually when he's thinking of throwing a tantrum, so it may not always get me results.

       I also quit giving him colored tablets to use in his bath. I wish I hadn't, but they had lactose in them, along with all the artificial dyes. I bought them for him to use as a stocking stuffer, and didn't realize they were quite nasty. I knew about the dyes, of course, but with his number of tantrums increasing a bit, I figured it was time to stop using them. I might give them as a rare treat, but we will see. It's amazing all of the artificial garbage they put in things. Amazing, disgusting, and frustrating.

       All I can say, is if you told me 3 years ago I would be shelling out $17+ for an organic chicken, I would have sworn and then laughed. But, I have really turned into one of those label-reading crunchy granola type moms. I am not sorry about the change, and I know we will all be better off for it.

Wednesday, January 9, 2013

Plugging Along

      We are just plugging along here. Buzzy is doing well with his ABA. But, each subsequent appointment he gets more and more reluctant to go downstairs and get started. He has been very attached to me lately, and really wants me to go downstairs with him. Today it took him about 15 minutes to stop crying they said. It makes me sad to know he is upset at the start of it, but I know they are doing a good job with him and it's very important for him. So, we press on. Ha! I can't even imagine what it will be like to send him off to school here in about 7 months. I know it sounds like a long time away, but it's not really. I know it will be here before we know it. Hopefully he is more mature and doing so much more at that time. Of course, I don't really need to worry about this until later.

      We have started getting some of the sensory aids this week. He really likes his weighted blanket. It is lighter than the one we had on loan, and I think he likes that better. He also got his pressure vest today, and a visual time yesterday. We haven't done anything with the latter two, because his OT wants to come up with ways to use them. ABA has used the weighted blanket (as has OT). ABA also was looking at using the pressure vest. Buzzy wasn't too excited about it, so they will wait till his usual therapist is working with him. I am still looking forward to the EduCube, though. His OT feels that will really be helpful. I imagine it will be here this week (I hope!).

      Also, the poop results came in. BUT (isn't there always a "but"?) my doctor's office doesn't "allow" the results to be shared directly with me. Which I find immensely irritating, and my husband pointed out, probably illegal. After all, we're the ones who paid for it! So, we are waiting on his doctor to get back to us so we can see what our next steps are.

      We got the correct shot concentration yesterday, so last night his methyl-B12 shots resumed. He is taking his vitamins and other supplements pretty well. It feels good to have that figured out. Of course, I am sure we will be needing to add more. I hope Buzzy is amenable to adding more things.

      That's all I have for now. I am learning more things that I am interested in trying with Buzzy. I hope to continue to see more amazing progress!

Sunday, January 6, 2013

Slacking Again!

       I really had intended to post something short and sweet on Wednesday, but I just didn't get around to it. And, to be honest, I didn't have much else new to report. So, I allowed myself to just forget about it.

       Let's see: the big news first: Buzzy started ABA on Thursday! Yay! He had two hours of it. I thought it went really well. He had two women working with him, and I wasn't needed (or wanted, ha ha). So, I had some free time with the baby. It was really nice. They came back on Friday for another session, which went well also. He already knows the womens' names and can approximate them. And he has been improving with the tasks they are having him do, according to the logs they are keeping. I can't really tell you what ABA looks like, though, because I am not there. They are doing the therapy in a nice little room in our finished basement.  We all hang out upstairs while that is going on and stay out of the way. He will be getting therapy for 10 hours a week. We will increase that time as he adjusts to it. They were wanting to do about 20 hours a week.

       One thing I was worried about was that they would use food to motivate him. They don't. They use praise and allow him to play with toys and whatnot. He does get a snack during the time, and I'm sure they are making him work for it, but he's not doing everything he's doing just for food. ;)

       Buzzy has started to ask for things and his language is just exploding. He is playing with something right now, chattering up a storm. " is playing with a fake fireplace - it's not really hot, more like warm) off off on on...lotion..." He has all sorts of things to say! He also asked for "blueberries" from the "fridge" today. I am really, really happy that things are going so well with his speaking.

       As for his speech therapist, he is going to be getting therapy tomorrow, as far as I know. The last time he had speech was on December 18th. Yes, it's been a while. I am probably going to say something to my service coordinator. But, not for the reasons you might think. I just realized every single one of Buzzy's therapists have had me sign something at the beginning or end of each session. I have never signed anything with this therapist. So, I am going to made a casual comment about whether that's normal or not, because I just don't know.

       We are still waiting for Buzzy's special equipment. I will have to ask at his next OT appointment where the goodies might be. We should be seeing that stuff soon (or it should already be here).

       We have stopped his B-12 shots for the moment. I am a bit irritated about that. I refilled the prescription at a local pharmacy, and they screwed it up - but I am not sure it's their fault. Instead of injecting him with 0.04 ml, they diluted the B-12 to 1 ml and everything is bigger: the amount of liquid (obviously), the syringe, and the needle. I don't think so. The other annoyance is that it was $25 to fill the prescription at the pharmacy by his doctor's office, but $60 to fill it here - and get it wrong. And they are a 30 minute drive away. Ugh. I will have to make some phone calls tomorrow. I am getting really good at those!

       I also heard back from the other (local) place that we applied to for getting a service dog. We applied at 4 Paws (in Ohio) and got accepted with them. However, we would have to fund raise $13,000 to "get" a dog. Obviously, if we badly wanted a service dog we would go that route.

       But, shortly after we were approved by 4 Paws, I learned of a place about 30 minutes away that does the same thing. At no cost to us. And, I filled out an application through them. We got a letter that sounded promising. They said they currently had dogs in training and they would be available in 6-12 months. If they feel any of those dogs would be right for us, then they would contact us (at that time) to set up a home visit. So, if you're the praying type, please pray they find the perfect match for Buzzy and we can get our service dog from them! So, we are on hold for fund raising with 4 Paws. Which makes my husband feel a lot better, because it bothers him to ask anyone for help. And I can see his point.

       The other awesome thing about the local one? A shorter wait time! If they find the right dog, then we are looking at 6-12 months. I was thinking with 4 Paws, the fundraising would take a year and then we would have about a year to wait for them to train a service dog. So, I am feeling incredibly excited and fortunate that we have this opportunity at all.

       That's all the news here. We have a full week of therapies and I am incredibly excited to see more progress. (And the poop test results should be in mid-week, woo hoo!)