Sunday, May 30, 2010

Autism hot button (warning very long and rambling)

Before I start I know this is an hot button topic especially with parents of autism kids but I want to express my thoughts.

I am currently watching Dateline NBC and Matt Lauer is doing a special on autism, vaccines and G.I. disorders. They mention specifically Dr. Wakefield and how he has evidence that autism could be caused by vaccines, specifically the MMR. While I am a big believer that children should be vaccinated, the more children that are vaccinated the less likelihood of outbreaks of disease that could potentially cause suffering or death, I do worry that vaccines harmed Lex. I'm not saying that by any means he will not finish his vaccines for kindergarten when it's time, he most definitely will, I worry that the sheer number of vaccines he was given before his second birthday may have done more harm than good. I vaccinated him completely on time with the exception of one dtap (diptheria, tetanus and pertussis) and one hib (haemophilus influenza type b) and those were due to the resident he was seeing as his primary care physician forgetting during his well child visits that he needed them. Lex's kindergarten vaccines will spread out more because he does have behavioral and developmental fall backs when he gets shots, any shots. We gave him bicillin in April for a case of strep (far easier to poke him once than try to coax him to take oral antibiotics 2-3 times a day for 5-7 days) and we saw him slide back in behavior and we lost the sign for "more". I think for him this is the natural progression of his autism in combination with the "terrible twos".

I give vaccines every day I'm at work and the bulk of the children show no signs of developmental disorders, most of them being on the current CDC vaccination schedule, I can only think of 3 other children that Dr. Whitworth sees (she is also Lex's doctor) that have marked developmental disorders, she sees the most children in our clinic. I can't honestly believe that vaccines cause autism because there is no significant research connecting the two. I believe it may trigger traits that are already there to become more pronounced (I think this is the case with Lex). I tell parents honestly that my child has autism and he has been fully vaccinated but that I don't believe the vaccines caused him to be autistic. (As a matter of fact there has been more research pointing to changes in brain development during the second of trimester being related than timing or types of vaccines given).

In other news the transition meeting we had last week went well but was very overwhelming for me. We found out that pending a re-evaluation by the school district this summer he will start a program at my old elementary school going 4-5 days a week for a half day each. The school district will bus him there and back to daycare. He will most definitely continue speech services and possibly occupational therapy. There is also a chance that we could have a speech therapist come see him at daycare but I think if he will be attending "school" that much we will do much better at not overwhelming him if we just do the half days. I have come to the conclusion I would also like to get him involved in another free local program for more speech services. I know he is progressing but he's still pretty far behind. We also sent in paperwork for another program based in our area that will help us with a diet and supplement program. It can't hurt him to take some of the crap he eats out of his diet (the kid can pack away M&M's and sugar like no one's business).

We recently saw his doctor to run labs to make sure his body could handle supplements and a diet change. So far his labs have been normal (we have gotten results for his kidney and liver function tests) but we are still waiting on levels for copper and zinc. We also addressed our concerns about his aggression levels and recent difficulty sleeping. Like we thought she thinks they may be related and she thinks that starting melatonin may help address this on nights he's particularly restless. We haven't started it yet because he has pretty much crashed of exhaustion that last couple of nights due to busy days but I think we may give it a shot tonight. I just hope he doesn't get any major side effects from it, I know in the past I have had some daytime sleepiness from it. She also recommended that we continue to try to wear him out and get him to bed on time and we do most nights.

He has been moved back to the 18-23 month room at daycare and seems to be loving it. With the exception of Friday afternoon they reported a decrease in aggression and an increase in eye contact (they think Friday may have been related to the 3 cupcakes he had at snack, he stole some from the other kids, like I said the boy loves sugar). I'm very happy to have him back with Lisa and Dani in that room, he just seems happier overall, we only had one meltdown during drop off this week and it was Tuesday. Karolyn told Nate that Lex did fine once he realized I was gone. I think it also helps that I've made it a point to sit down and chat with his teachers during pick up at least once a week to check in and see if they need us to do anything different or if we can help them with anything.

On my end things are still a little rough going with Nate but we are going to meet with our therapist during my session on the 9th in hopes that we can have an impartial referee help us. I think the current meds are helping him but he hasn't been sleeping since he has been trying cut back on some of his sleep aids. Hopefully once he's sleeping again we'll be able to really work on our relationship.

I'm also still very sore from my ganglion cyst removal 3 weeks ago. So far this is the only surgery I regret having. Had I known I was still going to be this sore I probably would have let the cyst be for a while longer (like until Lex is walking everywhere regularly). My surgeon's partner recommended resting it and icing it all weekend but that hasn't happened since we attended my uncle's funeral yesterday and Lex has wanted to be with me all day, not to mention my dog being trouble earlier when we went for a walk and pulling me all over town.

I am focusing on losing weight and getting healthier again. I know I've been down this road in the past but now I have help from my doctor and my dog. My doctor prescribed phen.termine for me to help with my out of control appetite (likely related to my pcos and insulin resistance). I have noticed a difference since starting it. I have set a personal goal of walking with Bella at least 13 miles a week. I figure she loves being out for walks and I can use the time to exercise. Besides she loves to chase squirrels, birds and cats so I'm always pulling her back on track, that uses a lot of muscles as she is no tiny puppy (50 or so pounds).

We are also signed up for our first autism walk! We are very lucky to have many family and friends agree to walk with us already. It's not until September but most of Nate's family has agreed to make the 3 hour drive to walk with us on "Team Lex". I can't wait!


Logical Mommy said...

There are some genetic theories floating around with regards to triggers and health problems, that people are just born with it and certain environmental things trigger the problems. It's something that we struggled with for a long time.

I'm really glad that he will be starting in a new program. My nephew has been doing really well with his program, which he started around age 3.

MommyP said...

I'm glad the transition meeting went well! I think preschool will really help Lex, even for half days. I know it's made a world of difference for Stephen, and the teachers at his MDO program commented within weeks of him starting that it was really helping him.

(((HUGS))) to you and Nate. It's a tough road - be strong, Mama!