Family Updates.....5/31/08

Hi Everyone,

I've had this blog for a while so I could save and share some of my pictures with friends and family. Anyway, it's been largely neglected for the past 2 years so I decided to change it into a place where I can update everyone on us. A lot of people have been asking me about Quinn and what's happening with him. Since it's all pretty confusing (even for us) and it's quite lengthy to explain over and over, I've decided to keep his updates here for you all to read as well as the other latest happenings.

In March Quinn was referred to the pediatric neurologist for autistic like symptoms by our pediatrician. Grant and I were pretty skeptical of the "autism" diagnosis but we felt it would be best for a specialist to make that opinion. After interviewing Grant and I, providing marriage counseling (heh heh just kidding), and examining Quinn the neurologist felt that Quinn was speech delayed and met the criteria for PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified.) You're probably asking yourself "What the heck does this mean???" This means that Quinn has a lot of autistic like features but does not fully qualify for the autism diagnosis. As we've learned, autism can mean many different things. The easiest way to describe it is to think of Autism on a spectrum from 1-10 with 1 being meaning a very high functioning person with mild symptoms and 10 being a person who is unable to communicate and has a more profound form of Autism. Here is a link from a reputable website that talks about what Autism is if you feel inclined to learn more.

http://www.autismspeaks.org/whatisit/index.php

The neurologist ran several different tests on Quinn to see if he could pinpoint a reason for his speech delay and to make sure he wasn't having seizures. One of the tests he ran was an EEG (Electroencephalography.) For more info on what an EEG is click the link below.

http://en.wikipedia.org/wiki/Electroencephalography

In my previous post are some pictures of Quinn during his EEG. We got him hooked up and then brought him home for the night. The next morning I drove him back to have the electrodes removed and then took him home for a shower and a hair style.

The results are back..... We saw the neurologist again on 5/30/08 and were told that Quinn had an "abnormal" EEG. There were several times when he was sleeping where his left and right side of his brain were not in sync and there were some spikey things recorded in his brain activity. What does this mean??? I'm not sure either but the neuro said he doesn't want to see spikey things in an EEG. The rest of the appointment sorta went by in a blur. I guess there is some correlation between the "spikey EEG's" and developing epilepsy in the teenage years. :( He put Quinn on Depakote (A.K.A. Valporic Acid.) It's used to treat seizures and is also used as a mood stabilizer for people with Bipolar Disorder.

The good news is that the neuro has seen some gains/increases in speech while using Depakote and there is some speculation that if we treat Quinn's "spikey brain patterns" now we could prevent him from developing epilepsy in his teenage years. We will return to see the neurologist in 2 months to see if Quinn's speech is progressing and repeat another EEG to see if the Depakote affected his "spikes." If so, we will keep him on Depakote for a while (maybe a year or two) and then take him off and see what his EEG's do.

As for us.......I thought I'd pass along some tid bits for when we talk next time.

A LOT of people have been asking me if I've read Jenny McCarthy's book on Autism. Yes, I am aware she has a son with Autism and yes, I've read portions of her book. No, I'm not in agreement on everything she's done to help her son as many of the treatments she's used are somewhat controversial and difficult to follow.

Yes, I am aware of the gluten free diets and the dairy free diets. So far the reasearch is inconclusive as to the effectiveness in these diets on children with Autism. We struggle every day with getting Quinn to eat ANY food let alone specific foods. Our goal is to make sure he's at least eating something healthy every day. Until the research comes out about the direct link to advances in these diets, we are currently choosing not to follow them.

Yes, I've heard about the claim that vaccinations may be linked to Autism, and yes, both of our boys have been vaccinated on schedule. There was no thermisol and no mercury in the vaccinations our boys received. They stopped using mercury in the vaccinations prior to the time our boys were vaccinated. Furthermore the research is inconclusive as to vaccinations causing children to become autistic. Here's a link if you need more convincing.

http://www.autismspeaks.org/inthenews/freking_ap_vaccine.php

Well now that I have that out of the way I can tell you what would be most helpful for us. Don't be afraid to ask us about Quinn and the latest and greatest. This is a lot for us to think about and it's nice to have friends and family to talk to that are understanding. Some times, we may just need a sympathetic ear. Please when you see Quinn go out of your way to talk to him and see if you can get him to make eye-contact with you when you talk to him. I know he's shy and takes a bit to warm up to but he needs to practice eye-contact and social interaction with others. I promise this will be the most serious post and I'll ease up from here on.

What's next?? We're waiting for a referral from Quinn to have an MRI and more blood work to make sure he's tolerating the Depakote well. I will post more as we find out.

Bonnie