4.25.2008

slacker

I've been slacking lately, keeping up on things here. Actually, I've just been busy as hell. Dietrich's been traveling NONSTOP for the past few weeks with work and I've been trying to be a single parent and it just sucks.

So, here's an update on everything:

After a horrible week last week, Holden's been WONDERFUL this week. I don't know what brought about the change. The only things I've done different - I backed off of the Taurine, and I did a DMSA suppository challenge test on Sunday. But, as it always seems, anything he has a period of regression, he always comes out of it better than before he went into it. One of the pieces of the puzzle I guess. His therapist said today that he's done great all week. He even initiated play today for the 1st 15 minutes of his session. He went into the ballpit room and played and worked in there without any problems or wanting to leave that room for 15 minutes. She said he also initiated going into another room (he has problems with transitioning from 1 room to another at the clinic) by going up to a door and saying "open". When I got there to pick him up, he looked at me and said "pee". He kept saying it over and over and then laid on the floor. He's done that twice this week at home and it didn't occur to me that he would know he needs a diaper change. But, after it happening again today, I'm convinced he's telling us he needs a diaper change! He's also looking into my eyes a lot this week. Almost as if he's really studying me. Doesn't make sense, I know, but he's really looking at me. So, it's been a good week for Holden.

I took Zoe to the GI doctor on Wednesday. She's still having episodes of nausea / vomiting. The last 2 episodes (last Friday and today) have just been nausea, thankfully. The doctor brought up Cyclical Vomiting Syndrome. She said the only way to diagnose it is to rule out EVERYTHING else. So, we're having an MRI done today (as we speak, her dad took her) to make sure nothing's going on neurologically. She has loads of bloodwork that we need to do and stool samples and urine tests, and I have to schedule an upper GI. Once all those are complete, whenever that is, we'll have a more clear picture of what's causing it. She's such a trooper though, even when she's sick.

Jackson's becoming quite the little person. He's smiling and laughing and trying really hard to walk. He also says "mama" and "dada". More "dada" than anything else at this point. He's feeding himself little cookies that I break off into small pieces. Crazy how fast they grow up.

As far as our move to Dallas, we should know something by this time next week. Dietrich's final interview / presentation is on Monday. The other person that's up for the job has theirs on Tuesday, so they want to make a decision by Wednesday. Either way, we know that whatever is meant to happen ... will.

4.17.2008

TGIF?

I hope Friday is better than Monday, Tuesday, Wednesday and Thursday were this week. Holden is out of sorts. He's screaming and crying at ABA. He's having MAJOR issues with transitions there. Changing therapists or even rooms, he's having meltdowns. He's stimming like crazy. Today, it was walking past the TV (looking at the different angles) down the wall of the playroom, and back. Over and over and over again. Drives me insane. Still mouthing everything. Chewing the binkies that he has left. Chewing on his shirt all the time.

God, please let this be a phase that will go away soon. The last things I've started are the Minerals and Taurine. Going to talk to Dr. Berger about that and see if either could make such a difference?!

On a "lighter" note (not really, but still), we got the DMPS and EDTA challenge results back. DMPS wasn't impressive - did pull some metals. Lead being the highest, but not elevated. Did pull some mercury, but again, not a lot. The EDTA challenge test pulled both lead and mercury in the orange. From what I've heard, EDTA is notorious for pulling lead ... but not mercury. So, that's good news. I have one more challenge (DMSA) and will do that this Saturday. Our next DAN appointment is May 1st and we'll go over all the challenge tests and decide which chelation agent to use.

So, anyway, please let me be thinking TGIF tomorrow morning!

4.14.2008

great weekend, but now - wtf?

We had a great weekend. My mom came over to stay with us. Saturday, we took the kids to a new place in town called Bounce. It's really just a place for kids with sensory issues. The kids loved it. Then, we went to the circus. Kids loved that, too. Sunday, we went to IKEA. Kids didn't love that as much as the adults did. Holden was very cuddly and loving and even reminded me of a "typical" kid most of the weekend. He even wanted attention from my mom while she was here - and normally he could take it or leave it. He really did great, all around. Much better than he has been in recent weeks.

Last night though, it was hard to get him settled down. Once he went to sleep, we took him up to bed and he was okay until around 11pm. Then it was up and down and up and down. He was just really whiney. He had a wet diaper (and bed, and clothes) at around 5am so I had to get him up. He had a meltdown (I would, too, if someone took all my clothes off and woke me up), so Dietrich took him into his room and laid him on the bed. He watched TV until I went up to get him at 7am. He had ABA this morning and he just had a really hard time. His vocals were off, his crying was pretty much non-stop. He just had a tough time this morning.

I'm thinking it's the lack of sleep. He normally sleeps anywhere from 10-13 hours a night, and last night, he got maybe 6-7 hours. I'll watch him and if his behavior doesn't improve in 2 days or so, I'll call Dr. Berger to see what he can suggest. God I hope it gets better soon!

4.02.2008

no. really?????

Could it be true?? Let's hope so!

AMERICAN ACADEMY OF PEDIATRICS RECOGNIZES WORLD AUTISM DAY

For release: APRIL 1, 2008

AAP media contacts: Susan Stevens Martin Debbie Linchesky
847-434-7131 847-434-7084
ssmartin@aap.org dlinchesky@aap.org

CHICAGO – The American Academy of Pediatrics (AAP) supports World Autism Day (April 2) as a way to bring together groups that are committed to finding the causes of, and successful treatments for Autism Spectrum Disorders, which now affect an estimated 1 in 150 children in the United States. Thousands of children, parents and families are coping with what can be a devastating diagnosis with lifelong consequences.

Pediatricians care for children with autism and their families every day. They are passionate advocates on behalf of these families and recognize that autism is a significant challenge to the health of the nation’s children. Pediatricians emphasize that early diagnosis is critical. The AAP promotes regular screening for autism at the appropriate well-child visits, as well as treatments tailored to meet the needs of an individual child. In 2007, the AAP published the Autism Toolkit, which includes clinical guidance to help pediatricians identify and manage children with autism, to refer them to therapeutic services, and to provide parents with information and resources. The AAP also offers a host of resources for parents on its Web site, www.aap.org.

“We know many parents are searching for answers,” said AAP President Renee R. Jenkins, MD, FAAP. “The AAP has supported research into the causes of autism and will continue to do so.” Pediatrics, the Academy’s peer-reviewed, scientific journal, has included dozens of studies on the associated factors, management and impact of Autism Spectrum Disorders.

The AAP recognizes the best way to address the needs of children with autism and children overall is through a partnership among pediatricians, parents and researchers. The AAP has met with leaders of advocacy groups, such as Autism Speaks and the Autism Society of America, which include parents of children with autism. Most recently, the AAP met with representatives of Defeat Autism Now! (a program of the Autism Research Institute) in an effort to facilitate communication between pediatricians, parents and researchers about the diagnosis and treatment of children with autism. All advocates for these children agree that further research is needed regarding causes as well as safe and effective treatment.

“We are pleased the AAP reached out recently to Defeat Autism Now! in order to better understand the treatments and interventions that we have found beneficial to children with autism,” said Stan Kurtz, executive council member of Defeat Autism Now! “We are full of hope that this is the beginning of a thoughtful partnership that will further explore factors that might cause or contribute to autism, as well as examine safe and effective treatment approaches for families coping with this condition.”

“Autism is a challenge for pediatricians, their patients and families. By working together, we stand the best chance of helping these children to realize their full potential,” Dr. Jenkins said. “The Academy is committed to working with researchers and treatment groups like Defeat Autism Now! to get closer to finding answers to the multiple causes of autism and determining effective therapies.”

For more information about autism, visit www.aap.org.

The American Academy of Pediatrics is an organization of 60,000 primary care pediatricians, pediatric medical subspecialists and pediatric specialists dedicated to the health, safety and well-being of infants, children, adolescents and young adults.

The Autism Research Institute (ARI) is a non-profit organization established in 1967 that fosters scientific research on autism triggers as well as diagnostic, treatment, and prevention methods. Through its Defeat Autism Now! program, ARI provides research-based information to parents, clinicians, and researchers worldwide, through its Web site (autism.com), call center, parent groups, conferences, science-based publications, and think tanks. (Press Contact: Autism Research Institute; email: lisa@autism.com)