December 6, 2008
A couple of HUGE things. First, we got back from Ames this morning after a lovely pre-screening of Esmerelda (which I highly recommend if you’re in the Des Moines/Ames area). It will NOT disappoint. The cast is wonderful (especially Bill and Hetty), the set design and costumes are magical and there are a ton of cool “theatrics” that I have been sworn not to reveal. Pretty amazing stuff!
ANYWAY, when we got home this afternoon, Gavin ASKED if he could put on his Elmo underwear. If you’ve been following our journey, you’ll remember that I tried this past summer to potty-train Gavin, but by day 2 he would cry and tell me he was all done going potty. Yeah, I was not successful. Every once in a while since then we’ve sat him on the potty, but he’ll sit for a while without going. So you can imagine how excited we were when he brought up wearing his underwear. And get this, HE’S BEEN GOING IN THE POTTY EVERY TIME WE ASK. This has not happened before. He hasn’t had a single accident yet and he is SO proud of himself when he goes. He gets it this time! (The down side is that he’s being rewarded with Skittles that I know are not SCD approved. Hopefully one Skittle at a time won’t do too much damage to our new diet. Fingers crossed.) I’d much rather have him potty trained right now.
The other big thing is that Gav has been spending a lot of time playing with my old doll house lately. He’s actually playing with the people inside, making them go from room to room and they are having conversations with each other. Again this is HUGE because pretend play is not something he normally does.
Is this because of the diet?!
October 8, 2008
There’s so much going on in my head right now and to keep this from being extremely long, I’m more or less going to just list everything.
-Jenny McCarthy: she’s my autism hero! Please read Mother Warriors, you won’t be disappointed.
-increased language and pronoun usage from Gav this week
-I have been so much better at getting all his vitamins and supplements in him every day
-I think I found an alternative to the Nystatin (yeast killer) that Gav refuses to take.
-Gav now knows The Pledge of Allegiance. My tax dollars hard at work!
-our new house is almost ready!
And for the nays:
-It’s possible we need to have Gav on the Specific Carbohydrate Diet. Bye bye rice, rice pasta, and rice wraps. (Seriously trying not to panic)
-Just found out you shouldn’t mix enzymes and probiotics. Awesome. Been doing it this whole time.
-Stimming and stuttering are back in full force. He must still be eating something he shouldn’t. Now I just have to figure out what it is.
-Gavin has been EXTREMELY loud lately. He is constantly yelling at the top of his lungs, especially when other people are trying to have a conversation. There’s really no discipline that quiets him down. I’m at my wits end with that whole thing.
September 23, 2008
Tomorrow is a BIG day on Capitol Hill. At 2pm tomorrow in Washington, there will be a briefing for members of Congress and their staff to update them on the recent developments on the vaccine-autism debate. Here’s the email I received this week detailing the event:
David Kirby, investigative journalist and author of The New York Times bestseller Evidence of Harm, Mercury in Vaccines and the Autism Epidemic – A Medical Controversy, will inform Members and their staff about developments in this debate from science, public policy, politics and law. Mr. Kirby will be joined Mark Blaxill, Director of the Coalition for SAFE MINDS.
Among the issues to be discussed are:
- A recent Vaccine Court case in which the federal government conceded that vaccines induced autism in one girl with an underlying mitochondrial dysfunction.
- Possible links between mitochondrial dysfunction and autistic regression, and information on several ASD children with mitochondrial issues;
- State-of-the-art research underway at top universities on the connection between environmental toxins, mitochondrial function, oxidative stress, glutathione depletion, neuro-inflammation and autistic encephalopathy;
- Research agendas from the CDC and NIH that include investigations into links between vaccines and neuro-immune disorders
- The scope and implications of the autism epidemic. How scientific politics is preventing policy from catching up to the problem.
- Ongoing research into connections between mercury exposure and autism. Why most of what is reported is inaccurate.
- Reframing concerns over the vaccine program: It’s not a question of being pro or con vaccines, but rather a question of safety management.
As the last line states, it’s not about being pro or con vaccines, but about safety management. This is a SERIOUS issue that has been kept quiet far too long. If you do not have a direct link to an autistic child, these are the kinds of issues that are easy to overlook. For those of us in the autism community, it’s crucial that our congressmen hear our voice.
In other autism related news this week, Jenny McCarthy’s new book Mother Warriors was released today and she’ll be promoting it on Oprah tomorrow. (Borders is selling her book this week at 40% off!) Don’t miss it!
May 23, 2008
Just a few things…….
I came home from dropping Gav off at school a few days ago and there was a lovely package waiting on my front steps. My dear friend Tammy had sent us some Trader Joe’s Pancake and Waffle Mixes (GF/CF of course!) There was a yummy recipe on the side of the mix for coffee cake, so I decided to make that-Gavin loves anything “cake”. It was scrumptious! Thanks, Tammy! (I’m so jealous of your easy access to Whole Foods and Trader Joe’s!)
This past Tuesday we were FINALLY able to take Gav to get his blood work done for his ION panel and food sensitivity tests. First we needed the urine sample and once we had that, we were to take him to a lab here in town. We were all ready to go last Thursday when I realized he was not supposed to have eaten anything for the last 12 hours. He had just finished breakfast. Another setback. Since the lab doesn’t do blood draws on Fridays and they are short-staffed on Mondays, we ended up having to wait until Tuesday. Poor little Gavie! He sat happily in the waiting room without a clue as to what was about to happen. I made Josh come along to hold him down (Gav’s had blood drawn before and I could barely keep him still). Six vials later, they had what they needed and we returned home with a very upset, hungry boy. (Luckily we still had coffee cake and that saved the day!)
That same night, there was a story on the news about our pediatrician’s office (old office-we no longer take our kids there). Apparently they recently sent out letters to their patients letting them know that the vaccines given from March ’07-December ’07 may be inactive. The refrigerator used to store these vaccines was found to be at an incorrect temperature, so they are unsure of the effectiveness of the vaccine. LIAM WAS GIVEN 6 VACCINES IN MAY ’07 AT THIS CLINIC. Back then, Gavin had yet to be diagnosed and I was just beginning to understand the problems behind vaccines. (I know some of you reading this may not agree with my position and that’s ok. This is my view since Gavin has been diagnosed). Liam was two months old and at the time I was very on the fence about vaccines. I went ahead with them and have regretted it ever since. This news the other night made my day! I cannot tell you what a huge relief I felt when I heard that. I had been walking around with guilt about that for some time.
If you are interested to learn why I feel the way I do about vaccines, please read these fantastic articles on the Generation Rescue site. Read their vaccination article and The User-Friendly Vaccination Schedule.
And lastly, Gav’s been sleeping much better this past week. He is no longer fighting bed time, and even though we hear him get up once or twice in the night, he gets right back in bed. He no longer wanders and we’re sure he’s not even awake when he gets up. Morning still comes awfully early at our house, but at least we’re all getting a more restful night’s sleep. Our family will be moving in with my parents starting Saturday so Josh can refinish our floors. This will probably mess up the good thing we have going, but we’re looking forward to lots of Grandpa and Grandma time!
May 12, 2008
This Beatles’ song has been rolling around in my head lately. Here’s why…….for almost the last two weeks, Gavin has been waking up in the middle of the night and is usually up for AT LEAST 2 hours, sometimes several times a night. I don’t know if it starts with sleepwalking and ends up waking him up, but it’s VERY frustrating. To begin with, he’s been having a really hard time going to bed and staying in bed. It takes a good half and hour of punishments before he finally stays in bed long enough to fall asleep. 4-5 hours later, he’s usually up again and refuses to stay in bed. Josh and I decided a long time ago that we are not going to let him sleep in our bed. We just can’t start that with him. So, one or both of us ends up guarding his door and putting him back in bed repeatedly in the middle of the night. (I feel like I have a newborn again with the small amount of sleep we’ve been getting). Fortunately Liam, whose room is right next door, sleeps through it all.
The thing is, sleep problems are common among autistic children, so we are definitely not alone, there’s just not a lot that we can do. He already takes melatonin before bed to help him fall asleep (doesn’t really seem to help though) I’m seriously hoping that once we get his body balanced with supplements this will help him have a more restful night sleep.
And that brings me to the other issue we’ve been facing. POTTY TRAINING. Well, we’re not actually doing that yet (Gav has absolutely no desire). After meeting with Carolyn Walker at Prevention Iowa, Josh and I decided to have Gavin take a food sensitivity test and an ION panel (this measures everything his body produces to determine if he’s too high or too low in certain areas. It will also determine if there is a high level of metal in his system-another common factor of autism. In order to do the ION panel though, a urine sample is needed. Kind of a big problem for us. Gav has yet to go in the potty. He’s been known to sit on it for up to an hour, but doesn’t go. (Some other problems are that the test requires first morning urine and the child should not have any liquids prior to going). My thinking was that we could just keep giving him water or juice, but that could potentially dilute his urine and ruin the test.
Last night while the family was over to celebrate Mother’s Day, Gav sat on his potty while everyone ate dessert. He ended up eating a cookie while we “waited” for him to go because he was feeling left out. Still nothing. This morning, Josh had him sit again and this time he sat for a good hour. We finally decided it was time to call it a day and then we realized at some point he had gone!!!! YAY! We had our sample!!! I got the lab kit ready and then realized there was a bunch of black crumbs floating in his urine. Apparently some of his cookie from last night had made it into the potty chair. I’m thinkin’ that’s not going to go over too well at the lab. So, we’re back to square one. At least he went. I guess that’s the first step. SIGH……….
April 13, 2008
Another one of Gavin’s “issues” is his poop. It’s always been a little funny. I won’t go into much detail other than to say it’s not solid and it never really has been. (Sorry. I’m done.) For a long time I thought it was because his favorite (and pretty much ONLY) food he was consuming on a daily basis were Amy’s Bean and Cheese Burritos.
In my defense, Gavin is my “test waffle” and I had no idea what his poop should look like and that it’s not ok for him to be SO picky. I just thought kids were picky eaters. Most are. But not to this extreme. From about 18 months on, Gavin has had a very limited menu of foods that he has deemed acceptable. For the longest time it was the burritos. Then it was Mac & Cheese. Sam’s Club became our best buddy when it came to enormous boxes of Easy Mac. Oh those 4 minutes in the microwave are a LIFETIME to a hungry toddler. But I digress……….
After a year or more of weird poop, I talked to our pediatrician about it. I was told not to worry and was given a referral to a children’s gastro doctor. For a while I was thinking celiac disease. He displayed some of the symptoms. This doctor took one look, and I mean one look, and said that was not it. Whew! X-rays were taken (yes, of his stomach) and a few minutes later, it was pronounced that Gavin was backed up all through his intestines and that he just doesn’t like to poop. WHAT? You have to understand something. Gavin was pooping after every meal. How can you sit there with your specialized medical degree and tell me that he doesn’t like to poop when he does it 2-3 times a day? We were confused, but hey, he’s the doctor, he knows what he’s talking about.
We walked out of that office that day, a prescription for laxatives in hand. After a month of laxatives and a follow-up visit where we were told to keep up the laxatives, I finally got smart. This guy DID NOT know my son. I do. Gavin isn’t afraid or doesn’t like to poop. THAT’S NOT IT. I was angry at the doctor for not digging deeper into the issue. I was angry at myself for believing everything he said and not questioning anything. I was angry that I had paid for 3 prescriptions that were not helping. I was angry that I didn’t know what else to do.
So we did nothing, for a while…….