So We Begin.....

Derek's td-dmps arrived today and he got his first dose tonight. I'm scared, nervous and hopeful all at once. We are doing a bit of a different protocol than most use the td-dmps for. Instead of every other day doses we are doing every 8 hours, but the dose is broken up smaller, this is to keep the dose more constant in his system.

I've found we are in good company though, maybe only a few, but there are others doing the same. I'll keep everyone updated as we begin. I'll also have another link soon, with some of Derek's pictures that he draws scanned in, he's pretty remarkable.

Where We Are At

Seems very little has happened recently. I feel like we are in a hurry-up-and-wait mode. We've heard back from some of Derek's tests. Good news he was negative for Fragile X. His hair test first came back and was put to us as "deranged metabolism" and it was to be re-ran under a different test. We still haven't heard back yet on the second test. His TD-DMPS was to be ordered but I haven't seen it nor heard if it was.

The last week was pretty nuts, sometime last Tuesday or so he flipped his schedule almost in reverse and that made it rather unpleasant, him and I both exhausted. Last night it was better and I hope it will continue to get better. I also had pulled all vitamins and minerals just to see if those were causing problems and now I get to add them all back in slowly. I still am having a heck of a time getting cod liver oil down him despite trying all different brands and hiding it.

I'm going to a meeting next week where the mom has got her insurance to cover her ABA therapy. I hope to learn something and take action on our end. I really want to see some therapy in here soon.

Enough of the boring stuff, how about some cute things for the little guy this week?

We have this new little vacuum called a Roomba that runs over the floor, and is in the shape of a circle. Derek finds it pretty fascinating and calls it "circle"

Last week, when saying goodbye to relatives daddy piped up with "goodbye, see you soon", now when you leave Derek tells you "bye, see...soon" Its rather cute!

So there's our little update, isn't much to tell right now, hopefully I will next time.

Update

This is a copy of a letter that I emailed tonight, just in case you didn't get it I'm also posting it here.
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Dear Family and Friends,

Many of you have emailed asking regarding how Derek is doing, and my apologies for not getting back to you, and apologies for such an informal letter. I just have not had the time to respond to each one, so I hopefully can just cover all at once.

Derek underwent a thoroughly evaluation at a local hospital in October that specializes in children. It was a day long process, meeting with developmental pediatricians, occupational therapists and audiologists. They did confirm that Derek is autistic, but falls into a high functioning category. They left us with many recommendations and suggestions which we are working on currently. The diagnosis wasn't a huge shock, more of a relief as we've been pushing for answers for so long.

Our journey to work towards helping Derek is going to lead us on a path of many choices. We've found that within the autism community many different beliefs and ideas as to why and how to fix things. Some are basic therapies, some are intense therapies, and others are biomedical approaches. We feel that attacking this at all angles is what is going to work for us. Even though many of the experts disagree with each other, the one thing they do agree on is to do whatever it is as young as possible and the child will have a greater chance at having a better recovery. So we are starting now, have started really. We've gone the biomedical route first as its been the more simple of the two, and Derek will begin a process called chelation within the next couple of weeks. Basically this process will remove heavy metals from his system. Thankfully a doctor back east with an autistic son has made up a formula that is transdermal, meaning it can be rubbed on the skin so that becomes one less pill/vitamin/mineral we have to coax down Derek's ever discerning palate.

Therapy is there, and available, all one needs to do is decide what works best for their family. At present we've been suggested that 20-25 hours of therapy per week is good. The bad part is coming up with the funds to do this therapy. It turns out though Oregon has one of the highest autism rates in the country, its also the worst state for accessing any therapy through the schools or respite programs. We've found local groups of other parents and what happens is parents either pay for this out of pocket, incur insurmountable debt, or leave the state. We are looking at all options right now. I'm not sure what we are going to do.

My apologies again for not corresponding with everyone, my head has been buried deep into chelation methods and therapy leads. I come up for air to spend time with my family and that's about it anymore. I've had to abandon some desires and dreams but I'm sure those will be there when our little guy is doing better.

I have started one of those online blogs, but I've been terrible at keeping it updated, but it may be the best information you'll get out of me at times so please check in there when you can, maybe now that I've told you all I'll have greater pressure to keep it recent. The URL is http://www.livejournal.com/users/stacy_c/

For those that can offer me ideas, or put me in contact with someone you know in Oregon who might have ideas or suggestions I'm open to everything. To those who I've been corresponding with for the past 6 months on GFCF diets, chelation and everything else thank you so much for your help so far, you have been wonderful and so informative. Please let me know how your ASD kids are doing, I haven't heard from many of you in a while, I'm sure you are all just as busy as we are.

If anyone has any desire to donate to charity or into those bands everyone wears (as in the Lance Armstrong type) please think of autism research, no one in particular just research, anything to help us all find out how to help our kids.

Our love to all and may you have a wonderful Thanksgiving.

~Stacy

Diagnosis: Autistic Disorder

After months of knowing the inevitable, we have our official diagnosis. 5 hours of meeting with OTs, speech therapists, developmental pediatricians and we've been given the low average probability that Derek is autistic.

Now armed with an official diagnosis we move forward, or at least so I thought. They say there is no cure for autism, but just spend a few hours in a book store, or on the web and you'll find hundreds. Of course no one agrees with one another, from going the route of ABA to giving your child medication they use for lead poisoning (to remove mercury) you can find it all out there.

I think we are falling somewhere in the middle of all of this. I agree wholeheartedly that Derek needs therapy, as recommend20-25 hours per week with a 1:1 ratio. At the same time I won't rule out having him tested for heavy metal poisoning. This is where the fun comes into play with all the possible treatments. This is one place no one can seem to agree. And for a parent spending so much time researching and researching and trying to determine what road to take for their child is just beyond overwhelming. I cannot even begin to tell you my frustration level right now. You want to heal your child, you want to do it right, you don't want to hurt them or put them through anything unnecessary. So which way to turn? Who has the right protocol? What has the best success rate?

Our journey is taking us to Seattle WA, to meet with an ARNP (a nurse with a PhD) to discuss her method of chelation. For a 3 hour drive and $135 an hour it seems almost insane. We have to begin somewhere.

My apologies for the lack of updates, I never had much to update on, as we have been in a "sit and wait" mode for months now. Now that our diagnosis is done I feel I'll have more to talk about as I continue my search.

conversations

Derek: Mama?
Me: Yes, I'm mama (pointing to myself)
Derek: OK!
Me: OK!
Derek: Why?

He also had a conversation with daddy about a "ellow" (yellow) and orange
block. He even picked out the right colors.

I'm seeing leaps and bounds all the sudden with speech, seems like there is
something new everyday, and his patience level with wanting or needing
something is so much better. I can't remember the last time he was banging
his head into me, I'd say its been a week to two weeks at least.

Things are still going well. Derek had an off day earlier this week but we were able to bounce back to a more normal schedule in just a day, which was very nice.

We visited a friend in Seattle this week and went to the Wild Waves amusement park. Derek didn't do so well, it seems just as he might be enjoying himself something would happen and it would ruin it. I realized though, that with spending time with another 2 year old how much I want to get him better so that he can enjoy things and not miss out.

He had a banana again one day, and I didn't see anything negative with it, no red cheeks, and I gave it to him early in the day so I didn't see any sleep problems. I think I will add back in banana's and applesauce but in small doses and keep it to early in the day. If I see red cheeks or sleep issues I can pull them back out. The problem may have been is that some days he was eating 2-3 servings of the two items in one day.

He's still getting the Super Nu P5P but I'm keeping it a 2cc dose right now. I need to get information on how much he is really to be getting. Also the 2cc is what I can slip into a cup of yogurt. I need to find other ways to sneak it in slowly.

I'm also researching making or buying nut milk and replace some of the soy out of his diet so he doesn't develop a sensitivity to that as well. He really loves his soy yogurt so I wouldn't want his soy milk intake to cause problems.

Tonight while playing with Daddy he said "yellow" and "orange" and then correctly showed a yellow and an orange block to daddy. Not sure if he was just copying or if he really knows those two colors. I've noticed pointing more often, still not a lot but its coming out stronger.

I've ordered Special Diets for Special Kids, and Children with Starving Brains to read. Now that I know that going GFCF is working so well I'd like to see if I can expand Derek's diet some.

Things are about the same since the last update. Derek was a little off on sleeping patterns over the weekend, so that made for some long nights before he would go down. But it hasn't been hard to push that back some, which is a huge difference from a few months ago, something like this would take days or weeks to get him back on a more "normal" clock.

I've been using the mag sulfate cream every night on his back, but having troubles with the vitamins. Once I got up to about 3.5cc in some juice he could taste it and wouldn't drink it. I have the powdered vitamins too, so I will see if I can sneak those into some yogurt since he loves yogurt. He's still not getting his high phenol foods- applesauce, banana's and raisins. I need to look into when I could add them in, or how to rotate them in for him.

His newest learned and remembered word is "rain". It started raining here a few days ago, and he stood at the window and watched it downpour for a good 5-10 minutes one morning, he was pretty fascinated by it. He's also become very interested in his reflection, we have glass/mirrored fireplace covers on both fireplaces and you can watch him playing with his reflection often. He got a new toy over the weekend, its a truck with a car carrier and a car. Derek and his brother Tristan were playing with them yesterday together, I was so excited to see that!

We got his forms for admission for CDRC, I need to finish them up and send them in, and we wait for that appointment. Next is finding a DAN! doctor in our area, there are a few listed but I'm hoping to find others with some opinions on them.

yesterday

Derek had a blast at the beach yesterday, he loves playing in the sand and taking long jaunts (with mom in tow) down the beach. I need to find some new sunscreen for him, the stuff I have makes him break out when I put it on him.

I went with a friend who has a 6 year old son and 1.5 year old daughter. Yet again I had someone say to me something regarding Derek's personality. This time my friend mentioned that her son also would play alone and ignore other kids until he hit kindergarten. When he was around 3-4 my friend had mentioned that a doctor said he was ADD and put him on ritalin. I remember at the time Mothering Magazine had put out an article on ADD/ADHD kids and the Feingold diet, I copied it for her and mailed it to her, she poo-pooed it saying it wouldn't work and she didn't have time to implement such a diet. She also mentioned how hard her child was to handle until they met this doctor and all is well now. I'll make sure to take note of that name, and not be seeing him.

Comparing her 1.5 year old and Derek was such a stark contrast. I know I shouldn't compare but to get and idea of where he should be makes me shake my head. I have two older kids but I've long forgotten their milestones and when they reached them. She was much more sure of her mobility, and just seemed more "sturdy". However, her at dinner compared to Derek made me very glad. Derek is happy to sit and color through a dinner most times as long as the ambient noise is low. Her daughter wouldn't sit still, kept climbing in and out of her booster and onto the table, throwing things down to be picked up again, and just all around acting like a perfect toddler :-)
I will admit its nice having a low keyed child in that situation.

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Derek had his haircut today and it was not fun. He's had thick curly hair from birth and we really only get it cut when its getting very out of control. I had him on my lap and he cried most of the time, I feel so bad, because I'm sure he doesn't understand why this is being done. After it was done, he was fine and got a sucker out of it, so all was good. He always looks so different with a cut, so cute too!

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He slept very well last night, after only about a half hour nap yesterday, he did wake once for a bottle but right back to sleep. Last time we had a busy day like that he was up and down all night.


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Wed. Night
2.5cc of super nu liquid
forgot to use the mag sulfate cream
5mg melatonin

adding in minerals and vitamin

Things are going good. After this past weekend I was concerned when I found out that a visiting relative gave him 3 bites of mac and cheese, but it had little to no effect on him that I could see. Yesterday we started vitamins and minerals, we're using Kirkman Labs Super Nu P5P in a liquid, and I also picked up some magnesium sulfate cream. Just a tiny tiny little dab is equal to what he was getting in the bath with the epsom salts, and since its a cream it doesn't wash off like it does in the bathtub. I'll keep a record of it and his reactions here for comments on it. He's still on no phenols but has taken to eating pears! Any new food is good news. I think we'll give peaches a try next. Then maybe he can consider adding in vegetables, that's a big maybe. I've been a bit concerned about his speech, I'm not sure what to make of it. He has these long drawn out conversations with us, but I can't understand but two words maybe. I feel like he's really trying to tell us something. Last night I was sitting with him while watching Blue's Clues and he was mimicking the program, yelling out "a clue!" or "right there!" and "notebook". He would look at me to tell me about it, and its almost like it was serious work to get that to come out of his mouth. Almost like he had the thoughts in his head but he couldn't formulate them into words. I wish I knew how to make it easier for him. We're heading to the beach today, last time we went he did good, he really likes sand. Hoping today will be a good one as well. --------- Tues night 2.5cc lemon-lime super nu P5P- no reaction that I could see 1 gram mag sulfate cream- got extremely hyper right after I put it on, could have been since he was over tired too, will see how it goes tonight

Its been a long time

But I'm back! Things have been going well, it really has been amazing seeing how well the GFCF diet is working out. Derek adds 1-2 new words a week, though still doesn't always use all of his learned words often. Last night he sat on my lap and had a good 5 minute conversation with me, all in babble! Its great to see him doing that but I just wish I knew what he was saying to me. For the last two days we've pulled high phenol foods from his diet as well. He still has the red cheeks and dark circles under his eyes and those both usually indicated high phenol issues. So right now no more grapes, raisins, bananas, and applesauce. Of course the only fruit he was eating. *sigh* But they say that the foods they crave could very well be the ones that they are allergic too or have problems with. Next would be soy, and that will be interesting. Derek took to soy milk very well, I was surprised. But he just loves soy yogurt. Since cutting out the high phenol foods two days ago he's slept through two nights. He had been doing great then started waking again, or waking up around 5-6am only after 5-6 hours of sleep. We are still in waiting for an appointment at CDRC for an evaluation. Plus I need to get a list together of testing he should have done and present it to his pediatrician and cross our fingers that his insurance will at least cover a good portion of it. I'd much prefer he only get stuck once for any needed blood tests, rather get them out of the way now. That's where we are at now, I'll try to keep this more updated.