5.30.2007

Biomedical Protocol

We had our appt with Dr. David Berger in Tampa a few weeks ago. Here's a timeline of what we've done so far:

May 18th - 1st appt with Dr. David

May 19th - started epsom salt baths (1/2 cup per bath) & cod liver fish oil (1 tsp.)

May 21st - stopped cod liver fish oil (supposed to wait until he's been in the epsom salt baths for 1 week before starting, so I stopped to get things back on track).

May 25th - started cod liver fish oil again (1.5 tsp., increasing to 2 tsp.)

May 27th - started NuThera hypoallerginic vitamins (without A & D). 2 capsules per day, mixed with milk or juice.

May 30th - gathered stool and urine samples for labs. Sent in Fedex.

Dr. Berger thinks Holden has a sulfate deficiency, based on a few of his symptoms that suggest it. His symptoms include: night sweats, bumps (or rash) on the back of his upper arm, and the tips of his ears are more red than his cheeks. He explained that our bodies need sulfate to be able to detox itself from toxins that are in our bodies. The epsom salt baths are supposed to help replinish the sulfate. Based on what I told him, he thinks I may have a "sluggish" detox system too. Which means that it wasn't a good thing to consume a lot of sushi and tuna melts while pregnant with him.

The cod liver fish oil is from Nordic Naturals. It's strawberry flavored. I can't stand the smell of it, but Holden doesn't seem to mind the taste, too much anyway. Dr. David says after 2 weeks or so on the fish oil, we should see an increase in attention, focus, and eye contact. I hope so.

The stool and urine samples I'm sending off today are to test for a huge array of things. Overgrowth of yeast, which he suspects he has from the prolonged use of antibiotics. Holden was on antibiotics for the first 14 months of his life due to hydronepherosis and bi-lateral kidney reflux. I think this urine test will also test for toxins and metals in his system.

Dr. Berger also suggested a few things for me since I'm entering the 3rd trimester of this pregnancy. 1.) he suggested I take 1 capsule of omega 3's fish oil everyday (which I purchased from him). 2.) epsom salt baths. 3.) Vitamin B12 w/folinic acid nasal spray. I haven't gotten this yet, it had to go through a compound pharmacy.

Our followup appointment is June 18th. At that appointment, they'll do bloodwork, which will not be fun. Dietrich will definitely be going to that appointment with me!

So, we're hoping for the best. I've talked to a lot of moms and if nothing else, my son will be more healthy than he ever has. I truly believe that his autism and symptoms were triggered by the vaccines he received, the antibiotic use, and other environmental factors. I hope we can get his body and brain back to where it should be, so that we can begin his recovery.

*crossing everything I have*

5.17.2007

"sissy"

I went in to wake up Holden this morning. Zoe came in and got on the bed. She went up to him to give him a kiss and he said "sissy". Her eyes got SO big and she said "mama, he said SISSY". I said "yes, he did sweetie". He smiled. When it was time to take her to school, I told him we were taking sissy to school. We walked into the garage and he said "sissy" again. It just made her day. And mine, too.

5.16.2007

moving on

I finally got a few calls from the providers who will be doing Holden's in-home therapy from Early Intervention. Finally. The behavior therapy will start the 1st week of June. I don't have exact dates and times yet, she's calling me next week to give me those. Let's just hope she actually calls. If not, I'll call again. I think they know that about me by now. The Speech therapist called me today. She's going to try and schedule something for as soon as next week, so that would be nice. Should know for sure in a few days, as she "said" she'd call me back. I'm hopeful, she sounds 'nice'.


Holden has an appointment with Dr. Berget in Tampa. He's a pediatrician (M.D.), but he's also a DAN! doctor. I don't know what to expect with the first appointment, but I'm anxious to get the biomedical approach started. I've talked to a lot of moms lately, and the majority have seen improvements in their children. I firmly believe this will be Holden's case, too.


I've started going to a playgroup once a week through EI. It's held at a local church, and even though the 1st time (last week), Holden really just played with the toys, it was nice. He was at least around other people. And, the other kids there were either too young to play with, or weren't interested either. So, they're having another one tomorrow and I'm hopeful that he'll "play". I also met another mom with a 2.5 year old diagnosed with PDD. She's asked us to come over next week for a playdate. Curious to see how the kids react without so many people and toys around.


I took him to the mall playground today. It was great, actually. He did awesome. He was running around, just like the other kids his age - bumping into other kids. Laughing, running, playing. He seemed to really have fun. He was smiling. He even went up to a few kids, but, honestly, I think it was just because he wanted to steal their binkies. Oh well, I'm going to count it as being somewhat social! He didn't avoid them, afterall.


Zoe's almost out of school. She gets out at 1pm on Friday, Monday and next Tuesday. Then she's done for THREE whole months. School starts late next year. August 21st. I can't believe she'll be in the 3rd grade. Wow, how time flies. She's such a good kid though. We are so lucky. She's beautiful, smart, nice, polite, and respectful. I can't tell you the number of times that adults (kid's parents, or just people we pass in the supermarket) have told me how "polite" she is. It's so good to hear coming from her peer's parents. I've mentioned to Dietrich that I actually would prefer her be more polite and respectful to other people and their homes, than to us! I tell her every day how much I love her because I just don't want a day to go by without her knowing how much she's loved.

Lucky, is what we are.


And, here's a picture of the little guy in-utero. Today, I'm 26w1d.

5.08.2007

Early Intervention & MORE progress

Everyone tells you "you're doing the right thing by getting your son help while he's young" and "early intervention really works!".

Well, if I could get a therapist to call me back, then I might agree with them. It's been almost 3 weeks since Holden's evaluation and services were approved. 3 different therapies: at-home speech (2x per week), at-home behavior (3 hours per week), and behavior/daycare environment (3 hours per day). Funny thing is, the 3 hours per week of home behavior therapy goes away once he gets into the preschool/daycare environment. But that's beside the point. Anyway. I've called both consulting companies for the speech and at-home behavior therapy. I'm now being told that he's been "assigned" to a therapist, so the therapist will call me back to schedule an initial appointment and his weekly therapies. No call. No one has called. I've called every 2 days, asking for updates. Yesterday, I was told that the speech therapist that he's been assigned to just happens to be out of town this week and "will be back sometime next week". Meaning that she'll have to play catch up and probably won't be able to call me until the week after, and then not schedule an initial appointment with us until the following week. So, yeah. Probably at least another 3 weeks until we can get in for speech. The at-home behavior people tell me he's been assigned ... just have to wait for the therapist to call. I called for an update yesterday and left a message. No call back yet. The daycare/preschool ABA thing - they don't have an opening right now and it may be as late as June/July before then do. Which really means August/September in english. I am frustrated people. Everyone tells me what a great job I'm doing getting him into Early Intervention so "early". Well, if I'd waited another 2 months, he would be turning THREE before they made any appointments, and he wouldn't qualify any longer. Every DAY that goes by, I get a little more pissed that no one's taking me seriously.

Progress. This is what keeps me going and helps me have a positive outlook . Holden's saying "mama" now. I mean, he said it before - but stopped when he lost all language. BUT, he said it again. And he keeps saying it, although I'm not sure he is using it in the corrrect text. He did look at me once and said "mama", so I know he used it correctly at least 1 time. He's also starting to imitate me. I stick out my tongue, he sticks out his (I think just to lick me really, but still, I'll take it!). About 20 minutes ago, I took his binky and held it out of reach and tried to make him say it - or at least make the "ba-ba-ba-ba" sound for it. He looked at me when I said "ba-ba-ba-ba" and he repeated the sound. He's NEVER done that. I take that to mean that he's more aware and if I can get him to imitate sounds - maybe speech and language will follow. That's my goal anyway.

We went to visit my mom over the weekend. Zoe and Dietrich were out of state, so it was just me and Holden. We went to my aunt's house. Holden was playing on the floor and she said "he just looks like a normal little boy to me". It felt good. Because, I've always said that if you didn't know the signs, you would look at him and just think he's like any other 2 year old. He was very "social" with them, too. And he's not around them much, so it's not because he's used to them. He took my aunt's hand and brought her into their kitchen to ask for a drink. I was shocked that he took someone else's hand but mine.

After we got home from our little trip away, we stopped at the grocery store. We were standing at the deli counter and a dad came by with his little boy in a shopping cart. Holden looked at the little boy, stared at him practically, and watched him go by. He normally doesn't notice other people, and especially kids. When he did that, my heart smiled.

Today, while watching the Wiggles on TV, they were running in place, singing a song - and I looked and Holden was watching and running around like they were. He was imitating them. He's never done that before.

So, although I'm dealing with a crap system that takes 2 months to get services for my son who needs them - I still see the progress he's making and it makes me happy. I'm playing the role of "mama" and therapist right now, and of course I don't mind. I'll do anything to help him. But, sometimes I'm scared I'm not doing things right. I just need some guidance, and it seems almost impossible to get.