13 November 2006

Really... that long??

I can't believe I haven't updated Gavin's blog since January. We have been so busy and I have had a million jobs that I hated --its been nuts.

Gavin had his first seizure and has been diagnosed with Epilepsy --busy busy busy.

I will give this a full update soon!

16 January 2006


Something I have been meaning to do since this whole thing started was to keep a running total of what we are spending on supplements, doctors visits and the like.
I finally sat down to do that last night.

Since June.
On doctors appts, the gasoline to travel to a doctor willing to treat my son, since no local doctor will. Since the local doctors throw their arms up and say, "He's autistic, there is nothing you can do for that".
Some of those appts were phone consults. The money went to Cod Liver Oil, Noni Juice, Vit C, Zinc, Evening Primrose Oil, Super Nu-Thera (mulitvitamin), MB12 powder, Glutathione cream, td-DMSA, some GF/CF foods, etc etc etc.

monthly Cost:
Now, we are about to adjust his supplement schedule, add some things --some products combine a few of the above. So I punched in the numbers and based on daily doses, specific products, doctors appts and a 365 day year...

$600 is what is will be costing every month for Gavin's care --for this biomedical treatment, none of which is easily covered by insurance. Gavin gets state insurance b/c of his dx, this covers his educational therapies (47.5 hours of wraparound a week, a BSC, psych consults, etc --which is roughly $80,000 a year or more at this point) but it doesn't cover most of the rx'd meds like DMSA, MB12 shots and the Dr. N's vitamin supplement etc... that MOST private insurances actually do cover -and I am currently NOT offered such insurance at work.
I am going to be submitting so charges to MA and see if I get reimbursed, so fingers crossed. His $120 DMSA/mo and $45.50 MB12 shots/mo and $53 vitamin/mo are what I will be submitting.

Until then, --and since they will probably deny those, We pay $600/mo.

BY THE WAY, this does NOT include the couple hundred a month I will be spending on GF/CF foods for Gavin that I will have to special order on line since no local store carries these products. As time goes on and Gavin gets better, hopefully he will eat more meats and veggies and I can back off of the pricey premade products.

Is it worth it?

And I have thoughts about parents not willing to do this.
Some say they cannot afford it. Actually when I added up all our expenses last night I figured that I actually have a monthly deficit of about $150. (And that number did NOT INCLUDE: gasoline, clothing, diapers, food, gas, and other daily living expenses)
So when my old boss called and wanting to know if I wanted to go back to work next month I said YES! lol. Its not much money, and with that job I will cover that deficit and have enough to keep Liam in diapers, and not much more.
You find ways to make it work.
I moved in with my parents to make it work. I pay rent, but do not have to worry about it being due a certain day, or paying ultilities. Gavin is dying for his own place again. He asks me everyday to move in a house! lol He wanted to live at the Hotel we visited last weekend while in NJ to see Dr. Neubrander.
Point is it can be done, and if I didn't have my parents house I would STILL make it happen.

We owe these kids THAT much.
At least.

Since starting this he has language has grown! He is still not conversational per se, BUT I think he is heading the direction --and we have only just started chelation and haven't even tried the MB12 shots yet.

EVERY Parent Should Do THIS.
If chelation bothers you, there are other things you can do --diet, supplementation, ABA, etc.
I sat on the fence too long. too long.

22 December 2005


We did start chelating Gavin with Td-DMSA two weeks ago. I noticed a bit of a backslide, which can happen at first. Very stimmy, and fired up. I *THINK* there may be a yeast regrowth problem. We are about to start another 3 day "on" cycle, at the end I am going to call his doc to get him some more difulcan and then up his probiotics a bit.

And I know its time to do the GFCF diet. Just dreading it. Another expense I cannot afford, but MUST afford. Well... I know there are cheaper ways to do it, but Gavin is such a picky eater I know in the beginning I will have tobuy the more expensive speciality foods. I also plan on getting him food allergy tested. He lives on wheat, soy, corn. Why do I feel like the results will show that is exactly what he is allergic too??

He starts MB12 shots next month when I travel to NJ to see Dr. Neubrander

OK, I need more coffee and I PROMISE I will update more today about what supplements Gavin is on now and how symptoms improved with each.

27 August 2005

updates are coming

I need to post an update, Gavin is doing well.

I also want to address the recent death of a boy in Pittsburgh while at the doctors office for chelation.
There have been some very good posts about this lately, putting it into context. I am waiting on permission from the authors to post it here.

P.S. Gavin will be going forward with the DAN chelation protocol.

More to follow

28 July 2005

Aaannnnnddddddddd they're OFF!!

So where have I been. TOO BUSY.
And to make myself more busy I am driving some doggies as far as Oklahoma starting tomrrow.

Read all about it: http://releases.usnewswire.com/GetRelease.asp?id=50892. Tomorrow there will be a story in the Pittsburgh Post Gazette. There will also be a clip on Pittsburgh news station WTAE.

And you know how I hate the thought of publicity, but's it ok. It got us needed donations!

Check this blog and the mobile blog often!!!! Here is the mobile blog. I will post pictures and updates along the route. Also I will upload pics to my website, at http://dogrelay.jennywebster.com

22 July 2005


It took me months to pronounce it right.
First Milk Thistle, then Glutathione. These two things will hopefully get Gavin's body ready for chelation when the time comes.
For more information on what Glutathione is and does, visit the DAN! webcast page, and the ARI site I have linked to on the right hand side of this page. I could explain it, but not do it justice. Basically, autistic kids LACK this for the most part, and its important b/c it helps the body naturally detox from things like...oh... say, MERCURY???? hmmmm.

So, with the brand of Milk Thistle I am getting and the Glutathione lotion, Gavin is at approx $55/mo in supplements. That number will only grow. I am not including his noni juice in that amount, b/c that is something we are all drinking and would all drink --autism or not.

The next step?
I think I will contact his doctor next week and talk "YEAST" I would like to treat Gavin for the yeast overgrowth, give him some probiotics NOW, so that when our next appt rolls around (Aug 23rd), maybe we can do a round of chelation then, eh?? Right before school starts!!

We need to tackle the GFCF diet too... Test for allergies, etc. His diet is something I am afraid to tackle. Even his DAN! doc granted me a bit of a break on that one. Gavin ONLY eats Peanut butter, and Soy milk. He joked my luck we will find out Gavin is allergic to both!! So there is a little bit of denial that I am saving for some other day.

very tired... bed time now. night!

11 July 2005

Stuff and Things

I get a little off the topic of all things Gavin in this post, but do get back to his recovery adventures eventually...

Well, I got the shipment of all the Xylitol stuff I ordered! I love it!! again, look below for that post. The sweetner is great, I got a toothpaste and tooth gel for the kids, Gavin loves the gum (this is the only gum that PREVENTS tooth decay instead of causing it). Those of you not trying this yet are just silly! Its the perfect food supplement. Its been studied and proven to reduce ear infections, sinus infections, and upper respiratory infections AND kill bacteria in the mouth that cause tooth decay. Its recommended by dental associations all over the globe. Its almost half the calories of sugar and does not raise blood glucose levels, so diabetics can use it too. Its all natural and comes from plums and rasberries... http://www.xylitolstore.com I will preach about this stuff until everyone knows about it. Our dentists in the USA don't tell us about it... why? Are they afraid of losing some business?? (No, I do not sell this stuff,a nd I get no money for pimping it like I am!!)

Noni juice. I am NOT KIDDING. The second I started drinking it my ankle began to heal. Not only is it full of antioxidants which will help tissue at the cellular level. It ALSO is a natural Anti-Inflammatory. They day I started drinking the juice I stopped taking the mega doses of motrin I needed(which is damaging to the kidneys and liver), the swelling went down and I was able to walk on it without pain. I am not allowed toclaimthe NONI HEALS anything... thus the life of a "food supplement" whenyou make claims that something heals it has to be reclassified as a drug, under go all that "drug" stuff --in the end it becomes so expensive that only drug companies can afford to produce it.. and then you know what happens...

Visit my website for more info http://tni.com/jennywebster --and yes I DO get paid for pimping this stuff. But that is what money back guarantees are all about, try it and decide for yourself.

Gavin has another appt with his Deafeat Autism Now! doctor tomorrow, who by now has had a chance to review Gavin's records...
AND all hell is breaking loose in the house right now so I will post about this later.