Thursday, February 28, 2008

Upset about a possible over-sight in treatment

Dave is seeing his Nephrologist at UCI today, to go over some recent blood tests. There is one thing on my mind that I am hoping to get answered. Why didn’t they perform plasmapheresis on Dave at the initial on set of renal failure? I have been reading that this procedure, while uncommon in the US, is widely used in both Europe and Japan in treating certain types of auto-immune conditions. It works by cleansing the blood of the antibodies that causes tissue necrosis (tissue / organ death).

At the time of Dave’s initial kidney biopsy, his renal function was about 30-40%. While that is not considered stellar by any means, it may have improved if the antibodies had been removed from the bloodstream early on. Could he have regained adequate kidney function? Could dialysis and even the need for transplant have been avoided? I guess we will never know for sure. I doubt the doctors are ever going to admit over-looking any treatment that might have prolonged Dave’s life or the life of his own organs.

I encourage anyone who has a medical condition to become their own expert, quickly. You are your best advocate. I have only a little knowledge, and have been able to at least ask some relevant questions throughout this process. If we had just let the doctors do whatever they initially wanted, we would not have been able to stop the Cytoxan prior to the Rituxan infusions, causing a high probability of a neurological development. Don’t be too trusting when it comes to your own health. Get involved!

Friday, February 22, 2008

Update on Dave

I got a call from UCLA yesterday about my eligibility to be Dave's donor. When I was pregnant with Joey, I had some problems with kidney stones. I never had them prior to that and I haven't had any since giving birth over 5 yrs ago. So chances are good that my little stone problem was caused by hormones. But...I still have to go through some testing to make sure I am not producing stones now, or look like I have potential to do so later on. That's where we'll begin in about two months. Dave still needs to accomplish some preliminary stuff on his end before any donor can begin testing.

We did get some GREAT news! One of Dave's cousins has come forward, requesting information about being his donor. God is so awesome!!

Dave has been OK. Even though he got a flu shot, he ended up getting some flu-like virus this past week. But thankfully it has stayed in his upper respiratory tract, and has not gone into his lungs. We are still closely watching it.

That's about it for now.

Tuesday, February 19, 2008

When the Flu attacks....

For the last 15 years I have managed to not catch the flu. The last time I had this super-bug I was traveling home from NYC, and was so sick, all I did was sleep and ....sleep some more. If I had gotten on the wrong plane, it wouldn't have mattered. All I wanted was a soft spot to die...or rest, whatever.

So fast forward to now. This has been my family's sickest year on record. And I'm referring to 2008. I have a little guy in Pre-K who is currently building his immunity by catching every virus that crosses his path. Then, being generous, he shares it with his older brother. Dave and I have remained ok, until now. But It finally caught up with us...the crud...the headache, fever, chills, and malaise. Man!! I can not be sick!! Too much to do.

But here I am sitting in bed, with my 5 year old who shared his virus with me over the weekend. While Dave and Davey have just left for the doctor's . Yes, we are all UNCLEAN!!

This is a lame post, but it's my way of venting. I hate not feeling well. I am usually immune to getting sick, really. But this cold / flu season is the worst I can remember.

Ok, I'm going to watch another episode of SpongeBob and then maybe we can take a nap???? Please!!!

Anyone know how many days until Summer???

Monday, February 11, 2008

Medal of Honor Winner's Gala

Dave and I were guests at the Congressional Medal of Honor Winner's Gala this past Saturday, at the Ronald Reagan Presidential Library. It was a great evening, and we were in the presence of true heroes from every branch of the military. Not being in his dress blues, Dave felt a little strange, but I was so proud of him, and the service he also gave our counrty!!

We started out by touring Air Force One, which was truly awesome. Before being retired, it had served 7 Presidents, ending with George W. Most of it's air miles were under President Reagan, so that's why it resides at his library. We were able to see the President's quarters and walk through the whole plane before the evening's festivities began. You can imagine how many canisters of Jelly Bellies were in that cabin!

There were a ton of government dignitaries and military personnel present. Several actors were also there, to include Gary Sinese, Tom Selleck , Kevin Sorbo and Miguel Ferrer. We had the chance to spend a couple minutes talking with Gary Sinese, who has gone over to Iraq and Afghanistan several times to entertain and suport the troops. What a very nice, and humble man!

It was an honor for us to be included in this wonderful celebration!

Tuesday, February 5, 2008

We need a National Healthcare Package for ALL

Christianity Today has a great article on the need for a revised national healthcare package. While the War on Terror and the economy are incredibly impotant issues, the issue of healthcare for all (especially all children) is one which more time and effort need to be given. It is one issue that I need to see addressed by the candidate I support. Anyway, I will just post the link to the article, since they are much better at articulating this need than I am.

Saturday, February 2, 2008

Autism Spectrum Disorder and the allergic child

As many of you know, my son Joe was diagnosed last year as being on the autism spectrum. Joe is considerd very high functioning, and our main focus in therapy continues to be bringing out the language which he already has, but sometimes chooses not to use. We also have issues with behavior, like eloping and being a bit less focused in a classroom enviornment than other kids his age. But as far as intelligence goes, we are blessed that he is able to keep up with ( and in some areas even surpass) his peers.

I have been researching the co-exsistance of enviornmental and food allergies in children who are on the spectrum. It's very interesting, and to me, holds a bit more weight scientifically than the whole immunization hoopla. Granted, I also believe that in the past thermisol did pose a hazadardous toxicity and possible negative neurological effect on kids who where exposed in larger quantities. But the drug companies have been removing thermisol from antigens for several years, now. The autism "epidemic" continues to grow. The other possibility that might still involve immunizations as a possible cause for spectrum disorders also involves allergy and the introduction to the immune system of a substance that for most would not cause any reaction. But for some might cause a neurological type of reaction.

Allergy in autistc kids seems to be quite common. Many have food allergies to wheat, dairy and nuts. Joe is allergic to peanuts, and so we also keep a nut-free house ( food-wise, not individuals living here) :) Then there is the ever increasing in popularity gluten free diet that many pediatricians advocate in helping treat behaviors in ASD (Austistic Spectrum Disorders). Does it help? I dont know. While I would love to try a gluten free diet on Joey....I am a wimp! When I was working as a pediatric nurse (long before I had kids of my own), I would be the first to instruct the parents to be parents....but here I am, unable to take food he loves away from him. The truth is that he is a picky eater, and while that isn't uncommon in little ones, kids with ASD sometimes have sensitivities to food texture, taste, and smell. It's not always a put-on. They are just reacting to something in the food they don't like. So there are times I feel fortunate that he eats the few things he does!

The interesting thing I have been reading, is that the CNS and immune system form about the same time in-utero. Both function similarly, recognition then reaction. Whether it's a specific memory that you have from your 5th birthday party, or the taste of a food that gives you is all conneted. Somehow, it makes me wonder if symptoms of ASD are heightened when the child is in an allergic state. Say for instance, a simple cold or nasal these conditions make behaviors worse? If we treat allergies with something, like Zyrtec or Claritin on a daily basis, would the behaviors improve? The same can be asked about a child with ADD or ADHD. Both of those neurological conditions may also improve when allergies are kept at bay.

Interesting idea, isn't it?