May, May the end of May

This month has been filled with many ups and downs as all my months are.  We started out the month strong with less seizures, more speech, less meltdowns, we ended it with still a lot of up but it seems as if we are back on the seizure yo-yo.  We are not really doing any supplements we are doing:
keifer
aloe vera juice

That's it, we have really toned down STILL waiting on this pediatrician to order this darn blood work. But she keeps putting it off saying she needs to read the book more (for those not knowing what I'm talking about check out the blog posting Updates) information on what tests Dr. Goldberg is talking about to make sure that the tests she runs don't overlap what he does.  For those that know me know that I am a VERY detailed mom, I didn't just give her the book I gave her:

• The book 
• DVD's of video of Dr. Goldberg that I downloaded off the internet
• The questionnaire from page 98-101 for each child
• The lab workup list from page 102
• medical records

So you see people I just didn't hand her a book and tell her what to do.  Now in saying that I do totally understand her wanting to do everything right and us not having to re do any tests or taking tests that are unnecessary. But, my patience is running thin because now I hopefully have a protocol that could be life changing for us all but we can't start it because the doctor is not doing her part (in my eyes) It's been a month since I introduced this information to her and still we wait.  I don't know if she understands what is riding on this, maybe she does and I'm just.....for lack of a better word impatient. I just want my kids to be better.

So now we are back to multiple seizures but we have still have the increased speech and a little more focus, depending. Jai Lynn has been doing very well, I want to work on her socialization and math skills this summer. Found out at her last IEP that her reading skills are at grade level so we will also be reinforcing her reading this summer with the added comprehension piece.  We will be working on her writing skills and science and social studies.

So, that is where we are. Hoping to give progress updates over the course of the summer, school here in MI will be out in 12 days and I am so ready for it to be over as getting up and packing lunches is really getting on my nerves.

Until next time,
Blessings and Recovery
The Fuller's

May 14, 2010

Today started off pretty well, all kids where in a great mood.  I am going to be adding Mason to this blog as many of the symptoms that he is being to present (ear infection, thrush, etc) are a cause for "some" concern so he will be following the same protocol.

Today Marcus, Jr. was top notch! Had a great day in school, was able to moderate his moods and had great listening today.

Today we just continued to modify their diets as well as no supplements.

Today Marcus, Jr's tutor said that he had a great day, very verbal (he has been lately) very focused and very aware.

So not much to report today just a great day focus wise.

Blessings and Recovery,
The Fuller's

First Doctor's Visit

So, this past Monday, we met with our pediatrician to get the process started for Marcus, Jr for Dr. Goldberg's protocol.  There are a few more pieces that need to be put into place and then she will order blood work for him.

In the meantime we have started with step one of the protocol which includes eliminating allergins from the kids diets.  This includes ALL supplements.  We have been doing the diet elimination for the past month, we have eliminated supplements for the past two weeks, and the changes that we have seen have been pretty good.

Marcus, Jr's seizures are now almost non-exisisent only happening about once every other week, no more four-five seizures in a day.  Jai Lynn's cognitive abilities have increased, she seems more focused and clear.

We have also gotten more verbalization out of Marcus, Jr.  Just this weekend when I asked Jai Lynn did she want water he said "me too." He just seems to be more aware of what is going on.

So we are working on the first step of Dr. Goldberg's protocol which is changing our diet and that is working quite well so we can't wait to add the other pieces so that our children can experience a true healing from this virus.

So, I will try to post everyday as this is not only to be a help to other parents but also a log and diary for us to see where our kids have been and where they are going.

So the tidbit that I want everyone to take today is this:
"Step one is always dietary elimination (including most nonpharmaceutical supplements). The key to helping the immune system is not how many different products and things can one throw into it, but rather how many negative stimuli (primarily foods or other non-pharmaceutically pure ingested products) you can remove form the immune system, in turn allowing the immune system the first chance to start to become healthier" - "The Myth of Autism, Dr. Michael Goldberg and Elyse Goldberg, Chapter 7 page 91.

So parents this means stop giving your kids multiple vitamin therapies at once, start with one and build. Doing multiple vitamin and alternative therapies at once will not necessarily help your child. From personal experience we know this.

True story, when our son was having multiple seizures a day we where doing multiple vitamin supplements (not sure if they where pharmaceutical grade or not I'm guessing not). We where doing:
acetly l carnitine
neuro protek
Divine Child drink
NADH
Vitamin D3
and a few others those are just the ones that I can think of off the top of my head. We didn't change what he ate, let him eat whatever.  During this time Marcus, Jr had extremely bad gas, so along with his Neurofeedback therapist we discussed  modifying his diet and taking out all gluten. As soon as we removed his main trigger (it seems to be regular spaghetti stick he likes to eat them uncooked) the seizures decreased dramatically. Once we removed the supplements they decreased even more and we got more language and clarity from Marcus, Jr. Yes he still has rough days, yes he still has problems using the language in his head, yes we still have a long way to go but that small step has allowed us to make progress.

So this is our beginning. I hope to have video up this week of the kids and their interactions, tomorrow I have to take some documents to their pediatrician and talk to her about ordering the neuroSPECT scans for each child.

This is step one in our journey, please stay with us.

Blessings and Recovery,

The Fullers