The last post. The end of the journey.

Dear Ty, This will be my last post on this blog. I will be taking this off the web and turning it into a book for you to see one day. You are an excellent reader and I want you to know this information, about your journey, in your own time.

I want you to know that I am not embarrassed or ashamed of the road we have traveled together. I am proud and inspired by your complete determination and will. I honestly believe that the world and future is yours. Nothing will stop you or get in your way from becoming and doing anything that you want in life. I hope that you will always be proud of what you have overcome. While I would never knowingly choose what happened to us, I feel that it has brought out many good things. We eat better and take care of ourselves on a completely different level. I believe my experiences with you saved your brother from the same outcome. You have been a source of inspiration to so many mothers and fathers who pray for the same outcome for their children. I'm not sure why we got so lucky and so blessed and why we beat autism. I always knew we would. People thought I was in denial, but I just always knew. This photo was just taken of you during your first grade award ceremony. You were chosen as having the friendliest personality. That's you- a caring, and loving person who is friendly to all. Thank you for being such an amazing person. I will always love you, until the end of time. Mom

Division of "autism" moms

You know, when you find out your kid has an "issue", any issue for that matter, different personality styles will handle the "issue" differently. What continues to surprise me all these years later is how the different styles of dealing with autism, ADHD, anxiety, allergies (fill in the problem here)can be so against one another. My way of handling the problems (and yes, I view allergies, asthma, autism, anxiety, and speech delays as a problem)is to find the root and try my best to fix it naturally (this is because I think the environment played a part in the problem). What I have noticed in my journey is that my type is in the minority. At first I was more judgmental about why other parents would not choose to heal their children through means beyond the mainstream course of action since the mainstream course of action produces such minimal results. In the years since I started this process; however, I have become much more understanding that some mothers deal with things differently and that is not for me to judge (though I will admit I am a work in progress). What I have learned is that virtually every mom does what she deems best for her family, so far be it for me to decide what someone else thinks is best for them. There is another school of thought that consists of "these are the cards I have been dealt" (I actually admire that school of thought, a bit) and that's how God made my kids(that's the part I take issue with) and so there is really no need for me to attempt all these "unproven" methods of healing. I know several mothers (or know of) this parenting style and these moms and families are actually quite happy. They say, my kid has autism (or speech delay or anxiety or ADHD or whatever) and I will take what the state (or school system or pediatrician) gives me and move forward with my life.

The most disturbing part of the division of belief systems is the animosity for the other side. I have had a few parents reach out to me when they realized their kids were struggling and I have given them advice on what we did to improve our situation (I now rarely ever dole out advice, fyi). What has happened on numerous occasions is that those parents end up not "buying" into my school of thought (I mean, why would they...not one mainstream doctor or therapist probably supports it) and they actually will stop speaking to me or contacting me. As a human being, it does hurt my feelings....you would think after the friends I initially lost once we went biomedical it would be okay, but even four years later, it does sting a bit. I would think a recovered child would give me enough credibility, but I suppose, it does not. I have plenty of biomed friends that think along the exact same lines as I do, but I do wish there wasn't such a huge division of autism moms. I think we can all agree that there are too many sick kids today and we simply cannot accept this is what the Universe intended!

First IVIG down!!

Well, my little one had his first IVIG infusion exactly six days ago. I have to say, it went quite well. He is using Gammagard with low IGA, since he is so low in IGG and IGA. The doctor said regular IVIG could kill him. Needless to say, I was quite nervous and saw the box prior to administration to ease my mind. He wore a backpack with the IV bag and the infusion lasted about five hours The side effects were minimal. Day two he had a headache and some loose stools, but that was about it. He did have severe light sensitivity that is still giving him a problem, so I will have to check with the doctor on that. I have noticed his play skills have increased and he is slightly more verbal. He has been more eye stimmy, but I think that is due to the light sensitivity. His real issues are the eye stimms and the poor language skills (I know that is a lot), but other than that, he has no "issues" that stand out. He is not echolalic or scripty, he has great eye contact and plays with others. I don't think we have a lot to "fix" but he is still young, so I'm not sure yet. At this point, the main thing I'm worried about is his immune deficiency and his language skills. He will be four at the end of July. I am praying for a language boost between now and his first day of VPK (voluntary pre-k). I'm also praying he is well enough to stay in school since he was sick for months at a time last year.

IVIG

My three year old has been very shaky over the past year when it comes to his health. It turns out he has a pretty substantial immune deficiency. Once again, we are faced with healing a child with very little support from the insurance company we pay high premiums to. We decided to see Dr. Rossignol in Melbourne as a second set of eyes for our little one. Switching doctors was a little stressful for me since we have had great success from our previous doctor with our older son. My meeting with the new doctor went quite well. His personality couldn't be more different from our Miami doctor, but I don't need the hand holding and the universal blessings this go round. I simply need an office that is closer, easier maneuver (not in downtown Miami Beach!), and really knows what they are doing (and can explain it to me in normal language) when it comes to IVIG.

I still have my moments when I feel sorry for myself. It still seems unreal that I have two children with such major health issues that are not covered my insurance. The amount of money we have spent so far could have sent both of them to an Ivy League college.

I called our Miami DAN doctor for input regarding giving him the Pneumovax vaccine (the little one's allergist is pushing it hard). The conversation lasted 30 minutes. The results were do not give the vaccine and do IVIG. The bill was $200.00. The next week we went to the new DAN doctor in Melbourne. We spent an hour discussing IVIG options and then the little one was chelated. The total bill for that day was $800 and something. I honestly don't think the average family could quite fathom that we paid out $1,000 in less than a two week period to see if we can heal one child. I have stopped thinking about it so much. I do find the whole thing unfair, but I know that one cannot put a price tag on a child's health. The great new is that the chelation was a success and little B's language took a huge boost afterward.

We are now waiting to see if Aetna will cover the drug portion of IVIG. If they do, it will only cost us $900.00 per infusion. If Aetna does not cover it, our cost could be as much as $4,000 per infusion. We have not made any decision yet what we will do if Aetna doesn't cover it. I think it's a mandatory item, at this point.

Witch hunt and the media

Witch-hunt: An investigation carried out ostensibly to uncover subversive activities bu actually used to harass and undermine those with differing views.

Well, if you follow any mainstream news channel you have seen what's been going on over the past 48 hours. The media, once again is not focused on vaccine safety, but continues to report the findings of one lone journalist's mission (Brian Deer) to discredit Dr. Andrew Wakefield's study that said the MMR "may" cause bowel disease. Somehow that turned into he said the MMR causes autism...blah, blah...it's the worst game of telephone, ever. The sad part is that the mainstream media and the public buys into this entire thing hook, line, and sinker. Needless to say, the disgusting manner in which the reporters are interviewing anyone concerned with vaccine safety is atrocious. It's embarrassing that the US media has turned into such a biased disgrace. As JB Handley said "They're not just beating a dead horse, they're beating a horse that never existed at all." Regardless, the media has assured the public that Andrew Wakefield is a big fraud and now we can put the autism/vaccine connection to rest.

Really? Now we can put it to rest? I always wonder when common sense will prevail. We have over 36 shots on the schedule and more coming our way. What will it look like in ten years? Autism is on the rise!! What are we doing about it?? Nothing. Plain and simple. I have friends who are pregnant now. There are no precautions except don't eat lots of tuna that any OBGYN is giving. How can that be? "There is an environmental role" the media says, but it's not vaccines. I've never thought vaccines are the sole cause of the autism increase, but really?? How dumb are we? It's been a rough two days for me. Lots of tears and anger because I have to relive the bullshit. This does not make me or anyone like me go away. this makes my resolve stronger! It's as simple as this...children in The United States are over vaccinated. There are too many shots given, too many at one visit, and too soon after the previous round. Enough is enough!!!

I LOVE chelation!!

Chelation worked very well for my older son. As I have written in earlier pieces, he went from having horrific echolalia and scripting before chelation to non existent echolali after. I knew chelation was his main healer which is why I couldn't wait to try it on my younger son. The first time my younger son went in for his IV chelation he definitely had gains from it. More than I was thinking he would, actually. His language improved some (when you have minimal language "some" improvement is great but you still have a child who can barely speak)and his eye contact and "withitness" improved. I knew that he was a chelation responder after the first round. What I hadn't predicted was how he would react to his second round of chelation. My mother in law had flown in the night before and generally had a good idea about his minimal language capabilities. We drove to Miami (two hours down) and had both boys chelated though IV. We had lunch in the park and then my little one fell asleep in the car for the entire two hour ride back and even slept an additional hour in his bed. When he woke up from his three hour nap, his language was INSANE!! He was speaking in complete sentences and had started to become conversational for the first time, ever!! My mother in law asked me if she was imagining things or if this was chelation at work. I told her, Oh, this is chelation, baby!! My husband, my mother in law, and I were ecstatic! He gained more language in the three hours post chelation than he did his first three years of life. That was November 11th and our next chelation isn't set until Jan. 17th, which is way too long in between. I will be picking up the pace for these chelations, that's for sure. Now that I am working, it is not easy to take off. Now we are chelating two at a time instead of one at a time, which also means $400 per chelation instead of $200. I cannot wait until the next one!!!

Reading and Spelling

Ty's teacher sent me this email just before winter break. To say I was THRILLED would be putting it mildly. I take no achievement for granted. I just love that she is as excited for his progress as I am.

"Just a quick email with some good news: Ty is in my highest reading group AND he scored the third highest score in my class on a spelling placement test for Words Their Way! He’s making so much progress!

Go, Ty go!"