Wednesday, January 27, 2010

Join us on our journey

Well, good news to report. I finally got everything straightened out with the medical card situation and now should be back on track for Packy's next IVIG appointment in a few weeks. We have even found a way to get the medical card to pay for the actual IVIG (not the treatment but the medication). At the tune of around $2,000 per month that is excellent!

I finally have decided to move forward on pursuing the stem cell treatment as well. We are hopeful that this will be done within the next 2-3 months. I started looking into stem cells about 2-3 years ago. I found an obscure paper (yes, on the internet for any of you skeptics out there.) Skeptics? Probably not. Let's face it most people reading this have a child that has been affected by autism....the only skeptics would be anyone benefiting from big pharma like a shareholder or vaccine patent holder or maybe a mainstream medical doctor. I digress, my apologies. :)

After finally tracking down the author of that paper, a doctor from California, who was a friend of the late Dr Rimland. We had a wonderful conversation one day about his hypothetical idea. At the time of the conversation three years ago it was more of a hypothetical but now it is a reality because stem cell treatments are being done in US affiliated facilities. Currently two that are very reputable are located in Panama and Germany. Fast forward three years, and children that go to the same doctor that my son sees are now receiving treatment in both countries.

We were initially looking into Costa Rica a few years ago but the US government leaned on Costa Rica and got them to pull the license on the clinic. That clinic moved to Panama. It actually seems to be the more advanced of the two clinics. The German clinic uses adult stem cells while the Panama clinic is now using cord blood stem cells from donors.

I am more interested in this method. The whole idea that got me thinking about stem cells actually came from the birth of my youngest son Joseph in 2005. I decided to bank his cord blood because it could be used for any of my children if they ever needed it due to health issues. At that time autism was not being treated with stem cells (that I know of) but it started to make a lot of sense.

If you follow my thinking then common sense tells you that Patrick was born without autism but for lack of a better term "came down with it" after his early vaccinations. He was hospitalized at ten days old after becoming ill with an "unspecified" viral infection. He had similar reactions after each set of vaccinations with the most common being extreme lethargy. He was in the ER at three months of age with rsv and then his good doctor at the time did us such a great favor by "catching up" vaccinations less than two weeks later.

Hopefully the stem cells will help to restore some of the immunities and systemic functioning that he was born with before his system was injured by the vaccines. I have read some really good first hand reports from other parents and also from adults who are being treated for a whole host of diseases.

I will definitely keep everyone posted as we make the decision and move forward. Please keep Patrick in your prayers.

Thursday, January 7, 2010

Where do they find these people?

Hello friends!
I have been quiet since early December. We had a busy month and then lo and behold on Dec 22 the whole household starting coming down with the flu (yes and it was the "vomiting kind.") I will be kind and spare everyone the projectile visuals.

This sickness gave my whole family a detour because a few of the kids had it for 2-3 days and then Mom and Dad also got it. Mine was short and awful; but by Day 2 I was weak but could make it around with rest breaks. My husband didn't have it near as violently but his stretched out for a longer duration....or maybe he is just smarter than me and knows you can fake it for two or three days to get a good rest. HA HA.

I have a story for all my autism family near and far that I have been at first too sick, and then too far behind in kids, work, household, etc to even take a time out on.

However, this story (like many of you have experienced before), this one is a real "doozy" as my late grandmother would have called it.

I try to see the positive and I try to not complain much. I think I do a "fair to good" job at this. My son has a medical card (medicaid) from our state. I have been grateful for the waiver that allowed him to obtain this card when he was about four years old. I recently switched my insurance to Humana (complete side note here) and I asked what type of benefits they included for autism. Their answer is they DO NOT cover autism. Oh well. So yes, I have been grateful to have the card.

Now, to really look at the card realistically, it does not cover a majority of what we do biomedically. I pay for all lab tests out of pocket other than just a standard blood test that is covered. It also would pay for vaccinations (which we do not do) and well child exams or physicals in the state of Kentucky. However, we don't do this either because both of our main doctors for Patrick are in Tennessee and Florida.

It does cover some therapies such as speech and OT. That is helpful, don't get me wrong. I have to cover his behavioral therapy out of my own pocket. Please understand I am not criticizing what we do receive, but merely just setting the scene here.

Well, come to find out, our state, like many other states, is WAY behind budget. That means everyone up in Frankfort needs to find places to start whacking on that budget. One thing that surprises me is that our government would start by scrutinizing the kids with disabilities who receive a medical card. But a few people I know who work in government have told me that the disability/medicaid cases are being reviewed rather stringently.

This is where the story gets good.

A lady from the medical review team at the state capitol called me to update his doctor problem there. She updated a few other facts. She then asked where he attended school. I told her that he is homeschooled and that primarily he is a taught by a behavior therapist that works with him every morning. I told her that he is in first grade, which is the grade level he should be in. She asked if I had gotten him any state testing lately such as an IQ test. I replied no. She said she would really like to get some testing done but the medical review team would have to look at it.

Now, he does have the tests in his file from First Steps (his last testing was when he aged out at 3). Since then he has several tests done yearly at minimum by speech therapists, OT's and a PT assessment that we were lucky he did not qualify for. These items are all done through the therapists that contract through the state. Our caseworker, who contracts through the state, visits us each month and had just performed her yearly assessment of his skills.

Now, I know that there is a good amount of fraud that goes on with medicaid and medicare. Believe me, I understand that and additionally, I am very much against overspending by the government.

But.... he is clearly a child with autism.

I have to say that ONLY someone who does not have a child with autism would EVEN CONSIDER that any parent would try to keep passing their child off as being afflicted by autism if they were not.

I would go on TV proclaiming our joy if Patrick was healthy to the point where he did not need his card. In fact, I would mail the medical card to the Governor along with a thank you card.

But that is not the case.

I receive a letter from the med review team directing me to a PhD in Murray that Patrick has to see before his medical can be approved for the year. The letter gave no specific information other than the address and directions.

As we pulled up at this really, really, old house I was in shock. Now, don't get me wrong, in Paducah we have a LOT of offices in homes. In fact two of my doctors are in remodeled homes and my dentist used to be. My home is no show place. But this was a ran- down house that looked on the verge of being abandoned. A good picture in your mind might be a really old, ragged, college rental that has seen better days.

I thought maybe, just maybe, they were remodeling. But when I stepped inside, I soon saw this was not the case. The inside was darker, mustier, and just plain worse than the outside. Some guy was at a hodge podge desk with papers strewn all over. I told him who we were and he didn't really say anything. Patrick was going to start exploring, so I asked if there was a place we could sit. Up front there was only a really old metal rolling office chair. Files, boxes and papers were stacked up all over the hall by the entry. We were directed to a converted type of sun porch room that was dirty. Very dirty. Now, this isn't coming from the queen of the clean, and everyone who knows me realizes that with four kids and all my dogs, our house is really "lived in." But this was NASTY.

Patrick is not feeling well after the ride down to Murray so he kind of sprawls out on a dirty couch. I take a seat. The fella from the front gives me something to fill out. It is a questionnaire that is behind a battered clear pouch. The handwritten directions say for me to fill out all the questions but don't write on the form. They gave me scrap paper that had printing on the back to use.

I was in shock that the state of Kentucky had sent me to something that resembled a crack house and now they couldn't even make me a copy of the paperwork to fill out. There was zero direction given on what to put other than answering the questions by indicating 1 or 2 etc for my choice. I tried to be logical and write our name on the top of the paper just so they wouldn't get it mixed up with anyone else's file.

Now, I don't think I've mentioned yet that this house smells of musty smoke and another type of really bad odor. For all the biomed parents out there whose kids deal with allergies, you can only imagine.

A few minutes later, a middle aged man wearing blue jeans with a dirty stain on the front of them walked into the waiting room. He didn't make eye contact with or address me. No introductions etc. Nothing. He asked for Patrick to come with him to his office. Patrick is still kind of lying down....he just turned 7. So I gather his coat and say "Packy, come on let's go follow him."

The man finally decides to address me by saying that I am not needed and I need to stay in the waiting room. Okay, so I literally have no clue specifically why we are here, no clue who this man is other than the paper that the state sent me with his name and this address, and now he tells me to stay in this room.

I decided to just stay seated. They were only going into a tiny room next to us (and these are house rooms so they are tiny and the hall is a small area). I thought this might be rather amusing to see how this PhD fella might be able to work with Patrick to get him to cooperate. I have a Masters of Education with a Special Education emphasis and an autism specialization. But I didn't plan on mentioning any of this to the "doctor."

Patrick walks out of the room. The "doctor" says (and I am quoting almost as verbatim as I can) "Patrick go ahead in there and have a seat. I have to get some things and will be with you in a minute." He says this as if Packy is 30. The good doc goes off into another room and good ole Packy walks right back to mom in the waiting room.

Try number #2. "Patrick come on back in here. I'm ready. You need to come with me." No response. I get Pack up and walk him to the doorway.

They go into the "office" and a few seconds Patrick comes back in. Repeat once more.

The good doc suggests that Patrick is not in the mood for anything today and we will have to reschedule. Well, mama here is thinking "reschedule, my ass." We had to drive an hour, I had to leave my other three with a sitter, and it disrupted our whole school day for something that is clearly jumping through a hoop.

I look at the doc and said "if I can come in with him, and just sit there, he will do what you want him to do." He doesn't say yes but he doesn't say no, so I take the silence as agreement. We go into the office which is a piled up room with mismatched furniture. The "desk" is a 20 year old card table with a dirty top and the vinyl peeling off of it. He has Patrick sitting in an old wicker lawn chair...the kind with the sloping back that a kid can't lean back in because they are so deep. I am in a similar old chair. The doc is trying to push the table up to keep Patrick in the chair but the chair is so deep that Patrick just lays back and can kind of "melt" out from under the table to escape.

The doc flips open a book and shows a picture of a cat. He says "Patrick what is missing from the cat?" Patrick said "cat". Doc repeated. Patrick said "cats yellow." At this point, I'm not sure what is missing so I guess that tells you where my own IQ might be.
I ask the doc if he is performing an IQ test. He responds yes. I told him Patrick has done a lot of tests and I name several. I also said he progressed through years of ABA but we had never done anything of a "what's missing" that I could remember.
He tried it again with another animal and Pack labeled the animal and then gave the color. I think he might have even said it had four legs. Yes, actually he did, that was what he did with the next two. He is trying to apply his own logic. This man is asking long, lengthy, strange questions. So I am going to say the animal, then state the color of the animal, hmmm, what else could this guy want....oh I know, maybe I am supposed to count their legs." He did all of this. What he didn't mention was the cat had some whiskers missing and the white tip was missing from the end of the foxes long tail.

The doc tries another approach. This one is classic.

"Patrick, what makes water boil?"

At this point, I can only wonder what school awarded this man a PhD?

I told the doc that Patrick would not know that information due to that type of phrasing. He can tell you the stove is hot and it is dangerous. He flipped a page and Patrick went to town counting. Whatever he was supposed to do on this page, he completed because it was counting objects. He also had to follow the direction and listen so he could know if he had to count the square or the brick etc. He then read him word problems in his lengthy sentences which he could not do, but I was able to use short words and tell him to add the numbers, which he can do. I am sure this does not count.

Patrick read some words. He gave him a pencil and asked him to write something stupid. I cant even remember what it was. So I said "write your name." Which he did, and very legibly too. He then wrote Barney and some names of characters from TV. He did a few more things they guy asked but I would have to interpret for him the lengthy "adult" speak to something short and direct that Pack could roll with.

Finally during reading, Patrick just had a melt down and was not going to cooperate with this guy anymore. He was asking him to read from a book laying flat on a table that was so tall it reached around Patrick's chin area since the wicker chair was so low. Pack just got frustrated at this point and was not going to make nice any longer. I told him I thought that was about it. He nodded and we got up, got our coats and headed to the door.

No goodbye, no discussion, etc. The guy at the desk said "good luck with your child" as I handed him the paper in the clear plastic and my responses on the scrap paper I was given. I thanked him. I almost thought he looked embarrassed. He should have been.

Now, can you imagine what this "doctor" is charging the state for an IQ test? This test was so inappropriate for Patrick. The doctors whole demeanor was indicative that he has not had much experience with children who are on the autism spectrum. It was ridiculous. A waste of our time, the "doctors" time too and the state/taxpayer money. This doctor was so unprofessional it was unbelievable. I don't think he had ever heard of HIPPA regulations much less health department, fire code, building regulations. It is hard to believe he passed any sort of inspection so he could be put on the state testing provider list. Let alone a licensing inspection to hold his license to practice.

I remember the frustration back in the day when Packy was little (maybe one or two) when to "play the game" we had to jump through a hoop or two with a pediatric well child exam at the state university or a time or two that I had to grit my teeth because the person we were dealing with just clearly didn't have a clue about autism. But goodness, this is 2010, I guess we have just been so fortunate that we haven't had to deal with anyone like this in so long. I know they are out there....but I had almost forgotten what it is like.

I'm still shaking my head in shock. I don't really even have a good closing, other than to say that I am still in shock. I am also glad that my husband was there because he describes the house in much harsher terms than I do so I know that I didn't dream it up. I know you all have experiences like this too, but I just had to share it.

It did give me a new resolve to help others. What if I happened to be a mom or dad that did not know better? What if this man would have said at question #2 "well he doesn't know what makes water boil. Hmmm. We cannot progress any further on the test. His IQ is 50 and the outlook is not good." What if I would have believed in this person, in testing, and in the power of the title PHD? Many people are programmed to accept and not question medical tests, psychological tests, prognosis, medical advice etc. What if all the pioneering biomed parents before us had accepted this?

If so, my son would still be the one year old little boy who everyone thought was deaf because he had zero reaction to sound. He would be sitting in the living room right now humming and either staring out the window with an emotionless stare or stimming on the light or the fan to the point he could not eat or move.

Thank you to all parents and children who braved this road before us and dealt with MANY people like this doctor and many who acted much worse. Thank You because it is because of you that I have my son back and he is the happy boy you see in my other posts riding his horse, loving his dog Angel, and saying "I love you mama" to me.