Of haircuts and Mozart

Lib had his hair cut today and did not cry! He even stood up and ate some of my homemade "bunny" crackers I brought along while Robert, our new God of Hairdressing, used the razor on the back of his neck! Robert's place: Imagine walking in to the smell of a clove type candle burning "Mediterranean something or other" Robert says. Small fountains, stained glass, so much sensory stuff, the sound of soft new age type music. Robert himself looking like a young Captain Kangaroo in his chef's royal blue double button down shirt, a Master Gardner and all around cool person.

Back at home Lib loving The Mozart Effect, Relax, Daydream and Draw. See the calming effects.

A pretty good day, I'd say.

"And to answer your question, yes...

the brain is plastic, and the brain can recover. You should have hope for your son."

With that statement, our new DAN/neurologist gave me a prescription for hope. The exam room suddenly came into sharp focus, changing from dull gray to vibrant color. I could feel the blood flowing through my veins. I took a deep breath.

Dr. Soto is a likable, poised and kind man who educated me about the brain and about how it functions in relation to the gut, things I thought I already knew from all of my own reading and "University of Google" degree, (to paraphrase Jenny McCarthy,) but I came away with a new understanding of what probably happened in the past and what is now happening with my son. Dr. Soto distilled it down for me into a whole new perspective. I am not so overwhelmed by it anymore. I think I may finally get it.

Dr. Soto said that doctors love to categorize and label things but for me to throw out the label of autism, that it doesn't mean anything useful. He said it's just a catch phrase for a syndrome of inflammation, which is brought on or exacerbated by all of the things we folks in the world of "biomed" gab on about endlessly: metals, antibiotics, yeast, bacteria, etc.

He told me what I needed right now is a structure from which to work. I guess I appeared to be all over the place with it so to speak and I guess that is what I have been feeling. Like we are just stumbling around and trying to intuit things and not checking things out with labs. And we have a doctor who is basically not guiding us. I spend most of my time doing my own research and talking every day to my biomed email pals. We moms (and occasionally dads, aunts, grandmothers) who are so busy but somehow manage to type out our questions in emails to each other as we are getting dressed, or dashing out the door, or on the phone, or feeding the dog. Things like, "hey, what do you know about choline?" or, "aren't you supposed to take the P5P with the Vitamin C in order for it to be absorbed better?" or "my son just had scrambled eggs and all of his lights just went on now what is in the eggs?!!"

This is a typical day. We are always brainstorming, researching, and supporting each other and so I thank God for the information highway, okay?

BUT, for the amount of money we fork over to our DAN docs, we really should be getting more information out of them. I know they are busy, but these are our precious children and they have lots of things happen in between appointments. Sometimes it takes forever for our doctors to get back to us, if ever.

Dr. Soto examined Lib and observed his behavior while we talked. He told me he doesn't need a new EEG or an MRI because Lib has the signs of "classic inflammation," and that an MRI would probably be normal. He does want to see a copy of that EEG I managed to get when Lib was around 4 years old to look at it himself, but he is pretty sure of what he is seeing with Lib. This man was the former director of the stroke center at the local hospital here. I checked out his credentials, believe me. It is sad to say but I am wary of doctors who have recently become DAN certified because there are a few who just want the money and they really don't have the experience to treat children with autism. I don't get that sense with this guy. I think he knows what he's doing. And, he's a BRAIN man. I find that comforting right now.

I told him about the absence seizures when Lib's yogurt had been increased last summer, and how they disappeared when I stopped the dairy. He said I just basically showed him an EEG. He said casein and gluten both cause inflammation and that is why it is recommended for children with a diagnosis of autism to remove these proteins from the diet. He also said, and take note here, to make sure Lib is not getting any MSG or any of the many names it goes by. Luckily, we don't eat any highly processed food, however, his beloved pretzels we actually put him on to get him off of something else contain YEAST EXTRACT. In other words, MSG.

So, now I have to wean him from that and find some other substitute. It seems never ending for me.

MSG causes inflammation. If you look up autoimmune diseases in general you will find at their base, inflammation of the entire body.

I remember posting about this subject before. In 2006, I listened to a DAN doctor speak, Julie Buckley of Jacksonville, Florida. She began her talk by saying, "In 10 years, autism will be known as the disease of inflammation." Even though she went on to describe the chemical chain reactions that produce what we label in the end as simply "autism" (and the chart could fill a gymnasium it's so complicated), that is the one idea that stuck with me from that evening.

But I forget about it all of the time, and that is because I have had a doctor who really has not explained much to me because he is too busy and too rushed and he has not seen Lib in over a year and a half. That is why I knew I had to go local and was so excited to find the new doc who happens to be a neurologist too. Again, in my own backyard.

When I told him about the DAN doc we have been seeing for awhile but felt the need to switch, he said he has seen this over and over, that parents start out of the gate okay, and then as time goes on they get lost. He has patients that have come to him from our doctor in New York, saying the same thing...the doctor might know his stuff, but he is too busy, too famous, the office is in too big of a mess, calls are not returned in a timely manner, or that they have to rely on emails alone from their doctor's office to navigate through the process.

How about my DAN doc in NY constantly calling Liberty "she" when there is a picture of all of us on the front of the file? At least Dr. Soto will remember Lib is A BOY .

Emails and phone calls - that is all some of us have to rely on - just a voice to guide us through the woods. And the blogging community which is comprised mostly of parents trying to figure it out. When you think about it, it's ridiculous.

Dr. Soto said, "You might feel like you are starting all over again, but we have to know where we stand right now. Is there Candida or not? Bacteria? Vitamin A, D, thyroid function, etc. When was the last time there was a comprehensive stool sample - oh, never? Okay. How about an OAT test (organic acids)...oh, never?" No OAT test but Lib was placed on Diflucan...for months in preparation for Valtrex. Let's don't go there.

Also, I've been giving Lib curcumin on occasion, something I have posted about previously. Curcumin is basically turmeric. Dr. Soto said it can be very effective at reducing inflammation but needs to be taken appropriately, that is, three times a day at 500 mg and it needs to be given in a fatty base like cod liver oil to make it effective. That was news to me.

I must have looked overwhelmed at one point, and he said, "Stay in the present moment, Kathi, and all will work out." I like that in a neurologist, don't you? Very Eckert Tolle. I need to be reminded.

I asked Dr. Soto about Lib's inconsistent behavior. That some times he is present and the eye contact is wonderful. We are even starting to get words to pop out on occasion. For instance, today at school, he said, "Goldfish." (The teachers were trying to get another child to ask for his goldfish crackers and Libby apparently helped). I said to the doctor, "It's like he's caught in a loop, like things just are not connecting properly." He said, "That's it! That is it exactly." And, apparently that is what happens when you have inflammation spread throughout your body and your brain. And, that's the story, but it's only the beginning apparently.

It's still hard for me to comprehend this completely. That word I've spewed 50 times now, inflammation...to me connotes a picture of something you take ibuprofen for and you're done. But that's not it.

Well, Dr. Soto has a PLAN for us. Labs first, stool sample, urine sample, return to office.

Walk on from there.

Limbo

I have not written much since I feel like I am just keeping my head above water. Liberty has had constant puzzling symptoms which I am sure are due to the side-effects of DMSA chelation. We have one more round to give next weekend and then we will do his first battery of testing to see what he has spilled.

Liberty is doing well, overall, I think. But the summer is looming. The country's economic situation has spread to the schools. I learned today that 200 positions are being cut, that means his classes next year will be enormous and aides for the teachers will be reduced. Our children need small, manageable classes, so I am unsure what will happen. It is now March, so IEPs are on the horizon, the summer must be planned, and we are waiting on information...what services are covered by insurance and what are not, which therapists are available this summer, do we do a listening program or ditch it? Horseback program? Swimming? ABA? Summer camp? No word on the camp yet.

I think most of us won't know what will happen with the school situation until late in the summer when the funds from Obama for special ed will come in.

I will be posting more frequently I am sure in the coming weeks. We are heading to a new DAN doctor who happens to be a neurologist. How fantastic is that? I am hoping to get some more answers, find out where we are in this crazy maze. I feel we are in a new phase. My son is getting older and though he has progressed in many ways, still there is no speech and he will be seven years old in July. I never thought we would be here, but here we are.

So, I need pictures of his brain. I need to know once and for all what it is exactly we are dealing with. You know "these days" diagnosis takes place in an entirely different way. When Lib was diagnosed (over 4 years ago), all they did was parade my 23 month old boy around a room, ask him to do certain things, then handed me social security disability papers and sent us on our tearful way. Now, I have heard they would not dare diagnose a child without a thorough neurological examination which includes MRI, EEG, consult and a massive battery of labs. We never had any of it. And, not one person along our way has EVER suggested it.

I have tried to get EEGs here but the only office in town is just horrible. Parents tell tearful stories of the way they are treated. On our last visit, they gave my boy Benadryl without asking me and he went bonkers for 2 days and we STILL got no EEG. The first visit, he had an abnormal pattern only in his occipital lobe and the doctor here (if you can call him that) was very nasty to me because he found out I was one of those biomed moms. In a nutshell, the bastard told me that Lib could have a seizure and die at any time, but have a nice day. I should have reported him right then and there, but I was too wounded like so many parents are. (He went on to say the gluten free, casein free diets are a bunch of crap).

So, when I trooped back to see a new associate at the-only-game-in-town horrible clinic, he told me it was nothing to worry about! That children had abnormalities in the occipital lobe all of the time. About a month after that, I saw Lib have absence type seizures, took him back and we had the whole Benadryl experience with no EEG done.

So we are still left hanging in the breeze.

I am praying we get some answers and that this new doctor will help us find them. I have heard good things about him. I am cautiously optimistic - if there is such a thing.

Back later. Film at 11 as they say.