It’s been awhile, but we finally made our trip out to CA to see Dr. Michael Goldberg.
While we go on a regular basis regardless of what’s going on, this time we were motivated to go because Maximus has been having issues staying on his clean diet. While it’s true that every kid (and most adults) have issues staying true to good eating, it can have some serious health consequences for Max. So when he got to the point of cheating every single day we knew we had to do something.
This came about after several months of trying pretty much everything we could think of and making no progress at all. We were getting very frustrated and part of the problem is that Max does not always make the connection between his choices and the outcomes. He tends to blame others instead of taking responsibility. Some of that is maturity for sure, but sometimes he’s a complicated by to figure out too.
In brief, the visit went very well. Unlike any of the past visits, this visit was 90% between Max and the doctor with me just being present to clarify details here and there. He responded very well to the questions and there were even some insights into his thinking and some things that were bothering him. He talked to the doctor about some things he has never brought up to us, so I was pretty blown away a few times by the answers that Max gave.
All in all, I think a lot of positive changes will come out of this. What was really clear to me is that we need to do these visits more now that he’s older. Twice a year would be awesome if we could swing it. And I also think his siblings would have benefited from being part of the same discussion because it would have helped them understand a lot of the details that are lost on them day to day.
For me, the best part of the trip was having that one-on-one time to bond with Maximus. We always have such a special connection when it’s just the two of us, and even more so when it’s out of our normal environment. I just love the little guy.
Maximus preferred watching the live map of our travels over using the iPad. He kept letting me know what state and cities we were passing over.
Arrival at LAX.From 35 degrees in Chicago to nearly 100. It was awesome.Car for mom?A friends restaurant that closed a few months earlier.We stayed at a nice AirBnB that had a outside patio. We used it in the evening to just hang out.No visit is complete without a visit here. The smell itself was hard to resist.Returning our pimped out ride.Once again, coffee all over my socks. The same thing happened on the last trip so clearly it’s me that has a problem.
Autism was once so rare that it did not have a name. The renowned American psychiatrist Dr. Leo Kanner described autism in a 1943 paper based on observations of 11 children. For several decades afterwards, autism was thought to afflict 4 or 5 out of every 10,000 children. Over the past two decades, this population has exploded. In March of 2013, the Centers for Disease Control (CDC) announced that parent-reported autism spectrum disorders (ASD) now affect 1 in 50 children aged 6-17.
Autism isn’t the only growing problem. The National Survey of Children’s Health (NSCH) shows a 21.8% increase in Attention Deficit Hyperactivity Disorder (ADHD) from 2003 to 2007. Obsessive Compulsive Disorder (OCD), Chronic Fatigue Syndrome (CFS), Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS), Pervasive Developmental Disorder (PDD), Tourette syndrome, and other neuroimmune disorders are also on the rise.
A diagnosis of autism or a similar condition can devastate families, emotionally and financially. In 2006, Michael Ganz of the Harvard School of Public Health published research that estimated a cost of $3.2 million for lifetime care for a single autistic person. The CDC’s report Mental Health Surveillance Among Children — United States, 2005–2011 estimates a total annual cost of $247 billion.
In light of this crisis, how is the system responding now? Educators and psychologists use the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-5) to determine a diagnosis. The criteria are based on observations of the patient’s behavior, not medical tests. Typical interventions include behavioral modification, speech, and occupational therapy. With heroic efforts from parents and therapists, these treatments can help some, but few of these children will have a normal, productive life until we realize that we have misunderstood what is happening. We are teaching chronically sick kids coping skills instead of trying to cure their illness.
The world must recognize that these children are ill. Genetic predispositions play a role, but genetics can’t cause an epidemic. Are these mental disorders? Researchers have known for decades that most of these children also have physical symptoms, including allergies, gastrointestinal problems, seizures, chronic illnesses, motor issues (clumsiness), and fatigue. A growing number of researchers are finding that these conditions may be related to inflammation and immune system dysregulation. There may be multiple contributing factors, such as environmental stresses or viruses. It is no wonder that these children have trouble thinking, communicating, and relating when they are chronically ill. Many of these children developed normally until they regressed after becoming sick. They were not born with this disease; they acquired it. And some are recovering. Too few. It is time for world governments and medical systems to make curing these diseases a priority!
Please take the time to sign this on-line petition. It only takes a minute but just may change someones life forever.
We are always trying new things to help Max progress and catch up what’s considered age appropriate. One of the areas I personally feel he needs the most help is with his speech. It’s pretty clear when you talk to him that he doesn’t master the English language at the same level that his twin Andrew does.
One thing that was recommended to us by his doctor in California, Doctor Goldberg, was Rosetta Stone. I like a lot of people are familiar with it as a software program that teaches you a new language. But it never occurred to me that you could use it to learn your primary language.
Because it’s very visual and interactive, it turns out to be a natural for kids. And because it’s also something you do on the computer, while wearing a super cool headphone/microphone setup, Max really looks forward to doing it.
We spend about 20 minutes a night most nights (nights that i’m not exhausted, late getting home and that he’s not crabby) and I can see improvements in him almost day to day. Certainly over the course of a week. It occurred to me recently that maybe I should start recording them just for a record of how far he has come. So, this is the first of those recordings. It’s the cut-down version of what was originally 35 minutes long.
It was a bit of a test for me to figure out how to get all of the different sources, and it turned out that the voice he hears in the headphones was not something I captured successfully. So, as you watch it may be a bit hard to follow since you’re not hearing the voice prompts. But I expect to have this fixed for any future recordings.
If nothing else, it’s fun to watch because he’s so darn cute.
It was just over a year ago that we started seeing a new doctor for Max, Dr. Michael Goldberg in Tarzana CA. In just a short 12-13 months we have seen amazing progress with Max and I think we both agree that it was a great decision to start him on the NIDS treatment.
Max from our 2011 trip to see Dr. Goldberg.
Max from our 2011 trip to see Dr. Goldberg.
The big improvements have been with Max being much happier and happier more often. He smiles and interacts with us and his siblings more and in the last 6 weeks or so has had a language explosion that seems to get better daily. His personality seems to shine though more now than ever before. He has improved greatly in both cognitive and non-cognitive skills. When I look back at what he as like a year ago when we took him to CA what sticks out the most is that he was much more inside of himself. It was as if you really had to “go to him” to pull any real interaction out of him. Even when I look back at the photos from last year, he looks sad or sick in many of them.
Max trying on new frames for his 2012 fall look.
Now, he is much more likely to come to you, ask questions, show you something he did, ask for help or just want to sit with you. Those all sound so basic, but it’s all new ground for Max. Even as I type this he’s playing with his brother Andrew in ways that he wouldn’t have a year ago. He now engages Andrew instead of it only being the other way around. It’s really amazing.
Max and Andrew having a debate on Global Warming.
The down side would be the mood swings he has from time to time. When he gets angry or frustrated it can take a long time to get him out of it. And when he’s in one of those moods it causes the whole house to be tense. In that area he has been a puzzle because we make changes that seem to help, only to see him have a bad day for no obvious reason a few days later.
Some of the changes that we have made in the last year that made a noticeable difference (and are still hard to believe) include having him drink only purified water (non-tap), and eating only organic foods. I wouldn’t have believed it without seeing it, but he has a pretty extreme reaction to drinking tap water or eating some non-organic vegetables. But while making those changes helped, it’s obvious there’s still more that effects him – so we continue to look for more pieces to the puzzle.
One note on our tap water – we actually tested it and found that it’s high in some chemicals that are bad for anybody, even adults. And it started to make sense why I was having some bad reactions to drinking our tap water as well.
Max at Santa Monica Beach, Augist 2011
But overall, Max is doing a lot better than one short year ago – so later this week we continue our journey by returning to CA for a annual visit. And this time, Andrew is coming as well. He’s excited about his first trip on a airplane. I’m excited because it’s my first flight on Virgin America. While we do 4-6 week follow ups with the doctor over the phone or via video, we need to see him in person once a year.
While it is only a 3 day trip (only 2 nights) we’re looking forward to having a good time with the boys. Sydney and her broken arm will be staying with Grandma and Poohpa in Michigan and having fun of her own with her cousins.
Sydney heading to MI for the rest of the week. Mulling over the menu.
Last year when we went we visited Santa Monica Beach and really liked the area. This year we have a hotel located walking distance from the Santa Monica Pier so that should be fun for the boys.
It hit me in a unexpected moment. While watching Max and Andrew interact at the eye doctors office this past weekend (we were there to get new glasses for Max), it became clear as day the distance Max still needs to go just to catch up to his own age. For a long time the boys were the same in so many ways, or at least close when it came to development, but now Andrew has sprinted far ahead. Or maybe it’s more that Max slowed down to a walk. Either way, it was a moment of clarity, because for the first time the difference seemed so tangible. I found myself just taking a moment to think about it. While Max is making progress and we like to celebrate the little victories, it suddenly became clear to me just how long the road ahead of him still is.
So even more reason to be excited that we are seeing Dr. Goldberg. Max has made noticeable progress since our visit to CA. The two biggest changes we see are that he is becoming more verbal by not only saying more words, but starting to put together sentences better. We’re getting more eye contact. But not just more eye contact, eye contact that really shows a sparkle in his eyes. This past week I when I picked him up to school he looked at me in a way I’ve never seen before, with a bright sparkle in his eyes and a smile, and said “Hello Daddy. Mommy at work?” He then gave me a big warm hug and walked with me to get the other kids. To most parents this sounds like no big deal. But what is more typical is for him to get mad when he sees me there for him (instead of mom) because he doesn’t like changes in routine, he throws a tantrum right there on the floor in front of everybody, and then starts in with his OCD tendencies. He loves to run into any room he can and flip the light switches on and off, or go for the bathroom and either use the sink or flush the toilet. That doesn’t happen every time, but you never knew for sure what to expect.
Another big changes has been the way he wakes up in the morning. In the weeks leading up to our trip to CA he would wake up at his usual time (between 5 and 6am) and before he was awake 30 seconds he would be mad about something and yelling. Let me tell you, when you yourself are just jumping out of bed from a dead sleep, it’s no way to be greeted in the morning. But now he wakes up smiling, he says hello and if you’re lucky will even sit with you on the couch and just snuggle.
Not only do we see the positive changes, but others do as well. Both at school and in his therapy class teachers have commented that they have noticed he’s calmer, talking more and participating more in group activities. All of these are things that have been a challenge for Max.
He still has his moments where he can’t keep it together, and we had one of those this weekend too while out at the park. He wanted to walk instead of riding in the wagon, but at one point we just needed him to sit in the wagon but he kicked and screamed as we put him in, and then screamed almost all the way back to the van (a nice 10 minute walk through what is otherwise a nice quite park). Yea! Fun at the park! 🙁
About a week ago we had our first conference call with the Dr to discuss test results and the weekly reports that we send to the doctor. He was also able to answer questions that we had and start us down the next phase of the treatment.
Max started a new medication this week (in addition to his current one) and once again we’re seeing small improvements. We are also getting more blood tests done (this will be a regular occurrence to keep him closely monitors) because the last round of tests that we did while in CA showed that he may have a thyroid problem. It will take another test to tell for sure. It’s also possible that the stress of the trip and the fact that he was sick for part of the trip to CA had thrown the test a bit. But that too is something that will need to be addressed if it is in fact a problem.
This Wednesday it will be 7 weeks since our trip to California to see Dr. Goldberg. What’s important to me is not just that we’re seeing improvements, but that he’s being treated in a very thoughtful and measured way. Dr. Goldberg is following a protocol that he’s been refining for over 20 years, but at the same time he’s taking into account that Max is a unique child and needs any treatments customized for his needs. Max will not be recovered overnight – it’s a long journey . But I do feel like we’re onto something good with Dr. Goldberg’s treatment.
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