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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.

Max started going back in January as I previously posted and was accepted early because of his Autism diagnosis. It’s generally a very hard school to get into because they are a integrated school with a mix of kids that are on target developmentally and others that are challenged.

Now Andrew has qualified to get in and was super excited today to ride the bus with Max. It’s all he would talk about yesterday and this morning he as all too excited to talk your ear off about his new back pack and his Lightning Mqueen binder. It was a really fun morning with them all.

A few photos are here, the rest are on SmugMug.

It’s been just over a week since we returned from CA, and I finally have time to take a breath and add more details about our trip to California. As I mentioned previously, we feel it went very well.

Preamble

Skip this if you just want to know about Dr. Goldberg

It ended up being a long week for many reasons. Not bad, just LONG.

First, we’ve had a small leak in the bathroom for the last 5 years (seriously). A few days before we left I finally had a plumber come out to fix it, only to find out it was not the plumbing, but the tiles on the splash wall of the bathroom were falling off and has been running behind the tiles all this time. Not so good. So not the quick fix I was hoping for, but the bathtub needs to be re-tiled, which involves removing the shower walls and being without a shower for at least a few days.

I was able to quickly find a trusted home repair service to take the job on, and they even came in with a reasonable bid. But then the more we talked it through, I realized that our crappy bathroom floor also needed to be replaced, and it just made sense to do it all at the same time. Fine – now it’s WAY more money than what a simple leak would cost to fix, but at least it’s being done while we’re gone (in both CA and MI), and will minimize the time we have to go without a shower and toilet.

The only problem ended up being that they had to start on the bathroom the day before we left for CA if it was all going to be done by the time we returned.  So, a day before we were supposed to leave for CA we had to get a hotel room near the airport so that we had a working toilet and shower. It ended up being a very nice night/morning and it was fun to stay with Max in a hotel room. He didn’t know what to make of it, but he seemed to enjoy it. Seeing things that area old experiences to you through the eyes of a child that’s doing it for the first time is always so fascinating and enjoyable. It’s one of the most enjoyable parts of having kids.

The next morning (Tuesday August 2nd) we went to the airport for our direct flight to CA. It was very interesting watching Max. You could tell he was just taking it all in. We took a train from the long term economy parking lot, waited in a long security line, and then still had 2 hours to wait for our flight at the gate. During that entire time he was very good. Amazing actually.

When we got on the plane he sat between both me and Brenda and was clearly very nervous. First by the noise of the plane, and then by the movement as we taxied to the runway. We each had a hand on his legs and he stayed calm as we took off, and enjoyed a snack and short nap during the flight. For it being such a long day for all of us, he really did great and was in a good mood up until we got to the hotel and had to wake him up in the back seat of the rental car.

The next day (Wednesday the 3rd of August) was the big day. We took a short side-trip to Santa Monica Beech and then headed to our appointment with plenty of time to spare.

Meeting Dr. Goldberg

We were both nervous and excited about meeting Dr. Goldberg. We had already read his book and felt that we knew a lot about him, but we just didn’t want to expect too much from our first meeting.

Dr. Goldberg runs a regular pediatric practice out of his LA office, but on certain days sees only parents of autistic children, like us. Most come to him because they too have read his book and are curious. Many are from the LA area, but people travel from around the world to meet with him.

Our time with Dr. Goldberg consisted of a very relaxed, informal meeting in the lobby of his practice. This seemed a bit odd at first, but the benefits were clear pretty fast. Max had plenty of room to run around and play, and there was a separate room attached that had plenty of toys to keep him busy. While the 3 of us talked, Max played and occasionally ran up to us to get attention for one thing or another. Brenda and I took turns keeping him out of trouble and dealing with his OCD with light switches.

It was clear right away that Dr. Goldberg had personally reviewed the entire pile of information we had sent him in advance. He had made notes of things he wanted to discuss with us and had mostly wanted to clarify or expand on some of the information we had provided. This spoke volumes to me personally. I have switched doctors several times over the years, and the vast majority of the time my records were never reviewed before my first meeting. It’s always obvious by the questions they ask. One doctor didn’t even know I was Diabetic until I mentioned it to him. RED FLAG! I didn’t have him for very long before I switched again.

Over the course of 90 minutes we talked at length about how Dr. Goldberg has spent years refining his treatment protocol, and how Max may fit into his course of treatment. At almost every turn, Max fit into what Dr. Goldberg calls NIDS (Neuro Immune Distress Syndrome). This condition is based largely around the idea that after a child was born, their immune system was compromised. The causes can be anything or everything from environmental to viral. For a normal healthy child with a well developed immune system, many of these things would not be a big deal. But for a child that has a compromised immune system, it stresses out the body. At some point, the child is actually considered “sick” because the body can no longer carry the stress. When this happens, many of the symptoms that I child presents with are very similar to Autism. In part this is because in recent years something that is otherwise unexplained and has some symptoms similar to Autism, it’s just all lumped together. And as we know first hand, once your child is labeled as autistic, pretty much anything that goes wrong after that is just attributed to your child having autism, and little interest is taken in it. But if Dr. Goldberg is right, a great number of children that are labeled as autistic are not suffering from a congenital neurological problem, but are actually sick. Sick in a way that can be treated. But nobody in the medical community seems to be interested in hearing that.

The other important thing to note is that there is no definitive test to diagnosis your child as autistic. It’s very subjective and based on one or more people’s opinion after spending a hour or so with your child. When Max was diagnosed, there were about 6 people in the room with us that evaluated Max at the time, and they had to have a private meeting for 20 minutes after evaluating Max to decide as a group what to tell us about him. The point is, it’s not black and white in most cases.

So after answering all of the questions, Dr. Goldberg was confident that Max fit his definition for NIDS, so we are now following his treatment protocol, which we started on Monday the 8th.

There are two major components of the protocol. First, the diet is very restricted. He can have meat, most vegetables and a few fruits (no tropical fruits). The major things to avoid are gluten, dairy, sugar and grains. Color dies are a big one as well. In fact, we have to actually remove the blue diet that’s on his medicine before he takes it because many children have negative reactions to food coloring (it’s considered an allergen). All of this may sound like a pain in the butt, but the fact is we’ve been doing 95% of this for a year now (all thanks to Brenda and all the research she’s done on nutrition). So we only had a few small adjustments to make.

The second part is the medicine. Working on the theory that he has a virus in his system, he is now taking valtrex. While this on the surface seems like a radical treatment, it’s easy to find many examples of families talking about how their child was greatly improved by this part of the treatment alone. However, in many cases the child gets worse initially before they get better. I mean this in the sense that they become even more irritable than before, and we have already seen this with Max. He’s much more hot and cold with his moods, and when he’s having a melt down it’s more intense and lasts longer. But on the flip side of that, he has been showing more eye contact this last week and has been more verbal. He’s talking more, and saying new words almost daily right now. Se we are seeing some real positives.

One amazing thing about our visit with the doctor is that we were allowed to both video tape and record audio of our visit, with no restrictions at all. I wasn’t even allowed to have a camera in the delivery room when the kids were born because of hospital policy! If I had to guess as to why he’s so relaxed about this, it’s that Dr. Goldberg wants to get his message out to people. He’s interested in helping as many people as possible, and the only way to do that is to make the larger medical community and parents aware. It’s only through parents putting pressure on the medical community that things will ever change. I have since had our entire meeting transcribed into a text document so that we can review information that was discussed just by doing a word search on the document.

You may be wondering how we can be seeing a doctor and doing such a radical treatment when we’re over 1,000 miles away. There are several ways that it’s possible.

First, Brenda sends weekly reports as requested by the office. They provided a form with specific questions about all aspects of how he’s doing. After they receive the report, the doctor reviews it and the nurse calls Brenda back with any new instructions or changes for the upcoming week.

Second, every 4 weeks we will have a conference call with the doctor, just as if we were there in person and discuss all of the particulars. We also have the option of doing a video call over Skype, which we plan to do.

The next course of treatment after the Valtrex will be decided later after we see how he responds to this part of the process. It can take up to 3 weeks to see significant changes, so we have some time yet.

After our 90 minute meeting with the doctor we were taken into one of the exam rooms where they withdrew about 23 gallons of blood from Max for a variety of tests (ok, maybe only 8 gallons but it seemed like a lot for such a small kid – but he was fine).

After screaming through the entire thing, Max was pretty tired and exhausted. Think about what a pain that would be for a 3 year old. First you have to play by yourself for 90 minuets while your parents more or less ignore you, and then you’re rewarded by being held down and having your body drained of all of it’s blood.

We ended the day by getting max to bed and letting him relax. I think he really enjoyed having a big bed all to himself. He liked when we would tuck him in under the covers every night.

Time to Head Home

We all had a good night of sleep and headed out the next morning with plenty of time to get to the airport. We had about 3 extra hours (by design), so decided to head down to the Hollywood Walk of Fame for a little sight seeing and lunch. We had a great time and we were both reminded how nice it was to just have a single child to focus on and shower with attention, instead of feeling so split with our attention.

After taking in the sights and having lunch at Mel’s Diner (which was awesome) we started our leisurely trip back to the rental car place by the airport. And that’s where the low point of the trip took place.

Sorry About Your Car

I’ll get into the details in a future post (it has gotten very interesting in the last several days) but i had a accident with the rental car. Nobody was hurt and I’m very thankful for that. Especially since I caused the accident. The rental car got the worst of it but was for the most part drivable. We were only a mile and a half way from the drop off location when it happened (another good thing because the freeway would have been out of the question).

So we ended our trip to LA with a big BANG. Like I said, more on that later. This post is already way longer than I expected.

NO SHOWER FOR YOU!

While we were waiting for our flight I called to check in and see what the stays of our shower was. Things were moving along great, however due to a few small problems that had to be fixed along the way, it was not going to be ready when we got home. So, as much as we didn’t want to spend even more money on hotels, we decided to get one close to the house for one more night. We checked in at 2am on Friday, and were up and on the road heading to MI for the weekend by 10am the next morning.

We had a great (albeit very short) visit to MI and collected our other two children from their week long visit with Grandma and Grandpa Tomchak. They both did great in our absence and it was nice to know they had such good bonding time with their cousins as well.

On Sunday afternoon we returned to our semi-remodeled bathroom, and it was A-W-E-S-O-M-E. What we had was so bad for so long that it was hard not to really appreciate the new one. I say semi-remodeled because we didn’t do anything with the crappy walls, crappy bathroom door, or crappy fixtures. We just didn’t have the money, and after all this was a LEAK that had to be fixed. We were already way over budget.

We were so thankful to have Avalon Home Services take this job on. Not only did they make great suggestions and do things to save us money along the way, but they went above and beyond by fixing a few things in the bathroom and not charging us, bringing in the mail every day, and even taking out the trash on trash day. Seriously, they were awesome. So a big thanks to Cathy and Steve for all of their hard work while we were gone. They worked hard to make sure everything was done by the time we got home on Sunday and after the week we had it was not under appreciated! If you’re in the Chicagoland area I can not recommend them highly enough.

What’s Next?

In 2-3 more weeks we will have decided, along with Dr. Goldberg, what our next step with Max is. We are still cautiously optimistic and know that we’re doing the best we can to help Max. The funny thing is, I got the feeling during this trip that Max knew that as well. I really felt like I bonded with him on this trip and got choked up a few times while playing with him on the bed. While he’s very tough when he’s “in a mood”, he’s just so sweet, loving and funny when he’s well. We just love him so much.

More in coming weeks. Sorry this is so long, but I wanted to get it all down before too much time passed.

]]> http://tomchak.com/blog/2011/08/17/the-goldberg-visit/feed/ 0 http://tomchak.com/blog/2011/08/01/max-meet-dr-goldberg/ http://tomchak.com/blog/2011/08/01/max-meet-dr-goldberg/#comments Mon, 01 Aug 2011 15:12:01 +0000 Thomas Tomchak http://tomchak.com/blog/?p=3663

Since Max and Andrew entered early intervention just after their first birthday,  Brenda has always looked for any and all solutions that might help the boys. As time moved forward the focus would change, and of course now the focus is on his diagnoses of being on the spectrum of Autism.

Brenda has read more books than I could have imaged, and frankly I don’t know how or where she finds the time. Some are better than others, and some of the better ones she’s asked me to read, which I have done. More recently, she read a book by Dr. Goldberg titled “The Myth of Autism”. It was the reading of this book that changed the course or our lives this week.

The underlying theme of Dr. Goldberg’s book is that while many more children are diagnosed with Autism these days than 20 years ago, a high percentage of them do not fit the original definition of what Autism is. That in fact, many of these children actually suffer from sickness that in many cases can be cured through his treatment protocol.

Through very careful screening, only children that meet certain criteria are accepted to see him in his LA office. You need to submit complete medical records and a recorded history of events, as well as some specialized blood tests. If you child seems like a good candidate, you’re accepted to make an appointment with the Doctor. We were lucky enough to be accepted and took the first appointment we could get (which was 3 or 4 months later). That time is finally here, and Max sees the good doctor on Wednesday of this week.

While we are not expecting any miracles here, we are cautiously optimistic. We have always believed that while Max did seem to fit some of the definition of Autism,  at times he does not. There are some very specific things that he does (like make good eye contact and initiate play with his siblings) that fly in the face of being Autistic. So while we don’t see this as a cure-all, we feel that from the research that Brenda has done, and from reading the book (we have both read it now) we would be foolish to at least not try this and see where it goes. Max is still very young and we want to use all of his time to our advantage to make him better.

So today Andrew and Sydney are being delivered to their Dearborn Michigan family so they can spend some quality time with the people there that don’t get much time with them, and tomorrow we head off to Los Angeles CA with Max for his very first plane ride. Funny, I didn’t take my first ride until I was 22 years old, and he’s not even 4 years old yet.

If you’re interested in knowing more about Dr. Goldberg and his book, follow the link below. For a very touching look at some parents that have seen their children recovered, watch the video below. It’s this video that first got my attention.

NIDS Website and more about Dr. Goldberg

This past Saturday we didn’t know what to do with the boys. The weather wasn’t bad, but it wasn’t great. We had spent the previous weekend at the mall since the weather was so nasty, but didn’t feel like being indoors again.

This is a short video that shows them being goofy right after their bath. It’s in low light and was shot by my new iPhone, so the quality is a bit worse then usual. Still fun to watch though.

[See post to watch QuickTime movie]