Jake's Journey

Dr. David .... 2 Thumbs Way Up

2009-08-13T19:23:00.004-04:00

We saw Dr. David Berger today. Our original appointment was scheduled for Labor Day and then they decided to close the office for the day so they moved our appointment up to today.

So we drove to Tampa for our 9:30am appointment and wound up meeting with Dr. David a bit after 10am (we were forewarned that his appointments run late so we were not surprised by this or upset in any way). A very friendly nurse took Jake's vitals while we waited and then another staff member took his picture and prior records CD from us. Dr. David came out and said hello and then got right down to Jake's level to introduce himself to him while he was playing in the ship playhouse in the waiting area. He instantly became Jake's friend when he asked about his shirt and who was on it. When Jake answered "Spongebob" and Dr. David said, "Of course. Cool." Jake was willing to follow him anywhere. :)

In his office Dr. David asked about our "story", questions about Jake's diet, behavioral tendencies, sleep patterns, etc. He checked Jake over. We talked for a long time about various things and then we began talking about beginning biomedical treatments that would work in our case for Jacob. We discussed the Nordic Naturals Cod Liver Oil we had Jake on already and will be switching brands as well as upping the dosage from 1 teaspoon daily to 3 teaspoons daily. We also discussed our less than successful attempts at trying to get Jake to take the orange Super Nu Thera Powder Multivitamin. Dr. David suggested a different Kirkman Super Nu Thera Multivitamin instead. He also suggested that we begin giving Jake Epsom Salt Baths every night for at least 7 days for 15 minutes at a time. The Epsom salt baths are supposed to help provide Magnesium Sulfate to help eliminate toxins and help Jake especially with night sweats and sleeping issues, some bumpy patches on his arms of eczema, as well as aid in some digestive functions.

Dr. David ordered 2 lab tests for Jacob. He suggested beginning with a Urine test for toxins. He also wants to get a stool sample test done to check for yeast. At our next appointment in September we will discuss these results and decide where they will take us from there. Also at this next appointment is where Dr. David will do blood draws for a few more tests.

Unfortunately, these services are quite expensive. The lab kits are almost $400, $360 appointment fee, plus $50 for the multivitamin, $20-something for the Cod Liver Oil..... It was a very expensive day. Granted we can submit a claim to our insurance company to attempt to get some kind of reimbursement but we know the chances of that are HIGHLY unlikely. So now that we are broke for the rest of this month we can begin saving to be broke again next month when we go back. Is it worth it???? That is yet to be determined. But I have a good feeling about the direction we are headed with this, and time will tell.

So, overall Adam and I were very impressed with Dr. David's passion and parent partnership ideals in treating our son. He was very attentive to our concerns and was great with Jacob. He is certainly in a comfort zone dealing with these children which is wonderful and extremely beneficial to us. He made it clear that he is available any time for any reason and that he would be Jake's doctor for as long as we would have him be. It was refreshing and reassuring.

I finally feel like we are headed in the right direction with the right guide for this journey. I'm excited for what is to come and what could come for Jacob.

Appointment!

2009-06-18T20:28:00.003-04:00

We have an appointment with Dr. Berger in Tampa finally although it is a ways away from now - September 7th! Yup, September, which is to be expected. There were only a few availabilities for Sept. and then the rest in November. We are on the waiting list for any possible cancellations or openings, but I am not counting on any.

Adam and I have been busy researching and reading. We have been kicking around beginning GFCF diet full force instead of what we have tried in the past and looking into all aspects of that.

We are also kicking around starting Jake on a program called Fast ForWord for reading and comprehension as well as cognitive development. It is supposed to have wonderful results with children with Autism as well as be a really excellent accompaniment to an ABA program. This program looks to have fantastic benefits and is very suitable towards Jake's current areas of deficit as well as something that interests him completely - computer games! :) Unfortunately the program runs about $500 per month when you use a host program through a clinic in your own home. I can't imagine how much the program is to buy, but I have seen some crazy licensing prices. The good thing would be that most children use the program for 2-6 months. So we are only talking $1000-$3000..... ugh.

Its probably my imagination but Jake seems to really be opening up with more focus during our "home therapy sessions" He is able to identify his flash cards for color words with just a regular black type on a white card (we have progressed from colored cards with a white word for the color, the color word in its own color, matching the color word using a black and white flash card to a picture of the color, etc) We were thrilled with his progress. This weekend we will be starting our touch point math.

Hoping for more news to follow soon on his developments!

Updates

2009-06-09T18:29:00.002-04:00

So, as we have been researching more and more on Biomedical Intervention fro Jake, Adam and I have come to the conclusion that we will need some further assistance on our approaches to this. We have found a wonderful and highly recommended DAN! Doctor, Dr. David Berger in Tampa (roughly 2 hours north of us)that we are now waiting for an appointment with after completing our registration as a new patient. DAN! doctors certainly are not cheap ($180 for 30 minutes) so we will be using his consultation and services as wisely as we can, going in with an array of info and ideas and hoping to come out with answers and a plan. We feel it will be worth it at this point.

On another note, Adam and I did call to remove ESY services for Jake this year. ESY is the extended school year services provided by our district for the ESE kids qualified for more "instruction" towards their FAPE. Yeah, well this program is from 9:30am-12:30pm Monday through Friday for a little over 3 weeks. He would be on a bus at about 7:45am to get to this school he was assigned to that neither we nor he have ever been to or even know anything about it, to be picked up by a teacher he has never met and who does not know him. Then he can sit almost another two hours home again on the bus. Now, for children who thrive on routine and familiarity, this situation is far less than ideal since by the time Jake becomes remotely comfortable with this teacher, ESY will be just about over so he is wasting his time there and we are putting him through an experience that will no doubt cause him some anxiety for nothing. So we called for him to be removed from the attendance for the summer.

Instead, Adam and I are drawing up our own curriculum & ABA model therapy sessions to do at home with help from others as well as training manuals, DVDs and more. It seems like it will be a ton of work and so far is proving to be both exhausting and expensive. We know he still won't get the amount of ABA he needs, but it is a start and something should be better than nothing.

Tomorrow is our last day of school and the boys are certainly rowdy tonight! Summer is just around the corner!!! :)

Hectic!

2009-05-19T16:19:00.003-04:00

Things have been a bit busy around here between daily life, work, school, etc so I have not had the time to properly update here.

Jake is still taking the Cod Liver Oil everyday. I want to tell you that we have seen more language from him and not even just more language but more complete communication. Full sentence requests without prompting and things like this. I want to tell you that this sudden development is from the Cod Liver Oil, but I just don't know if it is or it isn't. I will definitely say it is helping him along at least.

We have been working on our "functional sight words" and he certainly is sitting a bit longer to tolerate the drills of flash cards, matching colors and writing on the dry erase. He is doing well and we hope it continues.

The multi-vitamin powder??? Well I guess you can say Mama didn't raise no fool! I tried to mix it into various foods but my little bugger is a smart one and knows it is in there and refuses it. So we are trying still to get it into him.

I ordered our Urine Test kit for toxins and will be anxiously awaiting its arrival!!!! :)

Jenny Fan????

2009-05-07T19:33:00.004-04:00

So, I am a tad disapppinted in myself that I have become a Jenny McCarthy "follower"...not a fan, but I do pay attention to what she does on the Autism front. That being said, I pay attention to most things on the Autism front that can be brought into mainstream attention by people with the ability to do just that (like Marino, Robinson-Peete, McCarthy, etc). And luckily with her celeb status and large mouth/personality she is able to do that alot more than a group of no-name parents can in that regard. This seems to have its positives and negatives.

I read her book, Louder Than Words and as much as I wanted not to like it, I thought it was a good account of her story. Easy to follow and probably a great read for family members of people with Autism to give them a little insight about some of the true things we have to go through. Of course her story has more medical issues than mine does, but overall I was impressed. I have not picked up Mother Warriors yet, and I don't plan on reading it for any particular reason. I am interested in her new book -

Healing and Preventing Autism by Jenny and Dr. Kartzinel. It is supposed to be an account of all things biomedical and with the way she wrote Louder Than Words, it should be a very easy read with things written in ways to be understood by people unfamiliar with this line of treatments. I am hoping to get some more information on choices we are making and more available to us. I am also hoping to lend the book out to relatives/friends to help them understand a bit more too as needed. I have yet to hear a first hand review on it so I will be looking forward to getting it this weekend and taking some time to go through it.

On a home note - Jake is doing well. We haven't noticed any kind of changes in him yet, but we haven't been doing the Cod Liver Oil for even a week yet. The Super Nu Thera arrived finally so we plan to start that on Saturday.

Going on here this week

2009-05-05T16:33:00.003-04:00

Jake is still taking the Cod Liver Oil. We are still giving it to him in the water bottle hidden for now, but it is working at least and he is taking it without issue. We told his teacher he was taking it and to be on the lookout for any changes both positive or negative. Still waiting for the Super Nu-Thera powder to arrive from Kirkman.

Jake's new IEP is now in place. I was very happy that we were able to change goals including Dolche sight words to functional vocabulary including words of interest for him like Spongebob, Mickey mouse, etc. Doesn't sound like much but it really is. Jake has also been playing board games in class like Memory, Trouble and Candyland and playing them well. I am excited about trying out a family game night at home that he can participate in! :)

His 8th Birthday is at the end of the month. His little brother's birthday was yesterday, so to make things a tad easier we are combining birthday parties to one big one between Matt and Jake. They will be having a Pirate themed party (which they both like) and a huge bounce house with Pirate of the Carribean theme! Jake will be so happy. It will be a party he will enjoy because he will be able to bounce his little heart away and not have to deal with all of the people or all of the noise! :)

He did it!!!

2009-05-02T09:40:00.002-04:00

A little trial and error there this morning. We started out trying to put 1 teaspoon of the Cod Liver Oil into his juice. Of course the oil pooled up on the top so I mixed it around causing tons of little oil bubbles instead which looked very odd mixed into his Cranberry Grape Juice. Jake took one look into the cup and said "No". So then we tried just a little bit of juice with 1/2 teaspoon and no mixing it so it settled into two bubbles on top of the juice. Gave it another few hard stares and said "no" again. So then we decided to attempt giving him the oil directly on a spoon and seeing how he faired with that. Needless to say, he was less than thrilled to try it. So both Adam and I tried it off of there to show him that it wasn't so bad, which it kind of wasn't but then that awful after taste of it hit and we told him he didn't have to try it. We knew between the thickness of the oil and that after taste that he would not take it. So then a stroke of genius from Adam - try a water bottle. The boys love drinking out of these plastic water bottles so we grabbed one and poured it into it and then showed Jake as we were pouring more juice from the bottle into the new water bottle of juice. He took it and sucked it down, no reservation. So like I said, some trial and error there but he finally drank down the juice in the end with the Cod Liver Oil in it! So we will be picking up a new plastic character water bottle or two at the store today to help disguise the oil. Woo Hoo!!!!

Unexpected

2009-05-01T19:16:00.004-04:00

Well I tried the Cod Liver Oil . I have to say I was pleasantly surprised. I expected some kind of fish smell but there was none. Then, I expected a fish taste and there was none. I did cheat a little bit - well maybe not cheated, but at least I took the oil the way Jake will be taking it. I took the one teaspoon of the Nordic Naturals Cod Liver Oil (orange flavor)and mixed it into Motts Tots Apple White Grape Juice, which is one of Jake's favorites. Putting the oil into the juice, it settles in little pools on the top and needs to be mixed well. Drinking it, I got a little bit of a greasy feeling on my lips from the oil. The only thing I tasted was a subtle orange flavor added to the juice flavor. It was completely tolerable and hardly noticeable so I am hoping Jake will do well with it too. We'll start Jake on it tomorrow morning. And so it begins!!! Day One coming soon...

And package #1 is here...

2009-05-01T15:36:00.003-04:00

First shipment is in from ASD Markets! They were very quick to process and ship the order. I am very happy with it. I even bought myself a new little Autism Awareness pin to wear on my badge at work! :)

So now my dilemma is - do I put the Cod Liver Oil in my drink tonight so I know what this tastes like and possibles ways to better disguise it before giving it to Jake??? And do I attempt the Melatonin tonight or tomorrow to see what the effects of it on me are to have an idea of what he will go through??? It is not as if he can tell me what he is feeling so I am thinking I will need to make myself a test subject as well. Ugh, the thought of knowingly drinking fish oil makes me a little sick. I hate most seafood so just the name "fish" throws me off. LOL Oh well. To have some idea of what he will taste, feel, etc would be a good thing. So I will do it and report back to you tomorrow.

Just waiting on Kirkman to send us the Super Nu-Thera now and then onto ordering our first at home test kit.

Ordered!!!

2009-04-28T16:34:00.002-04:00

First order of "stuff" is in....

I orderd Kirkman Melatonin @ 3 mg., 100 Chewable Tablets and Nordic Naturals Cod Liver Oil Orange Flavored 8 fl. oz. from ASD Market

and

Super Nu-Thera® Powder - 150 gm from Kirkman Labs

I'm very excited to start these with Jake which seems silly to me, but I am. I am hoping for some small or even subtle results. Not counting on anything of course but hoping!

Jake was and still is a horrible patient when it comes to taking medications or vitamins. We are looking at inventive ways to slip these things to him. Suggestions would be great. And yes, we have tried his juice, applesauce, etc. We need something more creative to fool our little man. We are going to try juice again for the Cod Liver Oil. We had read that the powder multivitamin could be mixed into some things so since Jake has a waffle with syrup every morning for breakfast - we may be able to make Jake a new "special" syrup mixture with his vitamins. I would still love any and all suggestions you may have to help of course!

We're planning on ordering the urine test by this weekend.

Hours of Research this weekend

2009-04-26T15:55:00.004-04:00

Has lead to feeling lost. I feel like I know that this path is right for us to attempt at this time. I do not know how these things can be so damn expensive or how we will be moving forward with progress when our bank account will have to dictate what can be done instead of what needs to be done! I have been toying with the decision to call a DAN! doctor, but at $300 per hour I think our choice in that regard has been made for us at this time.

We are going to start with a urine test kit for Porphyrins that should give us an idea whether or not Jake has any toxins (metal like lead and mercury) in his urine. We are ordering this kit from Laboratoire Phillippe Auguste to self-administer at home and returning it to the lab for processing. Once we receive the results we will make an appointment with his pediatrician to review the results and see what our next move will be based on the info we receive.

We are also looking into two products to begin. Jake has always had sleep issues. He is up at all hours, he sometimes goes stretches through the night with hours of no sleep. So we are looking at added Melatonin to his initial supplement profile. We are also looking to add Cod Liver Oil to his juice. This is said to help with attention span, increased eye contact and help with speech development as well. We have seen that Nordic Naturals seems to be the brand most reccomended among the Autism community so that will be our product of choice. We are going with the unflavored liquid to hopefully easily add to juices.

Multi-vitamins are strongly reccomended so we are going to see about beginning Super Nu-Thera from Kirkman Labs .

This seems to be our starting point. I am ordering these items this week so that next week we can begin. I am planning on keeping a written document to record changes as well as update here. More to come I am sure!

This is new for me

2009-04-26T08:51:00.001-04:00

Blogging is not new for me, but being personal about Jake to this degree will be - online at least to strangers and even to family. This blog I am creating to help go through a new chapter of trying some biomed treatments with Jacob. I want to give you as brief a story as I can to start out and then I'll explain why we have chosen biomed.

Jacob is 7 years old now, about to be 8 at the end of May. He is the second born child of four boys. He is bright beyond belief. He is sweet, kind, and funny. He also has Autism. He was officially diagnosed as Autistic when he was 4 years old. Before that doctors, specialists and schools labeled him as "Developmentally Delayed with Autistic Tendencies". The labels don't really matter. Jake is Jake.
When he was about 15months old he lost his language, his interaction with us and went inside himself to some place only he knew. The screaming began. The word "tantrum" can not even describe what some of his earliest meltdowns were. He banged his head on the floor. He rocked and rocked and rocked his way to comfort. We went through the Birth to Three program in our state eventually receiving a therapist/teacher in our home to work with Jake. He attended speech and occupational therapies until we could no longer afford them. He went into the ESE PreK in our school district. The first year of PreK he was put into a VE (varying Exceptionalites) classroom with a teacher who should not have been teaching ESE kids. After countless issues there he was put into a Speech and Language based class full of Autistic and Down Syndrome children with a phenomenal teacher who made some wonderful break-throughs with him!!! Into an Moderate Level Autistic Kindergarten class with a first year ESE teacher who could not handle his behavioral problems. We paid for a VBA specialist to go into the school to work with the teacher and went to behavioral therapy sessions ourselves to help. The VBA therapist saw Jake in our home as well for awhile until affording that was no longer feasible. And then finally after some rough teachers and years in the school district, we were BLESSED with his current teacher for the last two years who has extensive training and experience working with children with Autism. She has helped bring out so much of Jacob that he had hidden for so long.

So why now are we finally attempting a biomed approach in his treatment??? Well, vaccinations were never a concern of mine triggering Autism in Jacob. He did not have his vaccinations on a normal schedule and did not receive certain controversial shots prior to us losing him. He was always on the normal developmental curve but at the latter end of it. Hind sight of course is 20/20. Looking back on it now I can say that he was always so fussy from about 10 months on, that I should have pushed our pediatrician more with his lack of language development, I should have been more proactive with those concerns that my mom senses knew were just not right. Then there were things I looked at thinking, oh he was just a bit behind where his brother was at this age not wanting to compare the two because all babies develop differently. And that was my mantra for quite some time before I realized something more was there. An underlying something.

When you first hear "Autism" there is the time when you stress about how, why, and what???? I still go over the differences between my pregnancy at that time with Jake in comparison to his three neuro-typical (as they say) brothers. The differences - I had insulin dependent gestational diabetes complete with a full diabetic diet consisting of many artificial sweeteners, Jake was our only child born in NJ (who now has a 1 in 94 children rate of autism!!!), and Jake was the only child to receive shots at the hospital after birth before discharge.

We have struggled through affording Jake's needed therapies to help with his development. At this time he receives limited amounts of both Speech and OT at school as well as an ABA approach model in his classroom. We provide his "therapy" at home through models we learned, info and instructional suggestions from his teacher and therapists at school. This is NOT our ideal way of helping him but it is all we can do without the insurance coverage for what he needs or state assistance. Our state has ridiculous waiting lists for service funding waivers - FIVE to TEN years!!!! We've tried to relocate but jobs are not available and a large family of six is hard to afford in states that have excellent services for Jacob. Had we known Jake was autistic before we left NJ - we never would have relocated to FL. We left the best to relocate to one of the worst states providing services to special needs children. That's irony for you.

Jake is currently at a peak and although we always wind up with a few steps forward and then a few steps back with him we want to see what else we can try now to push forward. I have always read research related to Autism but more and more I have been reading recent research on things specifically pertaining to Jake's circumstances and want to see if there is any connection for Jake to food allergies, toxins in his system, etc so that is why we are going this route now.

Please bear with me while I try to work through this. I do not want nor need political or religious issues regarding our choices or badgering about why we waited so long to try certain things. I realize that there are hundreds of ways we could have went about treatment for Jake. We did the best we could with what we had. Our path has already been started and going back to shoulda, coulda and woulda's will not help in going forward. I am trying to maintain a POSITIVE mindset as much as I can (which for me is very difficult some days) so I need reinforcement, experienced suggestions and support more than the commando parents who have a tendency to rant and rave instead of educate and assist. I realize that some of my posts will seem extremely elementary but I am starting out on this and we all need to start somewhere. Hopefully I can also help someone who considers this or needs to know more as I go along.