Some Progress and Our Third Appointment

Dylan started to do some independent walking all around the house a few days before Christmas Eve, it was so exciting! He was walking back and forth to us and just walked right out of the room! In the weeks to follow he is still doing this when he feels like it, he still hasn't pulled up to stand from the middle of the room yet, so we think when he can do that he will be a full time walker - but in the meantime, this is still great progress!

His left eye would turn sometimes and he would get a blank stare from time to time, since the DAN protocol this hardly ever happens anymore. His eyes look good and he seems more alert.

He can get up and down off of the living room furniture and off of the dining room chair by himself!

Third Appointment:
On January 15th 2008 we went in to get a couple test results and to decide what steps to take next, the test results showed that his calcium level already went up by 50%! But he was now low in Selenium, so we are adding that to the supplement schedule.

His white blood cell count was low - not alarmingly but something to keep an eye on.

We decided to finish up the Nystatin and then start ThreeLac (a natural probiotic/yeast fighter) this will also eliminate the ProBio Gold for now. He will start 3 Zinc capsules a day instead of the 2 and we will step the Actos up to 3/4 tablet, and Carnitine to 1 full capsule, we will also start giving the MB12 shots every other day.

We had to weigh our options, Chelation vs HBOT first - and we decided (due to unpredictable weather) that we would do Chelation first. So we will be starting that next week. We are starting with a very gentle natural chelator TTFD (a form of vitamin B1) because Dylan is still so low in minerals and some of the more effective forms of chelating can pull minerals with the metals and we don't want to alter our progress or have Dylan regress. If this form is ineffective or causes severe rashing we will move onto another one. This is a topical chelator in the form of a cream that will be applied to the skin - we hear it is not so good as far as smell goes (sort of rubber like) so we'll see.

We plan to start HBOT in March - when the weather is more predictable and we know we can make it 3X a week. (20 sessions are recommended at 1 hour intervals, 3X a week)

So far, things are going good, he is tolerating everything and making slow and steady progress.

The Results Appointment

We went back in the beginning of November for our results appointment - in the meantime between these 2 appointments, Dylan had started to stand more independently and was starting to take steps back and forth to us. (Huge Progress!)

The results were overwhelming

Dylan had a weakened immune system, he was not metabolizing correctly, his thyroid was off, he was low in Calcium, Boron and Zinc (all key minerals) he had a yeast and bacteria overgrowth, his allergy level was very high - the doctor explained that his body couldn't tell the good guys from the bad guys and so it would fight off things like certain foods instead of things that were harmful to him, such as viruses, metals, etc. Dylan also has high levels of heavy metals in his little body.

All of this was what we expected, not easy to hear, but finally we had answers - and the biggest thing was that There Is Hope! All of this can be reversed. Not overnight, and not without a lot of work, but it can happen.

The protocol we were to start:

Nystatin for yeast 3X a day
ProBio Gold (probiotic)2 capsules daily
Digestive Enzymes 3X daily
Specially formulated Amino Acids 2X daily (on empty stomach between meals)
Cod Liver Oil
Thyroid pill
MB12 Shots 2X a week
GFCF diet

All of this would be slowly implemented until he got up to his dosage and then we would meet with the doctor again to talk about Chelation (metal detox) and HBOT (hyperbaric oxygen therapy)

How did all of this happen? Most likely it is the result of his slow start with eating, his surgeries, antibiotic use, cold and allergy medicine, and his vaccinations. When a child is suffering with a weak immune system - instead of making them immune to the viruses - they are picking up those viruses and also the mercury that is still in so many of the shots that our kids are getting today. (This would be labeled as: Thimersol)

First DAN! Appointment

Finally October 8th was here! We were going to find out soon if our instincts were right and whether or not Dylan would benefit from the biomedical approach.

Our appointment was very thorough, immediately the doctor could tell that Dylan had a vitamin A deficiency - he got his first MB12 shot right there in the office, we also started ProBio Gold (a probiotic) and Cod Liver Oil to supplement for Vitamin A & D. Several blood and urine tests were ordered, we left with lots of information and high hopes of possibly getting a diagnosis (finally!) A big plus was that Dylan liked the doctor right away!

Dylan would start the GFCF (Gluten (wheat) Free, Casein (dairy) Free)diet slowly within the next couple of weeks. We noticed after his 2nd Cleft repair that when he stopped drinking milk (built mucus and made him choke during healing) that he became more attentive and started to say a couple words. The doctor explained that Dairy and Gluten are like Opiates to these kids and they crave them because they keep them on a high which keeps them in a fog. Dylan did replace his dairy with a wheat craving - so we knew that he would be a candidate for the diet.

How to pay?

When we made our initial DAN! visit in April of 2007 the waiting list was 6 months, Dylan's appointment would be October 8 - the day he turned 2 1/2.

What we weren't expecting was to find that DAN doctors can't take insurance because the medical industry does not believe in the biomedical approach and we certainly did not expect to find that it would be so expensive.

We almost cancelled the appointment not knowing how we were going to handle the cost but when a relative sent us some information about a doctor she knew in her hometown that was healing children and that she had seen the results with her own eyes, we knew that we had to find a way to do this for our son.

We were very very fortunate to have not only our loving families, friends and coworkers but also a large number of strangers pull together to help us out with some of the upcoming costs. It is something that we are very greatful for and we will never forget the sincere generosity of everyone that helped us out.

What our little guy has been through...

Initial feeding problems, syringe feeding to bring up weight
He had his first set of ear tubes at 7 months
He had an MRI at 9 months
His initial cleft repair, new ear tubes and a hearing test at 14 months
Ear tubes (AGAIN!) at 21 months
A Cleft Revision Repair, Tonsils and Adnoids removed, and yes another set of ear tubes at 28 months

So he was put under 5 times before he was even 2 1/2, he had also been on antibiotics a couple times for either ear or sinus problems and lived on allergy medicine for the entire spring of 2007.

He had physical and speech therapy weekly from December 2006 to August 2007 with minimal to no results. Just a miserable little guy when he had to be there.

Our Story

Dylan was born on April 8th, 2005 - Weighing 8lbs, 1.2oz. He scored 9 and 9 on the apgars. He was perfect! It wasn't until day 2 in the hospital that they discovered he had a soft palate cleft (an opening in his soft palate, his was split into a "v" and he did not have a uvula - the little punching bag in the back of your mouth) They explained that this was the most common of birth defects and that he would probably need a repair but would otherwise have a normal life.

He came home with us on schedule despite the fact that he wasn't eating well because he couldn't get good suction. He lost weight and we were in for several doctor visits in those first few weeks. We had to syringe feed him to get his weight up and then use a special squeezy bottle to assist him. Other than this slow start he was meeting milestones on time (other than getting his teeth late)in his first year. But when he turned 18 months he was still not walking and any words he did have were lost.

We wanted answers and started with tons of genetic testing, he had an MRI and mitochondrial testing, celiac disease testing... all with normal results. All that they could tell us was that he was a little low tone (hypotonia) but they couldn't tell us the reason. Hypotonia is a condition that is typically the result of an underlying cause.

I did my own research and found that Dylan's symptoms and delays were all very common in Autistic children. BUT Dylan was social, he made eye contact, he liked being close to those he loved, he had likes and dislikes, etc. He smiled and laughed all the time and appropriately. Even with all of that we couldn't ignore the similarities so we decided to make our first DAN! appointment.