Indpendence Day

Well...it's 4th of July again...Independence Day... and I always like to ask myself the same question every year since Lily was diagnosed,"Is Lily more independent than she was a year ago?" It has been a difficult question to ask in the past because we didn't always like the answer...which was sometimes "no". But, I can proudly say that this year we can say "YES". Here are some accomplishments she has made in the past year:

• she is potty trained for the most part (communicating that she has to go is still an issue but we'll take it!)
• She is better at problem solving

• Greater social awareness and ability to interact

• Communicating more effectively - her speech is a little better but still a major obstacle

• Successfully integrated into a regular Kindergarten for almost 1/2 day most days...she had some days where it was a no go:-)
  

• Using a spoon and fork (I didn't think this was ever going to happen! It's sad to say that my almost 6 year old still needs to wear a bib most of the time:-) Maybe we'll even be able to eat in a public restaurant again...keep your fingers crossed!
  

• Sleeping through the night (Thank you God!)

• Answering our questions with one word answers about 50% of the time

We still have work to do but we are so proud of how far she has come. It's so cute to hear Braden say, "Mom, did you hear what Lily just said" when she does speak. He is in the same awe of her progress as we are and he is only seven! Every day we see a little more of her want and need to interact with Braden and with us.

I had a phone consultation with a nurse at True Health Medical Center yesterday and we are starting a new protocol tomorrow. Lily's stomach dysbiosis issues have been resolved. According to the nurse, we now need to address her viral issues (high levels of Epsteinn Barr virus) and mitochondrial dysfunction. One of the most important things I have learned about the Defeat Autism Now approach to treating autism is that they treat the co-morbid conditions that often go hand in hand with autism like mitochondrial dysfunction, metal toxicity, intestinal dysbiosis, infections, viruses, etc. As each of these co-morbid issues is resolved, some of the symptoms of autism seem to improve greatly or go away all together.

Lily will be starting Valtrex on Sunday to tackle the Epsteinn Barr Virus in her system. We have no idea where the heck it came from...this is usually a virus associated with mononucleosis...the nurse said that this virus is another sign of Lily's immune system dysfunction. She has trouble fighting off daily viral exposures that most of us are able to rid of easily. She made us aware that there will most likely be some reactions to the valtrex like fever, rashes, irribabilty....oh joy!!! We'll just have to keep on eye on our girl to make sure her reactions aren't too negative. Some of the positives we're hoping to see with this protocol are improved speech and just overall better functioning.

Wouldn't it be great if this was the "magic bullet" that makes her autism disappear!! Of course I had to ask Lily's nurse if they've seen any kids just "come out of autism" with Valtrex in their practice. I know that I've read about this happening with Stan Kurtz's son (read more about his story). She said that they haven't seen this type of recovery with Valtrex treatment alone. She's not a believer in the "magic bullet" theory and has seen kids recover (including her own son) with the treatment of many of their deficiencies simultaneously. We're not counting on it....but of course we would love it!!!

Here is what her regimen is going to look like for the next 3 months:

Morning
Step One: 1/2 capsule of the enzymes PRX and EDTA 30 minutes before she eats breakfast
Step Two: 1/2 capsule of Valtrex, 2 ml Diflucan, Fish oil, Pure Minerals, 1 drop of Vitamins D and K, and 1/2 tsp. Colostrum Gold and 1 1/4 capsule of MitoRescue

Evening
Probiotics Klaire Detox and VSL #3 (1 cap. of each), Glutathione Cream, 1/2 tsp. magnesium citrate, 25 mg 5htp, 1 cap. artichoke extract, 1/2 cap. valtrex and MB12 injection (every 3 days)

A new journey begins....and we're in for what will probably be another roller coaster ride!! I'm going to brush the dust off of my video camera and keep daily video records over the next few months. Hopefully I'll be able to figure out how to post these to my blog...we'll see!!

Lily's autism awareness video from April

Make a Smilebox slideshow

Another day....

Well...today is the last day of Lily's biofilm protocol before we start the next step...antiviral treatment with Valtrex. If you're curious about any of the supplements that Lily is taking, I'll give a brief explanation later in this blog.

Lily has been on biofilm since the middle of January. Biofilm is a protocol that was designed by Anju Usman, M.D. to help kids on the spectrum with continuing intestinal issues that didn't seem to be resolved by antibiotics, antiviral therapies, or anti fungal treatment alone. They prescribed biofilm to heal Lily's stomach dysbiosis. It was a difficult regimen to maintain to say the least!!!

Okay...I'm not a doctor so bear with my descriptions! I'm just going to describe it as I understand it. Every morning, we had to give her 3 enzymes (CDX, PRX and EDTA) 30 minutes before she ate anything. This allowed the enzymes to break down the film that was protecting the bacteria/fungus that was causing the dysbiosis. For those of you with kids on the spectrum, you know this can prove to be difficult with her OCD issues. Hell...I even have problems waiting 30 minutes to eat if I"m hungry. After waiting 30 minutes, we then gave her the anti fungal/antiviral supplements of diflucan, monolaurin, olive leaf extract in addition to supernuthera p54, Mitorescue and colostrum gold.

According to Lily's most recent stool tests done in early May, after a year and a half of dysbiosis, Lily's stomach issues have completely healed. We aren't saying that they are gone forever. We still have to maintain the gfcfsfyf diet and watch her sugar intake. However, the biofilm protocol seemed to heal her dysbiosis.

At my last appointment with her Defeat Autism Now! , her doc told us the next comorbid conidtions we needed to work on are viral and mitochondrial issues. According to blood tests, Lily has very high levels of the Epstein Barr virus in her system. We found out that this can be present without having any viral symptoms. Her levels are half of what they were 8 months ago when we had her blood tested though! Her doctor thinks this is due to the fact that we have been strenghtening her immune system over the last 20 months with her currently protocol. The improvement can also be attributed to the natural antiviral treatment of olive leaf extract.

Although her EBV levels have been cut in half, they are still considered extremely high. She said that it was time to pull out the big guns ....valtrex. I have a phone consultation with a nurse this afternoon to discuss the details of that protocol. I do know that we have to stop biofilm while she is on valtrex for the 3 month trial period. I'm nervous about stopping biofilm because it healed her gut issues. Her doctor has said that when they take kids off of biofilm, the dysbiosis will often return and the child has to restart biofilm again. I'm also nervous about starting valtrex b/c I've read about the regression that can happen in the first month of starting it. At the same time, I've also read about the amazing progress some children (like Stan Kurtz's son) have seen with valtrex so I have mixed emotions. One thing you can say about the biomedical journey in autism...it's a roller coaster ride and you never know when the next turn or loop will throw you into a tailspin!\
For the mitochondrial issues, she is taking a compound call MitoRescue designed by Dr. Usman. Mitochondrial dysfunction has been linked with apraxia of speech....which is one of Lily's major obstacles. We are currently in the process of increasing her dosage slowly b/c she seems to be senstiive to some of the ingredients. However, we have noticed that after starting it several weeks ago, her speech has increased a little.

Supplements Lily is currently on:

• Supernuthera P54 - multivitamin
• Colostrum Gold - for buiding the immune system
• diflucan (medication) - treats yeast overgrowth
• Klaire detox - probiotic
• VSL #3 - probiotic
• Glutathione cream - removing toxins
• monolaurin - treats fungal and viral issues
• olive leaf extract (ole) - treats viral issues
• Magnesium citrate - prevents constipation
• MB12 injections every 3 days - improves the body's methylation system

Mito Rescue - a compound created by Dr. Usman to help with mitochondrial issues associated with apraxia.
I'll be posted more soon about Lily's new protocol I'll learn about today....joy:-)