Sunday Feb 28, 2010

Last nights sleep was epic! We now have an angel monitor which monitors the baby's movements and alarms if she stops breathing for more than 20 seconds (Wal Mart $120). Anaya has apnea episodes that kept me awake listening for her breathing. The medicine (nabilone) really helps her to sleep deeply and we are all getting more rest now.

I've been on a constant schedule of pumping and feeding and it pretty much fills up Anaya and I's day. She gets anxious when other people hold her and cries so hard she chokes on it. This means I hold her most of the day when she's awake. I'm really hoping that as she gets better she'll be more receptive to other people.

There's not much new to report, except that she smiled this morning- which is rare.

Go Canada Go! We'll be watching the Hockey Game and cheering for our boys!

Friday Feb 26, 2010

Anaya has been sleeping better at night since she started taking her nabilone. I was amazed the last two nights when she only woke up once to eat. She has been waking up well, wide eyed and watchful. These are some of my favorite moments. I really need a professional photographer to capture some shots of Anaya.

Today Anaya saw Nelson Peadiatrician Carrie Fitzimmons. Nothing new to report except that Anaya weighs 5.9 Kg. She was 6.3 Kg on Feb 1. She's lost weight. We need to try to get more calories into her. I went looking for a product called polycose but the pharmacies I went to didn't have it. I put a drop of maple syrup in her bottle to add a few calories. The DHA oil also has lots of calories in it. I seem to remember from Biology class that fats have the highest energy rating per molecule.

Anaya had a bit of a harder day today. It's always harder when I have to travel around with her. She is very sensitive and gets irritable very easily. Thank God Penny was there to help me today. It is impossible for me to drive. I have to sit in the back with the baby to ensure she doesn't choke on her saliva during a screaming fit. It's awful and scary when it happens.

Brent, Solara and I have tested out the zapper and are happy with the results. We have begun giving Anaya short sessions. The current is so low you can barely feel a tingle on your skin. Die parasites Die! (And all your little friends too!)

The Procter Hall fundraising event is going to be an evening of live music, food and good times! Party! This is not a grim event. It is to be a gathering of people celebrating life and raising money for Anaya's needs. It will be on March 27th. Anyone who wants to help out please send me a message. maraglow at gmail.com

Thank you to our anonymous angels. We are using your gift. A huge thank you to Rami, Deb, Dana, Dennis and others I don't know who brought firewood.
My heart overflows with gratitude.

Thank you also to everyone who takes the time to write a comment or a note to let us know you are sending love to Anaya. She's getting all of it - I promise.

Wednesday Feb 24, 2010

So many wonderful things are happening today! Where to begin?

Anaya has started taking a drug called Nabilone to help with her irritability and to keep her appetite up. I asked for it in particular because it is a cannabinoid receptor agonist (similar to THC produced by Pot plants.) It acts on the same receptors to produce similar healthful benefits without the psychoactive aspect. The reason I wanted her on this drug is because I have found medical scientific studies that show that cannabinoids act as neuroprotective antioxidants (which will slow the degredation of the myelin on the nuerons) and in some cases have shown to assist in remyelination. Read about Nabilone on Wikipedia. The Nabilone cost $51.00 for 10 days worth (and she gets the tinest dose!)

http://en.wikipedia.org/wiki/Nabilone

Here is one article. I have bolded the important parts.

The Journal of Neuroscience, April 1, 2003, 23(7):2511


BRIEF COMMUNICATION
Therapeutic Action of Cannabinoids in a Murine Model of Multiple Sclerosis
Ángel Arévalo-Martín1, José Miguel Vela2, Eduardo Molina-Holgado1, José Borrell1, and Carmen Guaza1
1 Neuroimmunology Group, Neural Plasticity Department, Cajal Institute, Consejo Superior de Investigaciones Científicas, 28002 Madrid, Spain, and 2 Unit of Histology, School of Medicine, Department of Cell Biology, Physiology, and Immunology, Universidad Autonoma de Barcelona, 08193 Bellaterra, Barcelona, Spain

Theiler's virus infection of the CNS induces an immune-mediated demyelinating disease in susceptible mouse strains and serves as a relevant infection model for human multiple sclerosis (MS). Cannabinoids may act as immunosuppressive compounds that have shown therapeutic potential in chronic inflammatory disorders. Using the Theiler's murine encephalomyelitis virus model, we report here that treatment with the synthetic cannabinoids WIN 55,212-2, ACEA, and JWH-015 during established disease significantly improved the neurological deficits in a long-lasting way. At a histological level, cannabinoids reduced microglial activation, abrogated major histocompatibility complex class II antigen expression, and decreased the number of CD4+ infiltrating T cells in the spinal cord. Both recovery of motor function and diminution of inflammation paralleled extensive remyelination. Overall, the data presented may have potential therapeutic implications in demyelinating pathologies such as MS; in particular, the possible involvement of cannabinoid receptor CB2 would enable nonpsychoactive therapy suitable for long-term use.
Key words: Theiler's virus; CB1 agonists; CB2 agonists; demyelination; neuroinflammation; remyelination; spinal cord; rotarod

So now we have a prescription for this drug and we hope that we shall see extensive improvement in Anaya - combined with the other therapies we are using.


In other Anaya news - She had a good day with less feeding difficulties. The pharmacist/owner at Remedy Pharmacy, who compounded the Nabilone for Anaya, mentioned that the Nabilone should also help with her gasping for breath by relaxing her throat muscles slightly. This should lead to less choking episodes and a lower risk of pnemonia!

I met with Nicole the Health Nurse and she has given me hope that Anaya will qualify for the "At Home" Program which provides extended medical benefits to extremely ill children. This means that Anaya will be able to have the care she needs in our home when she needs it. It also means that I'll be able to give some of my attention to my other family members who need love too :)

We borrowed a hospital grade breast pump from the health unit today, and I got a prescription to increase my milk supply. Breast milk is best for babies - even when they have to be bottle or tube fed. Right now Anaya is having difficulty with breast feeding so we have to bottle feed her. Due to the stress of the past couple weeks my milk supply had decreased - but I hope to see an increase with help from the lactation consultant and the herbs and medicine I am taking.

We still have a lot of hope and determination. Let nothing be impossible!

Tuesday Feb 23, 2010

Happy Birthday to a special lady. You are a hard worker and you have my respect.

Today was a day of ups and downs. Ups because we have found an experimental drug to try that might help! The down part is that Anaya is high risk for getting pnemonia due to her swallowing and breathing difficulties. I'm too tired to fill you in right now. I'll tell you more tomorrow.

Monday Feb 22, 2010

Today was a busy day for Anaya and I. A nurse came to the house this morning to talk about getting Anaya extended health benefits under the "At Home" program. Her name is Nicole and she was very nice and also quite thorough. We may be able to get some help in the home with things that Anaya needs and chores that I am falling behind in. It can be a daunting and depressing conversation to talk about Anaya's condition from a conventional clinical viewpoint.

I do my best to stay strong and positive in each moment. I believe that Anaya has the ability to heal. I don't look at her as a dying child. I look at her as a sick baby that is on a journey of healing. I will continue to do everything I can to help her get better. I continue to do research, one handed as I hold her, to find therapies that may help.

The picture above is one of the MRI images of Anaya's cerebellum. Click to enlarge. The light colored butterfly wing shapes are the areas that need our love and prayers - in addition to the rest of her brain where the condition is not as prevalent. If you dont mind - please take a moment and envision that the butterfly isn't there- that there is only solid gray color. We hope to see improvement in her next MRI and then you will be able to see how your thoughts and prayers have helped.

Our family made a new friend today. Her name is Penny and she has offered to be a support in helping us with Anaya's care. I was able to spend 20 minutes alone with my older daughter while Penny and Brent watched Anaya. It was great. Thank you Penny for your help. I'm so glad to have your frienship and support. Thank you also to Shelann who picked up a few things in town for me today. It is really great when people offer to help - as we sure need it now.

If you or anyone you know has an idea that may help Anaya heal please don't hesitate to let us know. We are very open minded and determined.

Sunday Feb 21 2010

Today Anaya started her Oxygen at home. She wears a little nasal prong on a long tube so that we can move around ok. The system is pretty easy to use and includes an oxygen making machine for continuous use and also tanks for going out. We are fortunate that this part is covered by MSP. Anaya slept very well last night. Today she seems to have a bit of a frog in her throat which has exasperated her breathing difficulties. There's nothing worse than watching a child struggle to breathe. Her vocal cords are tightening as she inhales- which makes a loud gasping sound and impairs deep breathing. The respiratory therapist assured me that although this is uncomfortable and hard to watch it will not kill her. I pray that this will heal.

It was a beautiful day outside and we took Anaya and her sister on a walk in the sun. The fresh mountain air was cool and the sunshine warm on our skin.

Due to Anaya's difficulties today i did not give her the kermit smoothie as it is a bit chalky and hard to suck out of the bottle. Instead i gave her the DHA orally by itself, the vitamin C mixed in with pedialyte. She has been getting all of her homeopathic drops though.

We would like to thank our friends Allan and Elisha who have been a phenominal support in our quest for organic herbal remedies. Anaya and our family are very grateful.

Saturday feb 20

Anaya seems to be responding well to the homeopathic treatment. She is less irritable today and appears to be breathing easier. She doesn't seem to mind the strange concoction I've been feeding her. It looks like kermit puke.

Our roommate Tom is organizing local fundraisers both in Procter and Nelson to help pay for treatments and living expenses. We are really excited to hear that lots of local talented musicians have offered to entertain at the fundraisers. I'm not sure what the dates are yet.

Yesterday we bought a parasite zapper from SK electronics. The zapper is used to kill parasites within the human body such as worms, flukes, bacteria, viruses, and mold spores with a low voltage high frequency electric current. This method of treatment has been extensively studied by Dr. Hulda Clark. She found in her research that the toxins released by parasites within the human body can be responsible for many diseases. She also found that these parasites can be killed using the zapper without any negative effect on the body. By combining this parasite cleanse with other treatments and environmental purity perhaps we can eliminate the cause of the disease. For more information on the zapper check out www.HuldaClark.com . You can also download the e-book " The Cure For All Diseases" for free from that site.

Once we test the zapper on ourselves we are going to treat Anaya with it starting with 30 second intervals.

The zapper cost us $174.00 and was built in Nelson following the schematics of Dr. Hulda Clark.

We are feeling very optimistic today and are determined to do everything we can to make Anaya better.

The Naturalpath

Yesterday I took Anaya to see Naturalpathic Doctor Brenda Gill in Nelson BC. After hearing our case history Dr. Gill told me

"We are fortunate here - the nervous system is one of the most responsive systems in the body for natural such as homeopathy. The nervous system does have the ability to regenerate and remyelinate itself. What we are going to do is band-aid her nuerons with DHA oil, feed her brain with Iso-Phos, antioxidize with Vitamin C and Coenzyme Q10, and stimulate balance of the brain and adrenal systems with homeopathic drops. Her adrenal system is likely in overdrive from the anxiety she is experiencing with her breathing difficulties. I think that she would benefit from supplemental oxygen to help her overcome her apnic spells and increase circulation. We are going to mix her (natural) medicine in with the breast-milk/formula combo you are already feeding her. Try throwing it all in the blender with some cilantro greens, sunflower seeds, and kale then strain it out and bottle feed it to her."

I suggested perhaps a heavy metals and parasite cleanse would be in order - according to the research of Dr. Hulda Clark PhD, ND. I showed her the book "A Cure for All Diseases" by Dr. Hulda Clark. Dr. Gill nodded that she had read it and would agree that heavy metals and parasite cleanses would be beneficial.

Dr. Gill has suggested IV Chelation and vitamin therapy. I am conducting more research on Chelation in Children. We started Anaya on some vitamins and homeopathic drops. After leaving Dr. Gill's office I went to Dr. Kalias office to enquire about oxygen at home. He has called in a request for oxygen support.

The visit cost breakdown is as follows:

Initial consult and vitamin testing: $131.25
Adrenal Homeopathic drops $ 20.00
IsoPhos brain food: $50.95
Brain and nerve Homeopathic drops: $12.00
Quality controlled Vitamin C powder (non acid): $35.95
Childrens DHA Oil $15.50
Coenyme Q10 $17.85
Tax: $5.65
Gas for trip (approx) $10
Time involved for trip: 6 hours.

What's going on?

Anaya Xanthe Delia, born August 2009, has recently been unofficially diagnosed as having a demyelinating myopathy for which the cause is unknown. She wasn't meeting her developmental milestones as she should and has been very irritable. We took her to see our local pediatrician in emergency as she began having difficulty breast feeding and was choking and gasping. Upon examination we were told to take Anaya to the Children's Hospital for further testing.

The care Anaya recieved at the hospital was awesome. I think she was seen by almost 20 different doctors and specialists within the first 48 hours of arriving. We stayed by her side for two weeks as numerous tests were preformed. Many of her tests came back healthy and normal. The MRI of her brain did not.

The MRI showed areas of low myelination in her cerebellum and brainstem and throughout her cerebrum. The docs wanted to do additional tests including muscle and skin biopsies- which were conducted and sent away for testing (no results yet).

We have been told that this is likely a brain disease caused by a genetic mutation. That there are no conventional treatments or surgery options. That it is likely degenerative and palliative. This means they expect her to get worse and die. We have not been given a timeline nor do we know how this may progress as we do not have a diagnosis.

On February 14,2010 we brought Anaya home to our place outside Nelson BC to nuture her, love her, and look for Alternative Therapies that may help her condition.

We believe that we can help her to remyelinate her nuerons and live a productive happy life!