Nourishing Body, Mind and Spirit

This week we started using HydraSense to clear out Moses’ nasal passages. It’s kind of like using a neti-pot. DH is a big fan of “neti”-ing. He typically purchases a store brand version to do so. About a decade ago, I used a neti-pot regularly, but haven’t done so for a long time.

We’re using the Medium Stream Daily Nasal Care.  It can be  used for children as young as 2 years old, so it’s very, very gentle.

It contains: isotonic, undiluted, sterile, 100% natural-source desalinated sea water, with more than 70 trace elements and minerals naturally-occurring in sea water, and does not contain preservatives.

Moses was apprehensive about trying it at first, but now, he really loves it! I think he probably can feel a real difference in getting some of the allergens out of his nostrils.

We started using it because it seemed like Moses was starting to get flu-like symptoms and an increase in congestion (nasal and chest). Possibly because of the start of school? His asthma was totally under control all summer (he rarely needed his Ventolin puffer) and now in the last week, he’s been needing his Ventolin puffer 6+ times a day.  Moses is attending a newly built school and there is still a lot of construction going on adjacent to the school and an addition to the gym, so I wonder if he’s reacting to construction dust and also off-gassing from the new construction….

In any case, I feel that the HydraSense is helping to bring relief to his nasal congestion. Yesterday, he asked to use it three times. As soon as he arrived home from school, he asked to use it, so that’s a great sign that it’s helping. After the second round of using it after school, he was feeling much better.

I wish we had known about HydraSense earlier because DH and I have been talking for years about how great it would be if we could teach Moses how to neti, but we didn’t think he would be up to the more “intense” version of neti-ing that DH does.

Benefits of using using HydraSense (according to their website):

  • Cleanses excessive mucus accumulation in congested nasal cavities and passages.
  • Reduces excessive dryness due to dust or dry air.
  • Reduces the duration of cold symptoms, the occurrence of complications such as sinusitis, medication use and the number of sick days.

They also have special formulations for allergies and congestion relief.

I think we’ll continue to use HydraSense (as opposed to using a neti-pot) because it’s simple to use, easy to control the flow and very gentle.

 

The healing round table

As Lissa Rankin, MD, puts it…

“If you’re a patient who has incorporated complementary and alternative medicine into your health care regimen, you may have bumped up against some resistance on both sides of the healing fence. Your doctor may think your homeopath is a total quack selling snake oil, and your homeopath may think your doctor is a big thug, thwacking his pharmaceutical hammer at anything that moves.

Your doctor may insist that you stop all of your herbs, cancel your acupuncture appointment, and ditch the flower essences that were lovingly prepared for you.

On the flip side, your complementary and alternative medicine providers may poo poo traditional Western treatments that you choose to pursue.”

As you know, I have experienced both sides of this (i.e., doctors who have resistance to alternative medicines, and alternative medicine practitioners who do not support traditional western treatments). It has been soooooooo challenging trying to navigate the differing opinions and try to make wise choices on how to heal Moses when I can’t openly talk about the alternative medicines that we are using with our medical doctors, and also when our alternative health care practitioners make me feel guilty for some of our medical choices (like having Moses on a prophylatic antibiotic).

It’s like a breath of fresh air when we find medical doctors who are open minded enough to hear about essential oils, or alternative health care practitioners who do not vilify the medical system. This is why I love our naturopathic doctor who bridges the worlds or some of our other alternative health care practitioners who feel that the allopathic model and the natural healing model both have their place.

A deep inner part of me has whispered to me all along that Moses needs an integrative approach, and truthfully, DH and I have between us forged an integrative approach in Moses’ care. As you know, I have been a strong voice for natural healing and alternative approaches and DH has been a strong voice for the allopathic (traditional medical model) for healing, but I have found that as I heal my own relationship with the medical system and have tried to forgive the medical system, DH and I have been able to meet more readily in the middle.

As I have healed my own relationship with the medical health care system, I have found my relationship with the medical system has changed.  We now have more mutual respect on all sides. As many of my friends have reminded me, we all have the same vision for Moses – a vision of healing.

In my vision, there is no hierarchy between doctors and other health care providers, whether they be nurses, scrub techs, or alternative health care providers like naturopaths, Chinese medicine doctors, acupuncturists, homeopaths, Reiki healers, herbalists, or faith healers. Instead, the patient is in charge of choosing who sits at the “healing round table,” where everyone is equal and the person with the seat of honor – and the most power – is the patient.

In my vision, petty competitions, dismissive name-calling, and contradictory messages delivered to patients are replaced with a sense of mutual respect for what everyone brings to the table, collaboration, and a commitment to the highest good for the patient, free of ego or judgment.” – Lissa Rankin, MD

Yes, yes, yes, yes, yes!!!

I love Lissa Rankin and I love the idea of a healing round table. My dear friend, Cheryl, mentioned this concept to to me a few weeks ago and I have found this idea of a healing round table to be so healing and so loving. I’d encourage you to read more about Lissa Rankin’s vision to heal health care here and more about the idea of a healing round table here.

I love the idea of all practitioners being equal and the patient is in charge of choosing who sits at the healing round table.

Moses has quite an extensive healing round table and I have grown to love and appreciate all who have a seat at his table.

 

 

Some amazing news this week is that our allergist has been consulting with a doctor, who specializes in treating individuals with Moses’ diagnosis, and we specifically asked about her thoughts about vaccinating Moses with the pneumococcal vaccination (Pneumovax 23).

It’s been a source of stress because 1) Moses’ pediatrician is constantly trying to line up Moses’ next vaccination, 2)  DH would like to minimize Moses’ exposure to vaccinations, but has been interested in getting Moses vaccinated with Pneumovax, and 3) I don’t feel good about any additional vaccinations for so many reasons (read here and here), but mostly because of the following:

  • Moses’ marked decline in health (physically and emotionally) to the MMR vaccination,
  • vaccinations increase IgE levels (and Moses’ IgE levels are already sky high),
  • I know at least a few people with Moses’ diagnosis who have had serious negative reactions (requiring hospitalization) to the pneumococcal vaccination, and
  • recent blood work has indicated that Moses’ pneumococcal antibiodies are in the normal range (likely because of his history of pneumonia).

Our allergist asked us if we had any questions for the Job’s syndrome specialist and one of our questions was, “We are curious about whether she would recommend that Moses receive the pneumococcal vaccination keeping in mind that his pneumococcal antibodies are in the normal range and his previous negative response to the MMR vaccination. His last pneumonia was in November 2012 and it was a secondary infection developed when he was in the hospital with IV antibiotics for an MRSA infection.”

Happily, the specialist responded that she would NOT recommend that Moses be vaccinated with Pneumovax 23. Yay, yay, yay, yay, yay, yay, yay!!! This is because they have seen some severe reactions to Pneumovax (including those requiring hospitalization). That said, she still recommends the rest of the vaccinations (and even Prevnar – the pneumococcal vaccination for children [which I’m still not a fan of since it contains aluminum, which raises IgE levels), but at this point in time, DH has dropped the issue.

I’m feeling sooooooo relieved…..  So thankful!!!

All is well

Although mama worries about her boy, in the big scheme of things, all is well in his world.

Our sweet boy flying a kite

Our sweet boy flying a kite

Double COMT gene mutation?

A friend of mine wondered if Moses might have a double catechol-O-methyltransferase (COMT) gene mutation, and if he did, it might explain why he develops rashes when he takes supplements that contain ingredients such as Acetyl L Carnitine and Quercetin (i.e., supplements that increase glutathione production).

Her daughter has this gene mutation and can only handle very small doses of these supplements.  Most people need methyl donors (which are found in supplements that increase glutathione production) but if you have a double COMT gene mutation then they cause issues for the person.

Something for me to think about because I have wondered why Moses has such strong “healing reactions” to some of the supplements that I have tried with him (such as MaxGXL, Robert Keller’s original glutathione formula, and Alpha CRS).

My friend knows that her daughter has a double COMT gene mutation because she ordered a nutrigenomics genetic test for her daughter.  “This test has been the best thing by far we have done for our daughter and I am convinced it would be helpful for anyone having a variety of health challenges.  Through this test we have been able to implement the correct diet and supplements that she needs and eliminate all the things we were doing wrong that usually would be considered healthy for an individual without her mutations.  The test costs $499 and tests for 30 different genes, best money we ever spent.” Find out more here.

We haven’t ordered this test for Moses, but it’s yet another thing for us to “keep in our back pocket”.

On a similar note, my karmic healer also highly recommended someone who does great diagnostic work. Again yet another test that might uncover other avenues of healing for us to explore. I’m keeping this in our back pocket as well.

More reading:

I don’t know what changed in the ethers but something major must have changed because DH is open to restarting homeopathy. I’m so happy about this development. I have been thinking for a long, long, long time that we needed to restart homeopathy. I still feel that out of all of the many modalities of healing we have tried (and we have tried many) that homeopathy has been the most instrumental in Moses’ healing. I really feel that it helps to get at the energetic root of disease /illness.

If you are curious about our journey with homeopathy, I blogged about it quite extensively here. We started it when our son was 4 years old and continued until he was 6.5 years old. I really do feel that it helped with Moses’ overall health, vitality and emotional health, but when we started clearing the chronic miasms, I found that the healing reactions were sometimes so strong and de-stabilizing that I wanted to see what life would be like without homeopathy. We stopped our treatment at Syphilinum 200C in November 2012 (after Moses spent 12 days in the hospital with an MRSA infection that turned into pneumonia), so it’s now close to two years later.

Since November 2012, Moses has been doing great physically and emotionally. For the most part, most people can’t even tell that Moses has a health condition. Overall, for his diagnosis, he is doing exceptionally well. Remarkably well. I feel that it’s a testament to all of our hard work and so many things that we have tried along the way. But, as I indicated in my last blog post, the abscesses have gone out of control. In 2013, Moses had 34 surface abscesses and 12 intra-abdominal abscesses (which were awful). Between the end of March and early September of 2014, Moses has already had 48 surface abscesses.

blessing

I feel that Moses is stuck in one of the chronic miasms, and it’s manifesting in his body as repeated abscesses.

My plan is to consult with a new homeopath (another one trained in Heilkunst) as our former homeopath moved away, and also DH did not like our former homeopath. At all. I’m hoping that starting with someone new might help. I’ve heard great things about the homeopath who I plan to contact, and that she is gentle in her approach and also uses a pendulum to choose remedies (i.e., she fine-tunes the remedies based on her intuition).

As much as I’m happy about restarting homeopathy, I’m also really nervous about it as sometimes Moses’ healing reactions to the remedies were huge (like developing pneumonia), but I feel that we really need to try something new to shift us out of this current pattern. I’ll restart the Heilkunst treatment too as I always join Moses in whatever treatment he’s on. In the case of homeopathy, the healing of the child goes deeper when the parents also undertake the treatment (the same is also true for the karmic healing treatment – the whole family needs to participate to receive the full benefit of the treatment).

I believe that our new homeopath is currently on holidays, so we probably won’t get in to see her right away – it might not be until the end of September / October, but this is the direction we are thinking of moving.

In the meantime, we are still using medications, essential oils, having karmic healing sessions, seeing our energy healing chiropractor, practicing emotional freedom technique and generally trying to be a normal family and have some fun along the way. I’m going to make more of an effort to do my “grounding energy” practice that I learned from my karmic healer. I also have a session with our naturopath in a couple of weeks and Moses has a number of consultations with doctors over the next month (pediatrician, infectious disease specialist, surgeon, and Moses’ allergist is also starting to consult with HIES specialists at the National Institutes of Health [NIH]).

I’ll keep you posted as always.

Oh my goodness, it’s been a big week for my boy.

Today, he had 8 abscesses drained under general anesthesia (four under his right armpit, two under his left, one on his groin and even one on his scrotum). My poor boy.

I haven’t been blogging a lot of about Moses’ abscesses, but he’s had a steady stream of abscesses since he stopped Linezolid (the super antibiotic that he was on earlier this year).

So I don’t bore you to death with discussions about abscesses and also to keep my thoughts organized in one place, I’ve been keeping a record of all of the abscesses since the end of March in one post here. In the last 4.5 months, he’s had 28 abscesses that have drained spontaneously, 12 that needed surgical intervention, 5 that disappeared on their own  (that’s 45 in total). His body has been going crazy with abscesses.

After we started emotional freedom technique in July, I found that all of the abscesses were draining spontaneously (thank God!), so most of them were resolved painlessly, but it’s still disconcerting and has still involved lots of visits with the surgeon as he keeps track of what’s going on.  I am still finding a pattern of a multitude of abscesses popping out after I spend time with “spiritual friends”. This won’t make sense to any new readers, but it’s related to a pattern that that I’ve discovered with the help of a karmic healer. I’m terribly upset about the whole thing as I’ve basically become a hermit as I’ve tried to test out this theory, but I’ve been finding that the pattern is still very strong and also obvious.

Moses was close to abscess-free when we were in Calgary (he had one spontaneously drain on the plane ride to Calgary) and another spontaneously drain when we were in Calgary. Within a couple of days of arriving to Winnipeg, he developed 7 abscesses, and shortly after we got back home to NL, almost all of the abscesses resolved themselves. It was amazing to watch them all drain and/or disappear on their own. And then I went for a walk with a friend in the woods, and within a day, Moses had 3 huge abscesses and 2 weeks later, those 3 developed into the 8 that were drained by the surgeon today.

I feel beat up on so many levels and feel terribly sad about the whole thing. But, we have some things that we are going to try in the near future, so we’re not without hope.

Essential oils

I have a theory on why this latest round of abscesses didn’t drain on their own. I started putting essential oils directly on the abscesses (typically, I have just been applying them to the bottoms of his feet instead of on the abscesses directly), and I feel that in Moses’ case, it prevented the abscesses from bursting because they kept his skin intact.  Lesson learned: I will not be putting any oils on any active abscesses in the future.  I am, however, going to apply the oils on his armpits and his groin once the wound has healed. Someone sent me an essential oil protocol for MRSA that has been effective for others. I pray that it helps (and if it does, I’ll post the protocol).  I won’t put the oils on before the wounds heal because I have found that the oils help his skin to heal so fast that the abscesses often close up before they have completely drained.

Linezolid

His surgeon (who we love) has been talking for months about starting a 6 week round of Linezolid since when he was on the super antibiotic, he was essentially abscess-free. For my new readers, we had started Linezolid to help resolve some intra-abdominal abscesses that Moses had in November.

I have not been keen on re-starting Linezolid (it’s considered a “big gun / super antibiotic”). It’s very expensive (costs $6,000 for a 6 week course, which thankfully should be covered by my health insurance plan), but has the potential to affect liver function, which means that Moses will need bi-weekly blood work. And, we found that last time, within 2 weeks of stopping Linezolid, he started developing abscesses again. So it’s not a long-term solution, but his doctors all seem keen to re-start him on it. We will soon have a consultation with his infectious diseases specialist (who we love) and we’ll discuss this option and my concerns. If she is still keen, we will likely give this a go, as DH is on board to re-start Linezolid, and I don’t have any energy in me to left to fight this. (I’m keeping all of my energy to fight DH about vaccinating Moses with the pneumococcal vaccination – I need to choose my battles).

Karmic healing

I have a karmic healing session scheduled for Moses at the end of September. The last session was in June for all three of us, so it’s time for another session. I’ve been trying to minimize our sessions because her sessions are astronomically expensive, but I do feel that she does good work. I need to do a better job of practicing the energetic exercises that she recommends. I do feel that it helps, but unfortunately, I’ve gotten out of the habit of doing so. (I’ve been practicing more EFT lately).

Happily, DH is totally on board with the karmic healing sessions (I’ve been paying for them and he doesn’t know exactly how expensive they are). I really do feel that the work that she did has positively affected our family dynamics.

Dr. Schulze’s Herbs

As mentioned in this post, I have ordered some of Dr. Schulze’s herbs. DH is currently not on board with trying them, so I don’t know if we will actually use them, but at least we’ll have them on hand. I suspect I’ll receive them in 3 weeks or so (to save on shipping costs and custom fees, I shipped them to a friend in the states, who is shipping them to me). I might get DH to try them so I can get him on board before trying them with Moses. I also want to get our naturopath’s thoughts on them.

IVIG

One of my friends whose child has a form of HIES has mentioned the possibility of using IVIG, so DH and I are looking into it. My gut says no at the moment, but it’s worth finding out more.

Homeopathy

And last, but not least, DH is open to us re-starting homeopathy again. This is a HUGE development and is worthy of a separate blog post altogether, so I’ll share my thoughts about that in my next post (read more here).

So, all in all, I am feeling optimistic that we can shift out of the current “abscess world” that we have been living in. Will keep you posted as always. Please do keep us in your thoughts and prayers.

Fourth egg challenge fail

As my long-time readers know, Moses is allergic to eggs, and we have tried on a couple of occasions to “challenge” his egg allergy because his allergist felt that the best way to know if Moses is really allergic to eggs is to feed it to him. She has found that some of her patients are able to tolerate eggs in baked goods and she hoped that Moses might be one of those people.

A brief history of Moses’ experience with eggs:

  • When he was 2 years old, he had what we think was an “accidental exposure to eggs” (i.e., he accidentally ate a muffin that contained eggs) and he wound up in the hospital for four days with gastro-intestinal bleeding;
  • April 8, 2011 - he had a stomach ache after eating the equivalent of 1/30th of an egg in GF banana bread.
  • Sept 24, 2011 - he had a violent vomitting incident after eating the equivalent of 1/8 of an egg in a GF pancake.

Based on Moses’ previous experience with eggs, I didn’t feel good about the challenge, but we were open to trying it because it had been awhile (3 years) since we last tried, and it would have been so great to add eggs to Moses’ diet.

So, his allergist recommended that Moses have an official “egg challenge” at the hospital. We baked 12 GFCF blueberry muffins with 1 egg, which meant that every muffin contained 1/12th of an egg. The first “dose” was 1/32 of a muffin, which meant that it contained 1/384 of an egg.

Moses ate it up and thought it was delicious, but within one minute, he told me that his tongue was starting to swell and his throat was itchy. Oh oh!

It wound up being a terrible experience because the allergist wasn’t present and the nurses weren’t authorized to give Moses any medicine without the doctor’s authorization (she was in the hospital and available on call), but when my son is having the start of an anaphylactic reaction to a known allergen, there’s no time to spare. I actually delayed, while I waited to see how fast they could get “authorization” to give Moses medication, but Moses (understandably) started freaking out, so I grabbed our Benadryl and gave him some medicine. And then the nurses were upset because I didn’t follow proper procedure. Ugh! (Insert curse words here).

As much as I’m trying to “make peace” with the medical system, it’s stuff like this that drives me absolutely CRAZY!!! I was soooo angry.  So was Moses. Within 40 minutes of the Benadryl, Moses’ tongue went back to normal and he was fine, but today he is completely broken out with the worst rash that he has had in a long, long time.

Well, I guess the lesson is that Moses is really, really, really allergic to eggs. And we are not going to set up any other oral allergy challenges for any of his other allergens for a long, long, long, long time.

Immunological update

We received some great news about Moses’ recent blood work.  Over the years, we have really build a great rapport and mutual respect with all of Moses’ doctors and we have grown to love his allergist/immunologist and she us. She has said many times how amazed by how well Moses is doing, and she feels that it’s a reflection on all of the research that we do and she can see how well Moses is doing under our care. This was the same doctor who thought we were crazy when Moses was 3 years old because she thought we were under-medicating him. We have truly come full circle.

It’s been years since Moses’ last major immunological blood work (the last time was probably when he was diagnosed when he was 4 years old). To make a long story short, all of his blood work came back with great results. Everything came back normal (except for his IgE levels and eosinophil levels, which is to be expected based on his diagnosis). Liver function, lymphocyte function, auto-immune function, total protein levels, total T cells,  IgA, IgM and IgG are all normal. Many other markers were normal too. Yay, yay, and yay.

We were particularly pleased that Moses’ IgE levels are now at 18,044. Although his IgE levels are still through the roof (100 is considered normal, 2000 is considered “hyper”), DH and I happy that his IgE levels were lower than they had been when they were tested in Nov 2012 and 2013 (when it was measured at >20,000). Yay, yay, yay!!!

Other great news is that Moses has normal levels of antibodies for Pneumococcal (likely because he has had pneumonia on several occasions). I’m sooooo happy about this news. DH would like Moses to receive the Pneumococcal vaccination and I haven’t been supportive of the idea (read why here and here). We discussed the issue with his immunologist and I explained that Moses reacted negatively to the MMR vaccination and that we have talked to people with Moses’ diagnosis who had severe reactions to the Pneumococcal vaccination (i.e., immediately requiring hospitalization and IV antibiotics due to severe infections). His immunologist is going to research more about it and get back to us, but I felt that she was reasonable in her response (i.e., she wants to consult with some others who are more experienced with dealing with HIES patients before making a recommendation). In any case, this buys us more time, for which I am thankful.

Overall, it was a great day and we’re so pleased!

Vacation!

We had a great vacation in Calgary to visit the city where Moses was born and then to Winnipeg to visit my family. Highlights for Moses: seeing Grammie Rosie and Grandpa George, uncles, aunts, cousins and friends, lots of playdates, riding the luge at Canada’s Olympic Park, seeing the mountains for the first time in Banff, zoo, go-karting, amusement park, a trampoline park, Children’s museum and canoeing. Wow!

Highlights for me: visiting with so many dear friends and family, and especially visiting my mom and dad.

There’s really too many photos to share, but here are some of the highlights.

St. George's in the Pines in Banff, where DH and I were married in January 2006.

St. George’s in the Pines in Banff, where DH and I were married in January 2006.

 

Banff

Banff

 

Bow River

Bow River

 

Uncle Gregor and Auntie Janice

Uncle Gregor and Auntie Janice

 

Shelley Belly and me

Shelley Belly and me

Our Calgary family

So many new friends

Polar bear!

Polar bear!

Fun with cousins

Fun at the zoo

 

Fun with cousins

Fun with cousins at the Children’s museum

Me and my brothers

My brothers and me

My brothers and our families

My brothers and our families

Sharing a laugh with my niece

Sharing a laugh with my niece

Canoeing

Canoeing

Go-karting!

Go-karting!

 

Moses and Grandpa George and Grandma Rosie

Moses with Grandpa George and Grandma Rosie

Old friends

A very special reunion of friends with Cori and Stephanie

 

 

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