Raising a Sensitive Child

Nourishing Body, Mind and Spirit


No more prophylactic antibiotic!!!!

Moses had a consultation with his new infectious diseases specialist. They  cultured Moses’ MRSA infection and it is resistant to Doxycycline, so we can stop Doxycycline. It’s as simple as that!  I’m so happy!!!!  Moses has been on a prophylactic  antibiotic since he was 4 years old. That’s six full years / more than half of his life of taking a prophylatic antibiotic. Every single day. It’s an answered prayer to get him off if it. Thank goodness!!!!

Given that Moses has been getting recurrent abscesses in the last month (aka MRSA infections), I could have told you that Doxycycline wasn’t helping (and his prophylactic antibiotic before that [Keflex] didn’t help either). I am so happy, happy, happy to get him of this medication. It also caused staining of his teeth, so not only did it create havoc on his gut flora, it also caused aesthetic issues.

I’m a bit worried that his immunologist will want to re-start him on a different prophylactic antibiotic (since just about all individuals with Moses’ diagnosis are on a prophylactic antibiotic), but for now, starting tomorrow, we have the blessing of at least one physician to stop the antibiotics. Woot woot! May he continue to have the blessings of his physicians to remain off of the antibiotics and give his system time to heal. (Or may DH be on board with keeping him off of antibiotics regardless of what the doctors say).

By the way, we have been using a daily probiotic – perhaps now the probiotic will be able to do its job.

More reading

  • Making peace with prophylactic antibiotic in the first place (read here).
  • Stopping and restarting prophylactic antibiotic in August 2014. Read here.
  • Thoughts on starting Doxycyline.

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Our IVIG experiences

Moses had his first IVIG infusion on November 23, 2016. My plan is to keep track of all of his IVIG experiences in this post for easy tracking.

This last week was a crazy one for us. We moved homes for the second time in three months on Nov 19th, and then four days later, Moses had his first IVIG infusion. I was grief-stricken leading up to his first infusion for reasons that I detailed in a previous blog post. I’ve also spent a lot of time reading up on IVIG infusions, including potential side effects, etc. so I was worried about the procedure. I was also concerned about making the procedure as easy (and painfree) as possible for Moses.

His nurse and others with experience with receiving IVIG infusions recommended keeping Moses hydrated so that his veins would be full, and also keeping him warm. Some individuals take pre-meds to help them tolerate the infusions better (like Benadryl, Tylenol, gravol or other anti-nausea medications). We didn’t bother with any pre-meds since we wanted to see how he if he needed it. We had Emla cream handy, but his nurse told us that they preferred not to use it because the Emla cream sometimes makes it harder to insert the IV because it causes veins to hide.

For the two weeks before his infusion, we kept reminding him to drink more water than he typically drinks. We also made sure that he was warm, and wore mitts to his appointment, and when he got to the hospital, they wrapped his arms with a warm blanket. Before he left for his appointment, I put Balance essential oil blend on his hands because it helps oxygenate blood and I know of some RNs that use Balance to help veins to pop out before IV insertion or before patients give blood. Some people use clove essential oil as a natural analgesic (I use it before I get any blood work), but clove is quite stinky and technically the hospital is a scent-free zone, so I didn’t use it. Thankfully, the nurse had no problem at all finding a good IV insertion location and they got the IV in on the first try. Moses was a trooper and didn’t even use any Emla cream. Whew! So thankful and relieved that it wasn’t a traumatic experience for him (as it has been in the past).

They used IGIVnex (10% Gamunex 20 g; by the way, AJ’s blood type is B+). The immunoglobulins came in a clear bottle and was clear in colour. They infused it over 6 hours because the longer the infusion takes, the lower the probability of side effects like nausea or headaches. Moses tolerated it really well. He didn’t really have any side effects, except for some slight nausea later that evening, and I rubbed a digestion essential oil blend on his belly, which always helps him when he has any belly upsets. I’m so happy and relieved that it went well. Next time, they will try infusing it over 4 hours. Hopefully, it will go just as well. The plan now is for Moses to receive IVIG infusions every 4 weeks, indefinitely. (DH and I will assess how Moses does and see, but the immunologist’s plan is that this is part of his course of treatment now).

Even though the infusion was 6 hours, Moses was at the hospital for an additional couple of hours because he saw the surgery team and they were planning on draining one or two abscesses that he had that were ready for drainage. They even had him fast for 6 hours, in case they were going to do a procedure, but then after all of that waiting a surgical emergency came up and they couldn’t fit him in. It’s now four days later, and those abscesses haven’t resolved themselves, so I will need to call the surgeon tomorrow to see if she can fit him in sometime this week. Goodness – we so want to get off of this abscess train. It’s hard on the family, and of course, especially hard for Moses. The hope is that the IVIG will decrease the frequencies of abscesses. May it be so.

Moses says that he hasn’t felt any different since the IVIG infusion, but he felt well enough to play hockey the day after his infusion, so that was a good sign. He said that he felt more tired while skating, but he still scored a couple of goals during the practice game. And, today, we did a 4 km hike at Lake Louise and he did just fine. So proud of my boy and thankful that his first IVIG experience was a positive one overall. May they all be so.

December 21, 2016 (2nd infusion)

On Dec 21st, Moses had his second IVIG infusion. He had a difficult IV start, but they were able to get the IV started at a second site. Because they started the IV later, they sped up his infusion (~3 hours; the first infusion was 6 hours), which was probably too fast because later that evening, he vomited twice and had a nasty headache. Poor boy.

They thought he had a difficult IV start because he wasn’t drinking enough. Our son generally doesn’t drink enough and no matter how much we encourage him to drink more, he doesn’t remember to drink unless we put a glass in front of him to drink. ugh.

He slept in the next morning and I kept him home with me the next day

A couple of days later, he developed a double ear infection and a viral chest infection (infections that he generally doesn’t get). Read more here.

January 20, 2017 (3rd infusion)

On Friday, January 20th, AJ was scheduled for his third IVIG infusion. They were able to get the IV inserted on the first try and AJ was a real trooper during it (closing his eyes and breathing through it), with the support of a Child Life Specialist. But then he freaked out when he realized that the nurse was going to flush some saline solution through the IV because the flushing caused him pain when they tried to flush on the Wed and Thursday of this week. And he completely lost it (screaming and kicking and thrashing about), and they lost the IV site. They called the expert IV specialists, but he was so anxious and in such a state that they couldn’t even try to insert the IV. One of the nurses remarked that it would take 3 grown men to hold AJ down for the IV insertion and they couldn’t do it. So then his immunologist was called in for a consultation and he explained to AJ why he thought the IVIG would help him (since he’s seen that it’s helped others with his diagnosis), but it might take 6 months for his body to get used to the infusions and for us to see a difference.

AJ agreed to the IV if they sedated him for it, so they planned to give him Madazalam (conscious sedation), but it took a lot of time for pharmacy to prepare the Madazalam, and we waited, waited and waited. We arrived at the hospital at 10 am to allow more time for the infusion (since last time, AJ had a bad reaction to the IVIG because of the fast infusion). And, unfortunately because of AJ’s anxiety, they couldn’t even get the IV in to start the infusion until 2:30 pm, and they did a 4 hour infusion. We were at the hospital for 10 hours for a 4 hour infusion.

A couple of days later, he was sick (nauseous, achy, headachy, low energy). hmmm….

February 6, 2017 (4th IVIG)

On Feb 6th, AJ had two more abscesses drained (right armpit and another area). As he always does, he came out from the anaesthesia with “emergence delirium”. Screaming, kicking, angry and itchy. Because he had an IV already inserted from the surgery, his immunologist decided that it would be a good time for him to receive IVIG (10 days early; since last time was such an ordeal), but AJ was so mad because he just wanted to go home and he was so sick of being in the hospital. Even though he already had the IV inserted, he was upset about the flushing, so they still had to give him Midazolam in order to calm him down enough for them to get the IVIG infusion started.  It took 4 nurses (3 to hold him down and 1 to squirt the 2 syringes of Midazolam into his mouth). He screamed things like, “I hate my life and everything in my life!” [Things that parents wish they never have to hear their children say in their lifetime]. They infused it over 4 hours from 4 pm to 8 pm, so it was a long day, since we got to the hospital at 9:45 am, and didn’t leave the hospital until 9 pm at night.

February 22, 2017 

I have noticed that AJ’s skin has been healthier (less rashes / less broken out) in the last month. DH is convinced it’s the IVIG infusions. The infusions haven’t yet decreased the frequency of abscesses, but this is a good first step.

March 1, 2017 (5th IVIG)

On March 1, 2017, AJ had his 5th IVIG infusion, 3.5 weeks after his last infusion (since he already had an IV inserted while under general anaesthesia because he had 2 more abscess drained), and he didn’t need additional sedation in order to receive the infusion.  Amazing progress!  The infusion was given over a 3 hour period, and AJ didn’t have any negative reactions to the infusion. He stayed home from school the next day to rest.

March 29, 2017 (6th IVIG)

On March 29, 2017, a Child Life Specialist used a hypnotherapy technique with him (Magic Glove technique) to help with his pain / fear management related to the IV insertion and also the flushing. It seemed to be effective (it decreased the sensation in one arm to zero and there was a 50% decrease in sensation in the other arm), but he still wanted Midazolam for the IV insertion. He didn’t even want them to try to insert the IV without the Midazolam, and since his medical team uses a patient-centred approach, they listened to his request and ordered Midazolam for him. Because it took awhile to order the medication and then the IVIG product, even though we arrived at the hospital at 9 am, the infusion wasn’t started until noon. It was a long day and we were there until 4 pm, despite the fact that it was a short (3 hour) infusion.

Nonetheless, it was a relatively stress-free day. AJ tolerated the infusion fine.

We are quite delighted that it feels like AJ’s new treatment (monthly IVIG infusions and daily Septra) has decreased the occurrence of abscesses. Typically, AJ has an abscess develop every week, and it’s currently 4 weeks since his last abscess drainage, and the one abscess that developed drained on its own. We are so thankful!!! May these treatments continue to be effective.

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Going down the path of IVIG

So….  we met Moses’ new immunologist. New because, as many of you know, we recently moved across the country back to the city where Moses was born. We spent Thursday at the children’s hospital, meeting the team and getting blood work done. They collected 15 vials of blood from Moses. Goodness!

I’ve been having a hard time emotionally over the last couple of days. I’ve been grieving and sad. Nothing rocks my world like spending the day at the hospital and going through Moses’ complicated medical history. Again. The appointment was all the more difficult because Moses currently has 7 abscesses in three places, which means that the prophylactic antibiotic that Moses is on (Doxycycline) isn’t doing its job. Ugh.

His immunologist recommended a couple of changes to Moses’ treatment. He doesn’t want him going on and off his antifungal (Diflucan); he wants him to be on it all the time. It’s a long story, but 4 years ago, Moses’ immunologist was open to Moses stopping Diflucan to see how he does (since Diflucan can be hard on the liver). Since then, Moses is probably on Diflucan about half of the time – 2 months on it and 2 months off it. He goes back on it when he has a fungal flare up (typically thrush) or the corners of his lips are badly cracked. He’s back on it right now.

His immunologist also highly recommends that Moses receive monthly IVIG infusions, which means spending a day at the hospital once a month to receive a blood product made up of immunoglobulins from 1,000 to 10,000 people. His immunologist in our last city had recommended it too, but didn’t strongly push it and our family wasn’t ready to go this route. To me, accepting this treatment feels like admitting that, yes, my son has a difficult-to-treat immunodeficiency (which, of course, he does, but I try as hard as I can to ignore that fact) and he needs an extraordinary intervention to be well. It means a monthly appointment at the hospital, when my son needs to be hooked up to an IV.  It means one day a month of missed school.  It means fitting in yet another appointment, while DH and I are both trying to manage fulltime jobs and responsibilities. It feels like a whole lot. And of course, there’s risks involved in receiving blood products. And I even feel some guilt about Moses needing immunoglobulins from so many people to be well.

I’ve known for a long time that approximately 50% of individuals with hyper IgE receive monthly IVIG infusions or weekly subcutaneous IVIG therapy that can be administered at home. Prior to this, we weren’t interested in going this route for the above reasons, and we also didn’t think he was ill enough to warrant this treatment. Also, prior to this, no one seemed very confident that the IVIG would help reduce the occurrences of abscesses. We knew that it could help reduce the occurrence of lung infections (which, thank goodness, Moses hasn’t had for awhile), but would it help with abscesses?

In any case, something has changed and my gut is now telling me, “Say yes to the IVIG – it will help”. And so, we are saying yes. But that doesn’t mean that I can’t grieve. I’m writing this blog post now because it helps me to process and give voice to what I’m feeling. So these feelings can pass, and we can go back to living our very full lives.

I just took a break from writing and dropped Moses off at his friend’s house. He mentioned to his friend’s mom about how he will be needing monthly IVIG infusions. She commented, “But you are feeling well and your energy is good…” Well, yes, that’s true. He looks healthy, well and strong. His main symptoms right now are abscesses, and they are troublesome because a) they can be painful, b) they can burst at anytime if they get to be a certain stage (e.g., he missed swimming today because he was afraid that one of them would burst in the pool) , c) they sometimes need surgical intervention, and d) they sometimes interfere with activities (for example, he missed both of his wrestling practices this week because he wasn’t feeling well enough to participate).

In any case, her comment reminded me that overall, Moses is doing so well. He is. We just want these abscesses to stop. We hope that the IVIG will help his body to fight the infections that cause the abscesses. May it be so.

More reading about hyper IgE syndrome and IVIG

  • Wakim et al. (1998) found that IVIG was of no clear clinical benefit in 9 patients, including one with hyper IgE syndrome , and did not significantly decrease IgE levels, IgE synthesis, or other measures of immunologic function.
  • Krassilnikova et al. (2007) found that IVIG decreased the frequency of infections for an individual with hyper IgE syndrome.
  • Bilora et al. (2000) found that “A moderate dose of IVIG resolved the clinical-radiological signs of the S. aureus bronchopneumonia and improved cytologic and biohumoral parameters,” and represented a useful treatment for pneumonia for individuals with hyper IgE syndrome.
  • “Patients with the hyper-IgE syndrome usually have normal serum IgG, IgM, and IgA levels, but some have been reported to have various defects in antibody responses. These include poor anamnestic antibody responses to booster immunization with
    FX174, diphtheria and tetanus toxoids, and pneumococcal and Haemophilus
    influenzae vaccines, as well as poor antibody and cell-mediated responses to neoantigens, such as keyhole limpet hemocyanin. There is significant phenotypic variation in the severity of pulmonary infections that is not necessarily predicted by deficits in antigen-specific antibody responses. Despite this, some patients with hyper-IgE syndromes with recurrent respiratory infections might
    benefit from IgG replacement therapy.”- Orange et al. 2006
  • This scientific presentation, “What to do when nothing can be done?” mentions IVIG as the most frequently used therapy for individuals with hyper IgE syndrome (besides prophylactic antibiotics and antifungals).

General articles about IVIG


A year in review – 2015

2015 was an amazing year for the family for so many reasons.

The highlight of our year was definitely when Moses’ wish to meet the Vancouver Canucks was granted by Make-a-wish in April!

Sony camera 072

Moses with Daniel Sedein

Overall, this has been Moses’ healthiest year and our whole family has had a more “normal life”.

That said, this year hasn’t been without its challenges.

  • Moses developed pneumonia in April, immediately after meeting the Canucks.
  • He had a severe allergic reaction on his 9th birthday in May.
  • He spent one night in the hospital in November, after having general anaesthesia to have some abscesses drained.
  • Overall, abscesses continue to be an issue. He developed a total of 53 abscesses in 2015. On the positive side of things, most of the abscesses either spontaneously drained or otherwise disappeared on their own. His surgeon drained 7 of them (one was a minor incision and 6 needed general anaesthesia on two occasions), and he currently has 4 that are unresolved.

For context, we consider this a better year since in 2014:

  • Moses spent 3 days in the hospital in January getting a dozen intra-abdominal abscesses drained, and 7 days in the hospital in May with a UTI infection.
  • And, in 2014, he developed 67 abscesses between the end of March and the end of the year: 41 abscesses that have drained spontaneously, 17 that needed surgical intervention (2 general anesthesia for 11 of them, and 6 under local), 9 that disappeared on their own.

In October 2014, we started back with Heilkunst homeopathy after a 2 year break, and I really feel that made a difference in Moses’ health. In April 2015, we switched to a new Heilkunst practitioner and I have been very pleased with Moses’ progress with our new practitioner. The healing reactions have been a lot milder and we have received great support from her. I am so pleased.

Moses’ main symptoms are the recurrent abscesses, but as I mentioned, this year, he developed fewer abscesses and more of them resolved on their own. Thankfully, Moses also has a surgeon who has really worked with the family to minimize hospitalizations and has not pushed for IV antibiotics (unlike some of Moses’ other doctors in the past). We feel so blessed.

I’m a bit anxious because Moses’ immunologist has recently suggested a new prophylactic antibiotic to help with the recurrent abscesses (you can read more about that here).

In addition to Heilkunst treatment and monthly sessions with a chiropractor, who does cranialsacral therapy on Moses, we have continued to receive karmic healing sessions with a healer in California. I’ve been trying to minimize the number of sessions because her sessions are ridiculously expensive (painfully expensive) and the weak Canadian dollar isn’t helping. In 2015, Moses had three sessions with her, I had two and DH had one. I used to blog about our sessions but her work is really out there, so recently, I haven’t been openly sharing about those sessions. I have another karmic healing session booked for Moses in early January. I do still feel like her work is relevant to our family’s healing journey, and I practice her grounding exercises several times a week.

So, that’s where we are right now. As I mentioned, overall, Moses has had a very healthy year. He is vibrant and strong. He is playing hockey!!!  I feel that our family is definitely healing together.

I feel so blessed and am so pleased. May 2016 be an even healthier year for our family. So be it, and it is so.

Christmas 2015 080

Happy holidays from our family to yours

* I didn’t write a year in review in 2014, but this was one of my last blog posts in 2014, which summarizes where we were in our healing journey a year ago.

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I haven’t quite been myself lately because I’ve been worried / thinking about a recommendation for a new prophylactic antibiotic that Moses’ immunologist has suggested.

Moses has been on a prophylactic antibiotic (Keflex) since he was four years old. That means that he’s been on a twice daily antibiotic for five years. Goodness.

I have mostly come to accept it because, well, it’s what we are doing, and it doesn’t make sense for me to inwardly fight something that we are giving to our son everyday (read more about why/how I came to terms with it here). The compromise that DH and I have is that we are following some of the advice of the doctors, and we are also treating Moses with other therapies (like Heilkunst).

My hope is to eventually get him off of his prophylactic antibiotic, but I know that I won’t get buy-in from DH during the winter (cold/flu season), so my only hope is during the summer. This last summer, Moses’ eczema seemed extra flared up, so there wasn’t a good time to take him off of it. We actually have tried on three other occasions to stop the antibiotic, and twice, he got sick afterwards and another time, his eczema flared up, so we started him back on it.

In any case, my plan is to eventually get him off of his prophylactic, and not to start a new one. During Moses’ last appointment with his immunologist, she mentioned that she has been talking to a Job’s syndrome specialist in the US and his infectious diseases specialist, and they think it would be worth starting him on Doxycycline because it might give him protection from the recurrent abscesses that he has getting.

The downside to Doxycycline (besides the fact that it’s an antibiotic that is used to treat illnesses such as malaria [!!]) is that is causes permanent yellow / brown staining of teeth. As a result, it’s not recommended for children under 8 years old. Moses is 9.5 years old, so he’s not under 8 years old, but all of his adult teeth haven’t yet come in, plus Moses’ teeth are not healthy to begin with (likely because he’s been on a twice daily prophylactic antibiotic since he was 4 years old!!). The teeth discoloration that is caused by Doxycycline is permanent because the damage occurs while calcification of the teeth are occurring and teeth remodeling and calcium exchange do not occur after calcification is completed (Source).  I have no interest in putting Moses on a long-term medication that I don’t even want him to be on in the first place, but especially one that can cause permanent staining of his teeth. Call me superficial, but that’s a deal-breaker to me.

Anyhoo – thankfully, DH doesn’t seem to be keen on changing Moses’ antibiotic either, but all of these discussions are stirring up anxiety in me.

Interestingly, our Heilkunstler intuited that Doxycycline would be the “lesser of the two evils” between the two antibiotics. hmmm.. That gives me food for thought.

I scheduled an appointment with Moses’ naturopath so we can discuss my concerns. I love our naturopath and she’s like a counsellor to me. I love her wisdom, intuition and how she bridges the gap between traditional medicine and alternative treatments. She told me that she didn’t intuit that Doxycycline would be negative for Moses, but when she read up on it, she didn’t feel as good about it (i.e., the incidence of staining for long-term treatment with doxycycline is 100%). She did pointed out something that I noticed as well – that some doctors recommend waiting until children are at least 12 before starting this antibiotic (i.e., waiting until all of their teeth have erupted). She did recommend that we consult with Moses’ dentist to see what she has to say, which we plan to do.

Note that even after the permanent teeth are in, Doxycycline still causes staining of teeth that can be reversed by abrasive scrubbing at dental check-ups. Oh boy.

Update – January 29, 2016

We consulted with Moses dentist and she said that since Moses’ teeth are formed under his gums, there is no risk of permanent staining (with the exception of his wisdom teeth, which are not yet formed).

We consulted with his infectious diseases specialist, who we love and trust about starting the medication. She chatted with DH about it for 20 minutes on the phone and put some of DH’s concerns to rest.

Our chiropractor muscle-tested that Doxycycline would be “better” for Moses than the current prophylactic antibiotic that he is on.

I asked another individual with Job’s syndrome about her experiences with being on Doxycycline and she said that she thinks that it’s help to reduce some of her infections.

Given that Moses had a brutal January (i.e., he needed general anaesthesia twice within 12 days to take care of abscesses), we are open to trying this new antibiotic.

I am still not happy about him being on a prophylactic antibiotic, but given the compromises that DH and I navigate in Moses’ treatment, I’m come to terms with starting Doxycycline and we’ll see how he does. I’ve made it clear to DH that I eventually want Moses off of any prophylactic antibiotics, but I don’t have buy-in from him yet….

February 9, 2016

Started Moses on Doxycycline today. He’s taking a half tablet daily (50 mg, which is a prophylactic dose) – for his weight (30 kg, a prophylactic dose would be 60 mg, according to his infectious disease specialist [i.e., 2 mg/kg once a day to a maximum of 100 mg], but a half tablet is easier to dose than 3/5 of a tablet). According to this document, a therapeutic dose for his weight would be 75 mg twice a day (i.e., 150 mg per day, so he is only getting 1/3 of a therapeutic dose. This makes me feel better about him being on it. He needs to take it away from any supplements or calcium, otherwise, the medicine will not be effective. Wish us luck.

December 7, 2016

We recently moved to a new city and Moses had a consultation with his new infectious diseases specialist. They have cultured Moses’ MRSA infection and it is resistant to Doxycycline, so we can stop Doxycycline. I’m so happy!!!!  Moses has been on a prophylactic  antibiotic since he was 4 years old. That’s six full years of taking a prophylatic antibiotic. It’s an answered prayer to get him off if it. Thank goodness!!!!

More reading on doxycycline

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The impact of a wish come true…

DH recently wrote this email to Make-a-Wish:

“Just wanted to give you an update on how Moses been doing since the big wish. We’ve had so many people tell us how healthy looking and confident Moses has been since his Vancouver experience and we can see it ourselves. He still has his health issues, Job’s Syndrome is still a part of him, but his health issues seem to be in the background and do not define him.

I used to looked at him and see a sick child with a huge spirit that fought every day to live a “normal” life. Now I see independent kid who is wise beyond his years and capable of doing anything he sets his mind to.

Whether you know it or not, the work you do has an immeasurable impact and is more effective than any medication. You’ve made a huge difference in our family’s lives and we just wanted to say thank you.

p.s. Moses registered for hockey this year for the first time. A year ago we would have never considered it but he’s convinced us he’s ready for it.”

Read more about Moses’ wish here.


The impact of a wish…

Did you know…

According to the results of a 2011 – 2013 Wish Impact Study that involved interviewing wish parents, past wish kids, health professionals, and volunteers, a wish come true empowers children with life-threatening medical conditions to fight harder against their illnesses.

When wish kids are granted a wish, they get more than just a great experience for a day, two days, or a week. That experience improves the quality of life for them and their entire family.

Health professionals treating them say the wish experience is an important adjunct to medical treatment, and they observe their patients feel better and comply more readily with treatment protocols when they experience their wish come true. And the community volunteers who grant wishes say the wish granting process heightens both their ability to see the best in others, and their commitment to actively help more people in need.

Adult former wish kids say the wish experience made them feel better socially and emotionally, improved their health and strength, gave them more confidence and the will to pursue more challenging life goals, made them more compassionate and philanthropic, and even helped to save their lives.

Find out more about the Wish Impact Study here.


Allergic reaction

Today is Moses’ 9th birthday. He had a great celebration with his friends playing ball hockey yesterday and we celebrated today with a family dinner at his Grammie’s. We eat at his Grammie’s just about every Sunday night and she’s very careful at making sure that all of the food that she serves is allergy-friendly.

But…. tonight, he had an allergic reaction to something. We have no idea what it was. I suspect that something was cross-contaminated with milk.  Maybe his allergy-friendly Rice Dream was cross-contaminated by ice cream at some point.  I think that is the most likely culprit.

Within 30 minutes of eating, he indicated that he wasn’t feeling well (his mouth was tingly). We gave him 15 mL of Benadryl. He then rinsed his mouth out with water (which, for milder reactions, seems to help).

He seemed to be having difficulty breathing, so he had his Ventolin puffer.

Things started to escalate, so we left his Grammie’s right away. He spit up on the stairs before we left. We didn’t even put his jacket or shoes on. I grabbed his medicine bag and I didn’t even put my shoes on properly. I sat in the back seat with him, in case he needed his epi-pen. We had the foresight to bring a bowl for him to throw up in.

He tried to make himself vomit into the bowl (to get the offending food out of his system). He just kept bringing up mucous. So. Much. Mucous.

His stomach was hurting and he had a “bump” forming on his throat. I had the epi-pen out and was that close to using it, but we were soon close to the hospital and his airways were still open, so we delayed.

I parked the car while DH carried him into the hospital. By this time, he was drooling uncontrollably and talking nonsense (a very typical reaction to when he had Midazolam, but he didn’t have Midazolam, so it was very odd). I’ve never seen an allergic reaction that looked like this.

When I found him in the observation room in the ER, he was still drooling uncontrollably – a lot of mucous / drool. His stomach was still hurting him and so was his throat.  The doctors didn’t have any idea why he was drooling like he was. It was a very weird reaction.

Within an hour, the reaction passed. We don’t know exactly what he had an allergic reaction to, but it was definitely an allergic reaction to something.

They watched him for another 30 minutes, and then let us head home, reminding us that sometimes individuals have a secondary allergic reaction within four hours of the first reaction, so they advised us to keep him awake to monitor him.

At home, I gave him all of the homeopathic remedies that he is currently taking to help bring him to homeostatis. Within 5 minutes of taking the remedies, he complained of stomach pains and within a couple of minutes after that, he vomited everything in his stomach. All over his (carpeted) bedroom floor. He vomited four times, vacating his stomach completely.

We were so happy that the offending food was out of his system and he told us that he was starting to feel better, but was still feeling a “7”, with “10” being really sick and “1” being well.

Over the next hour, he was hungry again and he had some watermelon and a banana with peanutbutter. (A great sign that he wanted to eat. We knew that the peanutbutter was “heavy”, but he wanted something to fill him up after emptying his stomach). He was still complaining that his throat was hurting on and off, but it was 11:30 pm by now and way past his bedtime. So DH put him to bed and I will plan to sleep with him tonight to make sure that all is okay through the night.

I’m a tired mama now, but wanted to get this off my chest before I go to bed.

Today is his 9th birthday. As we walked into the ER tonight, I noticed that they had a sign up and it said that they treat children up until their 18th birthday. It occurred to me that we have made it to exactly the half-way point of his childhood / adolescence. It feels bittersweet today.

My poor boy had an allergic reaction to his birthday dinner.

It was a brutiful (brutal + beautiful) day.

So glad that he is sleeping in his own bed tonight and tomorrow is a holiday, so we can all sleep in and rest.

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One year

It’s officially been over a year that Moses has needed to be admitted to a hospital.

In the last 12 months, there have been some close calls (as recently as last month while we were in Vancouver and even last week).  But thankfully, in each case, Moses avoided admission and we were able to treat him at home. And in each case, Moses’ body fought off the infection(s) and he came out of each one physically and emotionally healthier.

I am feeling so optimistic that we are on the right track for him. I am so happy that we re-started Heilkunst in October 2014 and I am loving our new practitioner. I also feel that the karmic healer whom we periodically consult with has been an important part of Moses healing.

I am so incredibly thankful!

I’m doing a happy dance right now!

p.s. Moses is turning 9 years old on Sunday, and this is only the second year ever when Moses has not needed to be admitted to a hospital. The first was when he was 3 years old. During that one year period, Moses not only wasn’t admitted to a hospital, but didn’t even have any ER visits.  Now that I think of it, everything fell apart shortly thereafter when he was vaccinated with MMR in Sept 2009 (because he was “doing so well”, his doctors felt like he was ready to get caught up in vaccinations). And then he started a slippery slope of illness, infections, night terrors and dramatic change in behaviour.  Thankfully in June 2010, we started Heilkunst, which has brought him home to health and wellness. Thank God!

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Great news about the pneumococcal vaccination

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!!!