Monday, 29 July 2013


post vaccine rash, fever, and lethargy
Part of 22q11 syndrome is immune system deficiency. Isaac seems to have a thymus and a functioning immune system, though his labs are a bit on the low side. That said, he's only ever been sick one time aside from the few times we consented to vaccines.

After each vaccine he got really sick, for days. That's expected, I guess, for most kids. Except it isn't really. Holly gets really sick too and gets muscle cramping for weeks sometimes months at the vaccine site.

We vaccinate, but we do not follow the full schedule nor do we choose every vaccine available. This has been our choice before Isaac was born. We actively researched each disease and each vaccine and weighed the probability of disease vs reaction/symptom threat, factored in that I am a stay at home mom and our family homeschools. We mostly follow the Dr. Sears schedule, with our own modifications.

To break it down we do get the Hepatitis vaccines, but not when they are infants. We got polio vaccine done at age 1 because there is a new wild strain that has ties to an Amish community near us (or that's what our PCP said). We got the kids tetanus because we live on a farm and the kids are very active and it is bundled with some other things. We don't do flu vaccines, ever.  Chickenpox I hope to expose them to as a child and if that doesn't work, then they'll get the vax at age 15. MMR we intended to do at age 5 for the kids. Lily has already had one dose. When I was pregnant with Isaac our PCP advised against getting the MMR shot/booster for the girls at that time because of vaccine shed. With Isaac's immunity in question, he continued that recommendation.

That was the first time in all my research I had ever heard of a vaccine shedding. Up to 3 weeks he said. Since then I have done a lot of reading on this. Wow. The live flu virus vaccine shedding can actually spread the virus to the fragile folks (babies, cancer patients, immune compromised) we are trying to protect in the first place. Yikes. Folks who get these vaccines should be educated and take precautions, but they are not and most people who care about it don't even know.

After Isaac was born and diagnosed, the doctor said the same thing. Isaac is at risk and until we know his immune function, vaccine shed is a concern. 3 weeks is a long time to quarantine the girls from their brother. Add to that, there is no a active outbreak of any of the three viruses in MMR. We have an exemption waiver for the time being.

In the meantime I studied. I studied what the viruses can do. I studied Isaac's immunology results. We had titers done on what vaccines he did get (the not live ones are generally recognized as ok for 22q kids, even though each time he got really, really sick and cried for days). He did in fact develop immunity to the few vaccines he got. That's good! We do plan on getting the MMR for him, just not while he is non verbal and not while he is so little.

Things like RSV don't have a vaccine. Croupe. Random viruses. Vaccines resistant mutations like the round of pertussis that hit southern Iowa. What to do about that? How do we prepare for that?

We cannot live in a bubble. We cannot bathe in hand sanitiser.  This is a fine balance we manage between medical needs and holistic natural parenting. Once slip and we all get whacked in the face hard and bloody.

Here is what we do as a general precaution.

*This is not medical advice. We do these things under close supervision and advice of several specialists. I am sharing this information because many families are searching out ways to buffer and strengthen their kids immune systems and this is what works for our family.

Breastmilk. Isaac is 2.5 right now and still nurses. Even if he had been unable to suckle or if I had problems with supply, knowing what I know now about the vital importance of breastmilk on immune function and development, I would be pumping or getting donor milk. Isaac is beginning to self wean. I will continue to pump and make sure he gets breastmilk through one more cold and flu season, at least one more. If there is one single thing I could tell 22q families and doctors, it is to make breastmilk more of a priority. Formula just doesn't do it for the immune system. Formula is not your only option. I had a friend who's birth didn't go as planned and her baby ended up in NICU. I posted a request for donor milk for her on a local facebook group, within 20 minutes she had offers that totalled up 3 gallons of frozen milk, and one family delivered their share to the hospital within 2 hours of the initial request. There are donors lining up here to help every time there is a request. 

Elderberry. There is science behind this. Even our PCP agreed that it is a good item to use. We make our own, but there are several places you can get it commercially. The chemical reaction that happens to the virus makes the virus unable to stab into healthy cells and allows your immune system to catch up and win. There is also some secondary thing that happens that boosts immune response. Good stuff. Works for viral and bacterial infections. We take it if we've been exposed, if the kids wake up sniffly, or if we experience that tickle in the back of the throat or the chill that precedes getting really sick, hard to describe, but most people know what I am referring to. This is the first year that Holly nor Isaac have not ended up in the ER with croup or respiratory issues. They also did not get any vax this winter, but that may be coincidence.

Ground Ivy Tincture. High in vitamin C and plant based iron, drains ear fluid very effectively. Actually, it thins all mucus in my experience and drains lymph swelling too. That's what it does on me, at least. Isaac was cured of having any ear fluid build up at all in two weeks of usage. It is safe for just about everyone, except for people with certain liver issues, but be sure to research this for your self. More 22q families should try this. Every time I see pictures posted or posts about the suffering of the babies from ear fluid and infections and deafness caused by this, I suggest it. Usually I get laughed at for being a hippie, but this really works. I wish more people would try it. It is an oral dropper dose, and Isaac points to the cabinet and signs for it when he gets fluid pressure. I use it on myself when I get sinus pressure. Within the hour I am draining and healing.

White Willow. I use this for fever reduction and headaches, on myself. I have blood pressure issues left over from pregnancy and this is the only thing that works for that type of headache. Generally I let the kids fever out what they get. I watch though and treat with motrin if it goes over 102.5.

Marshmallow root, A wonderful cough drop. Very soothing.

Honey, proven to reduce inflammation and soothe sore throats. Doesn't have to be local but if you know your beekeeper you are more likely to get real honey. I suspect that is the base of the mythology that only local raw honey works, any real raw honey will do the trick actually. Store honey is more likely to be diluted or simply not even real honey at all. Honey has antibacterial and anti fungal properties, and so many trace minerals too. It is really good for you. Honey is used to treat infections in wounds, to soothe coughs and sore throats, and it tastes really good too. Several labs have said that it eliminates staph, e-coli, and salmonella bacterias.

Fruit, lots of high vitamin C fruit. My kids have open access to fruit. What is in season and local is best. We don't have local citrus though, so they get open access to clementines and oranges and pure lemon juice to add to water all through the winter months. If they eat a 5 lb bag in a day, I know they won't be constipated! Plus then I get all the peels to boil and moisturise the house air.

Teas, we drink a variety of herbal teas, most really high in vitamin C. I sweeten with honey or real maple syrup. There are a lot of good minerals in natural sweeteners, all help with over all health.

Whole foods, butter, coconut oils. I add coconut oil to hot chocolate and oatmeal and popcorn. Yum.

Sunshine. Natural vitamin D is to be had all year round. They get playtime outside in mostly all weather, every single day. Obviously not in a blizzard. Yay for Iowa having extreme climate zones. In the winter or rainy season they get extra mushrooms in our meals (sometimes hidden as a puree). They will sometimes also get fermented cod liver oil. Mostly though, they get sunshine. There are full spectrum lights you can buy, Happy Lights. We don't use sunscreen or lotions ever, and no one has burned yet.

What we don't do and pay more attention to when illness is about:
dairy, processed sugar, hot dogs (any processed meat product).

Secondary things, even if you don't buy into the hippie dippie nutritional approach.....doctors appointments. We ONLY schedule for first seen of the day. The office should be cleaned (hopefully) and the nurses and doc won't have seen/handled a parade of sick folks yet. I was concerned that the vax related sickness might also/instead be that they were in a doctor's office full of sickies coughing and hacking all over everything and everyone. So we go first. Always. I insist.

When we get home, we change clothes and bathe. Shampoo hair. Drink lots of orange juice. Rest.

Labs we have done early in the day and they know we want an unused room when we come in. We only use one lab for blood chemistry work and always the same incredibly good phlebotomist.

Other things: household chemicals. Harsh chemicals can damage the endocrine and immune system too. Since we need to minimise allergic and respiratory reactions, we use harsh cleaners and cosmetic products sparingly.
  • we do not use fabric softener, we use vinegar instead
  • cleaners: we use bleach sparingly, very sparingly. We use baking soda, vinegar, vodka, and essential oils to make surface cleaners. Very little carpet in our house, that helps a lot.
  • we use norwex rags and kitchen sponges, not the whole norwex line, but I like the items I have
  • real soap, made from whole ingredients and locally. Including shampoos. 
  • we do not use artificial scent things, of any kind. No plug ins, no scentcy, no fake candle smells. None. I do simmer cinnamon and apples or orange peels and that smells nice.  
Sometimes managing the health of my family is like crawling through a tunnel, we have this definite boundary we are working within, a set of known health factors. We can usually see the light at the end, but it seems so far away. I feel like a lot of people just don't get it. We have even been publicly attacked online for our vaccine choices even with those choices being guided by and under close supervision of specialist doctors, some folks just think they know better than the experts who actually have access to my children's medical files. Weird, I know. I am sharing that experience specifically so that if anyone might feel inclined to give us another round of uneducated crap about what small part we have shared here, we've already been there and done that.  It is annoying and not helpful. Just know that we are doing our best and our best is allowing our children to thrive.

Vaccines are not a fortress that protects all. Immunity is more than that. We try and look at the whole health picture and work hard to build up the defences, the offences, the players, the coaches, and the playing field. Every detail matters. Every sniffle, every bit of ear goo, every cut. It is my job as caregiver to be hyper aware and balance all of this without letting the kids get paranoid or afraid of being in the world.  22q11 children can get very sick, from vaccines, from common colds, and from bacterial infections that a normal immune system would just shrug off and keep playing the game. Only this isn't a school yard game of kickball, it is my child's life at risk.

Again, I will state that this is not medical advice. It is not a judgement on other families' choices either. It is what we have researched and what we have done, this is what is working for us. Things may change, we may have to change with them. For now, this is what we do. 

*I guess I have to clarify again, this is just what we do and under close supervision of our specialists. Not medical advice. Not. Medical. Advice. The items we use are safe for our children and us, but every medical situation is different so make informed decisions, please.


  1. It sounds like you are doing the best you can, and that's all anyone can ask! Don't worry about getting bashed for what you do, (it's harder said than done, I know) just do what's best for you and your family =] Thanks for the post, I enjoyed reading it =]

  2. Great post. I really worry about vaccines. I know Maya is way behind on hers, but they started bundling them and I was not comfortable with that so I haven't taken her for a well visit since she was a baby. I will never get that HPV vaccine for any of my kids, it sounds just awful and the stories of people affected are terrible. My children have asthma (hereditary from both sides of the family) so I am really interested in Elderberry.

  3. Gruenwald J, Brendler T, Jaenicke C. PDR for Herbal Medicines. 1st ed. Montvale, NJ: Medical Economics Company, Inc., 1998.

    Newall CA, Anderson LA, Philpson JD. Herbal Medicine: A Guide for Healthcare Professionals. London, UK: The Pharmaceutical Press, 1996.

    Brinker F. Herb Contraindications and Drug Interactions. 2nd ed. Sandy, OR: Eclectic Medical Publications, 1998.

    1. If you are interested in doing your own research these three books have clinical data on ground ivy.


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