Perspective, Immunity Part 2

One of the things that being in the between of these worlds affords me is a perspective that is different from either extreme. This perspective is bias, but also educated. Recently there was a round of chickenpox in our community, pox parties were thrown, people rejoiced at the spots. I contemplated attending with my kids, one set of docs had ok'd it for Isaac. The timing was right as far as activities and work schedules go.  Still, I decided that the time was not exactly right. Not just yet. Then, there was an expo being held and one of the online mums asked flippantly if it was ok that her pox'd 4 year old came with her to the very public event. After all, everyone wanted some of the itch action.

Yeah. No. That is irresponsible. What if she had not asked? How many people like her would just bring the infected kid on out to the grocery store. After all, those who don't want it are vaccinated, right? Wrong. I have to be extra careful, I have to speak up and make sure that this kind of foolishness is stopped. Yes, I intend to infect my kid with chickenpox naturally, but I need the timing to be right, not for the infection to happen because some fool of a non-vaccinating family decides to create an outbreak. If you choose, like we do, to not vaccinate for some contagious diseases, you must, for the love of God, be responsible and mindful of your choices and not inflict them on other people. It is actions like these that give mindful parents a bad rap. Most of us research and study and know our diseases. Most of us know better than to take a sick kid into a room with a 1000 other people, many who are or work with or have babies. Recently a fully vaccinated child in our community contracted chicken pox unwillingly. How did that happen? May very well have been vaccine shed, but we don't know. Vaccinating families can be just as irresponsible post vaccination.

This is the fragile edge that I walk with my children. I have to take up the slack. I have to be twice as vigilant. I have to read so much more and understand and be able to explain and constantly justify my choices to doctors, to family, to random Internet strangers, to hostile asshats who decide that this is their crusade. I do this while wiping noses, examining the colour of snot, of poop, of ear goo. If there an infection, what is the viscosity, how much how often, then what? Constant. Always. On the clock. Listening to breathing patterns, heart rates, fingernail colour.

I get tired and run down. I have to keep myself healthy too. I am the primary caregiver and there is no vacation, no lunch break, no respite. We are in the middle of not just two worlds, not just between normal and medical needs, but in the medical needs world between the kind of needs that get extra services and nursing services and the kind that are just enough to be noticeable and require constant vigilance and care on our part to stay on that side of the rope. Like a giant Venn diagram, of NICU and normal and genetics and special needs, we fall in the grey area off to one side with the constant threat of shifting to the left. It is often a very lonely place that our family inhabits, where the naysayers say we are irresponsibly not doing enough or they say we are overreacting and nothing is wrong.

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Last year a friend I have never met in real life had an idea and brought me on as moderator to bring forth a fantastic online support group, Natural Parenting of the Child with Special Needs. 

The link is to the gateway for the group. The privacy setting are set to secret to protect the privacy of the members (closed status lists names of members, secret does not), so new members send an add request to the message function of the gateway page.

This group of families and parents all over the world has helped me not feel so alone in this foggy grey area. Some have diagnosis for their children, others do not but have a vast array of symptoms that they deal with daily. There are families sharing recipes for special diets, others helping direct parents to other support groups (blenderised diets and the Natural Parenting Downs groups come to mind). So far, this particular group has been one of the most respectful, information sharing groups I have ever been blessed to participate in. I am grateful to be involved and a part of something so special. Discussions have included how to babywear a g-tube baby, how to ditch miralax and use real food for better results, benefits of donor breastmilk and how to re-lactate, what PANDAS is, and how to lessen post surgery PSTD for a child.

The very first week this group was up and running I knew it was something many of us desperately needed to be a part of, that we are not alone on this rugged unmapped island. That is my constant gratitude, that this group exists and has done good in my life. Through this group I have made friends in the 22q community that otherwise would have slipped through my newsfeed. I have made local friends, deepened relationships with friends I already had, connected with childhood friends who are now raising special needs children too. Amazing and wonderful.

Immunity

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.

Level Up

This year has been a "level up" for me in many ways.

I am not the mother of an infant anymore.

I am nearing the end of my days as a nursing mother too.

Our farm is starting to settle and evolve into what it will best function as and move forward with an established customer base.

Housework has shifted, both girls are capable and willing most of the time to assist and make things clean and tidy, both show pride in their work too.

Chad's job has changed too and is about to level up again.

My job had some complications, one day I was in tears because it was pretty clear that I would be without income in the Spring. Not because of my performance, but because of the economic shifts happening and the contract nature of my job.

Well, good, I thought. I am burned out anyway.

Then my friends Breann and Holly both sent me a notes and encouragement that began posing this question: "What is your ideal job/situation?" And I began to frame the question in my mind and the answers around it.

Ideally-
1) I'd like to have more time for my kids. They are getting less of me and it shows.
2) Online.
3) I'd like to teach history instead of English, at least for a while.
4) I'd like time to work on my writing.

 I also liked my job and was sad at the prospect of downsizing.

So, first I stopped getting emotional about it. Being in  that state I could not actively and rationally frame what I wanted and advocate for myself. Second, I started talking to people. I started small. Began writing my CV, which I had never done before. I asked for help with it. I began looking for the kind of places I wanted to work and checking out the HR pages for job openings. Then I sent emails to my current employer asking about options and also help with the CV.

Soon, I had my old job back in place. Seriously. It was all a misunderstanding. Then I also had a new opportunity which is fantastic. I got up in the morning excited to go to work. It wasn't online and it wasn't easy- but my mind is being nourished, I am learning as I go, AND it was history.

I am making progress with finding a publisher for my book, I finished it too, maybe. Ha! I also started the next one, and I have it 3/4 completed already. Enough to send it as a proof to a publisher too.

I identified some key changes that needed to be made at home with my own time and priorities.

So far, things are tidier (not perfect though) and we are better fed.

I am reading more, specifically history books. I am drawing and painting again too.

This is the kicker though, even as I have more to do- I seem to have more time for everyone else in my life.

I am writing about this today though, because I feel particularly grateful for the friends in my life right now. Even though I could not give back 100% or even 50% in these last 2 years, struggling with family economics, Isaac's diagnosis and medical stuff, and an overloaded work schedule- instead of rejecting me and my hot mess of a life, I was embraced and encouraged by the folks in my life worth holding on to.

I'm not done yet, I am still framing this idea of what I want my days to look like. I am still in the imagination phase, but I know now what it is I want and I am making progress towards it instead of being lost in the woods. I feel generally more confident, more supported, more loved. All things that I really needed, and maybe I had all along, but now I can see clearly where to find them, how to ask for what I need. Does that make sense?

Because of all of this change and transition the last 3 years, everything is better. Everything is amazing.

So now I ask you, friends, what is your ideal job/situation? What would you like to be different in your life? What is the first step you need to take?

County Fair Time!