Category: Updated
It has been over four months since I last blogged about my daughter and her sudden illness. I think it’s time for an update.
When we last left off, we were a month into the hell that was her post infection irritable bowel syndrome. Before this happened to her, when I would hear ‘IBS’ I would picture someone with a stomach ache. I did not know just how bad it could get. You cannot know until you are living in the middle of it.
She lived in pain all the time. We had a scale we would refer to – “What’s your pain on a 1 – 10?” Ten being the worst. We never went below a five. Five we considered ‘good enough & manageable’ even though she would still audibly moan out loud. Seven to eight was gut pain mixed with hunger, how ironic. Nine to ten, that was after meals or in the middle of the night, the worst. From the time she woke up until she went to bed (and when I say ‘went to bed’ I rarely mean ‘sleep’ since her pain would keep her from sleeping) and even when she did sleep, she would thrash about moaning in pain. It was at different levels throughout the day. She would wake up moaning. And her pain would elevate after every meal. Her belly would puff out as if she were pregnant, horrible noises would start up from her midsection, and her howling would ramp up. We were at a loss for what to do. She didn’t attend school for two months. She lost weight. She looked horrible. We would end our day working to get out of her intestines what we worked hard to get into her. It got ugly. You don’t need more details than that to get the idea.
We spent time at Children’s Hospital in Boston, and we saw a doctor in the children’s GI department at Mass General. The conclusion was all the same – whatever happened had left her with a damaged small intestine, and that we needed to work with the pain management team to teach her how to live on a daily basis in pain. Yes, she is in pain, but ‘the pain won’t hurt her further, it just exists’. Her pain is considered ‘functional’- characterized by chronic pain, with no physical explanation or findings – no structural or mechanical causes can be found. Try and comprehend that – she needs to learn how to live her daily ‘normal’ life around her pain. This is her life now? Daily pain? I would go out to my car to cry. I would scream. I would call my mom and we would cry and scream together. Then I would pull my shit together and go back inside. I think I cried twice in front of my daughter. She couldn’t bear it. She said “As long as I don’t see you cry, I still believe I will someday get better. I lose hope when I see you cry”.
She did have an endoscopy that ruled out celiacs disease, ulcers, or other possible stomach issues. She was tested for parasites, twice – negative. We also looked into a small intestine bacteria overgrowth – SIBO. While her tests for that came back negative (and she didn’t respond to serious antibiotics for it like Flagyl or Rifaximin – a jaw dropping $440 with insurance for a two week course!) her symptoms closely linked to that of SIBO. Constant GI distress that elevated after eating, especially when eating more complex carbs or sugars.
She had to start seeing a pediatric pain psychologist on a regular basis. She learned how to breathe into her pain, to visualize positive thoughts to minimize the pain. She went to acupuncture offered at Children’s Hospital. She got a TENS unit to wear around her waist. It
TENS Unit
is a bit bigger than a box of cigarettes with ‘leads’ that attach to the area of discomfort. It administers electrical nerve stimulation that is supposed to minimize the pain. For the record, she didn’t find it helpful at all, though many people do. I even tried it on my lower back since I have back pain. (Her physical therapist said I could use it as well.) I didn’t like it either. They emphasized ‘distraction’ as a method of pain control, and we knew that to be our best option. When she was busy, she could retrain her focus. The worst was at night when the lights went out and there were no distractions. Most of the time she would try to sleep, but she couldn’t, so I would get up with her and we would watch television. There was always a repeat of America’s Funniest Home videos, and we could laugh out loud at it. I would scour the net for information about her condition during those all night marathon tv/reading/iPod/computer time sessions.
I asked the GI doctors at Children’s Hospital what I should feed her, since it seemed as though every thing she ate just brought on more pain. One doctor had suggested a FODMAP diet. It is a list of foods to avoid that can cause more gas & distention in the small intestine, resulting in more pain. You avoid foods high on the list – which are usually more complicated carbs – and opt for the lower, easier to digest carbs. I gave it a good try but found it ineffective for us. It isn’t that it’s such a tough diet to follow, but if you are a picky eater to begin with, as she was – it can be a challenge. When we met with the pain management team, I brought up the whole food issue with the head doctor and how we were trying the FODMAP diet. He waved his hand dismissively and said “It is too difficult to try and follow any specific diet. Just feed her what she wants so she will feel like a normal ten year old.”
What?! My daughter moans in pain all day long. When I feed her something that is supposedly less stressful on her gut, like on the FODMAP list, she still deals with pain, clutching her belly as it bloats, howling out like an animal. If I feed her what she wants, her ‘normal’ diet – I have watched her pain elevate to a point where she is standing up, fists clenched and screaming through clenched teeth. For hours. You have got to be joking – feed her what she wants so she feels normal? Normal is NOT missing over two months of school, losing weight, being in pain all the time.
So…what do I feed her? She was losing weight, and she didn’t have weight to lose in the first place. I was getting alarmed at how thin she would look when I would see her getting into the bath…
Coming up…part two of ‘My Daughter’s Recovery”.
This is a repost, here is the original post from December 2009. I have edited it to reflect where we are now with all of our stuff.
“A house is just a place to keep your stuff while you go out and get more stuff.”
George Carlin.
Stuff. It fills our lives right up to the edge. Think about all the stuff you have. Especially as a parent. You have the stuff you need and then there is the rest of it. We are so guilty of it, and by we I mean me and my husband. We aren’t the type to just shop and fill our spaces, but when you have children, and you have friends & family, stuff just flows your way. We have a house filled with stuff and we have a barn filled with stuff. Stuff we need and stuff we don’t. But we have gotten better about weeding through it all over the past few years, whittling it down. Making donations twice a year. But it can take over your life if you let it.
OK. Where did I leave off?
Oh, yes. I was stinking up the place.
Off I headed to Whole Foods once again, the nearest store with the most natural, chemical-free options. There is a whole slew of natural deodorant options. The Crystal natural mineral salt deo. The Crystal helps to neutralize the bacteria that feeds off of your sweat, thus cutting down odor. (That’s how most all of the natural deodorants work, by trying to neutralize bacteria.) Tom’s of Maine’s line also works the same way, by using natural ingredients to reduce bacteria. I went with Tom’s of Maine Lavender scented Long Lasting care stick. It claims to work for 12 hours.
Try two hours. Maybe three, tops. I’m sorry, Tom, but I have to tell it like it is. My pits were ripe and nowhere near a field of lavender after a couple of hours. I was using this product in September & October, not too hot and not too cold here in New England, under normal circumstances. Cleaning house or raking the yard, it didn’t matter. I was disappointed. I love the Tom’s of Maine line and what that company stands for – and I know that it must work for somebody.
So I went back for another try. I was standing there staring at all these natural deodorants. They offered a plethora of organic natural ingredients: hemp, tea tree oil, organic essence oils like lavender. Pure plant and seed oils. Name it. There was a very crunchy granola looking employee working in that section. You know how Whole Foods has their employees who are trained and knowledgeable about their supplements, beauty products, etc. She approached me and asked if she could help. *Sniff sniff* She didn’t stink. Maybe she could clue me in.
“Have you tried any of these deodorants? I’m allergic to the regular stuff. I tried Tom’s but, you know…I was having to clean my pits and re-apply several times a day.”
She nodded her head and looked sympathetic. And very quietly said:
“They are all kinda that way. I’ve tried most of them myself. You just have to get used to cleaning and reapplying a few times a day.”
WHAT?! No way. I must have looked taken aback, she pulled a Nature’s Gate deo off the shelf and said “This one isn’t bad” I don’t want to start a collection of half-ass deodorants in my house. She tells me that Whole Foods, bless their hearts, would take it back even if I used it. My used deo? Yup. They take back most everything. Folks have returned dead floral arrangements and have gotten their money back. Nice policy. Because within 2 weeks I returned the Nature’s gate.
I still had the stick of Tom’s, not having kept my receipt. so I started to swipe tea tree oil on it then putting it on. That helped extend the protection a bit, but not too much. Tea tree oil has anti-bacterial properties. But it still wasn’t enough for me.
Then one day while cleaning my bathroom with vinegar and baking soda, it occurred to me to dip the Tom’s stick into the baking soda.
The heavens sang. Angels wept. Glory be, it worked. And it worked well. No kidding. The baking soda really knocked out odor. I did NOT stink all day. Nope. I put this one to the test over and over with great success. Yes, it leaves some white stuff on the inside of 
your shirt but who cares? It even helped with some of the wetness.
After getting online and checking it out, many people have figured this one out. There seems to be a question of aluminum in baking soda, so I bought Bob’s Red Mill organic baking soda. never hurts to be safe.
Then I started to poke around some more online. And I found Simple Mom. One of my new favorite places to land when sussing out advice on a whole host of topics. I clicked on the Green & Frugal living link to find just the article I was looking for on homemade deodorant and the reasons behind why we should avoid deos with parabens. Parabens are linked to cancer. See the FDA page on this here.
So I decided to try the recipe she provided. A mixture of Barlean’s virgin coconut oil, which is solid (a favorite of mine that you will see in 
many future posts) that I already had on hand, baking soda, and cornstarch. Virgin coconut oil anti-viral, anti-bacterial, and antiseptic properties. Mashed all together, and smooshed it onto an old deodorant container. Let it set. Next time I went to use it, bingo. That was the ticket. Easy to use.
Please note that coconut oil does start to melt at 76 degrees Fahrenheit. So in the warmer months in will be stored in the fridge. I also recommend putting it on and letting it absorb into the skin & drying a bit before putting on clothes. I noticed a tiny bit of oiliness on my shirts unless I let it dry first. Then, it was no problem. (I usually wear cotton shirts, nothing fancy. I don’t know if it would rub off and leave an oily mark on other fabrics. Let me know how it works for you.) I also have a container of baking soda and cornstarch in my bathroom cabinet with an old makeup brush. I dip the brush in and swipe a bit more on my pits, in addition to the coconut oil stick, if it’s going to be a particularly sweaty busy day. It even helps with wetness. I know this stuff works for me. I can be pee-yew free for a couple of days. How do I know?
Because I don’t bathe every day.
Helga, Live Green Mom, have you gone too far? You don’t cleanse yourself on a daily basis?
Until next time, folks, when I defend myself. Stay with me!
*SUMMER UPDATE* July 7th, 2010
I’ve been using my home made deodorant now since January. Now, I know it is easy to say it works well in cold weather, but how about in the hot summertime? I have no air conditioning and we have had a heat wave here on the east coast this past week. I am thrilled to report that this deodorant has stood up to my sweatiest & grimiest activities, from running around all day outside with the kids or mowing the lawn (with my Fiskars Momentum Push reel mower!) to cleaning the house, all while dripping with sweat. No stinky pits here, I even made my husband (bless his heart!) give me the sniffing over to make sure. You know how sometimes you can’t smell yourself. Maybe that’s only when you have bad breath. Whatever. To remind you, you do need to get used to having sweaty pits, this does not prevent sweating, but you don’t want to prevent sweaty pits. Your pits sweat for a reason, to help cool you down and move toxins out of your body. It took me a while but not too long to adjust to this. AND this deo does melt at 76 degrees, so do not make the mistake I made and forget about it in your medicine cabinet when it gets warm outside. What a mess! I keep it in the fridge, quite refreshing. Another note: if you think you are an extra smelly person and you might need some extra odor protection sometimes, you can dab on some tea tree oil first, then the home made deo. Tea tree oil is an anti-fungal, anti-microbial that will give you that extra layer of confidence should you need it. Now, I do not recommend this every day, since tea tree oil is strong and can be an irritant to skin. It can sting if you have just shaved, too. Health hazards that might come from using tea tree oil on your armpits for prolonged periods of time are still being studied. I have used it a few times and it works fabulously!
*Update* October 26, 2011 - I still use this, it still works, one of the best homemade products ever. I swear by it!
Anyone else tried this recipe? Would love to know how it worked for you!
Flotsam and jetsam. I like that term, it applies to what a mom must manage ten-fold. All that STUFF that comes home with your kids. The goodie bags from parties. (I stopped giving out goodie bags a few years ago. I don’t want to add to someone else’s flotsam and jetsam). All those freebie pencils with the CRAPPY erasers that do not do their job. Junk from the cereal boxes that they fight over. (Really? A spoon that lights up every time you take a bite? We need that why?) It takes over your house. It clogs up drawers and floors and under the bed. The floor of your car. It’s the stuff you step on in the middle of the night running into your kids room as they cry out for you and feels like you stepped on a tack. Or – the worst! – the stuff the kids step on in the middle of the night shuffling off to the toilet and they start howling. That will ruin your sleep for sure.You get the point. It is the stuff that you go to throw out and if the kids catch you doing it they are upset, indignant – you’re throwing out my stuff?? You have to do it when they aren’t looking. And they never miss it! I have never had a kid come looking for their…whatever it was I got rid of.
Here’s one of those thing in particular that I truly despise. Toys from fast food places. (Live Green Mom, you take your kids to fast food places? Look, I said it was a struggle and I’m working on myself! Slack, please.) There are times you gotta take them to get food and you gotta do it fast. We all know the ones we take them to.
I hate the toys in the Jolly Meals (I’m just calling it that, you know what meal I’m dissing here). I hate Jolly Meals because they hand you food in a cardboard box that you walk a few feet with to a table, sit down and start disbursing who gets what, eat, then – walk a few feet over to the trash and throw it away. I take the boxes home and recycle them if they didn’t get any food on them (you cannot recycle cardboard that has been contaminated by food) or ask the guy at the counter, if I’m quick enough, to NOT put the meals in the boxes. Puzzled looks but they comply.
And I hate the toys that come with them. Some of the most useless toys ever. And because kids demand instant entertainment, (they have been conditioned, they know what to expect from these toys) most of them make a blip, a beep, or light up in some way. And now you are faced with - how are you planning on recycling that thing? It has some sort of electronic or light up thingy in it. You cannot just toss it in your recycle bin. Are you keeping a box of electronics to recycle responsibly, and you just toss it in there? That is what I do. My town offers electronics recycling once a month but you have to pay extra for it and it’s limited, what you can bring.
So about, oh, not quite two years ago I started to…wait for it…request that we DO NOT GET A TOY when I ordered.
Did you gasp? Because that is what the folks at the counter did. (it wasn’t a loud gasp but still…) Not just the people taking my order but the moms in line. My kids getting sympathetic looks from other kids. I am not kidding here, this was major. And can you just imagine the cry and hue I got from my kids? The whaling and gnashing of teeth. How dare I deny these kids a free toy? One guaranteed to satisfy? (I have also gotten the ‘But it’s free! Why not take it?” argument but then I say it is one more thing I have to be responsible for, I have enough, thank you) You thought I got puzzled looks when I ask them not to put it in a box you can just see it in your head, they looks exchanged by the guys behind the counter accompanied by a small shrug as they call out:
“I need a Jolly Meal one hamburger NOTHING on it one apple side caramel sauce one chocolate milk NO BOX NO TOY!”
Like a ripple effect people craning their necks to see who is the mean, cruel mom. That would be me. Heaven forbid I am in total frumpy mode wearing a doo-rag on my head. Then its: “oh, one of those moms”. (Note: I’m not one of those moms, if I were I wouldn’t even be in there getting a Jolly meal.)
Please. I will admit that occasionally between big Hollywood mega action films providing the inspiration for these toys, they have their back up filler toys. And the ones like the tiny Beanie Babies, my kids LOVE them and can play with them endlessly. The stories they come up with, especially Sophie, the towns they build for them with tissue boxes and Lincoln Logs. They take these toys in the car and play together with them. These toys I don’t mind at all and will happily let them have. And they don’t hurt to step on them.
It took a while and many disappointed Jolly Meals for my kids to get over this. But they did get past it. they don’t make a fuss over it anymore, not really. They still ask for the toy, and after I take a look at what is being offered, I say yes or no. Usually no. Sometimes, I give in, because they have been really good that day or I’m with another family and don’t want a big scene (“why do they get the toy and I don’t?”). Earlier this year we were headed there for a meal and Sophie really really wanted the toy. She didn’t even know what the toy was. She begged and pleaded. I gave in. I don’t know why. I’m not perfect. But the big movie out was Monsters VS Aliens. She got her toy and ripped it open to find a red plastic blob of a character from the movie, I think it is the giant caterpillar, and it made a s-c-r-e-e-c-h-i-n-g noise. It was so nondescript, useless and utter landfill. We both saw it for what it was right away. She burst into tears, threw it on the floor and screamed about what a horrible toy it was and how mad she was for getting that toy. What she was really mad about, I think, was that she knew I don’t give in often and she used her card up on that hard plastic blob instead of a better toy at another time I might have said no to.
Hard lesson, kid. I’m not heartless but I have a job to do here and I clearly have my work cut out for me.
*UPDATED on October 28, 2011* This small change in our family was a good one that stuck. We hardly ever, ever go into McDonalds or other fast food places unless it’s as a last resort. And when we do, my kids will say “It doesn’t taste as good as I thought it would”. My kids don’t even think to ask about the toy anymore, either. This wasn’t that hard to implement, so give it a try. You might be surprised!
