Realitime update of my thoughts while Ada is under…

Ada is undergoing her second surgery—or second time being put under general anesthesia today, about one month after the turned three. She has officially surpassed the number of times Payman or I have had a surgery.
The first time she was 22 months old and we only decided to do the dental surgery route because she needed that and an endoscopy might be telling about the situation of her distraught little tummy. She wasn’t eating gluten at the time, though she was most definitely reacting to cross contamination at the time, and she did not have any gut damage, or esophagus damage either.
On the teeth side of things, she ended up with four crowns on her molars, three pulpotomies (root canals) with resin filling over top and one tooth with resin filling but no pulpotomy.
Since that day, 14 months ago, Ada has broken two of her resin fillings (it seems they just broke off—there was no noticeable injury and erupted four more molars. Her canines have decently deep cavities that have been scraped away (and I swear her tooth just crumbles) at least twice.
I remember going back for an appointment last September and the dentist said it looked liked we were keeping them very clean. We brush and wipe them with a cloth, but admittedly, it is very difficult to floss her.
Then we went back in November and all that was out the window. Her teeth were getting worse and worse looking, and she had food in stuck in them… a huge chunk of something she ate for breakfast, which the dentist insisted was there from the night before. We do not agree. I just don’t think its possible I missed a chuck of food *that* size.
Anyhow, the dentist’s unyielding opinion is that we don’t brush her teeth well enough and that is the problem. She repeats over and over—though *I* no longer bring it up, that there are no enamel defects in her teeth and they are extremely rare. I could add, though I’ve stopped, that they are not rare among the special population of those with celiac disease.
This morning, as we prepped for surgery, she told us that she wants to be “aggressive” with her treatment—which I actually agree with b/c I don’t want to be here a third time and have resigned myself to the fact that she has metals in her body—and do as many crowns as we need, after she takes x-rays and determines how bad the decay is.
But she always takes it one step too far, and Payman sometimes thinks I’m being too sensitive and sometimes agrees with how I feel.
Minutes before I have to sign a paper that says I understand the risks of anesthesia—including brain damage and death—she says we must be aggressive because she isn’t convinced that Payman and I will be able to keep her teeth clean enough to keep this from happening again.
Thanks, lady, really. I am risking my child’s life and putting her body through something because I’m just not able to brush as well as everybody else.
Okay. Maybe I’m touchy, but damn. She also said that Ada’s teeth have been dirty every time we’ve ever come in, so could we possibly “really” commit to the flossing this time? Payman makes the valid point that, as a doctor, if she *truly* believes this is all our fault, she has an obligation to drive home that point for Ada’s benefit.
It’s annoying that her memory of how dirty Ada’s teeth are at *each* visit and my memory of being told how I’m doing a good job at least once are different.
So an hour into the surgery she calls us in the waiting room, as we knew she would. Goods news—the decay in the newest molars is not as bad as suspected! She tells Payman, but not me, that she doesn’t understand, after reviewing Ada’s records, how the molars have the decay they do. I swear, that’s all I’ve ever wanted anyone to say. *&^%
I guess she saw less decay than expected from the x-rays and must have reviewed her notes from each visit, notes that *should* show that her molars at least have been decently clean at most visits. I freakin’ scrub the hell out of them. But I am bad at flossing—apparently my largest downfall as a mother of a gluten-intolerance child. (I made a joke the other day that bad teeth is just another way gluten says “F You” to people).
Not that gluten has anything to do with it according to the dentist, who has never studied gastroenterology or celiac disease.
So back to the point. Sorry for the bitter tone and language of this post. I’m a little raw at the moment .
These molars are less than a year old, and coupled with Ada’s records, the dentist admitted she doesn’t understand why they are decaying the way they are.
However, good news is she is now suggesting no metal crowns on the molars! Just resin fillings, and maybe very close visits so that tiny cavities can be filled with resin without totally traumatizing Ada each dental visit. And, “Can you agree to really devote yourself to the flossing?” Yes, God woman. I’ll force her more than I do now. She does admit that she understands why it’s hard for us to do it—b/c Ada protests so much. She cries through brushing as it is.
She is losing all four front teeth, and getting crowns on the two canines. Those top four caused most of the problems… they have the root canals and the decay… they probably breed the bad bacteria. She’ll have a toothless little grin until she’s eight at least, but what else can we do?

Dental work feels drastic to me as a reason to put your child under. But with all of Payman’s dental work the past year, even as an adult, he is developing a deep-seated dread of dental work, and we don’t want to do that to her.
Okay—rant over! A few more hours and I’ll see my swollen lipped little angel!

A foreign-feeling kitchen

Navigating someone else’s kitchen is always hard. I searched for 10 minutes for the right pan.

But then I stood face to face with how hard it is to navigate someone else’s kitchen and make food that is gluten and dairy free.

It amazes me still that people think we are the ones with the restricted diets… in the midst of eliminating culprits, sure it can be more limited, but once one has it narrowed down– even to gluten/wheat, dairy soy and eggs– the diet tends to be more expansive. Sounds odd, right?

But Lord have Mercy… I was hard pressed to find anything that didn’t have dairy or gluten in a stocked-to-the-brim fridge and freezer.

It *shouldn’t* be this hard, and making food in my own kitchen is decidedly NOT hard. This is *not* a post about how hard eating gluten or dairy free is. Just a rant really.

I go to find some seasonings. The spice blend states it may be contaminated with traces of wheat. Out.

The salt has dextrose (corn sugar) in it. Not wheat, but it’s out for me still. I take a philosophical objection to corn being added to just about damn near everything, and it’s more likely cross contaminated with something we don’t eat that way, anyway.

Fresh lemon juice and olive oil on the chicken then (heaven help you if you were vegan in this particular house!). How I wish the olive oil wasn’t stored under the cabinet jammed on top of cleaning chemicals.

Now I need a new pan. I found some frozen veggies that aren’t organic, but I can’t be snobby at this point.

Superb. I find a pan and the cabinet and pans have bread crumbs from the counter in them. Need to wash that. Now throw on my chemical sensitivities and aversion to perfumed cleaning products. The dish cloths all smell of fabric softener, which has some pretty well documented health worries, and gives me a freaking headache. So, a rinse with water and a non-recycled paper product? That will have to do.

Then I think about the chicken we will eat. And the news story this morning from a poultry plant in a neighboring county where turkeys were being stomped on and kicked. I can’t feel good about eating something that has been abused, even if I did ascribe to the philosophy that we are the stronger animals and can eat animals as humans without guilt, and I do not entirely.

I could not find a fresh vegetable in this particular kitchen. The entire fridge was filled with gluten and dairy and meats… but the meats also had gluten or dairy, or at least preservatives and additives that I don’t eat or give my kiddos.

I know this post sounds like food snobbery, and thank God, truly truly thank a Creator or Providence or just good luck that I live here and not it the majority of the world where people know true hunger or competition for clean food.

But really… why is it so hard to find real food in a random American kitchen? The food I did find that is food allergy or celiac disease suitable is factory-farmed, unwholesomely treated meat. I remember an Iron Chef special… way before Iron Chef America on Food Network, where the Japanese Iron Chef’s went into an American person’s home and made them dinner as a surprise. One Chef commented that he couldn’t find anything fresh to work with. Just jars of condiments and prepared stuff with junk in it. Maybe the chemical smells are making me cranky, but it sure is tedious to work in someone else’s kitchen.

And it’s not the gluten and dairy, people, it’s the poor eating habit and the lack of care of what we put into our bodies. We had a beautiful gluten and dairy free Christmas dinner, cooked in my mom’s kitchen with only me and the kids being gluten and dairy free. But she made the effort to get the right stuff, and not a single wheat-eating person missed the wheat, not even at dessert.

Hello again — an incoherant update?

Two and a half months. That’s how long its been since I made a blog post. The past 3 years or so I’ve written tons about food, food allergies, parenting, recipes and anything else I felt about. I don’t think I’ve gone through a time where I spent more than a month without writing though.

During those lulls us blog posts I was sometimes busy writing for the Fayetteville Observer. That always seemed a good excuse– writing pieces for professional publication. But I can’t use that excuse any longer it seems. I could be bummed about that for a second, except that I have much larger things in my life to be bummed about, and other, entirely different endeavours to be happy about.

I’ve put some of that food-energy into baking as more than just a hobby and a way to keep my kiddos happy and treated up, despite the lack of gluten and dairy. And soy and eggs– when you add the family up. Hobby, by the way, means something you started doing while your colicky, gluten intolerant infant was in a baby wrap, inconsolably crying at 11 p.m.
I had no idea that those night-time moments when I was trying out new gluten-free flours…. Mixing brown rice flour and millet flour and guar gum, in order to try to copy wheat bread and chase the colicky crying and rashes away would become a small business venture.
I had no idea that when my father-in-law passed away, and anyone would have understood my *not* dropping off three dozen cupcakes to the local health food store, the Apple Crate, two days after, that I would happily mix and stir and ice (icing—that is the really fun, and annoyingly messy, part) and make those cupcakes while taking my mind off the awfulness of the days and weeks before it.
And so here I am. Not writing. Mourning, but more importantly, loving a mourning husband. And baking. Never in a million years could I have predicted this month at this time last year. But I saw and felt it all coming about mid-November. I remember remarking to my husband that I felt like it was going to be a long and emotional holiday season—and at the time I thought I was only talking about our almost 3-year-old’s upcoming surgery.

Racing toward adulthood?

This past weekend was La Leche League’s biannual conference. The title this year was “Trails and Trials: Pathways to Parenting” and while there were definitely plenty of seminars on breastfeeding specific issues that help those involved with La Leche League be current on research and help mothers seeking breastfeeding support, there were many, many parenting seminars this go round.
That appealed to me since my kids are 5 and almost 3. Azita has gone through a few new issues with school starting, and Ada’s toddlerhood is not at all the same as Azita’s. Different things make her happy, occupy her time and make her upset than did Azita.
The first morning was a talk to the entire conference by Marian Tompson, one of the original founders of La Leche League back in the ’50s. She has 7 children and many grandchildren (and a few great grandchildren too) and I obviously thought it was cool to be able to listen to her thoughts after having been an advocate for children for so many years.
The title of her talk was “Childhood is a journey, not a race”. She talked about a variety of things– some related to that specific topic and others not. She spoke about being in Japan at a time when most babies in this one clinic did not get any colostrum (meaning they did not breastfeed in the first week) and how a doctor noticed that the children with the highest chance of surviving were the ones that did get the colostrum. If I’m remembering correct, this doctor helped lead Japan to the lowest infant mortality rate at the time (the 70s or 80s? I just can’t remember) by focusing on getting babies that first week of nursing.
It’s amazing, actually, to think she’s been in this arena for so long. You see books and hear people say that there is no actual evidence that breastfeeding is that much better than formula, but a story like that helps you realize that it is indeed a life-saving practice for some kids. I think that when the odds are stacked FOR a baby, by being born into a developed country to wealthy parents (wealthy compared to the world, I mean, not that the parents are millionaires by American standards), then maybe breastfeeding doesn’t seem as necessary.
But to be her, to have been around when kids DID die because they needed the mother’s milk and artificial formulas (inferior to human milk but better than dairy milk or solid foods alone) weren’t as highly developed, really does give a perspective– an appreciation– for how far we’ve come in understanding how to help our children be their healthiest.
She also talked about how rapidly children are changing, though didn’t attempt to tackle all the reasons. How there are now sensory disorders, food allergies abounding (that one I know about!) and suicide rates among teens rapidly rising.
She cited a study in which is showed that some children learn better while standing, as opposed to sitting, and then the conversation turned to how schools must adapt and change to change to how our children’s brains and development are changing. We don’t know why things are different than when she was raising kids, but she seemed to be saying that she is optimistic—that schools and old viewpoints about how to raise/educate children must and will change because they have to.
She hinted that some of her perspective might be that both parents seem to need to work to survive in our economic climate and that it is affecting our children’s early years.
Stress hormones have been studied, and children that release high amount of stress hormones in the first two years of life deal with stress differently throughout their lives. Could this affect the suicide rates and unhappy and unfulfilled adults that seem to be all over the place?
When a child gets stressed from separation from its mother, it appears that it will always have an impact on that child. Of course, Azita stayed with a sitter from 6 weeks of age to 2 years, and I do feel it affected her. But I can listen to this research and these ideas without feeling guilty. I nursed her for a long time, and we let her co-sleep. To me these solutions helped us deal with the realities of modern life. And many moms don’t know, because of doctors and mothers and uninformed friends, that these practices can be safe, healthy and extremely beneficial.
I was aware during that discussion that these concepts, of the research that is becoming widespread about how the way we’ve been raising our children in this country may harm their stress coping mechanisms and emotional attachments to other people they meet throughout their life time might make people feel defensive. Might make people feel defensive out in the mainstream world, that is. In the La Leche League bubble, there is little judgment, and mutual respect for doing things the way that works for your family, balanced by respect for the child as a fellow human with valid needs.
When a parenting aspect, like co-sleeping or toddler nursing respects both the mom and baby’s needs, then it’s probably a good idea, in my head.
She talked more on the economics stuff, saying that in her day when a husband was having a child, his employers typically gave him a raise. Now, we must decide whether or not the mom will keep her job and how to afford it all, or, alternately, how the mom (and sometimes dad) will raise the children on her own on one salary.
“There must be an understanding of what the baby needs,” she said. I interpret what she is saying to mean that our society does not value the child enough anymore to try to help the mother be there for the early years of its life. Mother’s wishes are often ignored in the delivery room, she is not offered good lactation support by hospital nurses, and then she is encouraged to try to make the baby independent from her as soon as possible after birth.
There were many interesting studies discuss and as I go through my notes I may post about them. Don’t have citations, but I’ll bet they could be found.
Lastly, she gave this quote by an economist Hazel Henderson “Economics is not a science, it is politics in disguise.”
How many things do we think we have to buy when we first have a baby? I was told I “had to” have a swing, and a Boppy (nursing) pillow, and a little mesh feeding bag, and a good stroller. Azita hated almost all of those things, and I didn’t find the Boppy pillow that helpful. They each have held a useful place in my raising two kids, but I think her point was that the one thing the baby actually needs to develop best is just the mom, and that’s about it.
We shouldn’t make parenting choices based on our economic conditions or the motives of a corporation. And we have to wade through so much information. But being true to your kid tends to help you wade through the junky parenting books and find the good ideas.

Next post: Azita the perfectionist.

Great Expectations

Yesterday I was talking about when a child has a very public tantrum, or simply is upset in public. It’s harder sometimes to handle things with your heart when you feel the ridicule of others in your head.

I have been lucky that on occasion people have voiced their opinions to me—their supportive opinions—as I mentioned yesterday. Offering a bit of validation to a parent trying to bring their child back from the brinks of over-reaction can be a wonderful gift for the parent and that child.

I have noticed that Azita’s worst upsets are when an expectation has been unmet. Kids expect the world from us. I think they expect us to be infallible at times. So when an adult does something that messes with her expectation of how she thought something would go, it really shakes her and sets her off. Such as, when she was abundantly happy she was getting a “baby” watermelon at Sam’s Club and had asked me to let her give it to the clerk. Then another clerk walked up to help, grabbed the watermelon from the cart, and it was “booped” (to quote Azita) before anything could be done about it.

I felt them looking at me while Azita freaked out to the nth degree. But I stayed calm and handled it how I felt I should. In minutes in the car she was calm. I asked her what I should do when something has made her that upset, and she told me to just take her home. I think I’ve mentioned this story before, but this time, my point is that the people that may or may not be judging you do not see how you handle it at home. They don’t know any of that, any more than they know if a child that gets yelled severely in public gets absolutely indulged at home. I know my kids have limits. Being genuinely upset about something and learning life lessons simply happens, and I refuse to be mean to my children over it.

Kin to public parenting is parenting around family. This one can be harder, because these are the people that will see you and your child again. A few weeks ago, we left my in-laws house around 7—we usually leave at 8:30. Azita has started school and was extremely tired and we need to stick to her new bedtime.

She ran away from me, cried, yelled, the whole nine. But she very clearly communicated “But I just wasn’t expecting to leave so early”.

So she shouldn’t yell at me, yes. So she lost it, yes. But isn’t the more important part there how clearly she was able to tell me her feelings?

Again, with her at least, it comes back down to those expectations. She flipped out because she thought we’d stay all night—indeed, we usually do.

My mother-in-law has an extremely hard time seeing my children cry. She tries to promise money and gifts when I am being “mean” to them, I imagine is how she sees it. That’s a whole different post about annoying things but what’s funny here is that the way I handle Azita may seem too easy to the random onlooker, and too hard to someone else! I put Azita in the car and I take her home. Hard not to lose your temper when your child is kicking you, sure, but I just put her in the car and go. That is what I do. When we were at home, she went to bed pretty easily.

Ada will have different struggles. When Azita is tired, and over stimulated, she falls apart. She doesn’t regulate herself well. When Ada gets like that, she sits down quietly by herself and plays alone. We will have different battles and lessons with each.

Which is a central theme in how I see parenting—know your child and treat her or him accordingly.

You often hear people say “You need consistency”. You do sometimes, but other times, I am an advocate of flexibility.

I know one child that is not allowed to cry when she is upset. I don’t know that that is what the mother was going for or not, but it is the result. When she gets upset about something, she is swiftly yelled at and a privilege taken away or time out or something. She cries, she get yells at. Nearly every time I’ve ever seen.

The mother was complaining that the child beats her head and does self-destructive behavior when she is upset and she doesn’t understand why. It seems clear to me. The child is so afraid of being yelled at for feeling however she feels that she tries to squash emotions whenever they come up, and this mom can’t see that she is causing it herself. I won’t do that to my kiddoes, people can think they are “spoiled” if they like.

Public Parenting

I was at the Asian store we frequent the other day and, as anyone with kids can well imagine, the girls saw something they wanted. The cool thing about our kids is that they get jazzed about seaweed and such at stores like that, but this time it was essentially a toy. There were packs of two plastic piggy banks. Each pack had a pink and an orange, or a green and an orange and the girls both wanted pink. Naturally, due to being brainwashed by mass marketing, they both wanted pink. Ada may have wanted orange, but Azita wanted pink.

At first I tried to help them compromise, about the colors, but I wouldn’t bend on getting two packs– I do NOT need four piggy banks forgotten about after the day is done, sitting in the corner of their room. But Azita did have a piggy bank she had received for her birthday that Ada had broken, and it seemed fair to let her replace that now as it has been months since I told her we’d keep an eye out for a new one. I’m generally against cheap plastic junk, but Ada won’t be able to break this one.

Azita was hugging my leg and crying a bit because Ada wanted the pink one. I decided, and I could have not done this either on a certain principle, to ask the owner if I could put two pink ones in a pack. He’s known Azita since she was pint-sized, and I felt like this was an acceptable time to ask this under this circumstance. He told me okay, but he wanted to talk to her about it. He told her she was the big sister, and needs to look out for her baby sister always, and asked her why she wasn’t willing to share the pink and orange one.

Azita didn’t answer him really. I told him that she impresses me a good bit of the time, and he agreed, that she is impresses him too. That was nice of him to say.

So while Azita had been crying on me, he looked at me and said “Hey, this is no big thing okay? Don’t worry about it.”

I immediately caught his meaning. All I answered was, “I in general try to understand what she’s feeling,” but we understood each other.

I’m willing to bet he’s seen more than enough young children get yelled at or worse for wanting something at his store. I admit it’s frustrating when your child makes a huge deal out of something that seems minor to you. But if I try to look at her point of view– Ada broke her piggy bank. She found a cheap one months later I was willing to buy. Ada then saw that one and, being 2, insists that she get to keep in the pink one and hold it. Azita knows that Ada often gets her way, and that we often expect Azita to be the more mature one, sacrificing her needs for her sister’s.

This was a time I felt it was reasonable to make sure Azita knows I put her first sometimes too. True, it’s a plastic piece of junk, but I also don’t buy her something each time she asks.

This could have gone the total other way, if I had been in a different mood, or if the owner acted differently. I have my ideals of how children should be shown how to stay calm, not be materialistic, etc. etc. I have my ideals of how they should be treated and taught to handle their emotions and not yelled at for them.

And when their behavior really gets to me and I don’t handle it right, it is often because of one or two things:

1 – I am irritable/tired/headachy and etc. myself

2 – I am in public

How often to parents react a certain way because others are around and they are second guessing their reactions, feeling the judgments of others? This man actually does a service to kids by trying to help a parent feel relaxed about their child’s display of emotions.

Something similar happened at the Farmer’s Market once, when Azita was just three. She was getting upset about something– wanting to buy something or leaving– I can’t remember. And I sat down at her level and looked in her eyes and tried harder to explain why I was making the decision I was. A farmer told me “You are a good mother.” He didn’t say anything else. But it was that same feeling— that he was expecting me to start snapping at her and throw her in the car. And yes, I’ve done that too.

On occasion (thankfully not too often) Azita will really get upset about something, inconsolably upset, and I have no choice but to simply remove her from the situation. What’s funny is when she is at her worst, sometimes I’m at my best and *am* able to stay calm and leave with her… but not always.
I have felt myself recently losing my temper with her, or at least getting close, at a Baha’i Virtues Class I take the girls to. I will have to make a post on some of the quotes that guide the Baha’i viewpoint on parenting and educating children, and you’d see that that is one very safe place where I can let Azita be who she is and try to help her with whatever it is that I’m not happy about or she’s not happy about.

So I think back—what makes me uptight in that situation? Is it because it’s a situation in which I feel insecure and wonder about the judgments of the other parents? It shouldn’t be, but that’s a very likely possibility. Being aware of why you handle something with your children the way you do is important, I think.

Public parenting. Do what you feel is right. Don’t worry about what someone else might be thinking. Are their feelings more important than your child’s? I’ve felt the stares on my back when Azita is going nuts over something that seems unimportant. It’s more important to me that she remembers I tried to honor her feelings, that she knows her feelings are okay, and that she doesn’t bottle them up in the future, when I need to know how she feels to help her through the next stage of development.

Breastfeeding and negligent pediatricians

Each time I think that I might be exaggerating the fact that many doctors might be hindering a woman working at breastfeeding, someone tells me an anecdote that reminds me that many indeed are. It reminds me that those of us who successfully nurse our kids through thick and thin are not being overzealous when we feel that we need to share our knowledge with other mothers.

After the birth of my first child, I was so bursting with the desire to connect with other moms that had worked through and made it to nurse a child for a year, or at all, I probably seemed a little over the top. Fortunately, I found La Leche League and went to the groups and met other moms and got the support I craved. Now I’m a La Leche League leader, which gives me the avenue to help other mothers that want the help. It’s nice when someone who needs support calls you to get that support, and you aren’t just talking about nursing at each and every play date like a mom with a one-track mind.

I know some think that an LLL Leader, or any breastfeeding advocate, is at best unnecessary and at worst, trying to make mothers feel guilty when breastfeeding doesn’t work out. Of course, both of those extremes are far from the truth. Women run LLL groups to provide a place for mothers that seek information and support to get it, and we, at our best, remain unbiased and kind to a woman’s decision. We affirm a woman’s choice to do as she pleases; our goal is simply to make sure she had the most information possible before she makes her decision.

The conversation provoking this post was one from a mom pregnant with her second child. She told me that her first child’s pediatrician told her that she must wean when she contracted thrush, a common breastfeeding issue. He told her there was no medication compatible with breastfeeding. This is far, far from the truth as I can think of three remedies off the top of my head that moms use every day. She told me her tricked her.

I responded, as I should as an LLL Leader, in an unbiased way. I told her that unfortunately many doctors are not trained in breastfeeding and simply have a lack of knowledge. Then she revealed to me why she felt “tricked”. She went to the next appointment and told him she was unhappy with his advice and she had wanted to continue nursing, and had found after her milk dried up (and she got mastitis from the abrupt weaning) that she could not get him back to the breast. Her goal was to nurse for one year, and she got a mere month or so.

She undoubtedly felt betrayed and unsupported by the person she was paying money to trust with the health of her baby.

He told her “I just generally don’t like breastfeeding, so I always just advise woman against it.”

Yes, that is the moment that validates all the advocacy and informational events I will ever do. We are here to help women like this, essentially victims of a bad, bad doctor. A doctor whose personal biases caused a woman recovering from childbirth an infection and lost her baby 10 or 11 more months of antibodies and a unique way to bond with its mother.
Breastfeeding can be a touchy subject because anything that makes someone not fulfill a goal, especially when it comes to mothering, can make someone feel angry or guilty. Even if the information is shared in an unbiased way. Anger comes from guilt, and guilt is a terrible emotion when it comes to doing the best for a child. A woman that makes an informed decision, and stops breastfeeding but feels confident about her decision, won’t have that anger and guilt towards breastfeeding advocates.
Luckily, in this case, the mother’s anger and upset is pointed towards the appropriate place—towards a doctor who gives bad advice on purpose. How many kid and moms has he hurt, I wonder. This is why LLL Leaders do what we do. It’s why we run groups, and give out flyers to pregnant moms we meet, and run informational fairs.

Azita’s first day of school

Azita’s first day of school. She’s ready, I’m ready… there was little anxiety on our parts besides the natural amount. Many people asked how I felt, I think expecting it to have been difficult. I feel mostly just proud. It was hard on Ada and Payman, actually.

I’ve also done my groundwork and met with the teacher and a representative of the county about food and chemical sensitivities, so I felt fine about that. Azita did complain of a tummy ache today– what she sometimes complains of when she is exposed to a chemical smell or substance that doesn’t agree with her. But we won’t jump to comclusions yet.

In the car this morning Azita was assuring Ada that they would play when they got home. When I took Ada out of the car seat, I told her we’d be leaving Azita at school and she burst into tears. During the day, she’d hear a noise and say “It’s Azita!” and I’d tell her that Azi is still at school, and she actually said– in her two-year-old voice– “that’s horrible”.

Not only is it horrible, it inspired this shot, better than the grumpy face one I was going to use:

I wasn’t worried about Azita. She’s much more outgoing than I was. I remember clinging to my mom and needing to be distracted by coloring a ball so she could leave. Azita got a Cinderella picture to color and the boys got Toy Story pictures. Has the marketing of gender specific brands increased since I was a kindergartener, then?

I also remember not eating lunch for the first week of school because I didn’t know where to find the silverware and I was too shy to ask. Azita is hardly cripplingly shy.

The boy was looking for a gray, and Azita went right up to the teacher and said “He needs a gray. Do you have one?”

I wasn’t surprised when I picked her up and the teacher told me she was a little too talkative. That was the most anxious part of the day– waiting in the car line for 20 minutes, knowing she’s 50 feet away or so. Her little face was so excited when she saw us. I didn’t park to go get her sooner because Ada had fallen back asleep in the carseat. She’d been woken up for the second time during her nap to pick Azita up. Maybe a decent bed time will be in the cards now that Azita has a strict schedule.

Here is Ada, trying to stay awake as we drove to pick up her “sthither”:

And finally she drooped as we waited in line:

Ada’s Health Status Update

Long post this time– making up for how busy we’ve been. Story deadlines, trips, dishes to do.

This week Ada saw her pediatric gastroenterologist for the first time in six months and her allergist for the first time in a year– both at Duke Raleigh Hospital. It’s nice to live in a state with medical research institutions an hour or so away.

We figured out Ada’s issues with gluten without them, but it is nice to have practitioners that see more special cases to balance your own research and observations about your kid’s health with.

Ada is now in the 50th percentile for weight, and the 50th percentile for height! That is huge for her. At her first Duke appointment she was 12 months old (she is 2.5 now) and was at the 7th percentile– she dropped to the 2nd a few months after that, when I was figuring out that she can’t handle cross contamination. It is fine to be small, but she also looked frail, with deep circles under eyes. I don’t like a baby’s health—especially a breastfed baby’s health—being questioned solely on the basis of a weight chart. Yet I had to admit that Ada was a special case. She didn’t drop in the third or fourth month, like many breastfed babies do but some doctor’s don’t realize, and bounce back up. She went 50, to 20, to 7, to 2, to 8—from birth to 18 months.

The doctors of course were very pleased with that growth, as were we. Glad to know I wasn’t imagining that my arms are getting more tired when she wants to be held at a store than they used to! She gained 4.4 pounds in six months.
I recounted the same basic story for her two different doctors. Her remaining symptoms involve throwing up every week or two, not going to the bathroom for 5-8 days at a time, and skin bumps that sound like keratosis pilaris that just cover her back and tummy that happen simultaneously with the other symptoms.

Essentially, I’ll spend a few weeks really focusing on her diet. Making sure she gets her fiber naturally with greens, her probiotics through homemade sauerkraut and other fermented veggies or store bought coconut-yogurt, and not eating out or trying anything new, at least. She’ll go every day and I’ll be very encouraged.

Then we’ll eat out—try something new—or feed her certain GF brands that seem to bug her. She’ll be doing well and I’ll think I’m overthinking her food issues.

For instance, she’d done well in June in regards to those symptoms. July 2 I think we ate out at a restaurant where the fried food was overly abundant and there must have been tiny crumbs around—it seemed there would be, at least.
She threw up that night, didn’t go for 9 days, and had bumps covering her back and tummy for at least a week. This pattern seems to repeat itself. I discussed with them how I’d introduced goat cheese and tofu and she had bumps after the soy and more constipation after the dairy, so we are still happily free of those things until we can trial it more clearly.

I was a little surprised at the gastroenterologist’s reaction. She said not to worry too much about the throwing up and that some kids just do that, and have tricky gag reflexes. Ada definitely has a tricky gag reflex, and I used to before I was gluten-free, but I know many people that say their gag reflex calms down when they discover a food intolerance.

She also said that some toddlers withhold and seemed to focus on that she’s gained weight and that that worry has subsided. She said we have been searching for a reason for her digestive issues for two years and never found one, so to not worry about cross contamination from wheat and her throwing up after restaurants.

It’s true that toddlers sometimes withhold, but I can’t escape the nagging memory that Azita used to withhold like crazy and stopped doing it about 3 weeks after we went gluten-free.

So, I do not really agree with her assessment. But I’ve tried to think about it detaching emotion, and I could see her point of view, perhaps. She has checked Ada out with an endoscopy, looking for villous atrophy, physical issues, enzyme secretions and eosophilinic esophagitis. It’s all healthy, and she’s gaining weight– so in her estimation, from what she can see every six months for 30 minutes, Ada is healthy and made many gains. But I wonder if it was her child throwing up all over the couch for unexplained reasons, randomly, every week or so, would she feel the same way? Maybe she would– she mentioned how her toddler eats only whole wheat bread and green beans– and we all know how I feel about picky eating as a sign of food intolerance!

Anyhow, that’s fine. That’s her opinion and I know she means it well. There is merit to the fact that Ada has made huge gains and exudes health in a way she did not when this doctor first met her.
About 30 minutes later the appointment with the allergist started, and I told the story about symptoms increasing when we eat out or go places again.

I thought he had been skeptical about Ada’s skin bumps being related to foods, but this time he didn’t seem quite as much. One thing I always like about him was that he is one of those doctors that make you feel like he really is listening to your individual story, and taking his time to speak with you. That really should be a given for any doctor, but isn’t often the case.

He seemed to really take the vomiting that often seriously. Sheesh—I shouldn’t have to think I’m nuts for thinking it’s odd that my kid throws up all the time! I mean, if a two-year-old knows how to speak about it and knows all the words to describe it, they do it too much!
He said no, it definitely is a symptom and is not normal.

Interesting, isn’t it? The way a doctor can make you question yourself or make you feel completely validated.
I actually said, “So am I just crazy? Or is it really possible that she could react to crumbs and smudges on doorknobs and tables?”

He said that it is plausible. I was questioning whether or not I should trial wheat with her to decide for once and for all if it really is an issue, and the appointment reminded me that I already know that.
“So symptoms are enough?” I’d asked.
He said yes. I think he was getting at that it’s about patterns. If she’d had a year with no issues, then, sure, trial it. But if she stopped throwing up the week we stopped eating wheat and she gets sick when we are uncharacteristically in places where it is, why trial?
He made an interested point about amounts. He said that tiny amounts do cause reactions. It might not be the exaggerated reaction— kids don’t go into shock from whiffing a peanut all that often—but that doesn’t mean there is NO reaction. The goal is no reactions, I think. But there is a wide range between no reactions and the worst reaction possible. I think his message was, it’s OK as a parent to tell people that she will react from trace amounts, but I don’t need to act like she will die from it—which Ada wouldn’t, b/c that isn’t her reaction anyway. But he must come into contact with really paranoid parents. I can see how they get that way, though.
He said, and I liked this part too because it’s what I’ve always felt, that we may never know the mechanism that causes Ada’s particular reactions.

She will probably not get a true celiac diagnosis because she isn’t eating gluten. She doesn’t seem react along IgE-mediated pathways, and other immunoglobulin pathways are less studied and less tested for, with some doctors regarding them less significant and some that give them more credence. One of the immunoglobulin is tested for with gluten, but again she isn’t eating it. Some people have ‘total Ig*’ tested for, but that still doesn’t tell you why or what your immune system is reacting to. [an immunoglobulin is a protein created by the immune system and they are named IgE, IgG, IgM and et cetera].

People also have different thresholds which trigger a reaction, another point that has been important to understand for our family. He said that one person’s intolerance might be because of small amounts of an enzyme (like lactose intolerance) and so they can tolerate a bit more or less than another person, specific to their body.
With Ada’s case, whatever the physiological reason for her reactions, there may be no threshold at all.

So to me, these ideas kind of make me not care about the first doctor’s assertion that “well we don’t even know if she is actually celiac.” Really, it doesn’t matter. Gluten intolerance isn’t less serious than celiac disease. Her allergist focuses on symptoms less than the fact we don’t know medically why she is how she is. I’m sure the other stuff is important to his assessments as well, but I like focusing on symptoms yet knowing the possible science behind it. It keeps the focus on the person who is suffering. Many points he made were things that I already knew, but it’s nice to hear some confirmation.

I have to be careful to stick to places that are safe for her to eat, and trying new things that *should* be safe still seems to get her into tummy trouble.

Nervous stomach and foods?

In the last post I mentioned Ada’s sypmtom of throwing up every few weeks.

As her tummy has healed on a gluten free diet, her health as improved steadily. Her symptoms stuck around, taking a year to fade. Bowel symptoms, rash/red skin in the diaper area, skin bumps, cradle cap, vomiting, slow weight gain– all have gotten better. Yet, she does still throw up once every few weeks. Her dentist asked if she did that because she was nervous, and it really annoyed me. In my last post, two friends of mine reminded me that sometimes that is the reason, even if it isn’t Ada’s reason.

I started to think about it. Why did that particular detail stick out in my mind? When something that isn’t that odd of a question makes you bristle, I think it’s worth examining your feelings.

And wouldn’t you know, everything can totally be blamed on your mother-in-law.

She has mentioned several times, though I didn’t realize it at first, about Ada throwing up because she has a nervous stomach. She has also insisted that she throws up because she eats fruit. Not because of the acid, not because of well-known intolerance like oranges or strawberries– just fruit in general. We think if she had her say, the kid’s would be raised on healthy food like McDonald’s and store bought pastries. Note the sarcasm.

She herself suffers from vomiting (I really detest that word but I can’t tell you why) when she gets emotionally upset or nervous. Her esophagus starts to itch and act funny. I have met many other women who have told me that their anxiety attacks and similar symptoms went away when they went on the elimination diet for their kid. One that says if she ever eats soy, she gets an anxiety attack again. But as long as she doesn’t eat it, she is emotionally stable and happy, within the normal limits of life.

Payman’s mother stopped eating gluten and dairy for 2 months last year. Besides losing weight, her anxiety and emotional ups and downs were clearly affected. She usually talks to me about her nervousness and vomiting on a regular basis. For those two months, she didn’t. We were overjoyed and just wish that it had lasted.

Stress clearly affects us all. I do believe even the AMA had an article about how 80 percent (that’s a whopping amount) of our immune system function is related to our stress levels. And in some of us, that stress my manifest in nausea or vomiting.

In her case, it does. But then why does it get so much better when she’s eating a healthy diet (and for her, we do believe that gluten-free is a part of a healthy diet, though she eats so horribly it would be hard to tell)? And why do I know someone whose anxiety attacks are triggered by soy? There has not been an absense of stress in her life since being soy-free, actually… she’s been through quite a bit. It’s a blessing that she figured out something that helps her food wise to cope with that stress.

My theory is that for some of us, the food intolerance makes our bodies so taxed that the stress pushes the body over its limits and it reacts in a harsher way than it might if we were avoiding the food that also stresses the body out. I guess from knowing someone that seems to blame stress for all of their health difficulties, when the solutions to those health issues are plain to see to me, it makes me question the “nervous” stomach idea. But I do remember that not everyone is like that, or like Ada. But my family and the other moms I’ve met with similar experiences can’t be the only ones.

I find it amazing that someone actually chooses stress in return for eating all the junk they like.

This link discusses finding triggers for a nervous stomach, but doesn’t go into much detail, and doesn’t sound quite as severe as some people describe it:

http://www.livestrong.com/article/29183-control-nervous-stomach/

And here’s another link where someone discusses their nervous stomach and is diagnosed with IBS and finds that eggs, dairy and meat trigger it. I’m getting the impression that some people use the term nervous stomach to describe IBS-type symptoms, while others use it to mean more specifically a very stressful situation triggering vomiting or nausea. I wonder if that is part of the confusion I get when people are trying to talk about Ada’s issues with me.

And then, here is the link that I believe affects my family members— mental health and gluten–

http://www.empowher.com/healthy-eating/content/gluten-intolerance-anxiety-and-panic-attacks

It looks like there are some good links at the end of the article I’ll have to make time to look at.

This concludes my inconsequential thoughts for the day.