I have been giving a lot of thought to what I would like to become of this blog. One thing that is clear to me is that I still want to write, so I am hoping I can hit upon the proper inspiration. Maybe a bit of change will help… what do you think of the new format and visuals?
Bear with me as I feel it out a bit (and thanks for your patience and input).
This blog has been on an unintentional hiatus. I haven’t been inspired enough enough to write about the many (mostly mundane) things I’m dealing with lately. The biggies are behavior issues and food allergies, and while I’ve been hoping that the food allergies would fade away or become a non-issue, it appears that they will be around for the long haul.
We are in a state of flux on some fronts right now, and think that how things turn out will change the focus of what I write here. More to come after March 12.
Grandma gave my girl an Easy Bake oven this year, along with some gluten-free Betty Crocker mixes. She also got a GF alternative-flour baking mix that had a coffee cake recipe on the back, and of course that is what she actually wanted to make.
Tonight, we had “breakfast for dinner” and she was all fired up to make coffee cake “for everyone!” With a knowing grin (an Easy Bake pan is about 4″ across and 1/2″ high, barely enough for a couple of little servings), I walked her through the process. We customized this “crazy cake” recipe (substituted Hodgson Mill’s Multi Purpose Baking Mix, reduced the sugar to 1-1/2 tsp., and added a sprinkle of cinnamon), and voila! She was a very happy camper. She says that she will be making something for us every day from now on.
For anyone else who might try this, it appears that an Easy Bake oven pan will hold about 2 Tbsp. of dry mix (which requires only a few tsp. of liquid). As we experiment, I’ll post tips on how I divide up larger GF mixes into Easy Bake portions.
Our girl stopped sneaking gluten-containing foods at school about two weeks ago. It helped smooth out what had started as a very rough school year for her.
After over a week of great “green” days– and it was SO nice– it all went to hell.
On a field trip on Tuesday, she scored and ate a few Nilla W@fers from a classmate, and also a Clif bar, despite having an overflowing lunch and snack bag full of all kinds of great choices. Since then, she’s had major tantrums and uncontrollable tears. Screaming at parents who work in the classroom and dare to suggest that she stop reading and join the class or ask if that food choice is really something that is gluten-free. She’s having a hard time with the basics (like feeding herself at lunch time), which of course can make anyone cranky.
So, I continue to struggle with how to best support her and her unique biology. I have started a visual calendar at home where we are tracking what she eats (or days when she chooses not to eat) and how she feels that day, and how easy or hard it is to stay calm and control her behavior. I’m trying to show her the pattern that I have seen emerge after she ingests gluten, and I think she’s starting to “get it” (even though she seems embarrassed and doesn’t really want to admit that there might be a problem tied to the foods she so desperately wants to eat).
My husband and I are taking a P.E.T. class (Parent Effectiveness Training) and are working on our active listening skills. It is good timing as we are putting our news skills to use daily.
My daughter returns to school soon, and I have been motivated to continue testing the allergenic foods to see what she might be able to tolerate during the upcoming school year. Parents have a rotating schedule to bring snack for the class, so this is always a tough balancing act. Last year, I sent her with snacks and lunch every day, and it worked out mostly well.
Most parents in her class bring a snack heavy on dairy: cheese sticks in many flavors or those damned neon-colored and full of artificial ingredients Go-gurt tubes. Trying to explain gluten-free is a futile effort with some people, while with others they are simply amazing and really do “get it.”
Glutinous foods are definitely out. Miracle Girl’s behavior issues crop up within hours, and it ain’t pretty. We didn’t notice a significant change for Charming Boy, but my knee-jerk response was that it wasn’t worth keeping him on gluten long enough to see.
Egg seems fine for Miracle Girl, but Charming Boy still sprouts a skin rash and seems to become overly emotional and cranky. Dairy is our current food trial.
Miracle Girl appears to be fine with it (cheese and yogurt have been attempted in the past week), and Charming Boy sprouts a vicious face rash very quickly. So far, he’s only had one cheese stick and simply by accident at school, a small drinking yogurt. We were relieved that he didn’t get the loose stool symptom that he’d had previously with dairy, but he definitely bloomed with the face rash around his mouth each time.
We haven’t tried fluid milk products and I’m not sure I’m brave enough to try that yet, especially for the boy.
So, we are trying to decide if we continue to keep them both on the same diet (yes to eggs, no to gluten, possible yes to dairy; makes each feel like they have a partner when they each share the same foods), or possibly customize each diet to allow the foods that work for each body.
With only days left to the first day of school, we need to decide. And soon.
I am going to a new Chinese medicine clinic on Thursday, ad plan to ask if they can do pediatric acupressure; we would love to see if it can boost her focus and reduce her food allergy behavioral symptoms with these simple treatments.
A whole new year, ripe with possibilities. As excited as I was for the break summer time would bring from the whole intense school-year routine, I am just as grateful for the end of summer. While some things have changed, some of the things that I hoped would change, didn’t. C’est la vie, eh?
We have been trying gluten-containing foods for a week now, and we have noticed a hugely negative response from Miracle Girl. She is so self-absorbed that she ignores us most of the time, she can’t help but blurt out anything that pops into her head (even when someone else is already talking to her), and she is vastly more emotional. She says her tummy hurts every day, again. It is a big regression to a place we have rarely been to this degree in recent months.
Charming Boy is a bit more emotional, but it could just be a side-product of seeing his sister upset so much.
As hard as it is to keep to the gluten-free diet with kids (and expensive, to boot), dealing with her anti-social and downright rude behavior is just too hard on our family. When she is off gluten, she recognizes her poor choices and at least actively tries to regular her emotionality. On gluten, it’s unbearable to see how far away she is from reality and how she is utterly unable to stop herself. It’s like we’re all on a never-ending roller coaster ride to hell.
Sounds like the gluten-free diet is worth the trouble after all! 
—–
One thing I said in my last post was that I believed IgG allergy reactions were the anaphalactic kind, and I was WRONG. Our pediatrician told me that the kind of reactions that our kids have to trigger foods are IgE mediated, and that those are the kind that can turn into life-threatening reactions.
But, she also said that the skin rash Charming Boy sprouts withing a day or two of consuming egg is okay, and she’s okay with him continuing to consume egg unless we see something else come up. Either he will outgrow it, or given his history of food sensitivities, he might develop other more typical allergy symptoms, like asthma or seasonal allergies.
Oh, that’s just great.
Once things normalize after removing gluten (again), we are going to do a dairy trial next. I am hoping that Charming Boy will be able to tolerate at least cheese and yogurt now, but don’t really have any facts to bolster that hope. He’s been horribly sensitive to it since he was born, so… we’ll see.
Channeling the Tootsie Roll Tootsie Pop owl from that commercial (“How many licks does it take to get to the center of a Tootsie Roll pop? One… two…. [crunch] Thhhrrreeeee!”)
My wee tiny baby boy is a full-fledged preschooler. We just celebrated his third birthday with family and friends, and he is so unique from his sister that some days I am just dumbstruck at the difference. And, to be honest, I am relieved to have one “easy” child who simply radiates love and happiness and fills my emotional reserves well beyond the brim. Even though we determined long ago that the twos were really not all that terrible when compared to the threes, he is still a tremendous joy to be around.
Other than a pretty hellish sleep regression that hit hard in April, he has been doing very well. His balance, coordination, and fine motor skills are far beyond age level. He counts to 14, knows all his colors, and is recognizing letters. He is able to display logic and reasoning skills that floor me. For example, this morning I told him that he would be taking Daddy to work. He looked at me very matter-of-factly and said “No I not. I’m too little to drive the car.” “No, of course not. You will be going with Grandma to take Daddy to work.”
The biggest milestone for him this year is a huge leap in weight gain and height. He gained SIX pounds this year on the special diet, bringing him for the first time onto the bottom of growth chart (he has been in the -5th percentile for height and weight since he was born). He also gained several inches and is now 35+ inches tall, and is in the 10th percentile for both measures.
While I don’t put much stock in comparing him to other children with this chart, I do find it enlightening that compared to his own history he has made big increases. I hope we’re doing the right thing by trying out the allergenic foods again.
Charming Boy, you are my bright and shining sun, just as you were when I was newly pregnant again after SIF and so terrified of losing you. Each day you reassure me that you are perfectly fine in this world, just as you did so many times before you were ever born (and I was petrified anyway). Baby Ray ‘o Sunshine, you are a most wonderous blessing and I am so lucky to share life with you.
We began re-introducing egg into our kids’ diet this past week. Charming Boy quickly sprouted a skin rash on his face and the backs of his upper arms. This is the reaction he formerly showed for the casein (dairy) allergy.
Very upsetting. He has professed his undying love of eggs, and will be crushed if we have to take him off of them again. This was not something I expected, and I need to figure out what we are going to do now.
One idea is to see if I can find a pediatric acupuncturist nearby, one that will use the little beads under a band-aid instead of needles. A couple of friends have had very good results with this type of treatment.
We are also going to ask the ped about getting a traditional skin allergy test for both kids, though from what I’ve read, the false-positive rate is about 50%, whereas a negative reading is about 95% certain. The serum test from last fall that C.B. had the highest possible IgE reaction to eggs and the protein in all glutenous grains, followed by high reactions to casein. From what I understand, IgG is more of an anaphylactic, life-threatening reaction, while the IgE is more of a skin/lungs/digestive tract reaction; it is therefore not much of a coincidence that C.B. tends to have skin rashes, croup, loose stools, and had reflux (digestive tract issues) his first year of life.
I had hoped that 10 months on a completely egg-free, casein-free diet would have allowed his body to heal enough to tolerate these foods again.
I had really been hoping to have our family back on a normal diet by early summer. My mind is overflowing with expletives!! Time to re-evaluate.
WWYD? If the skin reaction was the only obvious sign to an allergen, would you pull it out of the diet again? Is the obvious culinary pleasure he showed with the food worth the skin rash? I can’t believe I’m seriously on the fence about this.
One of our favorite preschool teachers had her last day at school on Friday, and was heading home to Iran to visit. I was worried that she might have been caught up all the chaos that Tehran has been experiencing since Saturday, so I called her to leave a message.
Fortunately, she has not left the states yet, so I was able to talk with her. She said that due to the forced cell phone outages, she was not able to get through to her parents for three days to make sure they were safe (they are). She said she is not worried about returning home during a potential revolution, as she participated in demonstrations and events previously, so it’s not that scary to her. Cell phone calls are being limited to five minutes.
When I asked for her perception of the government corruption that is being exposed during this election cycle, she said that the election results were announced a mere two hours after the polls closed, and that the ballots had all been hand-written; there was no way all the votes could have been counted! One of the candidates was announced to have zero votes in his favor, which that candidate immediately protested because he knows that he voted for himself!
One other sign of blantant corruption: she said the “election results” were forwarded to an “official” source, saying “this is what we are going to announce” even before the votes could have been counted.
Iranian protesters are hoping the U.N. will step in to help, but she had no idea if or when that would happen.
Another friend alerted me that the best way to stay tuned to what’s really happening is to monitor Twitter feeds coming out of Iran (search on #iranelection). The pictures and stories I’ve seen pouring out of that country are quite astonishing. I also applaud YouTube for leaving up videos uploaded by protesters in an attempt to preserve “their documentary value.”
While it remains unclear if this situation will turn into the political revolution many have hoped for, I do pray for our friend’s safety and for those that seek a true reporting of the actual election results.
We started the food allergy diagnosis saga back in August 2008. Both kids have been on pretty restrictive diets since the beginning of September (no wheat, gluten, dairy/casein, or eggs; each child also had individual sensitivity to random stuff like almonds, peanuts, coconut, green bell peppers, and more).
We have completed one round of antibiotic treatments for intestinal parasites and one long round (three to four weeks) of antifungals for the colonized yeast infections. The kids each received four sets of supplements per day (two rounds of probiotics, two of vitamins and omega 3s and other customized supplements). It took me at least an hour per week to pre-measure everything into individual little plastic lidded containers (my sanity saver, instead of spending a half-hour each day doling out the same stuff over and over), in addition to the time spend mixing each supplement and following the dosing schedule.
Charming Boy was ill nearly every two weeks throughout the winter. Many of those illnesses required antibiotics to conquer. Most of his dietary supplements focused on improving his immune sytem (zinc, vitamin C, plus at least three other immune supplements).
Miracle Girl had a rough time with diet modification, especially in school with daily snacks brought in by rotating parents who are not always especially concerned with nutrition or appropriateness of snack choices (hello, chocolate-covered pretzels?!). She became a champ at swallowing pills, and learned to just down her smoothie-style supplment drinks with no complaints. I am really very proud of her for that. Most of her supplements focused on improving her volatile and socially-clueless behavior (providing neurotransmitter support).
Charming Boy still exhibits his same milk-allergy pattern, but his immune system is very strong now. He has been able to bounce back from illnesses (like croup and conjunctivitis) within two days with no antibiotics. This is a HUGE and welcome improvement in his health.
We have just finished another round of testing for Miracle Girl to see where she is at in terms of intestinal yeast overgrowth. There is evidence of a lingering stage 1 yeast overgrowth (the most mild form), despite all the diet changes and the long antifungal regimen. We will probably do one final antifungal round, then give most of the rest of it a break. She has tested negative for the celiac disease genes, so we feel comfortable in weaning her off the GFCF diet. We have held Tiny Boy back from reintegrating the foods until both kids could do it together (makes it so much easier that way).
Honestly, I had hoped to see a much greater improvement in my daughter’s behavioral issues. And some days are great. Maybe once a week we’ll have a really great day, and I recognize that as a clear improvement over basically never having a good day. However, I have dreams of having multiple good days strung together, with fewer outbursts and tantrums, more social awareness, and evidence of a general ability to focus and participate appropriately in the activites of a normal day. It does not feel like that is too much to ask for.
So, we have reached the end of the term I had promised my husband where we would re-evaluate the diet modification approach. It’s been nearly 10 months, and I am ready to wean the kids off almost everything. My sincerest admiration goes out to all parents who do this for a lifetime. It is fucking hard to follow 24/7, and you have to tailor your entire family life around it. We were lucky because our kids didn’t have anaphalactic reactions to these foods; I have friends who have to rush their child to the E.R. whenever she is exposed to even the tiniest amounts of gluten, egg, or dairy. For that distinction, I am grateful.
I feel a bit bitter that I followed this regimen so wholeheartedly and do not have clear results to show for it (for Miracle Girl; it obviously worked for Charming Boy). I am extremely grateful to our family who were so supportive of following the diet and dosing the supplements with us whenever we were together; toting bags and coolers of specialized foods and seeking out specialized grocery stores in nearby cities and states for trips where the kids went to stay with them; for scrutinizing menus and withholding some of the classic grandparent/kid destinations because there is nothing they could eat there; for being willing to learn and be supportive of our efforts, all in the interest of helping our kids.
My next step for Miracle Girl is to learn more about psychtropic drugs for people affected by ADHD. It runs in her genetic line, and it’s becoming clear that academically and socially she NEEDS something to help her focus and be able to reign herself in to participate in basic ways day to day. I have avoided this potential conclusion for at least two years. We will begin the ADHD evaluation process with our pediatrician. For every positive outcome I’ve spoken to a family about, I’ve also heard about the potential and serious negative side effects.
In one aspect, I look forward to a potential pharmaceutical trial. As a particularly astute friend put it, “popping one little pill every day has got to be easier than all the hours [and money] you put into the diet and supplements each week!” Probably a lot more affordable, too.
I wish it had not come to this point. but when I am completely honest with myself, I have to consider the “better living through chemistry” route, in case it is a step in that miraculous direction I’ve dreamt of for years.
| M | T | W | T | F | S | S |
|---|---|---|---|---|---|---|
| « May | ||||||
| 1 | ||||||
| 2 | 3 | 4 | 5 | 6 | 7 | 8 |
| 9 | 10 | 11 | 12 | 13 | 14 | 15 |
| 16 | 17 | 18 | 19 | 20 | 21 | 22 |
| 23 | 24 | 25 | 26 | 27 | 28 | 29 |
| 30 | 31 | |||||
