Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘allergies

Nuts!

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For a blog about Asperger’s, Allergies, and Adventures Abroad, I don’t talk much about the allergies.  Life with allergies is not fun.  Life with an autism spectrum disorder + allergies is terrifying.  And life with an ASD + life-threatening allergies + being abroad is a major reason I consume lots of comfort food.  Allergy-safe comfort food, naturally.

Things aren’t so bad in South Africa.  Food labels tend to adhere to the strict guidelines in the UK, so we generally know if there are hidden nuts in food.  There isn’t the same level of awareness and protection that we were used to in the US, however.  When we lived in Virginia, Pudding’s level of peanut and tree nut allergies automatically meant that her classroom was strictly nut-free.  Though she always had an epi-pen at the school nurse, she was reasonably safe and legally protected.  There are no such measures in her current school.  The staff received training from me on using the epi-pen, and they watch the children closely at lunch time.  I just have to hope that is enough.

We do our best to educate Pudding about the danger, but though she repeats the words back to us, we don’t know how much she understands.  Though we tell her she can’t share food, it may be no match for her impulsivity.     

Pudding’s blood tests reveal the highest level of peanut allergy, along with a cashew nut allergy also at potentially fatal levels.  She has never eaten nuts, so we don’t know what her true reaction will be, but be assured that I don’t ever want to find out.  I’ve lived with the same reaction to fish and seafood all my life, though I’m definitely not as reactive as I once was.  Nut allergies are known to worsen through the lifespan.

Today we got the blood results for Cubby, and imagine my surprise and delight to find that he isn’t allergic to any of the major allergens, including peanuts and tree nuts.  In fact, the doctor wants us to begin giving him nuts to build up his tolerance.

And here things get complicated.  We don’t have nut products in the house for Pudding’s sake.  He has been exposed to the same strict rules as Pudding all his life.  “We don’t eat nuts,” is echolalia I hear from both my kids several times a day.  I can’t undo our efforts with Pudding by allowing her to see Cubby eat nuts.

So my only option is to allow his school to start feeding him nuts, and put some faith in blood tests that aren’t exactly infallible.  Just another part of our adventures in Asperger’s, Allergies, and Adventures Abroad.  It was good news today, so why do I feel like saying nuts?

Written by Spectrummy Mummy

June 19, 2012 at 5:35 pm

Spectrummy Daddy

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Today is my wonderful husband’s birthday.  I could write about how every day he demonstrates the strength of unconditional love, but I can show you instead.  And I’ll show you how he never stops trying to connect with our girl, even when it is hard going.  I’d tell you that the world is a better place for every day he is on the planet, but you can see that for yourself.  Read on for the first guest post he wrote, and please join me in wishing him a very happy birthday.

……………

Hello, everyone.  Spectrummy Mummy asked me if I would like to do a guest blog, and I reluctantly agreed.  I’m kidding, I jumped at the chance.  Please don’t go visit another blog, I promise Spectrummy Mummy will return tomorrow.

When she asked me what I was going to blog, I had to think about it for a bit.  Do I talk about one of the greatest days of my life, when I became a father?  (And the German nurse in the delivery room that still makes us laugh.  Great story.  Really.)  Or, do I talk about how I cried when my pudding said “I love you Daddy” after she was diagnosed, because I was afraid she’d lose the ability to say it later on?  I wasn’t as well informed then as I am now.  She still says I love you daddy.  And then I realized what I wanted to talk about.

A daddy’s link to his little girl is always strong.  Usually there is something that is special between the two of them.  Ours was actually two things: weekend breakfasts and ice cream.  I come from a southern family that likes to eat.  We can all cook, and we like to eat good food.  Our love of ice cream and breakfast, particularly American biscuits, is passed down from generations like a good family history.  Proving that she was my daughter, pudding took to both of these items with zeal.  Every weekend I would ask pudding “What do you want for breakfast?”  She would always reply, “Biscuits and honey.  Bees make honey.”  I would smile, and make buttermilk biscuits for her.  We’d smile at each other, and I’d get a kiss from her with a thank you.  When we were out, if she was good, she was always promised ice cream.  It was always a treat from daddy for her.  “Pudding, what kind of ice cream do you want?”  “Strawberry with sprinkles” was the inevitable reply.  It was the pink ice cream, you see.  It was Pudding and daddy’s special thing, and something we bonded over.

When Pudding kept waking in the middle of the night screaming, we knew there was a problem.  When we took her to Dr. P, she suggested that perhaps we should take her to an allergist, just to rule that out as a cause.  When we received the results, my heart sank.  There it was: milk, oats, wheat, and all the others.  There’s your ice cream and your biscuits gone.  There was weekend breakfasts, ice cream treats, and the bonding I had with my little girl.  How was I going to connect to her now?  It was like starting over again 3 years later.

However, Spectrummy Mummy came to my aid when she caught me crying.  (That is also passed down in my family from generation to generation.)  With the wisdom of Solomon and the looks of a young Grace Kelly, she explained that this could be viewed as a good thing.  While we had previously connected by eating, a potentially unhealthy and dangerous activity if overindulged, we could now find something else to connect with.  So, three years after I first became a dad, I started over with my daughter.

Now, we swim together, and she does dog-pile on daddy.  When I get home, she asks to be put on daddy’s shoulders.  We have a variety of things we do to help with her vestibular issues.  Things like whip-saw where I throw her over my shoulders and spin around.   And, I am proud to say, she can point at my t-shirt with the Justice League of America on it and correctly point out Green Lantern, Batman, Aquaman and Superman.  She also likes playing with the DVD player (to my consternation) and with mummy’s iPod, just like her daddy.  Maybe one day she’ll be able to eat ice cream and biscuits again.  Right now, I’ll settle for fruit sorbet and gluten-free pancakes and hearing my daughter laugh when I tickle her, and holding her tight when she asks for a squeeze.

Written by Spectrummy Mummy

March 10, 2011 at 6:36 am

Thanksgiving Memory

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AutismLearningFelt

This week’s theme for the Special Needs Blog Hop is Thanksgiving Memory.  Now, as you might expect with me not being raised American (or Canadian), Thanksgiving is not a big deal for me.  I don’t so much like pumpkin pie.  Our first Thanksgiving was right after our honeymoon in Key West, so I decided to keep that going and substituted pumpkin pie with key lime pie.  That tradition has stuck with us ever since.  The first time Pudding had a taste of key lime pie, she fell in love.  We told her what it was and she immediately pointed to her plate and said, “More key lime pie, right here.”  We didn’t know at the time that she had such difficulties with spontaneous communication, but she has always been more than capable of getting her needs met when she is motivated enough.  Let me tell you, key lime pie is motivation enough.  After she finished her second piece, she promptly did this:

She is definitely a girl after my own heart.

Remembering this is bittersweet to me, because there is no way we can make a key lime pie without eggs, milk, and gluten, so the tradition won’t continue this year.  Unless anyone knows of a GFCF key lime pie recipe?

Written by Spectrummy Mummy

November 18, 2010 at 3:06 pm

GFCF Dilemma

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We have been (kind of) doing the GFCF diet for six months now.  We’re actually very strict about no gluten or dairy products, but the GFCF diet also eliminates soy, and we don’t do that.  Both the kids patch tested allergic to wheat, milk, and eggs.  Pudding also tested allergic or intolerant to several other foods, which have been successfully reintroduced back into her diet, with the exception of peanut and cashew nuts which we won’t do for a while.  At the last appointment with the dietitian, she asked how I felt about reintroducing the rest of the foods.  And I didn’t, and still don’t know how I feel about it.

When we first removed gluten, Pudding immediately slept better.  But over time, her sleep issues have returned, though they aren’t as bad as before.  And she has made improvements with her development over the last 6 months, but they have been gradual rather than dramatic, and I honestly can’t say that those changes are due to the GFCF diet, or her school program or other therapies.  I just don’t know.  When I’ve read other parental accounts of using the diet, they have always claimed dramatic differences.  The GFCF diet is supposed to be followed for at least a year, so part of me thinks I should keep going.  The more skeptical side of me says that if we haven’t seen sufficient changes on six months, it is not valid as a therapy.

I haven’t thought about stopping the GFCF diet, because it is fairly easy for us to follow.  Now that we have reintroduced rice and potatoes, the range of foods she can eat has increased greatly.  We can go out for a meal again- something that Pudding loves to do (I know, she is atypically atypical in that respect).  If we reintroduced the other foods, it would be even easier.  Pudding could go back to eating her beloved pepperoni pizza and ice cream.  She could play with regular play-doh, and share snacks at school.  I wouldn’t be so concerned about her eating something when she is out of my care.  Our food budget would be at least halved, which is no small thing at the moment.  She could eat a real birthday cake without me having to figure out how to get all the ingredients while away from home.

And then I go back to remembering how her back looked when I removed the skin patches.  How I thought she had no problems with food, and then saw the angry red wheals.  How even after the 5 days of observation, the marks for wheat and milk remained.  They didn’t go away until 3 weeks later.  I remember thinking that if this is what happened to her skin on the outside, what on earth had years of eating these foods done inside?  The scariest thought of all: was she in pain all this time, and unable to tell me?

And with that, it seems certain that we’ll carry on.  But if following the GFCF diet can be tough here in the land of Whole Foods and Trader Joes, how much more difficult will it be overseas?  And right now we have a pediatric allergy specialist, dietitian, and GI consultant.  If I’m going to reintroduce those foods, I want that team at close hand.  We leave here next summer, so a decision needs to be made fairly promptly.

I would really appreciate it if anyone with experience of the GFCF diet could tell me what convinces you to keep doing it.  Or if you tried, but stopped, you could tell me about that too.  Even if you’re shy about leaving comments for everyone to see, you can drop me an email.  I really need your help on this one.  I’m at a loss.  We see the allergy doctor on Friday, and need to make some kind of decision for both kids.  I’m just not convinced either way.

I’m Only Sleeping

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Usually, when Pudding is sleeping, I am too. Not so many photos of her like this!

You know, there just might be a Beatles song title to fit any blog post…which is a challenge I willingly set for myself.

Last week when I asked for questions, a friend wondered about what really happens at bed time. Sleep is constantly in our thoughts in this house. I’m a big fan of it. I never feel like I get enough of it, and always want more. Even when I was pregnant with Pudding I didn’t get much of it. I was kind of prepared for those early days of round-the-clock breastfeeding. At a few weeks old, she suddenly started sleeping through the night –  a full twelve hours. It was fantastic. We congratulated ourselves on our little sleeper.

So when, at 5 months old, she started waking up all the time, and seemed inconsolable, we thought it was an aberration. It must have been teething. She must have been in pain. I knew nothing of sensory issues back then. I did know about routines though, so we adhered to a strict routine, one that we continue to this day: dinner, bath, story, bed. And at 7 we would have her asleep, then wait for the inevitable screams. We got fed up of this by the time she was 10 months, and we stopped going in every time she woke, and within a few nights she was back to sleeping through the night. Right around this time we discovered her allergy to dairy, but we didn’t make the connection between that and sleep. Again, we patted ourselves on the back for the return of our little sleeper.

She was never thrilled about taking naps, and at around 18 months, when I became pregnant with Cubby, she just gave them up altogether. I craved sleep, tried everything I could think of, but they were gone and haven’t returned. She was back on dairy, and because I hadn’t seen the hives and eczema this time around, we thought she was fine on it. At least she still slept through the night, though the nights got shorter and shorter.

Around this time, what we would later call autism symptoms began to emerge, but we didn’t notice them at the time. I’d tell myself she just needed more sleep, and that may still be true. She definitely functions better on more sleep, like all of us.  Wearing all that energy out of her helps too, so we bought a mini-trampoline for the winter, and we go to the playground or swimming the rest of the time.  Spectrummy Daddy always does some physical play with her before bedtime to wear out the last shreds of hyperactivity.

After her brother was born and we returned to the US, sleep got bad and stayed bad for several months. The first day we took her off wheat, she slept through the night again.  Slowly though, we’ve gone back to night-wakening, fear of going to sleep alone, and the ever-present early-rising.  Are there even more allergies we don’t yet know about?  (Please, no!)

We’ve tried various night lights, no lights, a weighted blanket, a bed tent, a white noise machine, different texture sheets, changing the room temperature- everything we can think of. I have no clue if it is the allergies, sensory issues, anxiety, or just a willful preschooler determined to have her way.  Sleep disturbance may just be another symptom of autism that we just have to deal with.  It may be something we can never alter, just like I’m never going to be perky at 5 in the morning.

She is a smart kid. I’m hoping one day she’ll be able to tell us what she needs to sleep soundly. Or she’ll figure out that when mummy gets too Sleepy, it makes her Grumpy, and getting enough sleep makes her Happy. Maybe I’ll have a word with Bashful about it.

Written by Spectrummy Mummy

August 20, 2010 at 6:50 am

Less is s’mores

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So I’ll begin where I left off, with the graham crackers.  For those of you reading from across the pond, the closest match I can come up with for a graham cracker is a digestive biscuit, with a bit of honey and cinnamon.  You can just eat them as they are, but they are often used in desserts like key lime pie, which tastes like my honeymoon.  They are famously (well, in America) used to make s’mores.  S’mores are a graham cracker sandwich of toasted (preferably on a camp fire) marshmallow and chocolate.  They are delicious, or s’moreish as I like to say.  Eating s’mores is one of those quintessentially things you do as an American kid.  Pudding’s preschool autism class is doing a camping theme, with s’mores.  And if I lived an ordinary life, that would be the end of it.

Pudding is allergic, sensitive, or intolerant to gluten, dairy, potatoes, rice, carrots, beef, green beans, eggs, fish, cashews and peanuts.  We are new to this discovery, and there are likely to be more foods she can’t eat.  All the stuff you can buy that is gluten free has dairy, or rice, or potatoes in.  So you can’t buy ANYTHING that is pre-made and you have to make EVERYTHING from scratch.  When I say “you” I just mean me, of course, because I’m yet to encounter anyone with a kid with this many food allergies, though I’m sure such souls do exist.

Maybe one day I’ll get around to telling you about there being a sizable sub-section of the ASD population with food allergies/sensitivities/intolerances, and that a diet removing the proteins in wheat and milk has been helpful for some children.  How there is a whole industry springing up around this, for better or for worse.  How I think all these allergies are created by the food industry.  I’ll get around to telling you about what we found with Pudding, but it is an ongoing saga, and I really need to stick to those damn graham crackers.

I know you’re probably wondering why I don’t just give her something else to take to school instead.  I could, of course.  She may not notice, she probably wouldn’t even care if she did.  She seems to like her graham crackers without the chocolate and marshmallows spoiling them, so not having s’mores is not going to be a big deal for her.  So many things are a big deal for her, so many things are going on right now, that it seems ridiculous that I would consciously create my own big deal.  That is exactly what I did yesterday.

So, why?  Well, part of it is because I have a little bit of guilt that we live our nomadic lifestyle.  That our kids don’t get to have the same experiences as other kids.  Don’t get me wrong, they’ll have other, amazing experiences, but they often seem to miss out on the more mundane things.  We just have one year left of being a (half) American girl living in the USA.

Secondly, in a world where she and her school friends are the odd ones out, I don’t want her to be left out.  I too had allergies as a kid, and remember being banished from the cafeteria when the offending food was served.  Clearly her beloved teacher Ms. S is not about to banish her, but being marginalized in a special ed class is the kind of thing they write country songs about.

Thirdly, during my extensive web-based research (really, I need a doctorate for all my studying this last year) I came across an alarming link between anorexia nervosa and girls with Asperger’s Syndrome.  I know, I know, that I’m worrying about that too early for a girl who has always been over 95th percentile on the growth charts, but I can’t remove these pieces of information once they get in my brain and they twist and turn themselves around until they become legitimate fears.  We’re starting to see more control and choosiness over her food that may be a result of the restrictive diet and those stupid allergies.

I thought I’d turn it into one of those fun, crafty-do-it-together things that are fine for other people, but quickly degenerate over here.  I’d bought some teeny-tiny animal cutters that were adorable, but impossible to use.  So Pudding used a gingerbread man cutter, and I used the animal cutters.  Next came what we take as conversation, but others might be more inclined to call monologuing (yes, that is a word, it was in The Incredibles).

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Written by Spectrummy Mummy

July 30, 2010 at 9:04 am