Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘Allergy

Juggling

with 7 comments

…I’m humbled by your ability to juggle…

…you’re obviously skilled at finding balance in your life…

…am in awe of your ability to handle so much at once…

These were comments on a recent post.  You know- the one with Hillary Clinton.  Yes, I’ll keep name-dropping, because it is now years since Hugh Grant smiled at me, and I need to bump up the star quality of this blog.

The last couple of weeks have indeed been just like a circus.  But I can’t juggle.  When I try to walk the tightrope, it becomes clear there is no balance.  You might think otherwise, because you don’t know what happened last week.  So I’ll tell you…

Last Saturday, there were two very important meetings that both Spectrummy Daddy and I had to attend.  There was nobody to take care of the kids, so I took them into work with me.  I’ve done this before, and the kds are usually happy there.  I have a TV and DVD player in my office for some reason, so that and playing with office supplies is generally enough to keep them occupied.

We bought some ready meals from the supermarket that we could heat at work for lunch.  The kids food was allergy-safe. but mine contained cashew nuts.  And because I had so many balls in the air, and my eyes were on those, I didn’t see until too late that Pudding had reached across to my food, scooped a tiny bit of sauce and stuck the finger in her mouth.

It was the first time she’d ever actually consumed cashew nuts.  Her allergy readings are from RAST tests.  Her face started to go red, and Spectrummy Daddy ran to get the epi-pen.  By the time he got back her eyes were swelling closed, and she’d got hives all over her face.

Her breathing was still normal though, and her lips and tongue didn’t seem swollen.  I held off on using the epi-pen, but her reaction was fast and serious, so I grabbed her and drove straight to the hospital.

It would be an entirely different post to write about how awful the hospital experience was for an already overloaded child who hadn’t been prepared to go there.  I was terrified, and I lost my mind.  When asked who her doctor was, I gave them the name of the pediatrician she had in Luxembourg when she was first born.  The one who told me that she “loves herself like a kitten” when I tried to question some of Pudding’s puzzling behavior.

The nurse asked if she had any other conditions.  I knew they were unlikely to have heard of Asperger’s, so I went straight to Autism.  And no, she hadn’t heard of that either.  Or ADHD.  At this point the doctor from the Consulate called and asked if I needed him to come.  Yes, I did.

They quickly administered an anti-histamine injection and oral steroids.  Her vitals were all normal, she never developed anaphylaxis…this time.  She responded immediately to the medication, and I took a photo to reassure Spectrummy Daddy, only I was shaking so hard I couldn’t manage to actually send it to him.

Image

In fact, 30 minutes later, we were free to go.  I was still shaking, but relieved.  As we drove back I remembered that I’d missed the meeting, and I’d left Cubby with Spectrummy Daddy.

It wasn’t so much that I felt the balls dropping, as I looked down and realized they were already on the floor.

I’ve had a whole week now, before writing this.  Time for things to return to our version of normal.  Time to let the guilt ease away, and learn the lessons I need to instead.  Like always keeping her environment allergy-free.  Like if the circus comes to town again, I’d better fly in some carnies to help out.  And by carnies, I mean grandparents (in the nicest possible way)!

Perhaps some mothers can manage this juggling thing better than I can.  But in that hospital last week, I knew I was holding on to the most important thing, and I wasn’t going to let her go.  Let the other balls fall as they will.

Written by Spectrummy Mummy

August 11, 2012 at 6:16 pm

Nuts!

with 2 comments

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

Mosquitoes and Hope

with 5 comments

Let me preface this by saying that as I write, I’m covered in dozens of mosquito bites both old and new.  The fresh ones are demanding most of my attention, distracting me with their itch.  They are raised and red, each one about the diameter of an orange.  As bad as my reaction to mosquito bites, as attracted as they are to me.  Sitting yesterday in the shady woodland near a creek, I was a veritable banquet- no matter how much spray I applied.  It is fair to say that I hate mosquitoes, yet perversely, in the last few days they have given me hope.

I’ll start at the beginning of last week.  We had returned from visiting family in Florida.  Pudding was supposed to go back to school the next day, but couldn’t as we didn’t have a school-authorized Epi-Pen.  Only the week before we had learned that Pudding has become dangerously allergic to peanuts, despite never having them (or tree nuts) as part of her diet.  In fact, over the last year, she has become almost 10 times more allergic to peanuts than she was, even though she has had a very restricted diet monitored at all time, with no chance of cross-contamination.  With the news I resigned myself to the fact that I have no control.  No matter what environmental changes we try to implement, certain tendencies are just written into her DNA, I can’t change it, I can only accept it.

But I’ve been struggling to accept anaphylaxis in a child with autism.  A child who has a real disconnect from her body and senses, to the point where I’ve witnessed her receive injections without flinching, without noticing or feeling the needle enter her skin.  A girl who can’t tell me that she is ill, or in pain.  A child whose ADHD makes her incredibly impulsive, the one who would see an unattended chocolate bar with peanuts and eat it before any of us would notice.  And then be unlikely to tell us what had she had done.  A child whose pragmatic language skills would limit her ability to tell us that something was wrong, that she can’t breathe.

I’ve been terrified.  I’ve raged at the unfairness of it.  I’ve worried about it constantly.  And then, accepted that there is nothing I can do to change it.  It is part of her, and I need to accept it, and learn how to work around it.  It could be worse.  She can be in a room with peanuts, she may even be able to touch them, our main concern is with ingesting them.  As long as I continue to provide all her food, and she is watched to make sure that is all she eats, she should remain safe.  And we repeat and reinforce what she can and can’t eat, and hope for the best.

But back to mosquitoes.  One afternoon last week, the kids wanted to play on their sand and water table.  I joined them outside, but upon seeing the mosquitoes, I decided to go back inside and watch them through the patio doors.  The kids don’t tend to get bitten, so I thought they’d be okay.  Later that night I learned that their apparent immunity was only guaranteed when I was around, offering my tasty blood to the little suckers.  Pudding in particular had fallen victim to their thirst, and had a few bites.  She came up to me and showed her leg:

“What’s that, Mummy?”

I told her they were bug bites, and showed her the corresponding wounds on my own body.  She repeated bug bites as she prodded each one, and I applied the cream.

Itchy.”

Just one word.  One little word, I’d never heard her utter before, but it told me so much.  She was able to accurately describe a body sensation.  It gives me hope that, should the worst ever happen, she’d  seek me out, or seek somebody out, to find out what was wrong.

It is going to be a long time  before I’ll feel confident that Pudding can understand the danger of her allergy, but one mosquito bite at a time, I’m hopeful we’ll get there.  Now if you’ll excuse me, I have some cream to apply.

Written by Spectrummy Mummy

July 11, 2011 at 7:28 am

Flat

with 11 comments

I didn’t want to go home.  I was enjoying the warm sunshine on my vitamin D-ficient body.  Knowing that although it was unusually cool for Florida, it was a heck of a lot warmer than where we live.  I liked having easy access to the just-right stimulation my kids enjoy, and the relative ease of finding food they could eat.  I like outnumbering the kids with adults, and all the extra help that means.  But most of all, because I only get it once a year these days, I loved the feeling of contentment of having the people I love most in the same place.

I didn’t want to go home, so I was pretty sour the last day.  I mooched around with a petulance that isn’t very becoming in a 32 year-old woman.  We finally got into the car on Saturday morning and set off.  I didn’t cry, because of the whole British stiff upper lip thing that is my genetic inheritance, but my heart was heavy, and I felt every one of the miles we drove along.

We split the trip into two days.  I cursed yet again that we’d forgotten the laptop, because over 5 nights we stayed in 5 different places, and that is a bit much for anyone.  We could have used a social story right here.  But Pudding and Cubby handled it like troopers, and even slept well in yet another strange place.

Yesterday we set off on the road again, and the rain just didn’t quit.  It was much colder now too, and miserable as we were to return, we referred to the gloomy weather as our winter of discontent.  The drive was punctuated just by the odd stop for food that I hoped rather than believed was GFCF, and gas (petrol) station bathrooms so disgusting that I saw colonies of a new species of fly.

Still we drove.  Right after the last big city, and usual source of traffic jams, we stopped to fill the tank.  Silently congratulating ourselves for the good time we were making- just over 1 1/2 hours form home.  No sooner were we back on the road again, when a warning light came on the dashboard, and we discovered a tyre that looked as flat as I felt.  At this point, you would do well to picture me with a raised fist, cursing the gods.  My plan, such as it was, to get the kids home and fed before dark evaporated.  And now there would be no time to get shopping for Pudding’s school lunch tomorrow.  We waited for the roadside assistance people and then frantically tried to find a tyre place in small town America on a Sunday which also had our tyre in stock.  We found it, but they were very busy, and couldn’t give us an estimate on how long it would take.  We could wait in their office (oh hell no!) or see what was open in the strip mall across the street.

Cold, wet, and wind-battered, we found a grocery store that looked thoroughly unpromising.  I’d never heard of the chain before, and I didn’t expect much from it.  I’ve never been so pleased to be wrong.  They had the largest selection of gluten-free foods I’d ever seen in the state we live in.  This place had more bread than Whole Foods, including the brands the kids had eaten at Disney.  We stocked up on pretzels and animal crackers, and made sandwiches in the store’s attached bakery.

I’m not sure I believe in kismet, but it does seem like we landed in the right spot.  Just in case it was our destiny to stop there, we also bought a lottery ticket.  We returned to the car and after a while it was fixed and good as new.  Almost four hours after the flat, we were back on our way again.

The adversity really changed our minds about the trip though.  Now we were longing to get home, and were thrilled to get the rest of the way without any hitches.  Spectrummy Daddy drove, Cubby slept, Pudding perseverated on a Sesame Street DVD, and I mused about the way something that first appears to be a mild catastrophe can make you truly appreciate your fortune.  Sometimes the universe knows the perfect way to change your perspective.

Written by Spectrummy Mummy

December 13, 2010 at 7:33 am

GFCF Dilemma

with 24 comments

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.

Taking a break

with 7 comments

Today I’m taking another break from the essential.  I did it yesterday, and I’m doing it again today.  Yesterday Pudding didn’t go to her weekly speech therapy session.  Over the weekend she’d had a nasty allergic reaction, and then another reaction to the Benadryl.  She’d had a bad night and though I sent her to her half-day of school, I called in sick to the therapy session.  I think it was the right move, by afternoon she was fading fast.  She was content while drawing on her Aquadoodle mat, but anything else was beyond her.  Her body was out of sorts, and she needed the day off.

In less than an hour I’m supposed to be at a class with Cubby.  It is a toddler group through the local park and community recreation service that we’ve attended twice so far.  It is great in theory: developmentally appropriate play with his peers.  It is exactly what he needs.  The problem is that is starts at 11, and Cubby is ready for a nap by 10.30.  Today he went down for a nap at 9.30, last night was another bad night.  I can, and have kept him awake for the duration of it.  I’ve watched him refuse to follow the play of the leader, refuse to interact with the other children, and throw a temper tantrum when he couldn’t do what he wanted.  I’ve watched that every week, and I know I’ll watch it every other week until we stop going.  I suspect, though I don’t know for sure, that he would do a lot better if this class took place at 9 or 10.  Normally I make him go anyway, because he needs to spend time with typically developing kids.  Normally I make him go anyway because paying for this for him means that we can’t afford the adapted gymnastics class for his sister.  I weighed up both of their needs, and put him first for once.  Normally, I don’t want to admit that I made a mistake, so I make us go anyway.  And all the other mothers tell me he’ll get better, and he’ll grow out of it, and normally I just nod and smile weakly.

Normally.  You see, Pudding and Cubby having bad nights is pretty normal around these parts.  We still do what needs to be done, go to therapy, go to playgroups.  This week though, we need a break.  Tomorrow we have Cubby’s full evaluation by Early Intervention.  This week Spectrummy Daddy has to go to Afghanistan for a few days.  This week Grandma is coming to visit.  Soon, but probably not this week, we’ll hear about where we might spend the next 2 or 3 years of our lives.  All of these things are throwing our routine out of sync, all of these things need to be prepared for in different ways.  This week is no normal one, even for us, so I’m cutting everyone some slack.  Most of all myself.  Pudding won’t stop speaking because she misses a session of speech therapy.  Cubby won’t become more autistic because he isn’t in a room with other toddlers.  I’m taking control of what I can, and taking a break.

I’ve had a couple of emails lately from readers who are new to this.  Who are feeling overwhelmed by all they have to do, all they will have to do.  I get it.  I’ve been there.  Occasionally I’m still there.  I’d love to say that feeling goes away, and perhaps one day it will.  I don’t know for sure though.  So I respond to them what I tell myself too: give yourself a break.  “Normal” service will resume in good time.  You can do this, just give yourself a break.

Written by Spectrummy Mummy

October 5, 2010 at 10:33 am