Playdough Contamination.

I had a discussion with a lady who runs a big (gluten free) blog here in Poland about Playdough. She said its ok for her (celiac) kids to play with as long as they wash after, Ive always said no way Jose. Playdough residue sticks to your hands, under your nails and gets everywhere. Any classroom with gluten free kids should (in my opinion) be a gluten playdough free zone. If other kids play with it little bits will get everywhere, on the floor, on their shoes etc, the risk of contamination is just to large, and one that is easy enough to eliminate.

Our school uses playdough, but Celiac kids class all use gluten free playdough. I bought enough for the whole class and I have extra at home that can be brought in any time. You can also easily make it, but Im lazy 😉

We are on week 3 now after contamination. Something went wrong in art class and celiac kid got given a piece of playdough to stick something on to something with. She wiped her hands after, but with play dough, wiping is just not enough. There should be nail brushing and plenty of hot soapy water all supervised by an adult and even then its just not a great idea as residue may still remain on the hands or in the environment.

I picked her up that day and her tummy was huge. Imagine a 5 year old girl about 7 months pregnant. Thats how her tummy looked.  Of course at that point I didn’t know why, I just knew there had been contamination. I also knew it must have been little, because she was not in extreme pain.

Celiac kid was home then for a couple of days, I cant actually remember why, but for the following two weeks she had diarrhea and also a few occasions of vomiting. Horrendous stomach cramps, mainly in the evenings or after eating.  Of course all this has its own issues, fear of using the toilet, having small accidents in school and being embarrassed, ashamed and insecure. Fear of eating because after eating there is more stomach pain. Tearful, cranky, very very tired etc. I obviously don’t know all the symptoms, because many of them she would be to young to explain to me.

It took a week or so to get to the bottom of what contaminated her. I am not angry that it happened, its all a learning curve, for all of us. The art teacher had not received the same paper work as the other teachers and was not aware playdough had gluten in it. I blame myself for this, although some may argue its the schools job. I say its all our jobs. And now me, the teacher and support staff will be sure to remind / point out an extra time that playdough has gluten and where the gluten free one is kept. Celiac kid herself is also old enough to ask and has been told that asking is a good idea.

My point here is, that gluten playdough is not really safe. There is a risk involved. If you have Celiac kids, please do not allow them to use gluten playdough in school. Make gluten free one (I have a ton of pins on pinterest), or buy it. Below is a gluten free brand widely available in many countries.

So we continue on with week 3 after contamination, we continue being dairy free while she heals, and give extra cuddles and probiotics. For some playdough, all this, is definitely not worth it.

Remember also, that not everyone will have a clear reaction, damage on the inside still occurs! 

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-Linda

Lipgloss, nail polish and other stuff girls want.

When your little girl comes to you and says, ‘mummy, I want nail polish, just like you’, do you feel proud or all mushy inside or does your heart sink?

Things are not so straight forward when you have a gluten free kid. Nail polish, like a gazillion other things, can contain gluten. Nails, are on your hands, and you use your hands when you eat bla bla etc, so nail polish must be gluten free. You cant just go out and buy a nail polish and hope for the best. You can google obviously, and you will find TONS of lists online saying which brands are ok, but if those results are over 6 months old you have to consider the fact that the recipes may have changed. I tend to google for companies that have proper gluten policies, rather then just one product thats gluten free. You could also go for one of those companies that specialise in making only gluten free products, but the truth is that they are expensive, and do other girls and women want to have just 1-2 companies to choose from? Obviously not.

So we went shopping, for lipgloss and nail polish. I already knew I would go for essie with the nail polish and I was hoping to find a lipgloss once there. Armed with my google results and my smart phone we found 2 awesome people in the makeup shop who helped us with the lipgloss, we ended up with a Loreal one that cost well over 100dhs/zloty. No cheap barbie stuff for this little girl! haha.

As a parent its important to me that my kid doesn’t feel super different, in the case of makeup (which she will absolutely not wear fully until she is in her teens thank you very much) it means mummy has to help, that she cant have one of those beauty pouches from the toy shop full of glitter and raspberry flavoured stuff. Thats ok. Putting on some lipgloss and wearing nail polish every now and then is part of growing up, so I will buy the right stuff and thats that.

In our family everything is ‘the right stuff’. All our soaps, shampoos etc are gluten free. Always.

People are always asking me to make lists of the stuff we use. The truth is Im not so comfortable with this, because information can change so fast, and if someone used something because I said its safe I wouldn’t be able to sleep at night! So just remember when you check something, don’t trust just one source and make sure the info you are getting is current. If you have questions pop them on the blogs facebook page and ask, or ask here 🙂 I also pin LOADS of body and house stuff on my pinterest boards.

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-Linda

 

 

Does fun = Junk?

obesity-snapshotSo, I have gotten rather heavily involved in the PTA this school year. Yesterday we all had a meeting to plan the events for the rest of the year. Not the first meeting, there have been a few, and in the events department the thing that keeps popping up is FOOD.

As one of those mums, any event involving food is just another opportunity for my child to feel singled out, lonely and different. As a mum, this ties my stomach in to knots. Big ones.

Food – in my opinion – has no place in school unless its eaten at lunch or snack time, and then it should be the child’s own food thats consumed, and no junk.

Having a Fun food Friday or a similar event is ok, but only if the food can be enjoyed by all and is healthy!  Try telling that to the PTA! haha. Apparently, food is only fun if its junk. Apparently, it has to be mc Donald’s or Pizza or there is no point. Now, Im sorry, Im not trying to be a party pooper here, but hasn’t society ‘got it’ yet? That obesity is an epidemic? That we are raising a generation of kids that eat as much sugar in a day that kids a century ago may not have eaten in a year or even in their lives? That heart disease in the young is on the rise, as is diagnosis’s such as ADD and ADHD and concentration issues etc are also sky high? That giving the kids a meal of Mc Donals’d is not FUN at all, but in fact teaching them that rewards = food, fun = junk and sending the wrong message entirely? Couldn’t Fun food friday be fun in the park friday, or fun fruit salad making day? Or just fun food friday involving something other then high starch high sugar high toxin foods that I as a parent don’t want to feed my kid like ever – gluten or not!?

My celiac kid, she know she is different. She knows she has to eat only her food. She knows junk is bad. We go to extreme lengths to make sure her food is highly nourishing, packed with vitamins, and mainly sugar free, organic etc. We think 11 pneumonias is enough and we do what we can to strengthen her system, her body. So what message does it send when school wants to serve junk and on top of that they choose to call it fun!

Don’t even get me started on birthday cake celebrations. WHY? I am sending my kids to a private school to be educated, I never asked for them to be served cake. Again, its just another time my child gets to feel different, not just my child, many children. I am paying for my children to be educated….. not to sit and be made to feel different. Hate what I say all you like, this was my opinion before our Celiac diagnosis also. We actually chose our last school (before diagnosis) partly because of their food policy! Their policy allowed no junk, fizzy drinks, cakes, donuts, chocolates etc in lunch boxes, no nuts, no food sharing, and no birthday cakes. No birthday parties during school hours (woohoo). For childrens birthdays, parents were allowed to bring in a small sealed bag with a treat or toy for each child, it was given at the end of the day and any food items were not allowed to be eaten in school. The school soon had half of Dubai’s allergy kids in it, because the policy is fantastic, and guess what, no one ever complained! Those were the rules and thats that!

We couldn’t choose a school here in Wroclaw based on food policy because the schools we visited did not have a policy. I asked about food policies and birthday (cake) policies and was met with shrugs and question marks.

Its 2014! Aren’t we, parents, teachers and educators more aware then this? Shouldn’t every school have a healthy eating policy? Should we not stop giving kids unhealthy foods as treats? From the PTA meetings it seems that I am in the wrong and Im just alienating myself talking about it….. even more reason to have a policy set by a school, because this way you are taking away my choice of what to feed my child. Because obviously if the other kids eat junk I will replicate that junk best as I can, and she will still feel different and it is just so not ok.

Just one last thing, my children are not deprived. They eat nice food, they eat good food, sometimes its even fun. But its not junk, so shoot me!

-Linda

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Don’t forget to join in the fun on the Facebook page!

You win some you loose some….. (allergies!)

So we are back from the hospital in the mountains. It was amazing, gorgeous, and calm and everything you could possibly ever ask for in a hospital, the scenery in Karpacz is amazing. Oh, and they could FEED her! First hospital stay where she ate the food!!

Results? Well, not all test results are in yet, but it looks like CF is more or less ruled out. Celiac kiddos lungs are healthy with no damage! If anything she has strong lungs that have been able to cope with so many pneumonias. The doctor almost got himself a big slobbery kiss when he told me this. Then I remembered Im married (although the news was so amazing Im sure hubby would have forgiven me, heck, even done the kissing himself!).

We left with a couple of handfuls of more allergies diagnosed, but egg was not giving a reaction this time!! We had an egg challenge which went well so we are now able to introduce limited egg to the diet!

So what remains now? The liver, kidneys, lungs, heart, spleen etc have all been looked at! So, now the immune system. Her blood is fine, but part of the immune system has something to do with the cells, so thats next on the list. We are also being reffered to the paediatric gastros here in Wroclaw to speak about her growth (which is not really happening) and follow up in regards to her Celiac.

Now fingers crossed the genetic test and last sweat test comes back clear, but the doctor wouldn’t even consider that it may not as her lungs are GOOD! Woop woop!

I leave you with some images from Karpacz, all iPhone pictures, so just imagine if I’d had my proper camera!

-Linda

The meaning of life…..

Pretty deep right…? I am not very religious, I don’t really pray or go to church, but I believe that good things happen to good people, I believe there is a reason for everything, I believe that what happens to us has some kind of meaning, reason. I have to believe this, because thats the only way I can really accept it. It is very clear to me why Celiac kiddo, MY kid was diagnosed with celiac…. because the UAE needed us. Look at the massive change and impact my campaigning has made to the lives of thousands in the UAE. Blatant obvious reason. It was meant to be, it had a higher purpose.

But now…? WHAT THE HELL is the meaning of this? Have I not done enough? Can I just please rest now? I cant make sense of any of this. Its not fair (<- said in the voice of a grumpy 3 year old child). Im tired now, I need a break….. we all need a break.

Not a holiday break kindof break, but a go to school every day and nothing crappy happens for ages kindof break. Its not really to much to ask is it? I keep paying stuff in to the karma bank and I do whatever I can for others, charities etc….and still now…. Im just so tired.

So much for opening wordpress to try to give you all an upbeat happy post….

Really, Im not an ungrateful cow, I know I have so much to be grateful for – even in all this. I am grateful every day that we are together, that I can spend every second on my day on focusing on my children, that we have awesome doggies, that we have a nice house to live in and can afford to buy the best foods the shops have to offer. That my kids go to a great private school with small class sizes, etc etc etc. But now, please, I just want normal. for a bit…..

-Linda

Blood tests, ambulance rides and extra oxygen.

Well, I guess I knew it already as I was writing my last blog post…. we got to the clinic and they wanted to call an ambulance to send us to hospital straight away (in my opinion a slight over reaction on their part). I refused the ambulance (why scare the children more then needed?) and drove home to grab bags and iPads and food. Dropped son at neighbours and went to hospital where we were admitted.

This latest hospital stay was actually the smoothest one yet, maybe because I am getting so used to them? Or because I know exactly what we need? I actually have a bag thats always partly packed in a wardrobe, likewise we have a small bag partly packed for son. After this latest stay the bags will be improved further, but they sure do help a lot, especially if someone else has to go to my house to get stuff.

The hospital stay in itself was eventful…. Every test they could think of and then some has been done. It seems Celiac kids haemoglobin is high, her body responding to oxygen levels that are too low and trying to adjust them….. clever on her body’s part, but not good for her. The pneumonia was also a bit of a mystery, a strange kind, very severe, not the kind of pneumonia ‘normal’ people get. Well, my daughter is anything BUT normal, haha (that haha is mildly hysterical by the way). Its almost as if she enjoys playing games with science, because her test results are always a bit strange and baffling.

We were sent to a different hospital to be tested for Cystic Fibrosis. Its a sweat test. Above 60 is positive and below is negative, but a negative should really be below 30 or it needs to be investigated further. Celiac kids result was 49.

I am calm. Hubby is stressed. And I remain calm. Sortof. Celiac kid is super exited because the trip to the other hospital was by ambulance, and the super cute ambulance guy gave her both lights and sirens the whole way after she asked to hear them! Haven’t seen a smile like that in ages!

Normal people don’t GET this many pneumonias. Is it still her RSV as a baby giving us crap or is it the celiac and the crappy immune system being silly? At this point I think we need more answers, because if my counting isnt completely off we are now at something like 11 pneumonias, a handful of bhronciolitis and countless upper respiratory illnesses.

I actually think we struck gold at this latest hospital visit, because they are as concerned as I am, and I didn’t have to be assertive (read bitchy) in the slightest to get some action.

We were admitted on monday evening and they finally let us go Saturday evening after some straight talking to from hubby. They just cant feed a celiac kid in a hospital here, and if you really want someone to get better they need proper food! Thankfully her oxygen levels weren’t super low so she was only on 1-2 litres until Friday then she managed ok without.

We have been back to the hospital daily since. She is having her last antibiotics today. Next week we go to a mountain town that has a specialist hospital to be admitted for a few days, there they will check her lungs properly and hopefully before they let us go we will know more definitive answers as to why she keeps getting this sick.

We did the Cystic Fibrosis genetic test too, Im guessing they will repeat the sweat test next week also. The genetic test only checks for the more common genetic mutations but around 90% of Cystic Fibrosis should show up in this. To be honest I don’t really trust the sweat test anyway because I’m so used to my daughter having results that aren’t ‘normal’.

I wasn’t really going to write about this at all, but then I figured that its probably good to write about it, because no matter what the results are eventually, our story can probably help others. Much of the information about cystic fibrosis is pretty scary, but to be honest, if she does have it, then we already lived with it for 5 years anyway, so putting a name to it (whatever it may be) can only be a good thing so that we can help her. We are obviously hoping its something else, but lets see.

Trying to explain now why we are going to hospital without being particularly sick has been harder. Then the question ‘will they poke me?’, which breaks my heart, because obviously they will but I so don’t want to tell her this and make her cry! By poke, she means needles. She is still bruised black and blue on her arms from the IV going in last week, her veins kept bursting and it was only attempt 5 that was ok!

Anyway, thats whats going on with us. Hopefully you are all having a better month then us.

I have decided to stay as positive as I can, feed the kids the best and most nourishing food I can think of and just breathe deeply as much as I can. Me losing the plot is hardly going to help.

– Linda

Oxygen watching…. again.

Is there anything worse then sitting and listening to your child’s breathing..? There is this fear that is just unimaginable. Like now, her fever is high, the wheeze is not so bad, but I can hear that she is starting to breathe faster… its like I am just WAITING. What the hell am I supposed to do? There is nothing I can do…. just wait. People don’t get it, no one gets it. I don’t need anyone to get it really, but the well meaning ‘oh, yeah, when such and such was little he was sick a lot too’ just makes me feel even more isolated and angry, because this kid is nothing like that kid, this is not a kid who is sick a lot, this is a kid who goes in to respiratory distress, falls unconscious etc etc, and it can happen at rocket speed! So I am sorry, sitting here watching my kid breathing… but that such and such kid that was sick a lot…. he/she is nothing like this. Im tired of this, Im tired of people not getting it, I am tired of it being belittled, Im tired of waiting… Im just so bloody tired. I wish (as horrible as it is) that there was someone out there who actually really ‘got it’. I think it would maybe, just maybe make me feel a bit less alone. I just want someone who understands, truly understands to give me a hug.

I know I know… I should stay positive etc, and I am always the one smiling, trying to laugh it off, shrugging with a smile and saying, ‘well hey, life goes on’ etc etc. I often tell people that we are the lucky ones, because its not a brain tumour or leukaemia etc. And I really DO mean it…. most of the time.

Its not so easy being that positive all the time. Its not so easy shrugging things off when fear holds your heart in a vice like grip and you think your brain might haemorrhage just from too many thoughts being in there.

I was talking to my husband the other day about what WE are going through, we as parents, and especially me as I am the one dealing with it all, and the truth is that if I actually had a job (which I don’t), I would probably end up being signed off for years due to hitting the wall, stress, burn out and whatever else you might want to call it. I cant be signed off of anything though, because this, here, sitting and listening to her breathing is my job, and there is no one else to do it.

How do you handle living like this? I have no idea… Im trying super hard to think about things like how the grass needs cutting and what we should have for dinner, although at the back of my head there is the hysterical voice going;

“ok its ok shes still breathing slowly, oxygen is 94 its still acceptable no need to panic just yet, what the hell should I do with V if we need to go to hospital, I wonder who will watch the dogs, should I pack the bag, wonder if there is a fridge in the hospital and if P’s mum can come and stay for a bit, shit what about the school party on saturday, is she still breathing for fucks sake calm down woman she’s ok we are still home just calm DOWN it will be ok it will be ok it will be ok… but what if its not, thank god she’s sleeping now, omg what if someone rings the door bell and wakes her, oh no… someone bloody well better not ring the doorbell I will KILL them, is she still breathing????”

Dr’s appointment in 5 hours and Im afraid its to late, that we will have to go to hospital before that……

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DONT RING THE BLOODY DOORBELL!

 

When your kid is sick all the time…..

Pneumonia. Again. No, it wasn’t the last one that didn’t go away, its a NEW one. A FRIGGIN NEW ONE LESS THEN A MONTH AFTER THE LAST ONE!

I carry on, I do, I clean, cook, comfort, give meds, check oxygen levels and massage her back and cook some more and clean some more, and try not to worry and carry on…….

Horrible evenings with low oxygen levels, I pack bags and cry a little in my bedroom or the bathroom, the older kid cries and asks what will happen to HIM if celiac kid goes to hospital again and I carry on and comfort and cook and clean a little.

People tell me Im so brave and strong and all that other bullshit and I just want to scream because Im not strong at all, I didnt choose this, it chose us and I don’t have an option ‘a’ and ‘b’ where b is ‘lie on floor and do nothing’, so I carry on, that doesn’t make me strong, it makes me a mum. It makes me Celiac kids mum. And at times, I feel like this is it, this is our life, because it seems like we never get a break from it no matter what we do.

Im so tired, tired of doctors and tired of second opinions and people, PEOPLE! The ones who knows someone who knows someone who’s cousin had a kid like bla bla bla and have we tried bla bla bla….. I know these people are just trying to help but Im so freaking TIRED of all of it. Its not like we have sat on our bums and not done whatever we can to try to change this… we moved country for crying out loud!

I carry on, I try to live, I plan things and know they will probably be cancelled one way or another anyway, I clean , I cook, I carry on and in my head Im screaming at the top of my lungs because it is just so fucking UNFAIR all this shit, and how the hell can a 5 year old girl have had what, 9 ( or more ? )  pneumonias and I don’t know how many upper respiratory infections and bronchiolitis??? People DIE from pneumonias!! I am not strong, I break inside every time she is sick, how many times can you have pneumonia and actually be ok at the end of it? How many times can your oxygen levels drop THAT low with your heart having to beat extra hard and fast to make up for it and still be ok?

I am so tired. Not tired like I can sleep a bit and fix it, not even pregnant drewling on your chin kindof tired, but utterly exhausted, and if there was an option b to lie on the floor and just lie there forever and ever I would probably choose that……

But instead… I choose option a…. I carry on, I clean and cook, and cry a little in the bathroom.

Tomorrow allergist appointment and ‘normal’ dr. appointment, and off we go and carry on and bla bla bla….

Linda

3 pneumonias in 9 months

I mean seriously, enough already???!!! How many steroids and breathing aids do we need to use for all this crap to stop??!! Poor Celiac kid just cant catch a break, why??!! If I could take all these pneumonias from her and have them instead I would, only I don’t know how anyone who’s had 3 pneumonias in 9 months can even function?? Yeah, so the pneumonia came before my post earlier (I didn’t want to rain on my own parade), and we caught it so super early she was able to continue with school with just one day off, but still, she must be absolutely exhausted! How can anyone grow and live and function when all their energy goes to fighting bloomin’ pneumonias? On top of the pneumonias poor kiddo now has bone pain from having been on steroids so long. Can we take her off the steroids? No, because then we would be looking at more pneumonias then 3 in 9 months… we cant win here, and poor kid can hardly walk down the stairs properly because her legs hurt! Im tired of seeing doctors and getting second opinions, and Im even more tired of every bloody doctor having a different opinion, who are we supposed to believe? This is our child’s life we are talking about! Now the latest dr. didn’t want to prescribe the tablet that really helps her, because she wants her to see another allergist, another doctor says she can take the tablet long term no problem, yet another says it should only be used short term. So who am I supposed to believe? I know the tablet helps her, I know that, because every time she comes off it she gets sick, so just prescribe it please! I don’t want my kid to be on every medication under the sun, but we need to stop these pneumonias! Not all people with pneumonia survive so seriously just give us the darn tablets! Never mind then the money we fork out on all these doctors visits… bah… its very very lucky we can afford to, not all are so fortunate.

Anyway, rant over. If anyone knows of an exellent paediatric pulminologist in Wroclaw or nearby, please let me know!

-Linda

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I am home ALONE!!!

7caxrn5MiHOME ALONE!!!! I mean really ALONE!!! I know mums will understand after the long summer break, but imagine then that the last time I was home alone was April!

I am not going to clean, or empty the dishwasher, or fold laundry. Im going to sit / lie / veg around and do absolutely nothing! I am home alone baby, yeah!!

So here I am (alone – just incase you didn’t catch that part!). Not stressed in the slightest, because Celiac kiddo is at school with her brother, and today I wont go in for snack time or lunch, because they’ve got it all under as much control as they possibly can.

I keep promising myself I will put my school letter up, but by now schools have already started so I guess Im yet again to late. I will be starting a new section on the blog called stuff, check there in the future for the school letter and other goodies. The fact that I am sitting here, not stressed, is all to do with the school letter and preparations. About Celiac kid being prepared and every adult in school knowing what she can / cant do.

Sure, its a bit of work, but the payback is tenfold. HOME ALONE BABY! (yeah!!)

-Linda