Category Archives: Health

When your kid is sick all the time…..

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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

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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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We have the muppets.

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Sometimes I think to myself, if I wrote about ALL the stuff that happens in our life, people would think I made it up. So I wasnt going to write about the last few days, but I will anyway. Because Im laughing now, and its funny in a comedy movie sort of way. Short version.

Thursday afternoon going home from school A (Celiac kid) says her cheek hurts ALOT. I think maybe she has a small sore in her mouth, maybe she got contaminated. With clean hands I check the inside of her cheek. Nothing there.

Fast forward to two hours later, I’m lying on the sofa playing some game on my iPad, kids are watching TV. I turn around to look at A who is whinging about her cheek and I literally FLY up and in to action. Her cheek, on the side, slightly below the ear, has swelled up to golf ball size! All Im thinking is airway! What if the swelling is inside too! Call our doctor who says she cant see us straight away but to take her to the emergency room. We already had shoes on! GO! Mad drive through the city. Get to emergency room. 2 doctors and 4 nurses then spend ten minutes arguing about how to do our paperwork, kids are Polish, but have no pesel numbers (long story). Im thrusting my credit card at them saying it doesnt matter we arent asking for free care, we will PAY, just please LOOK at her. Finally another doctor looks at A while the others argue with her that its against the RULES (people in Poland are very concerned about rules and the right way to do things – at times, its infuriating – because while they all argued, A had swelled up further). She reassures me there is no threat to the airway, but because we are paying we must go to another part of the hospital. Off we go, its far enough that we need to drive around.

We get to the gate I think we are meant to go in, and the man speaks no English, I refuse, REFUSE to give up, so I shout at him in English, Im tired of being ignored (in general, not by this man), its a hospital, my kid needs to be seen and I cant understand you and LET ME IN GODDAMMIT! Barrier opens. Jenki bardzo! (later I realise we actually parked in the doctors only parking, poor guy, but at least shouting in english sometimes works. I need to send the poor guy flowers or something, I thought he was just being difficult because I was speaking english – oops!)

In this part (of the hospital) we are helped instantly. The hospital is huge, clean and very empty. A doctor and a med student see us. After a while the Dr calls for all the english speaking med students to join. Story of our lives, A is an interesting case, but hey, the more the merrier 🙂

The doctor is very concerned that it looks like mumps, and although A has been vaccinated we are at that point again where we wonder, does A’s immune system know she has been vaccinated? I call my husband, tell him it may be mumps, he’s like a gigantic question mark, SWINKA I say. Because Im getting really good at Polish disease names and hospital lingo.

Because its suspected mumps we need to go to another hospital. Some infectious disease place. The couple behind us warns me in english the place looks awful and not to be frightened, its not as bad as it looks. I think in my head it must be like the Poznan place and smile and say thank you.

GPS and me and kids drive to the other hospital. Well. GPS takes me to allotments in the middle of nowhere, I reverse, go around. Search. Eventually hubby has to help by phone, him and his Polish friends all get involved. We need to go to opposite the graveyard! but opposite the graveyard there is something that looks like an old deserted asylum, the kind of place horror movies are made in, you go in…. but NEVER come out….. I drive around, many times. I find a door, hubby says, ‘Go in and ask’. I sit, in my car, thinking NO WAY. Im laughing pretty much the whole time, I actually started laughing already in the first hospital, because these things, they only happen to us.

I take photos, because Im thinking no one will believe me. They are all iPhone photos, not great quality, but I have to share them…..

 

So, hubby calls them, and they explain exactly in which part of this huge complex they are. By this time its getting dark, and the feeling that Im in a scary movie is hard to shake off.

I park, away from walls and shadows, haha! And walk towards the building. A nurse nods and smiles and points to some chairs under a tree. Wait there she says. Im not kidding. Under a tree.

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Part of me now thinks Im in some joke show, you know where they pull a prank on you and someone will jump out in a minute and explain its just a joke.  That doesn’t happen. Instead a dr. opens the door and lets us in. She doesn’t look like someone from a joke show OR a scary movie, she speaks english and she’s lovely. She examines A and says no tests needed. She believes its an infection of the salivary gland and not mumps. She goes to type some forms for us and I cant help it, I have to snap some more photos, because  feel like Im in a time warp of some kind and Im in the wrong decade… possibly even century!

I get my paperwork and get in the car. My phone beeps and I look, its from hubby. ‘So, is it muppets?’.

-Linda

A note, I have now been to 5 different hospitals in Poland and although two of them were extremely old buildings the staff have all been great. Most medical facilities in Poland look nothing like the one above so don’t let this post put you off. 

Another one of those trips….

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Im not entirely sure of the point of this post, and usually my posts have a clear point, but I had to write it, because I need to somehow process this, process that this is our life, and this is how we live. Its not a nice post, it wont leave you feeling gooey or good inside, or even enlightened, it wont make you laugh. Im sorry. Feel free to not read it. 

In the last few days Ive been through what no parent should ever have to go through… ever. Whats worse is that it wasnt even the first time, or even the second, or third… the truth is, I have lost count of the number of times that I have held my limp daughters body in my arms, the amount of times Ive driven like a lunatic actually hoping the police would stop me so they can help me get to the hospital faster, the amount of times Ive entered some kind of auto pilot where I just function and do all the things I need to do but I dont feel or react to anything, because if I felt or reacted, I would have had a nervous breakdown, meltdown or a whateveryouwannacall it ages ago.

So, my daughter is Celiac. Big deal huh? Many Celiacs live somewhat easy lives (and I dont say that lightly, I know all to well what the life of a celiac involves), other celiacs, like mine has a number of health issues. Are they related to her Celiac or other factors? Nobody really knows, but what we DO know is that her immune system sucks, her lungs have damage from her many many cases of pneumonia and upper respiratory infections, and Celiacs are more prone to pneumonia, on top of that she was born 6 weeks early and her lungs were probably not as great as they should be. I still fully believe that had my daughters celiac diagnosis come sooner, we would not be facing all these issues that we are facing today, some maybe yes, but not all.

So Monday I had a call from school, she was coughing alot, so I went in, gave her some meds, she seemed fine, no temp, no big wheeze, just the cough. I asked if she wanted to stay, and she did. A few hours later, another call, she’s coughing even more. I go in, and sure, she’s coughing, but not to bad, but I take her out of class. We hang out outside, play for a bit, she runs, plays hide and seek in the bushes, ‘mummy, can you seeee meeee?’, no big deal. We wait for her brother, he finishes and we go home. On the way home I see her looking a bit more pale. The tiny worry thats been inside me that I kept brushing away as me over reacting (because Ive been here before and Im maybe just hoping Im a bit hysterical and wrong rather then right!) is now growing. We get home, she’s coughing, I give ventolin, it helps… for about 10 minutes. I call my husband to call the clinic. They have an appointment only the day after. I give the kids soup, I pace, I ask the husband to find me addresses of hospitals, just incase you know, because Id rather know where to go, just incase…… I pack a bag, why? Im not sure, I had to do something, I guess I already knew, but wanted to believe that I was being a hysterical mum. She’s getting worse, I can see her chest rising and sinking, and its going to fast, to deep, and she’s not well, I know she’s not right, but its not THAT bad…. I put her in my bed, I lie with her, hoping she just needs to rest. Im lying with her, watching her chest rise and fall, thinking in my head, we need to go, we need to go, we need to go, at the same time as Im thinking, its ok, she will be better soon, its ok. Then I hear a cough and a splutter, and shes covered in vomit and so am I and so is the bed, and thats when my autopilot kicks in, the decision has been made in my head, we need to go, and then the ‘doer’ comes out and sorts everything. Son brings towels to cover the puke on the floor (yes I obviously pulled her off the bed as soon as I could), I pull sheets off the bed and pillow cases of pillows, I sit daughter in bathtub, I call husband to tell him we are going, I take the bag and add even more gluten free food and iPads, I take phone chargers, then I somehow manage to get us all dressed and ready and the pukey sheets thrown on to the floor of the laundry room. Dogs get locked in our biggest bathroom with food and water. Im doing it all so fast, but it feels like slow motion.

By the time we are in the car and driving (probably less then 10 minutes after the vomiting) she is drifting away, not unconscious really, but not responsive either. Like so many times before its all happened so fast. The GPS sends me the wrong way, or maybe I took a wrong turn, I drive like a crazy woman, but yet Im calm, extremely calm, like ice. We finally find the hospital, but the area is a mess and no parking that I can find, its dark, all the signs are in Polish and I just want to get in. So we park in a car park, not close enough, and my big brave 7 year old who must be absolutely terrified, helps me with all the bags, and I carry my daughter and we run. We run, and we get there, and I get to the front desk, and I ask the lady those familiar words, ‘do you speak English’ and thank heavens she says yes and I sit, and I open my girls coat and I point, and I say, ‘her breathing, please, she cant breathe, she has a history of low oxygen levels’.

This is a kids hospital A&E just after normal clinic hours, they are super busy, but we are whisked in to a room within seconds of our arrival and 2 Dr’s see to us almost immediately, a nurse helps translate and then husband on phone also. None of this matters, we are there, we are safe.

I don’t need to continue the story, this was 5 days ago. We were admitted of course. Daughters oxygen levels were around 87 when we arrived. We have been in an ambulance with levels higher then that. I know for a fact they were not that low when we got in the car, once things get bad they get bad fast. We have been let out now, not because she is well enough to be out, but because there is no place worse for someone with a crappy immune system then a hospital, the hospital is also not really able to provide 100% gluten contamination free food, so home is better. We had to beg and plead, but yes, she is home, with twice daily visits for IV meds. She is still very sick. Pneumonia. Her blood tests were repeated many times already, and it seems the day we came in is pretty much when the infection started, because the level of infection was low, so we caught it fast, caught it early they say. But how is that possible when she went from playing hide and seek in the bushes to being pretty much out of it in about 3-4 hours?

Celiac disease absolutely sucks. Pneumonia also absolutely sucks.

-Linda

3 weeks in school and only 1 sick day!

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So little miss has had a cough, a sniffly snotty nose, then a pretty bad cough which scared me half to death as she was doing her rapid breathing wheezy thing that usually ends in a hospital stay, and then got better – ALL ON HER OWN!! And no temps, at all!!? This doesn’t happen. Fluke..? Perhaps, but all I can say is GO IMMUNE SYSTEM 😀

Just had to share the good news as I know many of you are wondering. Keep those fingers crossed!

-Linda

Touch wood and all that, but so far so good.

Wash your hands!! (Please!)

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I have a gluten free home. And its REALLY gluten free. Every soap, every beauty product, every cleaning product and obviously all the food has been checked. It is 100% gluten free. But keeping it that way is not an easy task. When people arrive it can be hard to find a way to politely tell them to wash their hands without offending. Of course old friends know and go and wash as soon as they arrive, but I always struggle telling new people. Even worse, when they arrive with kids and one of them has a biscuit in their hand! I thought about this a lot lately, especially now that I’m moving to a new country and everyone I meet will be a potential new friend. I don’t want to offend anyone the first thing I do! So, I came up with a brilliant idea (if I can say so myself), SIGNS! Of course signs will do the trick, you know the kind, Home sweet home somewhere in the hall way, only, mine will look a little different! What do you think? I will have to work on the Polish version, and get some nice white frames.

-Linda

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Major decisions about our future.

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Seems to me some Celiacs are A OK as soon as they go on that gluten free diet, others struggle and suffer, no matter how well they stick to the diet. I have met hundreds of celiacs by now through my work with Gluten Free UAE, and it seems to be that its not how long you were sick for before diagnosis, but how SICK you got before diagnosis that makes a difference. Those who were very very sick, are often the ones that struggle after (no research on this that I know of, just how I perceive it from the Celiacs I have met). My own little Celiac is one of those that got extremely sick before diagnosis, and she is also one of those who have struggled post diagnosis. Yes, she is better, yes, she is doing great in many ways, but she also gets sick alot, not sure if she gets sick more often then your average 4 year old, but she certainly gets sick ‘properly’. She has had a ton of hospital stays. At the age of 4 she has had so many pneumonias we are starting to lose count and only count the severe ones! Although she is doing great in growing and developing, each pneumonia sets her back, and we cant afford to many set backs, she has to much catching up to do! Her energy levels are often very low, as they would for anyone fighting illness. At times I have to carry her in to school from the car park, as she just doesn’t have the energy to walk. As any other tired 4 year old, the tiredness makes her cranky. She is on preventative steroids and we keep her indoors as much as we can to protect her from the dust. Her oxygen levels are often low and the main reason for repeated hospital stays. Her immune system seems to be working on overdrive and she often has unexplained temperatures, sometimes twice a week!

We left on our Europe trip with extra liquid steroids and antibiotics from the doctor, the oxygen levels were low, but not low enough to be admitted, but I fully expected to have to start her on the antibiotics a couple of days later. BOY was I in for a shock.

First day in Poland we walked to the shop, because in Europe, people walk places! I brought the push chair because of course I didn’t expect her to be able to do the full walk with her wheeze. Well, she walked all the way to the shop… and then she walked all the way back! I lifted her up to give her a hug and listen to her breathing, and there was NO WHEEZE WHATSOEVER!

Our little girl spent the next 1 month and 1 day without a single wheeze, she walked, she ran, she jumped, and not once did I hear the familiar words ‘mummy, Im tired now, I need to rest’. Not once did I have to carry her when her energy simply ran out. She was a different child. Even her gluten reactions were minor, we had a couple of cross contamination incidents and 1 ice cream incident, and she got over them so easily, so much faster then usual, and after the ice cream I fully expected an ear infection or something else to come – thats what usually happens – but no, she was recovered fully in 2 days!

We returned to Dubai, and I was hoping the wheeze would stay away, but the heavy breathing and a slight wheeze was back in 4 days, a couple of days later the first unexplained temperature. Clearly our Celiac does not do well here.

So I guess the title of this post is unfitting, because our decision wasn’t major at all, it was a total no brainer. We are going to go and live in Europe for a bit, hopefully the air quality there will help her, and this girl really needs all the help she can get!

I am gutted. I love Dubai, I have loved it since the first time I set my foot here in January 2006. My children were born here, I have my home, my friends, my heart here. But health has to win. Hopefully in a couple of years things will be different, maybe we will even be able to return. Who knows.

I believe you chose your reactions to everything in life, and I chose not to remain gutted. Instead I am embracing this move fully, I am exited, the kids are exited, a new adventure.

And it sure will make for a pretty interesting blog wont it 😉

-Linda