When Celiac gives you presents…..

I talked before about how we are not one of those Celiacs that just get to go gluten free and be done with it. Noooo, in our daughters case (and possibly mine but never mind that lol) Celiac has come with some extra special gifts.

Aili has had bone pain on and off for many years. After her Celiac diagnosis we thought “oooh, thats why she didn’t want to walk / put her feet down, she must have had bone pain”, then the years went by, and the bone pain, it never really went away. From time to time its been really bad, with tears when she has to use a staircase, at times so bad she doesn’t want to walk and we use a pushchair still even though she is 7. We often put it down to her Celiac, I heard myself say many times to people that “she probably has weak bones from not being diagnosed quick enough”. I even explained to people about how when you have no villi your body cant take up any nutrients and your body will suffer.

Villi are the small tiny “hair” like things in your small intestine responsible for “soaking up” all the nutrients in your food. In a Celiac who is eating gluten, these tiny “hairs”get destroyed resulting in a smooth small intestine that is incapable of taking up any nutrients, resulting in varying degrees of malnourishment. 

Most celiac’s of course go gluten free, the villi heals, and over time they feel better. In Aili’s case feeling better hasn’t really happened. Yes, she is growing, no, she has no gluten exposure, but she still has many symptoms from many different things, some still unexplained.

We thought for a long time that her bone pain continuing was growing pain or her silly low vitamin D causing issues, then once the EDS diagnosis came we put it down to that.

I thought a few times about a bone density scan, and it was mentioned to me as well but it was never done, until this summer. When they told me we were doing it I was super happy, because its good to know stuff, not suspect or think.

So yes, bone density done, and yes, it is low. Very low. Far far far to low for a 7 year old. And bingo, a new diagnosis. Osteopenia. Osteopenia is not as bad as Osteoporosis, but its bad enough. Osteoporosis is also known as “brittle bone disease” and Osteopenia is the stage just before that. The bones are weak but not brittle.

We are lucky though, even though our GP had told me to take her off the vitamin D as her levels now are acceptable (they had just crept above 40), I continued them at a high dose. I know Aili better then most and I know what happens to her vitamin D levels when she is not in the sun daily or doesn’t take supplements.

Not saying anyone should go against dr’s advice here, but sometimes you have so many dr’s telling you different things you just have to make some decisions on your own.

I told our rheumatologist I had continued the D  and she actually smiled and gave me a high five, she said things could have been much worse without and to keep giving the D at exactly the dose I am. Now Aili is on other meds as well to help her, but unfortunately the steroids she must take for her lungs counteract with those meds, so all we can do is hope for the best. We were letting her rest a lot because of the Ehler Danlos and the fatigue that comes with it, but now with the Osteopenia we need to push her instead, more walking, not less. Her bones need it to get stronger.

Our lung dr. who has been reading up about Ehler Danlos and osteopenia says that Ailis case is so rare we may not ever fully know what symptoms are linked to which disease, we can learn about some of the diseases separately, but we may never know exactly to the full extent of what is going on with her. We suspect she may have MCAD as well, but nobody in Poland at this point can diagnose that. Her lung disease has never been seen before in a child, or a female. There is nowhere to read about a case like ours – because we are the first.

How much of what we have going on is Celiac related? I dont know. The Osteopenia for sure is, the malnourishment seen in (undiagnosed) Celiac is a direct cause of her osteopenia. Many with Ehler Danlos seem to be Celiac as well, but I can not find any research directly linking the two. The lung disease is un related to Celiac , but may be linked to the Ehler danlos. See….? This is why my hair is rapidly turning grey 😉

At this point I am less interested in having a full diagnosis and more interested in trying to make Aili’s life as normal and as enjoyable as possible. We have had to many hospital stays this year already and whats the point really in going if nothing is changing by us going? Maybe at this point we need to concentrate on the big stuff (lungs) and just try to enjoy ourselves more? To heck with limitations and musts. We do what we can and what is possible.

 

Follow mine and Aili’s journey on my facebook page

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image credit: Donna Roberts

 

 

Riding bikes- done! Lung – done!

So we are back, a week ago actually. And guess what? Hubby did ALL the laundry while we were away so now I can do none and get away with it for probably another 2 weeks! Woohoo!

Both kids learned to ride a bike. First big brother (9), who said “its time, take my support wheels off” and later the same day went on a 3km bike ride, then the day after, zebra kid who simply couldnt stand that her big brother knew how and demanded her support wheels came off too and later that evening did it, all on her own!

This obviously is very late for a 7 and 9 year old, but for kids who were in Dubai until very recently its pretty darned good. We never rode bikes around our sandy roads in Al Waarqa….. We did however let the kids ride bikes in the majlis (formal living room), haha.

Then lungs, the stay was shorter then I expected, but they want us back in 2 months. Her eosinophil count was higher then they expected and the new meds had to be started at a higher dose then previously planned, so we have two months for the meds to do their thing, then back again for a bronchoscopy (her third). The steroid dosage she is on now will unfortunately affect her bones, so we just have to hope her bone pain doesn’t get worse again. Bone pain wise she’s been great for about 4 weeks now with hardly any complaints. I will start the daily bone broth again and continue with the vitamin D and Magnesium oil too. Fingers crossed.

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Bolesławiec

I have to tell you all about our little trip to Bolesławiec! Although dont ask me to spell that again, or say it, its really hard to say it.

Basically, every Polish person knows this town, and so do most tourists. Its where the famous polish pottery is made and sold.

Now, Im a white and pastels kind of girl, not really in to these patterns and stuff, so when hubby asked if I will be buying anything I said “no, probably not, but its the kind of place you have to have been to”. (Im laughing now as I write this- just wait)

So, off we went in the car, we were in a group so drove there together, the drive was around 1 hour and 15 minutes from Wroclaw, and that was not the kind off full blast driving I may have done if I was alone.

Im not going to bore you all with every minor detail, lets just say we went to A LOT of pottery shops. In the first one I bought a couple of things, in the second some more, and so on….. Yes. I bought something in every shop. And let me tell you, pastels and white NO MORE. Polish pottery all the way! We had Chris with us, my friend from the blog Kielbasa stories, we met online via another blogger almost 3 years ago, now we are like bff’s that never see each other, we talk (online) almost daily. She is a bit off a polish pottery addict and I never really got it. Now, Im totally there, she just laughed and said “I knew it!” Basically, its all her fault. She was an awesome guide though, took us to all the right places. Lets get to the pictures, because this is totally a picture post!

Obviously (I mean, obviously) I came home and realised I pretty much have to go straight back because I need more! Heres the stuff I didn’t buy and absolutely need (need. As in, I MUST HAVE IT – you will all help me explain to my husband right?) I mean the sink, I need that sink in my life!

I was sending images to relatives throughout the day, and this pottery may very well be the reason some finally come to visit, LOL!

My haul below, not bad eh? (why didn’t I buy more!!??)

I used half of it already, and Im happy to report it somehow matches my white and pastels!

After we had shopped and browsed some second hand stores we went for lunch. A place called the Blue Beetroot owned by a british-polish couple, real fish and chips, steak pie and other goodies, never mind that stuff though, they managed to feed us gluten free people pretty well, and nobody got sick. They have menus in English and all the staff spoke excellent english as well.

Great day, highly recommend it if you ever go to this area. I cant wait to go again. Thanks Chris! (<- In a good way and a bad way I think….)

 

Physio take 2

Went to our new physio today and it was a success I guess as he agreed to work with us!

She sad it didn’t hurt, which is fab, but the physio said her joints are very loose, which Im sure is not good? He did a lot of gentle massaging and bending and checking, more next time he says. We ran out of time.

He made me prepare videos of things to do at home, 3 times a day. Every day. Not at all overwhelming. (Note the HINT of sarcasm there…)

This afternoon has been a real struggle, she seems absolutely beat. Exhausted, but as opposed to her usually pale exhausted she is a nice rosy pink exhausted, so at least we know he got her blood circulation going! More physio on Saturday then Tuesday and again Thursday. Privately at the moment unfortunately as the NFZ wait list is like 2-3 months, lucky us we get to pay 3 times per week.

So grateful to have a friend who does school runs with oldest 2 mornings a week so we can rest tomorrow morning.  Who said being a housewife was boring? I hardly have time for housewifery between appointments, playing iPad games (my wine you see), and school stuff. It takes all my energy some days just to stay sane. I often wake up at 5 am and google crap, lately I google in Polish too, just to have my bases covered. My polish sucks, but apparently good enough for googling.

Then next week, I will, finally after needing to go for a long time, go to the dr for me. Im gaining so much weight and although I had it all put down to stress and eating chocolate on tough days (which is most days) its getting a bit silly now. Need to check on the thyroid and all the other usual suspects. Cant have the mum falling apart!

Oh, and then, just because I have to say it to people, to you guys…  a lady in the EDS forum Im in posts saying her kid may have CF and shes super scared, another woman goes, “oh CF, yeah, my friends kid died from that”. Really? People….. sometimes, its important to use our brains. Poor lady. The last thing she needed to hear in the middle of a possible diagnosis. As much as we, the mums of all these kids, want and need truths, we go to these “support” forums for support, not to get to feel like someone just shot us through the heart with a poison arrow. Ive been on the CF rollercoaster, and its not an easy ride….

Anyway, time for baths and stories and snacks and meds.

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Tesco Poland – Thank you!

Remember some time back when I wrote about Tesco Poland and how absolutely awful it was in terms of free from? I sent that blog post to every Tesco head office address I could find, tweeted it repeatedly and emailed SO many people. Then… a few months back things started happening in Tesco. A free from shelf appeared, then two shelves, then three…. the bio section grew as well. I kept saying to hubby, I HOPE they bring their free from range over, its SUPERB… then I started seeing the Free From lactose free stuff (this from a shop that didn’t even have basic lactose free milk before). The Free from cottage cheese arrived a few weeks later, and I was like “YES!!! They are SERIOUS”. We now have a gluten free section that would put most other shops to shame, bigger then Auchan and carrefour for sure… and today…. oh wow… today, there was a free from sign on the freezer, and there was ICE CREAM! And there was jumping up and down a little and squeals of happiness and YESSS!!!!!!

Now all we need is the pies, the ready meals, the lasagnes, the cottage pies the everything!

And one of the leading sandwich meat factories went gluten free a couple of months back, and another looks like its following suit! POLAND, you are shaping up nicely for people like us! Im so happy. Really. Its only food… and yet its the normality of walking in to a shop and being able to buy something that others take for granted.

Tesco Polska, dziekuje bardzo!

Inne wiadomości na temat życie bez glutenu w Polsce, nie zapomnij śledzić nas na Facebooku.

Phone calls to everywhere

Let me tell you guys something about living in Poland. It is HARD. Most of the time its not so hard, and then sometimes, its UBER hard. Like when your kid has been diagnosed with a rare disease that affects 1 in 20000 and your dr’s have no idea where to send you, like when you have to randomly google and try to find where to go and call and be hung up on by people who are scared to say they don’t speak english (Im sure they don’t mean to be rude), like when your husband is in Dubai and cant help because all the calls are long distance and many places don’t answer when they see a foreign number calling.

Like when you are texting instructions to your Polish friend and she spends literally days on the phone making phonecalls for you. DAYS. So far 4 physios do not want to see us. They are scared they will hurt her and they have never dealt with EDS. The dr we already saw is researching other more suitable drs, but his receptionist hangs up on you because I can only say hello and his name in Polish… the rest is english!

I have been looking (not so actively admittedly) for a genetic specialist since October, and the private one says the testing is not available at all in Poland, the private lab says they can do the genetic testing but its 6500zl. We have a referral to do it in public health which would be cheaper, but seems there are no genetic specialists? Or there are and they are hiding. Our dr. said forget it, you will wait years, go private. So do I go directly to the lab and get results that I wont understand? Go to the private dr that wont do the test? Or take my now probably expired skierowanie to all the NFZ places and hope they will help? There is an EDS specialist in Warsaw, one of our dr’s (dr S, THANK YOU for your absolutely amazing dedication to us) has been emailing him, but he is not replying.

Thank God for Daria. She called the NFZ Head office and got two numbers from them to call, tomorrow we will try again. I say we, because while she makes the calls I sit and fret and drink to much coffee (again) and try to keep more hairs from going grey (unsuccessfully I may add).

As a backup I also posted in the expat group and got a link from there for a genetics place, it says they mainly look for other things but surely they can do EDS too? Lets see. Fingers crossed InshAllah!

Must go drink more coffee. Number 7 I think? Its only 4pm 😀

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Preparing for Hospital stays

Ive done this so many times, yet almost every time its about to happen again I fill with so much sadness. Going to hospital sucks, no matter if its planned or emergency. But there are some things that help make our lives a teeny tiny bit easier.

I hope you never need any of these tips, but just incase you do, here are my essentials for any hospital stay.

If you are a family that sometimes needs to go to hospital as an emergency case, know it, accept it, embrace it and be prepared.

I have graduated from “bag always packed” to a storage crate with “hospital things” where I can quickly grab what I need depending on the situation (emergency / planned) and go. This also makes it easier for family and friends to find things that I may need brought to me as the things live in the box. In Dubai hospitals provide so much, in Poland hardly anything, but our needs as a family have been almost the same in both places either way.

-In Dubai we have often been lucky enough to have our own fridge in the hospital room, every gluten free families dream! In those that don’t supply a fridge however there is usually a patient fridge you can use. Sometimes there is even a kettle and some coffee making facilities. What ALL hospitals with a shared fridge have in common is that they want the patients name on any items they store there, usually anything without a name will get tossed away. So there you are trying to label your milk / cheese / juice at 3 am with a non working biro. Not me. Anymore. We have a hospital box now. Its just a small plastic container that is large enough to hold our butter, cheese, a small milk box and a few other bits. Its labelled with our girls name and lots of funky gluten free stickers. Not only is it clear it is ours, the box also protects our stuff from contamination. You can always spot a fellow chronic illness family by their boxes. Nobody uses a box for just a few stays…..

-A special hospital activity box. I saw another mum with this and was immediately super sure we would add this to our repertoire. I bought Ikeas smallest storage box and got the clips to keep it secure. Its small, but still large enough to fit things to keep us entertained for a few days. Currently our box holds colouring pens and crayons, a small blank book for drawing, a small colouring book. A stack of cards, Uno, some dice. A small Sylvanian family family, a beading set and some toy brochures. Our last hospital stay we had great fun decorating the box with stickers that I had brought along. I have spare stuff in our school room to swap stuff around with. The sylvanian family was bought especially for the hospital box so doesn’t get played with at other times, makes them special. Before the Sylvanian family it was a littlest petshop thingy with accessories. Its not so hard to find small things to put in the box, and whatever space it takes will be absolutely worth it.

-Toiletries bag. Yeah, so many times I would just franticly throw a few things in a bag, ultimately need more and buy it in the overpriced hospital shop or get hubby to bring stuff, usually the wrong stuff and he always without fail brought it in some supermarket plastic bag. We have toiletry bags we use for holidays and nights away obviously, but I bit the bullet and invested in a hospital one, large enough for me and kiddo to share, and always packed and sitting in the Hospital crate. Actually it was some freebie bag so I didn’t even pay for it. It has hand cream (you always, without fail need hand cream when you are in hospital, trust me on this one), toothbrushes, toothpaste, travel pack sized shampoos, soap, deodorant, a hairbrush and some hair ties as well as hair clips, and some sanitary towels. With the toiletries bag always packed I know I am covered. Almost everything is labelled btw. Because when your kid is sick and your brain melted 3 days ago, you tend to leave stuff lying around.

-Slippers or flipflops. Really. If you are in Poland some babcia or nurse will kill you if you have no slippers, and anyway, you don’t want to be walking around gucky hospital floors without. In Poland they will tell you off if you use your outdoor shoes indoors too. Just don’t argue with me (or them), bring slippers. (A small hint here, on day 3 or so of being in hospital your spirits will be a bit squished and you will feel crappy and horrible and you will miss your own bed, this is when your red IKEA Christmas slippers that you bought for 9zl in a sale will start to bother you because the other mums are all far more stylish and have way nicer slippers. Get nice slippers just for hospital stays, ones that scream that you are a fashionista and that will boost your flaying morale when its dipping. Not ones that make you feel like a total loser – trust me. I know.) Don’t forget slippers for the patient too!

-A small pillow and blanket, Make it a nice pillow, one that is usually in your kids bed, something that smells of home, and yet something that is comfy enough for you (mum or dad) to sleep on if need be. The blanket is to hide the hideousness that is hospital bed covers, and also again, for you incase you need it. Not all hospitals provide a bed for parents, and if they do, getting bedding is not always an option (or they give you the scratchiest blanket the world has ever seen). Having our own stuff has always been super comforting for both of us, again well worth whatever space it takes.

-If in Poland – Towels. We have been in I think 6 different Polish hospitals, only one provided towels and they were not very nice (there was more thread then actual toweling material). So in our hospital crate now lives a gorgeous pink ballerina towel for little madam, and a bath towel for me plus a small hand towel.

-Clothes, For you and your child. In Poland hospitals don’t provide gowns even for the sickest patients, so bring everything you may need. Keep in mind your child will probably receive an IV line soon after arriving so you don’t want long tight fitting sleeves, go for short sleeve things that are easy to take on and off. For you, lots of comfy t shirts and hoodies and soft pants. As long as your slippers look good you are ok, and you can use the hoodie to hide your hair. 😛

-Plastic bags. Seriously. They will give you stuff, your child will collect stuff, stickers and bears and small toys, you will need it for clothes that are dirty or have had accidents in. Just bring a few, if you can, hand dirty clothes to your spouse to take home when they visit.

-Charger pouch. Really, just do it. I have a small pouch with charging cables ready to go, you don’t want to be without your phone or iPad even for a second. I have a multi charger, so 3 cables can go in one adapter. Best thing I ever bought.

-A trolley case. A duffel bag may be all very well and good, but you may need to walk far with it if parking is bad, and in an emergency you may be carrying your child as well as the bag. Whatever bag you choose, make sure it fits everything on your list, and that it has wheels! We have a red bag that we only use for hospitals.

-Food. Snacks. Drinks. If in Dubai – ignore, just call room service 😉 In Poland however, you wont even get a bottle of water or a juice, you will need to bring all your own drinks and also snacks. For allergy peeps, bring your own food also. (Don’t forget coffee and tea and a cup and cutlery!)

With all that said we prepare for our next stay in hospital next week. Im heartbroken, but I know at least having all that we need will make it all a little bit easier.