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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Overwhelmed

There is so much new information, ALL the time. Celiac… I know this disease, this is my forte, you could ask me almost anything about celiac and I know the answer due to my almost obsessive research. Now, EDS….. and the lung disease no one has ever heard of (including doctors) and that nobody can spell, the diseases and other things she may have or may not. Its just so much to take in. I thought I was ok with it all, that I was coming to terms with it but then I found myself bursting in to tears at physio today and I had to sit with my back to her looking out the window – quietly crying – until I was able to stop.

Not so much that she has all this, I can deal with that, but the fact is she is in pain. Almost daily pain, pain that will be better some days and worse some days but that will probably never ever fully go away.

This is why I cried. Because she is in pain. My tiny teeny little girl who never did anything to deserve any of this, who is so brave and hardly ever complains, she is in pain, and my heart breaks in a million pieces for her and I just want to take all that pain and put it in my body so she can be ok.

I gave her pain meds today, I have only ever done that once before. I didn’t know what else to do. Physio today with hubby there to support language wise was great, we will be getting various equipment for her, to help her stabilise this wonky body of hers, to help her with her pain and hopefully make things a little easier. Again. This is why I cried. 

I cried because my baby girl needs equipment. Not because she has EDS, not because she is different, but because she has so much pain that she needs equipment to try to alleviate some of it.

I cried because my darling girl, after a busy weekend was in so much pain just sitting in the car. I cried because I had to ask my husband to carry her because I knew she would hurt to much walking. I cried because she is paying the price of an awesome weekend with pain.

I cried because I cant – no matter how hard I try – ever take that pain from her.

 

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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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Its May again

May is important in my house as its Celiac awareness month. This is the first May that we know for sure all 4 of us have it. May is also Ehler Danlos awareness month, and Lupus awareness. How awesome is that? (Or actually not so awesome as it happens). As you know my daughter has EDS and is under investigation for Lupus. May is also when her birthday is!

I will do my proper Celiac awareness post later in the month, but for now, please, if you do follow my blog, pop to my facebook page and share some of the celiac awareness posts Im sharing in May. There will be a new one daily, all tagged #celiacawareness #nochoice #pleaseshare . Maybe we can reach another family like mine, a family that suffered greatly and had never even heard of celiac disease. Maybe we can help prevent some suffering somewhere. So head over, like or share or comment. And Thank You!

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Immunology update

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I forgot to blog about our most recent hospital stay. I did facebook and tweet about it, but not blog. I do that a lot recently, while I really want to document our journey I also find it hard to write, partly because Im so mentally drained, and partly because writing about it makes it so god darned real.

Im a happy kind of guy (ok, lady), I joke and smile and laugh, thats how I get through life, and that stuff that I feel deep inside, it comes out when I write. So when I don’t write…. its because Im not really ready to let it out.

Well, we went to the hospital, zebra blanket, food, toy box etc all in tow. We got admitted for our 36 hour stay and had all the immunology panels re done.

I still have to wait for the subclasses to come back, but the main classes are in, Her E is up almost to 1500 now (should be below 90), still not high enough for a hyper igE syndrome diagnosis but if it keeps going like this it will be eventually. IgE is allergic reaction, and while her numbers are off the chart there are no allergic symptoms. Her M is up (GREAT!) and so is her A and G, the G is particularly great news as it was very low before and its mid range now. If thats all greek to you then lets just say that all those numbers are representing different parts of the immune system. So while before she was borderline deficient in most, now her numbers are looking better, however, as the igE is so high we are still immunology patients. We were hoping to be signed out of immunology, but nope. First we need to see what the subclasses say (letter should come in a few days), then we must repeat all the tests again in 6-12 months. With the igE the way it is we may very well be immunology patients for life. So, immunology, rheumy and lung. Its ok. Im feeling very positive.

Having said all that, being in hospital was a great experience for me this time, we were in a room dedicated to patients doing infusions for CVID and similar. One young girl came in, around 14-15, she did the whole thing on her own! They arrived at 9, the nurses were there supporting but she infused by herself, she stuck herself, infused, and removed once done. She and her mum left by 12. Not sure if her next monthly infusion will be in her home or not, but I was as proud of her as if she was my own child. How amazing. And we CAN live with these things. Its not so bad! Me and her mum, we needed no language. She saw our Zebra blanket and A’s mask and we were instantly in this club together and her smile told me just how much she was there, really there with me.

All in all, immunology, yup, we are still there, but its ok 🙂 In June we go back to Rheumy, then in July back to Lung. Then – DRUMROLL – In September, kiddo tries to go back to school! Keyword here, tries ….

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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.

 

5 years gluten free!

We have been gluten free for 5 years this week. 5 whole years! I remember it like it was yesterday. We were called in to the clinic, it was a Saturday morning, they had some results they said. Aili had been in and out of hospital, I was drained, mentally and physically. My life revolved around my screaming baby and lots of vomit.

We went in, the clinic was busy, lots of screaming kids, everyone was rushed. All the staff knew me by then, by voice, by name, by daughters name. We were ushered in to see the dr between two others who had appointments, it was rushed, no examination, papers handed over. I had been hoping it was lactose, but it wasn’t, it was gluten and my whole world was spinning.

We walked out, papers in hand. Gluten cant be in to many things right..? My son was hungry, my baby girl was hungry, we were in a mall and the mall was spinning. I let out a small sob. My drained self couldn’t cope. That small sob was it. My husband rolled his eyes and told me not to cry again, our life was a mess.

I never cried about gluten again. I cried many times since obviously, but not about gluten in particular.

We went to mc Donald’s. Son had a burger, Aili had some fries. No gluten in fries right…? We went home. We went home and nothing was the same again…..

It was good different though, not bad different, because the vomiting….? It stopped that day. Our girls life was saved that day. It continued to be saved every day since.

I look back at that day now, and I feel sorry for the exhausted mum that I was, and I wish I could have given that mum a hug and told her it will all be ok, that its only hard at first, and that life will get better now. I wish I could hold that mum and tell her to cry it all out, get it over and done with – the crying. I wish I could go back and smile at that mum and encourage her, because back then, going gluten free seemed like such a huge huge task, keeping my baby girl safe seemed so impossible.

I was so tired from months of illness and hospital and clinic visits that any task – no matter how small- would have seemed impossible that day.

We did it, of course. I did back then what I still to this day do with all the new stuff. I learned everything I needed to learn, I got on with it, I looked forwards and upwards and onwards and I remained as positive as I possibly could, and I have, almost every day since. Even in my darkest deepest moments of despair, I am still a very glass half full kind of girl.

Gluten now, 5 years later seems like such a minor thing compared to all the things we are facing today. Sure, its hard still, but its second nature, I have done it for so long it no longer bothers me. 

If you are that mum that I was that day, today, tomorrow, yesterday… please know this. It gets easier. Really. It really really does.

Happy 5 years to us!

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Dont forget to join me and my family on Facebook! 🙂

 

Not going to “normal school”

Im so tired of all the “knowitalls” and having to defend our daughter not going to school. Its like they think we are keeping her home willy nilly for FUN just because we feel like it.

“She wont thank you for it”, “She needs to be with her friends or she will be socially awkward”, “its not good for them to be home”. The worst ones are the swedes (no offence meant, remember, I am a Swede), because homeschooling is not legal in Sweden they all seem to think of it as something worse then witchcraft and I am obviously damaging my child by not letting her go to school. What the doctors say doesn’t matter. Clearly.

Strange how as an adult its ok to not work and to be long term ill or signed off as disabled, but a child must go to school or you are ruining them for life. I have two words for them all. FUCK OFF. You know nothing. You don’t know us, you don’t know the struggles we face or have faced, you don’t know that your child’s sniffle could mean a lengthy hospital stay for us. You don’t know the amount of thinking, anguish and tears that have gone in to this decision, a decision which was finally taken away from us when the doctors put their foot down and said NO MORE!

We, as a family are having to come to terms with our daughter, our child, possibly never being able to attend what you call “normal” schooling. Nothing you say is news to us. We have taken it all in to consideration. We know how damaging it may be, we know. We have also done our research and we also know that most homeschooled kids are well adjusted awesome human beings. A high school teacher friend of mine said she has never met a previously homeschooled kid who was socially awkward or not up to speed academically.

We are not hippies who don’t believe in education. We are not weirdos who think the system is faulty. We are not deeply religious people who pray all day (maybe we should – perhaps it would help!). We don’t feel the need to carry a sign signed by our doctors (our team of doctors I may add) saying “She is to ILL for school”. We don’t owe you or the world anything. The minute you say you homeschool every Tom, Dick and Harry (and their cousins uncles neighbour) has to have an opinion? I mean seriously? GO AWAY!

Our 6 year old is a well adjusted, friendly, polite, non awkward life and soul of any party. We do not need your advice. Thank you.

Phew. Needed that vent.

And I said the F word. Bite me.

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