Friday, June 1, 2012

Gluten Free For Good?

Gluten Free. I always see the food in the health food aisles and hear a few people mention it sometimes.
I never thought we would be on the gluten free roller coaster.

You know what? So far, it would have to be the best thing we have ever done!

For the last year, Mr Z (7 years) has been having severe digestive problems. Problems you don't want as an adult, let alone a small child in primary school.

Last year we sent him to the doctor with headaches, cramping, diarrhoea, constipation and soiling himself. Usually all at once! He was sent for an X-ray which showed blockages all the way up to his chest!

Laxatives were prescribed. LAXATIVES? The poor boy is shitting himself? C'mon!

The doctor told us that he had constipation with overflow meaning that he was so blocked up that only liquid could come out, without warning. Mr Z didn't really feel the need to go and it was quite embarrassing and frustrating for him.

Well, laxatives did the trick. For a while. A few months later it happened again. And again. Then it happened for months on end and we were taking spare pants, jocks and wipes with us everywhere, and not for our 2 year old!! Coming home from work, one of my first questions for him at the end of the day was 'did you poo yourself? Who cleaned you up this time?

After months of laxatives on and off, seeing the doctor blah blah blah, i decided i was sick of 'masking' the problem with laxatives that can hurt him, and wanted to get to the bottom of why it was happening and how i could stop it. i was desperate for this poor child whose school friends would mock him everyday. I don't know who cried more during this time.. him or me.

I decided to see a naturopath. She took one look at him after hearing me talk about his symptoms and said take him off wheat and grain immediately. I agreed that i would, not fully understanding just how i was going to do this. She did a finger prick test and saw that he was low in iron and dehydrated as well.
We were sent on our way with iron, prebiotics, probiotics and a list of food.

No doctor suggested any of this. They suggested a colonoscopy down the track if he lost any more weight to test for chrons disease and coeliac disease but they did not suggest i try a gluten free diet to see if it would make a difference. Well it certainly has! I have been doing it as well, just at strict and can say it has benefited me as well. Ive gone from a 'once-a-week girl to an everyday girl!! I am not as tired or bloated and have even lost a kilo. (not that i need too :( )

But most importantly Mr Z is eating again! (he was so blocked up that his appetite had severely decreased)
He now has colour in his cheeks again!
He has not had one accident since the first day on this diet!
Not one headache!
No cramping or bloating!
No kids teasing him at school!
He is happy!

We are off to the doctor next week to have a chat about coeliac and chrons disease. He has lots of symptoms of both, including blood work. I will update again when i am closer to answer for this poor kid.

In the meantime, any suggestions for his lunchbox? Ha ha!

Thursday, September 29, 2011

Not My Daughter!

I am hoping and praying and crossing fingers and toes that my daughter does not also develop some sort of Autoimmune disorder.
Miss J has been sick all year including 2 hospital admissions for viruses. At only 2 years old, its hard to see her sick all the time especially when its hard to communicate properly with her. What is wrong this time? Your ears? Do you feel sick? ARGH!! Just last month after getting out of hospital she had an ear infection and bronchitis at the same time.

I felt like such a rotten parent.

So when she started vomiting with unexplained temperatures last week i decided to do something better about it. I requested the dreaded blood test.

A blood test is not something i want my 2 year old to experience but the way she had been guzzling water lately, peeing every 20 minutes and constantly screaming at night i though we would just bite the bullet and have one done.


Not three!!!

The poor darling, the first needle couldn't get much blood so we tried the other arm, After much digging around with the needle in both arms (digging for a vein is torture! i have had it done!) we still couldn't get enough blood. Out came a large plain old syringe. Argh, a third needle and my little girl was finished. My father in law and i felt so bad for the little thing! The pathologist wasn't sure if she got enough blood and said she would call if they needed more..... Thank god she didn't call as i wasn't sure if id go back!

I called the doctor for the results and she told me that everything was OK but she wanted to have a chat to me about sending Miss J to see a paediatrician.
OK - good! Getting somewhere!

I went to see the doctor and she told me that i had nothing to worry about for the moment but Miss J's ESR levels were quite high for her age. I know that having a high ESR level means there is inflammation in the body and that it is usually present in people with Autoimmune disorders. It can also be present in people with severe infections and can turn out to be nothing. But, given her family all have Autoimmune disorders she is off to see a paediatrician to have repeat blood work done and monitor her condition.

I am hoping so badly that it is nothing!

Saturday, August 6, 2011

Could it be happening again?

I spent hours in emergency yesterday with my sister (and our 3 kids!)
I went to visit her yesterday and she showed me very large unexplained bruises all over her. I freaked out as blood disorders and Autoimmune disorders are obviously in our family and took her straight up to the hospital.

After a lenghy wait (with the kids surprisingly well behaved) she saw the doctor who gave her a blood test. We waited for the results of her platelet count which came back normal. The doctor said that even though her count was normal, her platelets we actually NOT normal.

She was sent home with the order to see her doctor to have further testing done for an Autoimmune disease.

I am hoping it is not one. I will update when i know next week.

Master Z's Story

Last year when Master Z was 5 he woke up one morning with a swollen face on both sides, looking like he had the mumps. He was unable to eat or open his mouth and was very sick with a fever. I took him to the doctor and they thought it would be strange if he had mumps as hi is immunised against it. They sent him for a blood test which confirmed negative for the mumps. We didn't know what it was. They were saying that if he had blocked salivary glands then it would not happen at the same time on both sides. We were sent home with very strong antibiotics which cleared it up.

5 months later Master Z woke up with one side of his face swollen. I took him back to the doctor as he was really ill with a fever. He couldn't even walk and slept on me while the doctor checked him over. She gave us a referral to see an ENT and sent him home with antibiotics.

The doctor called me the next day to check on Master Z as he had been very ill in her office and i confirmed that i had made an appointment with the ENT and that the antibiotics had started working. He had begun eating again which was a good sign. She asked me a lot of questions about Master Z and i explained that his skin had always been dry and kind of scaly in places and that he had been having night sweats. I asked her if it could be anything to do with an Autoimmune disorder as my husband and i both had one.
"He needs a blood test." Was all she said.

Another blood test - another 5 people to hold him down... poor kid.

I saw the ENT the next day (I was very poor after that!) He said that if it wasn't an Autoimmune disorder then they may have to remove the parotid glands if it continued to happen (eeek.)

The day after that i got a call from the doctor to confirm that Master Z did in fact have an Autoimmune disorder and that he thought it was Sjogrens Syndrome. We had to go back in and get a referral to see a paediatrician.

After seeing the paediatrician who had no idea what Master Z had, we were referred to a paediatric rheumatologist. We had to call this paediatrician once we found out what Master Z had as he was quite curious. So was I!!

We saw the paediatric rheumatologist (there is only 1 in QLD....Lucky he was only 1 hour away!) He told me that he wasn't going to diagnose Master Z with anything until he had other symptoms and i was to drive him back the the hospital if he got his swollen face again. He told us that he thought Master Z had a mixed connective tissue disease evolving. He had another blood test and told us to come back in 6 months.

He woke up with a swollen face again 4 months after the last episode. Back to the doctor, he went downhill very fast. This time the doctor sent him for an ultrasound of the face to try and confirm it was Sjogrens Syndrome. Master Z was very well behaved during the ultrasound but the person performing it took me aside and asked me if i knew why he was having it done. I said "to see if he has Sjogrens Syndrome."
She confirmed that it showed the same pattern as a person with Sjogrens Syndrome.

As soon as the results came back the doctor rang me and told me to take Master Z for an urgent blood test. When the results came back from this one he said the patterns had changed and his Sjogrens Syndrome was secondary.... meaning secondary to something else. Another Autoimmune disease. Possibly several others! We will not know until he starts getting more symptoms.

I feel so bad like it is somehow my fault. I also feel bad as Sjogrens Syndrome usually affects women during their menopausal years and Master Z is only 6. I just hope that it doesn't affect his life very much - or get really worse as he grows. I hope he never has any other symptoms because they are horrible.

He is such a sweet natured little boy and if i could have this disease in place of him i gladly would.

Wednesday, July 6, 2011

Mr A's Story

I still cant believe that Mr A and I have the same autoimmune disorder. I think back to the time that we met, knowing nothing about this man who was to become my husband. It was love at first sight (seriously!) and i had no idea that we would be on this journey together.
Everyday felt right. Magical. We had 2 beautiful children, a wonderful marriage and after his diagnosis we knew that something had put us together that night. We believe we were born for each other. (I swear he was put on this earth to annoy the hell out me but that's a different story, haha!!)

Mr A called me while he was away at work. (He works away in the mines.) Babe, I'm covered in bruises!
The minute he said that i freaked. I knew what it could possibly mean but we put it down to his hard work. I told him to see a doctor but he couldn't out there.

A few days later he told me that as bruises were fading, more were appearing and they were definitely unexplained. I told him to stop work and come home but he said that he couldn't possibly have a blood disorder and continued to work.

I sat there thinking, could he have Idiopathic Thrombocytopenia Purpura (ITP) like me? No. Not possible! Then i remembered that before he left, he was complaining about blood blisters in his mouth. Crap.
I called and said that he had to have a blood test the minute he came home, if it wasn't ITP it could be leukemia! (ITP can be a symptom of leukaemia.) He said 'babe, i cant have the same as you and i feel fine, don't worry!'

He came home a few days later and refused to have a blood test till the next day, i looked over his large unexplained bruises and freaked out! The next day we went to the doctor and i said 'i think my husband might have ITP, he needs a blood test.' The doctor agreed and commented that it was unlikely and rare if we both had it. I knew he had it, i had been through it.

Mr A said, oh well, we will find out tomorrow. I said 'go home and pack your bags, they will call you at 5pm!" Of course he didn't listen and invited a friend over for the afternoon. At 4:30pm i was watching the clock. I knew they were going to call, as rare as it would be, i knew he had ITP too.

5:00 his mobile rings..... I stare at him while Mr A gives one word answers. He gets off the phone and says "Shit, my platelets are 5." We have to go up to emergency now.

I remember the call i got 6 years ago. 5pm. Platelet count of 5. What i went though. It was too much.
I bawled my eyes out and said "i knew it!!" So we frantically called our parents who were shocked! "Both of you? are you serious??" Packed a bag and dropped the kids off for the night.

The doctors in emergency tried to explain to Mr A what was wrong and we just giggled. "Yeah we know" we kept saying. The doctors asked us how we knew so much about the disease already and Mr A said "My wife has it" Pointing to me. I will never forget the look on the doctors face and he went to tell the other doctors on duty!

What followed was a few days in hospital and months of steroid treatment. (What i was most upset about! I hate those things!) They tested him for leukaemia and did a bone marrow biopsy which came back negative. It was definitely ITP. Still couldn't believe it!

Mr A has done surprisingly well though, my ITP was chronic whereas Mr A's ITP fixed itself in a few months! Although we have it for life and can relapse at any time. If Mr A relapses, the doctors will take out his spleen as they did with me. So far so good!!

Saturday, July 2, 2011

My Story

I woke up one morning after a big night out to find that i was covered in bruises and funny red/purple dots all over my legs, i put the bruises down to having such a large night and maybe bumping myself that i didn’t remember. The next day i was in the kitchen when i could feel something in my teeth.... i got it with my finger and found it to be a massive blot clot! then i had more later in the day, i though something might be up with my blood as i had given birth to Master Z, 4 months earlier... and i was still bleeding, when it’s supposed to only go for around 6 weeks!

I went to the doctor that day because i had already booked an appointment for my Master Z’s 4 month vaccinations; i would ask the doctor then.
I had completely forgotten to ask the doctor and was ready to leave when she noticed my legs! She sent me straight for an emergency blood test but me being me decided to go the next day as my son was grizzly after his needle.

About 3 hours after the blood test the next day, i was home about to prepare dinner when a doctor rang me and told me to get myself to the hospital emergency, they were expecting me! I’m like... what? I feel fine? I have a newborn baby!

After slowly packing a bag and organising a babysitter, Mr A and i went to the hospital where they did another blood test... and another...

I spent the night in emergency and then spent the next week in a hospital ward. I was diagnosed with Idiopathic Thrombocytopenia Purpura.
I started on 150mg of prednisone (never again) and was on that for ages. I won’t even go in to detail about that drug but i hate it more than anything in the world, yes it worked but sent me almost mental! i had lots of crazy stuff happen (after taking it for a year.) I had to see psychologists and everything. Turns out that steroids are not for me! I went through a year of my platelets never being over 100 and i was suffering every single side effect, to the max!

I knew you were not supposed to but i stopped taking them cold turkey (you can die.) Following, was a week I’d like to forget. Huge withdrawals.

After that, the doctors didn’t know what to do as i couldn’t have steroids and vincristine would make me too sick and i had a child to care for, so they opted to take out my spleen.

This happened 2 years after i was first diagnosed and the best thing i ever did.

I went to hospital and they put me to sleep and when i awoke i though they were still operating on me! I had the worst pain ever and 2 doctors standing over me, touching my face with blood on their hands! Turns out my nose
was bleeding due to the tubes that had to go in (as well as my mouth!) phew! I was in hospital for 4 days and lived on ice; i lost weight (which i liked!)

It has now been 4 years since the operation and i feel fantastic. I started out having daily blood tests for 6 months, to weekly for ages, then once a month and now I hardly ever have them. I am in remission! I feel great, no more hospital visits, less blood tests, 3 tiny scars, and i can say that I’m no longer sick. Fingers crossed I don’t relapse.

The Beginning

Where do i begin?

 I decided to create this blog after searching for other 'families' with Autoimmune disorders and found nothing. I still cant believe that 3 out of 4 of my little family has one - and to watch for symptoms in the 4th.

6 years ago i was diagnosed with Idiopathic Thrombocytopenia Purpura. An Autoimmune disease where your body destroys your platelets.

Nearly a year ago, my husband - Mr A - was diagnosed with the exact same thing. Doctors were baffled - its not contagious. I was bawling, i had been through it and it was not pleasant.

We were together long before either one of us was diagnosed - what are the odds that we met and fell in love?

Worse. Before either one of us was diagnosed - we had a son. - Master Z. He is currently 6 years old and 9 months ago was diagnosed with a mixed connective tissue disease. Sjogrens Syndrome is one of them, we will not know what else he has until he shows symptoms.

We have been told that because Mr A and I both have Autoimmune disorders, it is likely that our children will too. We had Master Z before we were diagnosed! So we are worried for Miss J also.

Fingers crossed.

So here is our story. I dont know how it will turn out. I only know how it has begun.
Hopefully this blog will be uneventful but id like to think that others out there can read it and not feel alone.