THE MARFAN   MOTHER

You don´t have to be the smartest person on the planet to realize what role diet plays in our bodies, as well as chemicals in the form of pills and other things.

I guess I take pills myself and dont judge everything, but when Im in so much pain that I dont have another way to take and then I take an Ipren. I prefer to opt out of medication if possible because all forms of medication come with side effects and that is something you should keep in mind before taking it.

 

To begin this whole story, I have a 19-year-old son who was born sick, he was born three weeks early through an abdominal incision while sitting up and weighed barely two kilos, after two weeks he had emergency surgery for an inguinal hernia and then a couple of weeks later later for umbilical hernia. He had a stomach ache right from birth and it was very difficult to breastfeed him because he had a stomach ache it seemed.

When he was less than a year old, he collapsed in the TV room completely blue in the face and drool and foam came from his mouth. My first thought was that he had something stuck in his throat, I shouted at my then-husband who came running, we tried to revive him while we called 112. My child was hanging lifeless in our arms. When the ambulance arrived we sped away, a scream was suddenly heard inside the ambulance (I went to the front) and it was the best scream I have ever heard! Our son lives!!!

An awful lot of people at the hospital were already connected when we arrived, samples were taken here and there but no one could find why. The answer we finally got from the doctor was the stupidest thing Ive heard when I think about it today (I was so shocked at the time)

Children get cramps like this sometimes and we dont know why...

Well, I think, why dont you just look for why?

We were sent home with Stesolid, i.e. pure dope, sickly addictive...

We then had to try to live with this, the uncertainty...when will he have another cramp like that? Will he survive then? It was really hard, we hardly dared to go too far in case he had another one like that and its too far to the hospital.

The stomach pains continued for the rest of my life, in and out of hospital for the problems but no help...he had strange "seizures" almost like narcolepsy...he could throw up right out in the store and then basically collapse in my arms and it was just that leave the basket and everything and put the boy in the back seat of the car and go home, the sweat running down his forehead.

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Time passed and Melker was over two years old and started to show signs of light sensitivity including on the occasions he vomited...he closed his eyes and then I began to suspect a migraine so I raised this with the childrens department.

I had to meet one after the other and no one came up with a good answer, the solution was alvedon.

Oh my God, we had to use alvedon, the kid was sick pretty much 3-4 days a week... they were enough for us to just leave the house and he was sick. You were as if isolated.

The funniest suggestion a doctor gave me was that the son should have rest breaks in kindergarten....

Ok how do you do that with a three year old?

Yes, my God, when I think back on all this misery and how good it could have been if I showed what I know today..

I called all the hospitals in the country to get help...he still hadnt received a diagnosis; but I was convinced it was severe migraine attacks..

I finally got hold of a researcher in Gothenburg whom we were allowed to visit who examined him and asked like 1000 questions. What he came to was that Melker was born with abdominal migraines, hence his pains which then turned into head migraines.

Yes, then we showed it but it didnt get better of course, the only answer we had was that it was a migraine and we could hope they would grow out. The migraines continued, the son was given medicine to cope with his sick pains, finally the organs stopped, he was not in good shape in the stomach.

It couldnt be like this anymore...

 

The change and the light that fell on me came in connection with the swine flu scandal when families started warring with each other and society almost lived in fear and people queued to get injections...I was very skeptical and listened to my gut feeling and we turned down the whole family...I started read about injections, pills, fell into some groups, started reading about the importance of diet, supplements, etc.

I joined a group and where the majority of mothers (very, very many) described exactly what we were involved in before the son was a year old... the seizure and this was directly connected with the MPR syringe. There are many documented cases where the parents have had the law on their side up in the district court because it destroyed their child. Many children had been affected even worse than our son, other children stopped talking, rolled their eyes and became severely autistic right after, i.e. perfectly healthy children to injured ones.

This was the starting point for our journey...I had gotten my why, raise this of course but the doctors deny of course.

But now it was the migraine that was the big obstacle in my sons life, being able to go to school, for example...

To skip a bit in the story, I suggested to the husband that we try and make a radical dietary change and test if it can be that simple?

When the son was off in the fall/winter, we tested. We removed all bad e-numbers, all spices, bought only organic, no sugar, gluten and milk.

The migraine disappeared and the boy recovered, not a single seizure…

When school started and the son ate there, he came home sick straight away, he got really sick.

I had the proof in front of me...I raised this immediately with the school about getting a special diet so he can cope with being at school but they said no, a dietitian was there and tried to teach me how important it was with the nutrition circle and how healthy it was was to drink milk and then I couldn't bear to argue with them, it refused to give him a special diet because what I came up with was not scientific...

So what I had to do was send lunch boxes to both my children every day. My God, how the kindergarten staff complained, poor children who weren't allowed to eat sugar when everyone else got it...I personally thought it was pure idiocy to feed the children sugar several days a week, like cake and ice cream because there was always someone who needed to be celebrated...but I stood my ground, this was for the sake of the whole family after all these years of isolation.

I was all alone in this war, about food!!! Can you imagine, absolutely insane.

 

 

I also gave my son supplements because I read how good it would be, then I went on Holistic supplements and to this day I find capsules among books etc that the son hid ahhaha, he didnt think it was particularly nice and they also taste like crap when shared on them.

 

Finally I found Fitline, nutritional supplements that you mix like juice, one drink in the morning and one drink in the evening, taste wonderful and all problems gone, no more capsules or green drinks. Everything you need in a drink, perfect!

 

 

I saw it was the story that made me the seeker I am today and I am not satisfied with a simple answer, there is always something to do, there is always more than one why...do it again do it right.

However, I have to admit that I am not as restrictive with my diet as I was then, that changed when I moved to Norrland, when my husband and I divorced, we stuff ourselves with food that may not be so good, but I still try a little, but the plan is to be much better again.

 

When we started planning children (me and my current Jonas), I told them about my conditions, that the child should have it as naturally as possible...no chemicals in the body and do their best to maintain good health.

I breastfed Freja for two years and after that I made my own gruel which I mixed with oatmeal, which she drank without any problems.

She is basically never sick like many other children, colds, stomach flu etc...

 

Now shes been diagnosed with Marfan syndrome and it probably wouldnt have mattered if I only eaten carrots or whale meat because we wouldnt have been able to do anything about it...believe me anyway :P

 

But now when it comes to this diagnosis and another journey with a child (although the migraine right now feels like a fart in space compared to the marfan) it is still a journey and having to be at the forefront.

 

I immediately started checking, how can I prevent, how can I help her along the way?

Marfan cant be cured, but you can wrap everything in cotton, I think...

How can I prevent her from possibly lying on the operating table prematurely for the heart, for example...

Of course I put her on Fitline straight away, tastes good, easy to drink and contains everything she needs from what I read about the disease. Because these patients have problems with the heart and lungs, you should eat "heart food" and have a healthy lifestyle, avoid bad salt, for example. Eat lots of greens.

Read about a study on mice that in 20 weeks of treatment with b-vitamins, b6, b9 and b12, the aorta had shrunk and they could no longer find any errors.

The collagen is super important for her connective tissue so I give her extra. 

 

Freja got her diagnosis in December 2021 and you cant make all the changes at once, but I'm taking it one day at a time. She basically complains every day about pain everywhere on her body and the goal is for her to have as pain-free a life as she can, and with previous experience I know what an anti-inflammatory diet can do.

Today, I can actually see a little more change in society on the anti-inflammatory diet concept, above all among the rheumatics where they got less ailments when they changed their diet.

The doctors of course continue to argue that dietary supplements are not scientific, but perhaps they need to be reminded where the medicines basically come from, they seem to have "forgotten" that

 

Now in this case I feel that this disease does not show its face and we will have to live with the uncertainty that prevails, I probably think she has a milder form but what we dont know is how this will affect her during the day tomorrow so therefore I am 7 steps before.

 

I'm looking up my whys and what can I do...her eyes for example...she has lens luxation in both eyes with some cataracts...what can we do there purely in terms of diet to help? Now she operated on one eye last summer and they hope that they can postpone the time as long as possible on the other eye, so my thoughts are of course that how can you strengthen the eye in the best way, or is it even possible?

In my world, better to try than not try at all…

She will definitely have to take medication in the future, as I said I dont condemn all pills but when it has become a financial thing of the whole thing, my eyelids start to twitch and that people refuse to look in the alternative direction in the healthcare in Sweden... why like ….

The Germans are good at collaborating in healthcare with the alternative, so why not us?

 

If Freja could choose the food every day, it would be macaroni and sausage every day hahaha oh how would it end up in her body in the future? Then I feel a little safer, in fact, that she gets her supplement with 24 ingredients every breakfast, everything from turmeric to broccoli, the ear and other vegetables that would be difficult for her to get through food in the usual way

 

 

The change in diet will come, but we will take it at the right pace and the older she gets, the more she understands that it is good for her and if she doesnt eat certain things, she has less pain, etc...

 

Something interesting I found in a Marfan group   on the net was a mother who told me that her child had no problems for 8 years since they gave her red algae and that they ate a diet based on their blood type...I have read about this many years ago eating according to ones blood type and it is very interesting. When I go in and read about my own blood type, they can actually be right, because I know that I get sick to my stomach (pain) from certain things and it says that I should avoid them when you read about it...could it be so simple?

 

What Freja eats today (supplements) you can see below and what she should get more of.

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You are welcome to order from me, the more people who order, the more it benefits Freja because there will be more kroner in the cash register and supplements cost a lot and it is difficult to get it together financially, but every kroner is worth spending on her, I want to keep her healthy, I want to keep her alive and I want to prevent!!!

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Love and respect

Petra

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Click on the link to shop directly from me in the online shop

 

40151830.fitline.com

 

 

 

 

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40151830.pm-quickstart.com

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