Join me @ IBOtoolbox for free.
Sig Skeie
Member Since: 2/10/2011
  
performance / stats
Country: Norway
Likes Received: 35485
Featured Member: 13 times
Associates: 2238
Wall Posts: 9142
Comments Made: 54895
Press Releases: 352
Videos: 8
Phone:
Skype:     sig.superads
profile visitor stats
TODAY: 195
THIS MONTH: 2887
TOTAL: 1739787
are we ibo associates?
active associates
Louise Kinnear    
Last logged on: 4/22/2019


Annemarie Berukoff    
Last logged on: 4/22/2019


Michael Gielfeldt    
Last logged on: 4/22/2019


zita slawinski    
Last logged on: 4/22/2019


Pauline Burke    
Last logged on: 4/22/2019


Pavel Mrlian    
Last logged on: 4/22/2019


Cosmos Parris    
Last logged on: 4/22/2019


Linda Morris    
Last logged on: 4/22/2019


Ted Hunter    
Last logged on: 4/22/2019


Eugenijus Sakalauskas    
Last logged on: 4/22/2019


Eric Ward    
Last logged on: 4/22/2019


Bill Bateman     
Last logged on: 4/22/2019


John Bisbal    
Last logged on: 4/22/2019


Gloria S    
Last logged on: 4/22/2019


Val Mbayen    
Last logged on: 4/22/2019


other ibo platforms



Sig Skeie   My Press Releases

It certainly does not end

Published on 10/16/2018
For additional information  Click Here

I had to write this new article about Zarah Angelica, do to the new issues, and sad news comming from hospital after many new tests done. I wrote about the hospital trip in last blog about Zarah Angelica.

 

And its as the headline says, It certainly does not end. 

(Please dont bother about the typos, I had to get this out as fast as I could, and a typo doesnt matter, whats matter is this little princess life)

 

Everything she is now going through, it certainly does not end. 

After taking all the tests at Haukaland Hospital, Bergen, they Finaly could go home again.

At home they recive messages from Hospital. 


Read below this is what Zarahs mom is telling us:


New diagnoses and issues now that the Family thought everything was ok. 


However, it turned out to be many new findings on MRI this time. 

We received the epicrises the day after we got home, they are really effective at Haukeland. 
But to get the message that the condition was worse than we thought, became overwhelming. 

 



I often feel that I can lose you little princess and can not see me in a life without you. 
Especially in the bad times that have been now. 
And you've dropped 5 kilos and lost so much of the skills you mastered before.


I look back at the videos I've shared before, where we show your development and improvement with the CBD. 

And then I miss your smile, your eagerness to splash in the bath, your eagerness to play and the feeling that you're up to it.

The message we received was that Zarah Angelica has 4 intracranial cysts of importance, and probably more small ones. 



Some have increased in size. Fortunately, one had become smaller.

But the one who was not there last year was 3.5 cm in the scallops now. 



And this one was a "Dandy Walker" variant, this was something I and Carl Fredrik (my Husbond) already start read about when Zarah Angelica was in the stomach. 

(More info about the Dandy Walker here at Wikipedia: https://en.wikipedia.org/wiki/Dandy%E2%80%93Walker_syndrome )

 

It was scary I remember. Because when they discovered missing Corpus Callosum, we feared the diagnosis, because the pressure in the brain could suddenly be too big.
Then it is right back on the operation table to consider entering Shunt to control the pressure in the brain.


The picture below shows the ventricles enlarged at Zarah Angelica. 
Additionally, she has many brain malformations, which are more due to lack of brain bridges. 
She has grown a lot too, maybe much has changed with her growth, I do not know....?

 



We were told early that Aicardi syndrome is a very gloomy diagnosis to get, 
but now there is so much to keep track of. 

Aicardi Syndrome, Biliary Atresia, West Syndrome / Epilepsy, Lacuner, Migration Disorders, Corpus Callosum Agenesi and now the Dandy Walker variant on top of everything .... and its know that none of those can be cured.

You can treat sequelae or side effects along the way. We now decided to use some Benzodiazepines together with Haukeland Hospital.

Zarah Angelica is not sleeping very well, or not sleep at all true the nights due to many nightly attacks, and the hope is that Benzodiazepines can help her in the worst periods - it wont fix anything, but hopefully make her true the worse periods. 


The CBD-Oil goes too fast out of the system, so at night it may be good with something that works over time, so it can hopefully help her in her worse periods at night.

 



It will be wonderfull if it can help her, but we have been very afraid of such treatments, do to what i can do to the Liver.
We will keep it as long as possible. As she need something, do to all the attacks to her brain.



And if she damages her brain, we do not know what the consequences are.
Then we allso need watch how the liver takes this. Worse scene now is Zarah Angelica has to liver transplant because of it,.
It may be worth it because of the consequences of several brain injuries now is worse than a liver transplant.


Fortunately, she has a CBD, ridiculous part is; 
The CBD treatment that Helps her does not get covered by the Goverment 
(And this CBD is very expecive to get to the country) That she is just a KID, doesnt matter for the people in the Goverment at all, it seems like.

If we just could atleast have this covered, so we didnt have to fight agains the Goverment on top of all we are going true, and little Zarah has to go true.
Every year we have to apply again to try get it covered, and every year its the same. Not a Dollar from the Goverment of Norway.



Everything to help Zarah, to help her true the pain, to help her, yes Survive, we have to cover with our own pockets.

Thanks to many good people we atleast get some help, to cover some of the costs for this... Its wonderfull, but it feels so wrong that it has to be done like that, to save a kids life.

Bless you all.
Bergljot Larsen (Zarahs Mom)

 

 



We will come with more updates when we know more about the Battle little Zarah Angelica is going true. 
Really hope some more of you out there can help with a few dollars, and hopefull share our Gofundme page.

Please follow to get the updates first.

Thanks a lot to all of you who are helping and planning to help

Friendly
Sig

 

Follow Zarah Angelica at the Donations Page

Member Note: To comment on this PR, simply click reply on the owners main post below.
-  Copyright 2016 IBOsocial  -            Part of the IBOtoolbox family of sites.