Wednesday, August 8, 2012


Hello,
we didn’t write our blog for a while, and also this period is full of news. First and most important is that we are counting the days until we start with EPI- 743. We also know what Nina should go trough in this period, I mean all the blood work and examination, every time she cries ,our souls are burning, for the fact that we don’t know if she has pain or she is aware of her condition and she just express her feelings. We have tried her awareness and cleverness in different ways and we know that she understands everything and even more for a child of her age. We are having an appointment for sleep study at 27 August in Cologne and after that we should be hospitalized back in Duesseldorf Uni-Clinic to start with EPI and the examinations the very next day. So, we have 20 days till then. In the mean time, Nina had one very difficult week which started with vomiting and we couldn’t came to our “normal” condition for a week, she did not sleep at all,also her heart rate was higher than usual(150-180bpm), her body temperature was higher(rectal 39.3 C), so we gave her different sleep medications but it seems that they would only worsen the sleeplessness, because she receives methadone, and it’s effect is very much stronger than other medications, so it was bad anyway.
                           
                                                            Nina and her Barby














 We are using Idebenone since February, now we run out of it and we ordered from USA, we still did not receive it, and it is 20 days since our order, meanwhile, I also ordered other supplements:

1.Gluthation,cysteine&C-these components are the building blocs of forming Gluthation, the body’s strongest antioxidant, the only problem is that it contains 500mg vit C, and that is too much for a child, also we receive mail from Bukovac  family about their experience with different supplements and they had recommendation from their mito doctor  with the following note:
"Given that vitamin C "dumps" electrons into complex IV, I would not give more than the standard daily requirement as a supplement. As with other antioxidants, vitamin C can also act as a pro-oxidant, so I would not want to add additional vitamin C for this reason."

I will give Nina ½ capsule so that the vit.C will be close to the 200mg dose that she received till now.

2.L-Methionine-this amino acid is also one of the precursing molecules in producing the final product-gluthatione and also very important in forming and synthesizing some neurotransmitters like dopamine,serotonine and others, I got it in 400mg film coated capsules, and they are very hard to crush and to give over the PEG-J tube, so I will give that to Darin(1/2 two times a day) and I will try order in some other form like powder

3.Acyl Carnitin-we still did not start with that because we already take a lot of supplements so I will wait to start with EPI first and then discuss about it with Edison Pharmaceuticals, we are not allowed to take other antioxidants after starting with EPI but maybe we can give some vitamins and supportive amino acids, we will see which exactly


4.Gamma Vitamin E(all the natural vitamin E components, not only tocopherol fraction)-giving that there is a constant correlation with the vitamins and cofactors in the cell metabolism, for example Vit C,Vit E, Coenzim Q10. Gluthation, Alpha lipoic acid and others, it is very reasonable to supplement Vit E, his part in the cell is double-as a free radical scavenger and also to replenish gluthation and other antioxidants.
I started giving Nina also, but she vomited in two occasions after administration so I stopped giving it to her, Darin tolerates it well.




Also, I received couple of news, for example the Hospital where I was supposed to work has canceled my employment because they waited for me to long, actually they waited for mu papers and professional permit to work as a doctor, which were in the responsible authorities since 25.04.2012!(they say that it is postponed because of the summer vacations), i also engaged a lawyer to help me with my employment, he said that he will “find the way”, he actually found the way only for 500E!! And only to give me back one letter with the same things that I already knew! It was very bad and expensive  experience. I never wanted to have anything with lawyers, they are leeches, but sometimes you must.
So, I started looking other possibilities, like finding a job in different parts of Germany, where is possible to work with limited two year permit as a physician, until I pass the state exam. So, i went last week to pick up my documents and the lady there told me that my papers are back from the expert, who should give a decision about the difference between German and Macedonian medical diploma, and she said that she will send me a letter next week and explain what is the decision!!!!
I said, I came to take my documents, I am almost 3 months without a job and any income, and now that you have it I still have to wait another week? Then, she opened my papers and she told me that there are differences in some areas of my study with the German, so that I will have to make the exam anyway.
I already knew that but she told me that first appointment to pass this exam can be appointed for April 2013!!!
Then, for some miracle, one man came in the office and told me some possibilities and he pulled me from that office and took me to his. There he explained a lot of things about the procedures and he told me that he will try to make me an appointment earlier. So he did! He gave me an appointment for the 19.September this year!!! It is very, very soon, so now everything is up to me, I have to learn a lot and to see if I can do that!!!!!

Just for a reminder, we came in Germany last October, our language skills are not yet so developed and to pass this exam I really must show some medical knowledge and language skills.
But, the love that I have for my children and their smiles are giving me wings, so we will see.
 There aren’t any other people that I know to connect with about the exam, so that is difficult also. Of course I also have to find library in our town, so that my wife can be with the kids, and I will need some quiet place to focus myself on the learning.
If I pass this test I will be able to work anywhere in Germany as a doctor without any time or other limits.
Also, I have to pass tests and driving exam in the same time, EPI protocol will be conducted in the same time, therefore we pray to God to give us strength in this period.


I like to thank all the noble people that donated for our cause, we received about 2700Euros on our account all together and we still don’t know the sum from the telephone donations, so thanks again!

Today we went to Holland, we found one little city close to us and we went there, it is the first time that we were somewhere else than our neighborhood, we had fun, only that Nina had a lot of secretion, I mean a lot, we had to hold the suction device on all the time for half an hour in our hands, I think It was because of the 50km car driving, maybe that had some expectorant effect and had mobilized the secretion from the basal parts of her lungs, but even with such boring and annoying thing, she gave us a lot of smiles.

         

                          We thank our kids for those smiles, and we pray the Lord for more!