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small clinic visit ... It has become

... not much new, except a weight loss of 500 g resulted in two weeks. Son can just eat almost anything, is not hungry, is "chronically sick." This week, we for the first time in occupational therapy, especially for the wrists, I now believe the boy has really zimlich get everything you can to help.
I'm so glad the holidays are now at last, when it will also only a week, and a few dates ... :-)

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autumn ...

... even with us, it is cold and windy, and sometimes a little rainy. Actually a Wetterchen to slow time to think of the winter sleep, but someone has been abolished and the probably even invented for the time change. C)

Last week Friday I finally reached someone at the clinic, because we went the Zuckerschnecke fortunately already feeling better. Warscheinloch media last week was the time degraded rapidly in the liver, can happen, is not a problem. In any case, it is now mostly seizure-free again, and this is the most important. And otherwise is she feeling better. After the diagnosis of epilepsy, it was so, which one had the feeling that it was "taken" she zimlich at every level, she could provide no more power in the Schuil was through that first treatment more difficult because it is the personality very strongly negative has changed.
The new drug seems to encourage her in except for the fatigue and appetite, my daughter has blossomed in recent weeks where the normal lining machine, who would have thought. : C))

and his son's Skin rash, it is also much better since he returned 10mg cortisone on the day gets, but the appetite was unfortunately not back with the cortisone. Otherwise, he is thriving, he has learned to jump, I am particularly pleased about.

Yes, and while my children are developing beautifully, my washer and my laptop decided to break.
this I in this and that and all the cheese does not go completely under, I've decided to visit again for a while, to my therapist regularly. As we "collectively" have my life last week, I was again painfully aware of what bad luck especially my children, and what I have to make every day. It is the greatest thing for me, my daughter is asleep seizure free and play, and can bounce my son, what is for most children so perfectly natural!

I can do everything what happened the last years, still not "grasp" and "get under one roof", the permanent poles in the way I have lost faith in life. Whether other people probably feel the same? One can in this way but a part of yourself back a hole of incomprehension remains but one finds oneself from it and tries to make the best of it, and prepare the children a good start in life. Time waits not always up times ready ...

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Attack on Labour Agency

unknown persons attacked on the night of Monday to Tuesday, the branch of the Federal Employment Agency in Bock's home. They smeared walls and threw a glass.

Federal Employment Agency
Photo: Reuters

Federal Employment Agency
Photo: Reuters

saw an employee of a security company it first: When on Tuesday morning at 5:30 clock his round made and the Federal Agency for Labor in the street in the district Hersfeld Bockenheim passed, it was already done. Unknown had smeared the facade of the house and windows smashed.

throw the stones for the discs they had brought with them obviously. Supposes at least the police to view the crime scene. The long-range scanning to the address by the arriving officers also brought no further information. The investigation is continuing.

http://www.fr-online.de

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3 days and 2 nights ...

... lasted the full seizure freedom with my luck "Marmeladenschnäuzelchen. Last night went to a then release it again, I can not describe how frustrating it feels. I did not realize it then awakened and sent to school when she got up at 9:30, they knew nothing of all this. And even when she was awake, it was not really better. So no error Was it not at first be sent to school ... Meanwhile, I have achieved in the clinic all day none of the doctors.

And dwarf nose? He's still a decent skin rash and also offers continue to be loss of appetite and bad mood. Because of the skin I was yesterday in the clinic, there was thought that it probably was a mistake the cortisone as soon be discontinued (or to sell at all). Now we do it again with 10mg/Tag and a special skin ointment on. The Medical Director said that it is definitely a GVHD, because the bone marrow is directed against the body, eg an autoimmune disease. Sometimes I wonder whether it was right to transplant, whether or not it have been better it would only try to tell me of a high-dose chemotherapy ... After all, the new bone marrow is not "healthy" was (Jem has caused an antibody deficiency of celiac disease). Whether this is the cause of the problems of the small, is questionable.

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On Sunday the dose was increased for the antiepileptic drug, the girl has spent a good day without seizures, and the next night was reasonably quiet. On Monday she is, despite sufficient sleep again hardly got out of bed, I have yet to iron sent to school, although I really am sorry if she is so tired. At 10:30 called the teacher, my daughter, it was bad, I should pick them up, then what I did quickly. On the way home she told her it was too loud undzu been exhausting, and she is so sick. At home she has lain down on the sofa and immediately fell in convulsions coma-like deep sleep with a few and light. So passed Hour after Stundde by 16 clock I thought then that it sometimes goes to sleep with and they have raised, of which she was not thrilled, but that's another subject. I called her doctor and said it probably just the dose is too high, and halved the dose for the morning again.
evening she was then already flat, and this morning she was again very difficult to get awake. But she had no perceptible Last night attack, she was even still on the pillow next to me where she is asleep at night. :-)))

son has man was removed from the cortisone, the rash is getting worse and itches terribly. The skin is red and the eyes and eyelids are somehow affected. He also eats totally bad, no matter what I cook it, which of course leads to it losing weight rapidly. This, along with some other symptoms continue to sprout leaves a sneaking suspicion that was heard often in recent weeks: GVHD (see "symptoms" -> chronic GHVD)
morning wants him to see the O-Ä, I hope that makes me smarter.

Before After Torticollis

Now there are but a few days back, has started since the Great with the new Medicare (Timonil), and was the old (Keppra) is discontinued. She has much less attacks, I can not say, especially the nights are still mixed, so I sporadically on the sofa, sleep in order to get even a few hours of sleep at a stretch. But for that last for no more seizures so long, and seem to me to not be as intense. During the day they think of right now, especially in physical education and general "too loud and too much comment on situations by seizures, which is exactly why an exemption is discussed from gym classes to avoid being exposed to unnecessary" trigger situations ".
Yes as I said, a slight improvement can be recorded by the new drug entirely, and the nasty side effects of old drugs such as "viciousness" Imbalances are a thing of the past. Which does not mean that the new Medicare would have no side effects, it seems almost contrary to the old. It makes you tired and balanced. Sorry, too tired, and we are not even at the recommended dose ... Possibly, if not the places, it could amount to which you also interfere with medication, it must ud altägliche simple things can be, it also re-exported without support. And that in turn brings us to the problem nights. For many years, and from many sides addressed, but so far the diagnosis because of the circumstances "not to be awarded: ADS
more about this after the next appointment in 4 weeks ...