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Baby with neuro-problems (German)

Cijadrachon cijadra at zedat.fu-berlin.de
Sat Feb 20 21:21:41 EST 1999

(Bad vague partial translation)

Please help with the following problem:

After a first hospitalizing of our child in the children's clinic in
Paderborn, Germany, we are not knowing what to do and seek help.

Around Christmas time we observed that our baby, Dana, 8 months,
did things disquiting us, always after waking up:  

She squeeze here eyelids shut and also her lips, as if she had to
swallow something bitter.
Her head indicated a nodding (slower than when sneezing).
Sometimes here hands, parallel to the body, knocked on her blanket.
Within the "fit" she just reacted to talking to her in limited form,
afterwards she was awake normally.

Sometimes such would last some seconds, sometimes minutes.

Since the 10th of January it stopped. 
Fortunately we could record the last one on video (see [?]added VHS

For several days she was in a children's hospital in Paderborn for an
"examination-series", and these are results of it:

The EEG showed strong deviances from the usual pattern
(see [?]example in added part 1)

The recorded EEG while in the clinic is distinctly more normal, 
but that might have to do with medications give the day before for
anaesthetization for the "Kernspinn-Untersuchung".

[Don't know the translation, literally nucleus or core - spin -
Which showed for the entire rim area damage like [?]embedded fog.
(There are recordings as BMP.)

The development - examination (when Dana was 8 months old) for most
areas resulted in the status of 12 months 

Blood and urine examinations were without special results, apart from
a slight deviations in the [?]"Laktose"-amounts (that could have been
caused by stress when the blood was taken).

The medical superintendent of that ward in a final talk said that so
far the according problem had not been diagnosed in Paderborn
and that the examinations need to be continued.

The cramps according to the the video recording however do not seem
like [?] BNS.
The damages in the brain might have to do with a metabolism defect.
This might a fairly harmless prenataly caused static condition.
(Also in a second diagnosis from Muenster it was assumed that there
might be metabolism damage.) 
Or the defect is acute and every day the brain gets damaged more by
the "Ablagerung".   [Dictionary: sedimentation, forming of a deposit.
Referred to earlier with the "embedded fog".]

We were told that chances to find counter-measures after realizing the
cause might be there but small.

There are very many possible tests via which one might get closer to a
better diagnosis, but to maybe spare our baby endless rows of them,
and also to not lose time in a race against a metabolism defect,
we are turning to people who might have experience with such or
similar cases?

We hope to find advice for a more aimed search for the cause of the
problems and how to help our daughter.

We'd appreciate very much if someone knowing professional / experience
based advice could contact us.

(Bad  and often not literal  partial translation of Thilo + Erika's
previous text.)

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