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Baby with neuro-problems (German)

thilo thilok at t-online.de
Tue Feb 23 17:34:35 EST 1999


Many thanks to Cijadrachon!
In the meantime I got some more understanding in the translation, I´ll
correct/add in Cijadrachon´s text.

Cijadrachon wrote:

> (Bad vague partial translation)

Pretty good!! Thilo

> 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 (the video is yet not
> digitalized)
>
> 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**we could provide the EEG on demand,
> Thilo)
>
> 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".

****the "kernspin" is somehow like "x-ray-ing" but using electromagnetic
impulses.(nuclear spin tomography)

> [Don't know the translation, literally nucleus or core - spin -
> examination.]
> Which showed for the entire rim area damage like [?]embedded fog.

****we could providesome BMPs on demand, Thilo

> 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.

*** BNS means "Blitz Nick Salam Syndrom, also known as "West syndrom" or
"Jackknife syndrom", Thilo

> 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".]

***It is something like "organic waste". for example: the baby´s organism
is unable to use material "XYZ", but also unable to get rid of it on the
"natural way" (pampers). It is using the brain area as "rubbish pit"

>
>
> 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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