My baby girl xxx

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love!!!

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Hello ,

My daughter had her first noticeable seizure at 5 days old . It was non stop
from there and at there worst was having them every hour of every day clustering also..... ACTH Topirimate phenotoin we tried everything..... untill.... we found out Isla has something called ADH it is a sodium problem to do with the renal glands so Isla has been on sodium supplements and has not had a seizure now for 9 weeks:woot: Although the docs were baffled by this side of things ( sodium deficiancy) they say it is not the cause of the seizures but would not be helping ???? Im on tender hooks ... She does not seem to be developing as she should she is 8 mo and still not smiling :dontknow: But very very dopey she has her mads at 10 - 10 and will sleep for most of the day ! Could this be holding her back (the drugs) or have i got to face facts that the seizures are trying to tell me there is something wrong:brain:
 
Hi love!!, welcome to CWE!

I agree, it seems odd that the docs say there's no connection between the sodium issue and the seizures, especially since electrolyte imbalances can often trigger seizures, and according to one study, hyponatremia (excess water/low sodium due to ADH problems) was the cause of seizures in 70% of infants younger than 6 months when there was no other apparent cause.

It's definitely possible that the meds are affecting her development. Any chance the dosage can be lowered a small amount to see if that helps? Is she seeing a pediatric neurologist right now? Has she had an MRI or EEG?

Best,
Nakamova
 
I just want to give you big ***hugs***. Watching a baby of 5 days suffer seizures, I cannot imagine how hard that was.

Hopefully she shows improvement and starts flashing her pearly whites soon. Keep us updated.
 
Thankyou!!!

Isla has spent 12 weeks in hospital in total 5 of them being in London Evelina children's hospital. There she had every test under the sun.
MRI came back clear EEG background was chaotic but was better than the one before.
Yes Isla does have an amazing team around her but it wasn't her doc that highlighted the sodium problem it was the doc on call that week Dr Lin (thank god for him) Her Doc Dr Williams doesn't seem to understand the renal side of things and openly admits that.
I do agree with you about seeing her doc and talking about dosage, wouldn't it be fab to really see her come out of her shell:woot:
And thankyou for the positive words .......and the cuddle x
 
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