Wanted to give an update to foggyme and others. I wrote months ago asking for advice in regard to my Autistic daughters serious medical issue and loss of brain function. I received a very heartfelt informative reply from foggyme. Wanted to let you know that my daughter ended up being diagnosed with Mycoplasma Encephalitis after her spinal tap/lumbar puncture. Her issues were not caused by her pernicious anemia. She has made good progress in her recovery and the neurologist believes she will make a full recovery by the 6 month mark.
Wanted to let you know and again I appreciate your response!
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Lorstor
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Hello Lorstor. I have to confess that I've been thinking about you both so your post is a very welcome read.
I'm so relieved and pleased that your daughter was diagnosed, treated, and is now on the way to a full recovery. I can well imagine what a terrible time you,ve had and elief this is for you all.
Think if I recall, there was also a concern because even though on B12 injections, she was having trouble maintaining her levels, which were often as low as 200. And your GP couldn't work out why.
So...sometimes this happens and nobody really knows why (so much about B12 deficiency remains unknown). The only solution is to have more frequent injections (some people have to inject every day to few in well).
I know there may be difficulties in assessing if your daughter still has symptoms of deficiency and whether her body is repairing properly from potential damage from B12 deficiency (all likely scenarios) with levels as but with levels as low as 200). So...hope her GP is aware that in these situations, the only answer is to give more frequent injections. It's also worth noting that when on injections it’s usual to have B12 levels over 1000...with some reaching much much higher (5999 is the highest we've seen). 200 is far far too low when on injections.
Once injections have started B12 levels are meaningless in terms of assessing the efficacy of treatment (unless they’re low - like your daughter’s- in which case more B12 is needed). The rule is treat the symtpoms, not the B12 levels, so I hope your GP is knowledgable enough to realise this (many aren't) and errs on the side of caution by giving more (especially since your daughter may not be able to describe or be aware of her symptoms).
Thank you so much for leaving an update...it's so lovely to hear news instead of having to wonder, what on earth happened too...😉
Good luck to you both and I hope that her continued recovery goes as well as it sounds it will do.
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Update on the GP visit
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