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Here are some suggested organisations that offer expert advice on SN.

hydrocephalus and hemipledgia

(5 Posts)
lekki Sun 06-Mar-05 22:30:19

hia my daughter has shunted hydrocephalus, hemipledgia,and epilepsy, she is nearly 3, she cant walk, just bum suffle. i find it tirering try to get things she needs, i.e equipment, statementing etc. shes up and down with her shunt,shes had one blockage and 1 preasure cheak, last year she got menengitus. i do find the worry hard still but i just get on with it.anyone else living on the shunt.

charlie95 Mon 07-Mar-05 19:53:23

hi lekki, do you have contact with a therapist or social worker that can help you get relevant equipment needed ? or apply to family fund ? they're excellent.

by the way, ds has had hydrocephalus from brain tumour when born. never needed shunt - sorry. hope this can be of some use anyway. here to listen and chat as and when you feel like it.

Merlot Mon 07-Mar-05 19:56:58

Hi Lekki
Sorry no experience of shunts, but just wanted to welcome you to Mumsnet SN board.

You may find this thread interesting here

lekki Mon 07-Mar-05 22:37:58

hi charlie, pleased to meet u . yes we do hve family fund. and o.t's and social workers u name it. they all have lack of funding though, but i found out today after hours of phone calls that by law they must assess my daughter for a major buggie, trying to get her a special walking frame aswell, she only has use of one hand the stroke left her hand very paralised, i read one of ur messages about ur son being good at the abc ect but not accually understanding what he is saying, my daughter is very much the same, she also talks in echo form like a parrot really. we are also mambers of asbah.lekki

lekki Mon 07-Mar-05 22:42:24

thanks for the thread merlot and pleased to meet u this is a brilliant site glad i found it, i dont think i'll ever feel alone again

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