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Hello, I am a mother of a 6 year old who has just been diagnosed with spina bifida. I think it is lipomeningocele due to the fact the doctor said there was a lipoma growing in the space. My daughter is 6, she had a scan 18 months ago due to the fact she had a lipoma in her buttock which has now grown back hence the MRI today. However nobody has ever mentioned spina bifida before and now I am quite worried. Shouldnt this have been picked up before, plus i have been going backwards and forwards to the doctors for 2 years say that she is incontinent of urine frequently (not all the time) but has to go to the toilet every two mins. Plus she is very clumsy. Has that got anything to do with the spina bifida. Would she have been born with this or might it not have been there and they have only just found it cos it only just started growing. Please Help me.
 
  slippers79 on 2009-09-25
This is just a forum. Assume posts are not from medical professionals.
how is her mental and physical growth.

what other physical and mental symptoms does she have.

describe her personality, her likes and dislikes, thermal preferences, response to various situations, behaviour with parents, friends, strangers, animals and insects.

how is her intellect and how is she doing in her school curriculum.
 
rishimba last decade
thankyou for getting back to me, she is really clumsy, gets tired easily. Mentally she cant really do maths but is quite good at english. She doesnt like anything red, tomato sauce, jam etc she wont eat anything that has touched it. She also wont eat Peas infact is nearly sick if we try to get her to try one even mushy peas. She can be very whingy and can whine alot but also be very friendly and affectionate. Is petrified of flies but ants dont bother her. She loves Jurrassic park and even laughs at it in places but gets scared of kids films. If we tell her off she will cry uncontrollably which is usually a total over reaction because we dont really shout at her at all. Not sure if that helps please let me know
 
slippers79 last decade
spina bifida can be easily diagnosed by its location and size.

you said that the lipoma is on her buttocks and thus, it cannot be a spina bifida manifestation.

please list down all her physical and mental symptoms.

also, give her family health history.

lipoma can be taken out with a simple operation. if she has more serious ailments, please describe with exact sensations, locations and modalities.
 
rishimba last decade
the doctors also said that the bones at the base of her spine have not fused together and that there is a lipoma growing in the space too. My mother says there is nothing on her side but do not know about my father side. her physical symptoms are: clumsy, frequent trips to the toilet (about 30 times a day on average), frequently wetting herself, she also sometimes can poo herself too. She has quite a few allergies, penicillin, dairy, hayfever, scented wipes. mentally apart from her having no idea of road saftey no matter how much we try and teach her she does not comprehend what we mean. also cannot comprehend simple maths problems but is good at english.
 
slippers79 last decade
is she shy infront of visitors?

does the shyness persist or does she mingle with the visitors once the initial shyness is gone?

whether the growing milestones have been generally delayed?

can you give examples of her being clumsy.
is she a hot or a cold person.

what are her cravings and aversions in food.

can you tell me if she discusses her fears and dreams with you.
 
rishimba last decade

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