Children - Special Needs Community
my 4 yr old little girl who has ....
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my 4 yr old little girl who has ....

i have a 4 yr old little girl who has been sick from age 2 weeks old with turning blue around lips and nose and had frot coming from her nose at one point and then when she was 3 mths old couldnt keep anything done and when in hosiptal for weeks the Dr's couldnt find anything when she was 5 mths old they found RSV and again was in hosiptal for 2 weeks and send to a children hosiptal 8 hrs away and they found RSV and The amionia she was there for 14 weeks cuz they seen blue spills found a hole in her heart and they thought she was having some sort of sezuires they ran so many tests on her i couldnt put her thru it no longer now cuz of her breathing she is on a asthma mask at home instead of puffers and is always on pedizone for her wheeze on her chest and coughing all the time i am scared that the meds dont work no more and i can not get no where wit the drs here so i cam here but then in Aug we found out that her left ear drum dont have any wave vibe to it and she lost slight of her hearing in her left ear they tell me no to worry about it but i worry thou and they told me that is why she has been goin limp and fallin down and that they should have found this sooner but they didnt think it was her ears i just wish there was one good dr some one in this world that could help do any one know of anything that could be making my daughter as sick as she is please help cuz she is always finding it so hard to breath we took all carpet and teddy bears out of the house we dont smoke in the house or no where near her no pets and always dustin
please a very worried mom
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Avatar_n_tn
I'm so sorry that this is happening to you .  I have similar situations with Dr's not being able to figure out what's wrong with my son.  We finally were diagnosed about a year ago with chromosome 1 deletion, which apparently is rare cause the Dr.'s don't have a clue.  My son turns blue around lips when he has seizure sometimes and it's very scary...I feel for you.  I would suggest doing some research online if you haven't already,  I usually put in special needs child and list his symptoms.  We are currently in the hospital and having a hard time getting answers so I make suggestions based on my research and family heath issues...sometimes it help...now we know he does have something wrong with his pancreas.  And if your wrong...who cares, atleast your doing the best you can for your child, and they can rule something out.  I can tell from your post your desperate to help her and I wish you guys the best. Don't give up!!  Keep being an advocate for that baby girl!!  I promise your the glue thats holding that baby's world together, take comfort in knowing that your super loved!
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373137_tn?1208100283
My dear!  Get the phone book and find a doctor whom you like and who listens.  Don't badmouth other doctors (they tend to dislike this very much!) and be firm but not rude.  you r daughter urgently needs help.  Yes, sometimes they can't figure out what the problem is but don't stop asking questions.  Insist on a treatment plan and explain your concerns.  You are your daughters only chance hey!  We have been through SEVEN PAEDIATRIC NEUROLOGISTS (These are hard to find and a rare species) until I found one I liked, who listened to me, who helped me and who always always answers my questions even if she says she has no clue.  When that happens, she makes the effort to phone around and see people and find out for me.  They are around, just start looking.  Good luck  
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Avatar_f_tn
ty for all ur help i been doin lots of internet searching from day to day and now i am contacting the states to see if there is some one there can see her and try to help
take care and i feel for each and every one of u may god bless us all
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