undiagnosed little girl - does anyone have any idea?

[helpme280]

I am mother of three children - two boys and one girl.  My daughter Alyssa is eight years old and the middle child.  When I was about 6 months pregnant with my daughter I went in for a routine sonogram where they discovered she had too much fluid in her brain, I was told at the time that she was either severly retarded or had down syndrome.  I refused amniocentesis because of the dangers from it.  Things contiuned to become was worse she began to become underweight and developed a large murmer in her bottom left heart chamber.  Two weeks before birth everything seemed to turn around she was now measuring normal fluid levels in her brain and gained weight.  When she was born she still had the heart large murmur, but her pediatric cardiologist wanted to wait until she was three years of age to see if the murmur closed up, if it did not heart surgery would of have been to performed - luckily for us it did close up when she was two.  She was also born with asthma (I have never been a smoker) where she had to have frequent breathing treatments.  My daughter was born at 36 weeks exactly at 6lbs 0oz and began to put weight on very quickly.  She had problems keeping food down, she seemed to vomit an extreme amount and we had to change formulas four different times.  When this happened she would lose her air until she was blue.  She finally did okay with lactose-free formula.  When she was about two years old she liked to watch a television show in the morning for 30 minutes and I noticed she had to sit really close; the whole 30 minutes I spent pulling her back and she spent moving up front.  When she was five an eye test revealed she had really bad vision.  When I took her to get glasses she told me "hey you have a nose".    Alyssa has always had a trouble with fatigue she would often wake up very dark cirlces under eyes to the point where she looked like she had black eyes and no energy.  She is overweight even though she does not over eat and a normal diet with no sweets except for her birthday.  I took her in for test after test, but everything was always normal.  In Novermer of 2006 Alyssa became very ill, her illness began with flu-like symptoms.  The next day she woke up screaming her back was hurting and it hurt her to urinate, I took her to her pediatrician that afternoon.  She had a 105 of fever and a quick dip stick in her urine revealed she had blood in her urine.  She also had rash around her ankles and her throat was so swollen and the doctor could see infection so it was believed Alyssa had a UTI and strep-throat.  The urine and strep cultures were sent to the lab and Alyssa was hospitalized on a friday afternoon.  The rash on her body seemed to spread very quickly and turn blue, the tylenol and motrin would not bring down her temperature, her tongue was very red which looked odd, she started having severe diarrehea, her skin began to peel around her feet and fingers, she began to become very swollen, and constantly cried from pain over the weekend.  No one really seemed to take this seriously and no test were performed.  On monday I took her a bath at the hospital and I remember her holding the warm wet rag to the back of her neck and sobbing because it hurt her so bad.  I couldn't take it no more and started causing a ruckus to get my daughter some help, I insisted they do a spinal tap because it seemed to me like she had meningitis.  The doctors finally got her urine and strep results that monday and the UTI and strep throat tests came back negative, they decided to go ahead with the spinal tap.  While doing the spinal tap they could not giver her anethesia because her blood pressure was too low.  They disovered she had over 60 white blood cells in her spinal fluid and rushed her to ICU.  We were told they did not know what she had, but they did send samples to check for everything you could think of.  Everyone treating Alyssa began to were mask and a cover over there clothes and hair before entering her room where she was put into isolation.   By monday afternoon Alyssa was suffering from septic shock.  Her brain was so swollen that it pushed against the eyeballs and her eye's looked completely red when they opened them and she was semi-delusional, she was in the dark because the light hurt her eye's, I didn't recognize her because she was so swollen, her lungs were filling up with fluid as she panted and panted for air, her heart was beating so hard it shook her entire bed with every beat, her circulation was beginning to slow down.  They began putting very strong antibiotics into Alyssa even though they didn't believe it would help because they thought she had a virus, but didn't know what virus.  Somehow with the Grace of God, doctor's, nurses, and family she pulled through it.  I never got an answer as to what was or is wrong with her.  Every test performed came back negative including the meningitis (bacterial, viral, fungul) tests.  Alyssa did suffer a tear in her heart from the illness, has a constant swollen sore throat, backaches very often, pain with urintation, fatigue, and right after the she got out of the hospital I took her in to get new glasses because her vision had become worse.  I have taken her back to the doctors office and the doctor has run test after test, the original urine test always show she has blood in her urine, but when sent to the lab always comes back negative.  One test earlier this year showed she had bilirubin in her urine, but blood work showed that the liver was normal and further urine test had no more bilirubin.  I don't know what else to do for her and all out of ideas as to how to help her.  Everyone else in the family has never suffered with anything close to what Alyssa has.  I want my daughter to live a noraml healthy life and never want her to suffer again.  I wonder if the illnesses before birth and after have any correlation? Does anyone have any idea what is wrong with my little girl?  Thank you!

[Corvin]

I should point out also that aseptic meningitis is found in Kawasaki's, so she may not of every actually had infectious meningitis.

[Corvin]

I'm sorry your daughter has gone through something like this. I can't say much about her problems before her hospital stay, but when she got sick and went to the hospital the main things that jumped out to me was her rash, peeling skin, discolored tongue, and a lot of her other symptoms seem to fit Kawasaki's. I think it could have been triggered by viral meningitis, but the immune system had already destroyed the virus, and their was only left over white cells in her CSF, by the time they did the spinal tap, and what they believed to be Septic Shock may have been the affects of Kawasaki's on the heart. You can follow this link I provided and/or hit the link for Kawasaki's on the top of this page, and see if you think it fits. I hope they can pin down a diagnosis.

                    http://en.wikipedia.org/wiki/Kawasaki%27s_disease

[Jamie126]

I have a 16 month old baby boy, who had similar results at his sonogram.  In the sonogram, my Dr. diagnosed him with Ventriculomegaly.  He also had an Echogenic Focus in the right chamber of his heart as well.  They sent me to a specialist and prepare me for the worst (Downs syndrome).  I also rejected the aminio.  

He was born a healthy baby.  He is only 16 months now and I have the same issues with him watching the TV to close.  I periodically close his eyes tight like he's trying to focus.