FoggyRock General Forum

My name is Stacy I am 32 and have a beautiful 7 year old little girl named Ansley who will be 8 in July. Ansley was born with a rare brain and eye disorder and I just knew the first week of her life something was not quite right. It took me 6 months to convince the Dr's to refer me to Emory. I was right there was a problem I just never expected it to be what I heard. They diagnosed her with a rare eye disorder Coloboma's and then told me in cases like this we need to look at the brain, so months later I go into a neurological Dr. at Emory and they were right a neuronal migration disorder. They immediately referred me to baby's can't wait etc. I was on top of it. I thought I was doing everything my child needed. I look back on that day and I remember pulling over on I285 here in Atlanta and just crying, sobbing and it was just me and my six month old baby. I was married but he was always at work so I was alone.

When I got home of course I got on the darn computer and just started looking all of this stuff up to see what in heck it was...We have never had anybody in either side of the family with anything like this were my thoughts... Well I dealt with the stress pretty well and my marriage did not her dad was in denial from day one and after 8 years of marriage he walked...Yes it hurt but I got over it I had a little girl to take care of..

Before Ansley's 3rd Birthday the seizures started and yes they were bad some lasted over an hour and they would give her a large dose of medicines to stop them and then a year later the small ones started...I just thought all of this was because of her original diagnosis... I mean I had taken her to all types of specialist... including Dr. Blackston at Emory who is a genetic Dr.....Here is when I took another blow....Ansley was being signed up for Pre-k and the lady who did our application said to me has anyone told you your kid has Autism? I said NO! I do not even know much about that except in my mind at the time I though they did not speak because Ansley spoke.... I cried all the way home and it brought up a lot of pain from her original diagnosis, my divorce etc....although no matter what I was going to get through this....So when I got home I called her Neurological Dr. made an appt. and they referred us to another Dr. and we went to a Pediatric Neurological Psychologist, He did his all day evaluation and she did come back on the Spectrum....I did not know what to say....here is the problem although. Even though that resulted in all of this nobody told me about anything and then is when I believed everything they said because they are Dr's right?

All of this was going on and my work schedule was crazy because I am a police officer I work shift work...I am starting to realize that care is getting outrageous she cannot stay in a day care or the after school program it has to be someones home...So all of my child support was gone and I had to work another job to just pay for everything...

Then all of a sudden things got calm she was doing absolutely wonderful at school and at home...the only issue we were having was potty issues and of course not sleeping but lets go back on this one that was one of my original complaints when she was little to the Dr... she was always constipated and never slept up all night...they told me to get over it it was just colic...like the 10 times she got thrush in her mouth before she was one they told me it was just germs...I believed them....now 8 years later I know that this was all garbage and it was the onset of Autism I can date back to her medical records and notes and the thrush...The arm flapping started about two years ago...Obsessed with objects including balls, suitcases with wheels...Ansley is my energy saver she always wants to turn off all lights and shut doors including the dryer door and microwave....

Here is when a huge turning point came last year her school kept calling me because she was holding herself, so like any good mom I took her to their request to make sure she did not have a UTI and she did not...So I made an appointment to the Gastro- Specialist and here is what he he did...I told him that over the almost 7 years what had been going on and I hoped that he could see there was a huge issue here...This is what he told me Ms. Bailey stop feeding her McDonald's and tell her to stop holding it because that is the problem and we can just give her laxatives for the next 10 years...I was @#$$@ off....I knew this was not the case because she has always been the kid to take the spinach over the ice cream or the salad over the French fries. Ansley will not touch McDonald's.... So I went home and looked of Thoughtful House and guess what when they sent me the forms to fill out low and behold all the stuff you have to fill out happen to be all the complaints that I told the Dr's around here for all these years were Ansley's issues...That was part one of validation for a mom who has beat down doors for so long to get answers and took a lot of ridicule even from her dad who happen to call me a Munchausen Syndrome by Proxy . I honestly wish that were the case is what I told him when I had heard what he had said....

Here is another key to the puzzle back in 2005 Ansley woke up one Sunday morning in August and I will never forget it, she could not walk and she was crawling and she had dark circles under eyes and she was throwing up and her diaper was full of brown urine....I freaked out and immediately put my baby in the car and drove her to the ER. It was her liver it was shutting down....I was like what in the world... They told me it was from her Seizure medication that her body just could not filter anymore and it was backing up....

Here is what I know now....DIET DIET DIET....Ansley loved whole grains, Corn, Yogurt (store brand) etc in our world that was awesome for her it was not....She was born with the eye and brain issue and after the serious of shots is when the thrush started, I know all of this now because I put every medical record and note in a binder and highlighted big events or small ones at the time that had no significance like they do today looking back on 8 years... The seizures started the constipation only got worse, her telling me every single day that she did not feel good, the repeating of words, not writing can't read but you know she is so smart, the obsessions with objects, the wandering and getting out of her bed at night trying to go outside...The liver shutting down and cannot act like a sponge in 2005, the arm flapping and everything in between. For so long nobody ever peeped a word about Autism but we are lucky that we started the OT, PT, Speech etc when she was 6 months old and that teacher mentioned to me that she saw Autism and they immediately put her into a top notch autism program at a School here where I live in Cherokee County.... There were still doctors around here who think that Autism is not real and we are crazy parents that is basically what I got so they made me think I was crazy but deep down I knew. I am lucky that now I interviewed a pediatrician for Ansley and told her what I wanted and needed in a Dr and it has been great.

The best thing that ever happened was going to Chicago this year to the Autism one conference and that is where I learned about FoggyRock by your wonderful mother in law who lives here in Georgia awesome lady I sat and talked to her for hours at the TACA parent mentors.... I now have an appt with a Dan Dr. July 03rd 2008 after 8 years of struggle with this...I came home immediatley and stripped Ansleys diet to a Specific Carb Diet and I have seen a huge improvement ref stemming, sleep and bathroom issues. I added probiotics and enzymes....I have tried to go to 100% organic in her diet and add a good vitamin....She hated me at first for taking away her precious corn that she was consuming on a daily basis because she was addicted to it.... Everything else I will leave up to the DAN Dr. I just wanted to get a running start to do my part...I will see where we end up....I was at my wits end and before never believed any of this stuff because the Dr's I have dealt with told me it wasn't true and I just wanted to believe them but my daughter comes first and here we are...

I am very hopeful and Optimistic again because I am 8 years into it looking back and it all makes sense to me now....She was getting sicker and sicker while they were telling me it was OK. Not anymore I know that I cannot cure her but I do now believe in recovery from the symptoms...and that is what I am going to do and just keep on loving Ansley Bailey...

The most important thing I have learned when I am sad about the fact that Ansley will never move out get married etc...That is my problem not hers because she is Happy and has always been and knows no sadness and that is all that matters. She is vibrant, outgoing and loves everybody and her photo is her personality...I am lucky to be her mom...

I go this week to have my blood tested for Lyme Disease if I come back positive it will make sense to why Ansley might have the crazy eye and brain disorder they can not figure out...I would have never known about this until I spoke to Shannon's mom (Nancale) at the Autism One conference 2008 and then went to a class on it and I was shocked to hear about it and I have a lot of those symptoms..I would have never thought much more about it but they said sometimes the kids manifest eye and brain abnormalities. Ansley does and my baby sister has it already.. This will answer a lot of questions I have had for a long time...

Please do not think the above is bashing all Doctors because I am not, I am just very aggravated that I have been to so many to be treated like I am ignorant and uneducated. The problem is they are not trained in this I now realize and most do not believe in it and they think the Doctors that are trained in it are quacks. The truth will prevail in the end.