Keely was born on July 5th, 2006 after a pretty rough pregnancy. She was born four weeks early but appeared to be a healthy baby girl. So we brought our beautiful little girl home. We soon realized she had some digestive problems and was unable to keep any formula down. We tried numerous ones and the doctor suggested some others. No matter what we tried she seemed to spit up the entire bottle. She was very cranky and cried alot. Once she started eating cereal and other baby food she seemed to be able to keep the food down better. Once she was able to keep her food down better she was happy, tough, silly little girl.
Developmentally, Keely was doing great. At nine months she started crawling and taking her first steps. By ten months she was walking all over the house. By twelve months she had approximately ten words she was using on a regular basis.
At twelve months old, Keely was not acting like she felt well so I took her to see her pediatrician. He told us she had two really bad ear infections and gave us some antibiotics and to come back in two to three weeks. I remember taking the prescription to the pharmacy to get it filled and they told me it was too high a dose for a baby her size. They told me they would have to call the doctor to verify he did not write it down wrong before they would fill it. They called me later that day and told me that was what he wanted her to have but again said it was a high dose for a baby. Keely is my first child, not knowing any better I gave her the medicine as prescribed by the doctor. When we went back to her next doctor's visit, which was about two and a half weeks later, the doctor said she was better and needed to get her MMR vaccine. Once again, trusting the doctor (who was my doctor growing up) she got her MMR vaccine that day. I carry so much guilt, as I've heard most parents do, for giving her the high dose of antibiotics and for allowing her to get the MMR vaccine that day. People say, well you didn't know any better. I feel like I should have known better. I should have looked into it. I should have known about antibiotic use, vaccines, and Autism, but I didn't. I cannot change what happened, but I can put every last energy, effort, and breath into trying to fix what I let happen.
So, shortly after the MMR vaccine, we lost Keely. She was just gone, in her own little world somewhere. I can't tell you the exact day. I just know all of the sudden she had no words, none, not a mama or a dada, nothing. She began running in constant circles through the house screaming her little head off. She screamed in the morning. She screamed in the afternoon and evening. She screamed all night long. There was nothing I could do to make her happy. It is such a helpless feeling as a mother. All you want is to see your baby happy, and here I was I couldn't even get a smile out of her. The smiles were gone, replaced by crying and tears.
I tried to take Keely back to her pediatrician but now he was MIA. They just kept saying he was away and they didn't know if he would be back or not. I finally got her into to see another doctor in his same office. Oh, and I forgot to mention on top of this, my precious baby boy was born. They are seventeen months apart. So about the time he was born was when I really knew we had problems and was desperately seeking help. So we go see this new doctor. I cannot even explain how bad this visit went. She immediately told me I had another baby too quickly and I was just feeling guilty and there was nothing wrong with my child. And, if this was not bad enough, she sent my husband out of the room with Keely, and continued to tell me how bad of a parent I was. This doctor went on to say I should not have had my son so soon and that I needed to quit my job and stay home with my children because I was the one with the problem. I was crying so hard by the time I walked out of that room, not because I believed her, but because she would not listen to me. I knew there was something wrong with my child and I needed someone, anyone to help us. (Oh, and I wanted, and truthfully still do, to punch her right in the face for the way she treated me.) So we left and I set out to find a new doctor, again.
At about this same time Keely had started going to The Little Gym. This was a horrible experience. I loved The Little Gym and still think it is such a great place, just not for Keely. Keely would go in and run circles around everyone yelling the entire class. They would always laugh and talk about how much energy she had and how fast she could run in a circle. Keely has always been a tough little girl (I like to think she gets that from her mom ;). One day at The Little Gym she figured out how to get the heavy door leading into the lobby open. From that time on all she wanted to do was play in the lobby where there was no other kids. She would go in the lobby and want to spin the lid on the trashcan the entire hour she was there. It got to the point that I was crying all the way home every week when she had class because I knew there was something wrong. She did not act like any of the other kids in there. I eventually stopped taking her.
I heard about another pediatrician from a family member and set up an appointment for Keely to go see him. This doctor just said to give her some time she wasn't two yet and some kids just develop later. I was really feeling pretty hopeless at this point. I haven't talked much about my husband, J.T., at this point, but I think if he were to be honest he thought I was crazy at about this time. He just kept telling me that she would come around. And, at this point I didn't know what was wrong with her. I just knew there was definitely something wrong. Looking back, I think J.T. was just in denial. I don't know if he would admit that or not, but it took him quite a while to realize that there was something wrong.
In my many hours of becoming a Google expert, I read about Soonerstart, which is a program through the state that provides services to children under three. I called and set up a time for Keely to be evaluated. Basically, they come to your house and do an evaluation to see if your child qualifies for services. If they qualify, they send therapists to your home, or daycare, to work with your child. By the time they could get her in for an evaluation it was July of 2008. After they evaluated her they told us she was delayed in nine out of thirteen categories. I remember just being shocked. I knew she had some problems, but I just never thought it would be that bad. She did qualify for their services so she started getting speech therapy through them. They also wanted to get her hearing checked, since she would not respond to anyone. I knew she had no hearing problem since the only thing, at this point, that would calm her down were her two favorite tv shows. She would come running from the other end of the house as soon as she heard them. But they told us they had to do it to rule it out. We went to her first hearing screening and Keely freaked completely out. We had taken the stroller since we had to walk a long way. She loved being in the stroller as long as she was strapped in tight. When we tried to take her out of the stroller into this little room for the screening she just lost it. The lady doing the screening immediately said she has some sensory issues. We did not get a hearing screening that day. Keely made sure of that. We went home and I began looking at sensory processing disorder. It seemed alot of the symptoms Keely had. I remember calling my mom and asking her about it and she said "maybe she has Autism." I remember getting pretty defensive and ending the phone call quickly after that. No one had ever mentioned Autism. I didn't even know what it was, but for some reason I was sure that couldn't happen to us. And though, we have never talked about that phone call, I am thankful that my mom mentioned that. I can imagine how hard it was for her to bring it up. After some more crying, I looked up Autism. I could have diagnosed Keely right there.
So I took Keely back to see the last pediatrician that she had seen. I was armed with the evaluation and was ready for some help. I told him about the evaluation and showed him the results. He immediately told me he thought she fell in the Autism spectrum somewhere, but he wasn't experienced in it enough to diagnose her. This was a Thursday. He told me about the gluten free casein free diet and how many people have such good results. He said we should use the weekend to study up and start the diet on Monday. He also recommended an out of state doctor and said he felt like he was the best in the area. We did start the diet on Monday and I set up an appointment with the DAN! doctor. It took us a couple of months to get into the DAN! doctor so we concentrated on the diet. I remember the first week of the diet I had worked late and slept in. As I was coming out of my room I saw Keely down the hall. I said "Keely", she immediately got up and ran towards me and reached up for me to pick her up. It was working! She hadn't responded to her name since we lost her. That day I decided no matter how hard the diet was we were going to make it work.
We went to see the DAN! doctor towards the end of September. To keep it brief we got several tests to take home to do and a couple of supplements to start. We also started the B12 injections at this time. Keely started saying a couple of words after we started the B12 injections. From the test results we found out that Keely had really high levels of yeast. She also had extremely high levels of mercury, lead, and arsenic. He also did a test that checked her titer levels. Her rubella level came back with the highest result you can get, and her mumps and measles were high too. No wonder why my baby is always crying and cannot sleep!
In January 2009 we finally got into a local doctor that diagnoses children. Keely was diagnosed with mild to moderate pdd-nos, which is in the Autism Spectrum. She was already doing so much better from the diet and biomedical treatments, that I always wonder if the diagnoses would have been worse if we would have done it before the changes.
I am trying to keep this short, believe it or not, but I do have to add in a quick story of what happened during the week of Mother's Day. Keely was sitting on my lap and I was loving on her and tickling her and I started kissing her cheek. She looked up at me and said "I wike getting kisses." And I said Keely did you say you like getting kisses and she just smiled her biggest smile and said "yes." This was very important for two reasons. First, she is always just kind of in her own little world, isn't able to communicate with me, and doesn't show affection. I had really gotten a lesson in unconditional love because it was always so one sided. I could not help but wonder if she could feel love and know that we love her and know that she loves us. It was, by far, the best thing I have ever heard in my whole entire life. Her sweet little voice telling me that she like getting my kisses. Secondly, up to this point I had only really heard her say a word here and there, mostly repeating. I had not heard her say a complete sentence on her own. I just knew at that point she was in there and we had to keep working.
As with any parent on this journey, there is so much more to our story, but I would be typing forever. So, basically, we are now well into the biomedical treatments and the new diet. Actually we just passed our year mark for starting with the DAN! doctor. I have to admit, I thought we would be so much further by now. I guess that's why they say it's a marathon and not a sprint. Some days are very frustrating. It's hard to think that if my daughter had cancer, or some other serious disease, they would know exactly what they would need to do to treat her. But with Autism, it's totally different. Some doctors will tell you nothing can be done to help your child, and others tell you that it is curable but basically you, as the parent, have to find out which treatments work for your child. Oh, and insurance doesn't pay for hardly anything that we do with Keely. So it's like playing the slot machines, you just keep putting all this money into treatments, hoping that one might be the winner for your child.
I know we have a long ways to go, but we have come so far this past year. Keely now has many words that she uses in the right context. We are now working on stringing words together and using them on a more regular basis. More importantly than that, she is not as sick as she once was. We still have a whole lot of work on her body, but when her yeast levels are down she feels so much better. She is now sleeping through the night most every night. Her belly that was so bloated for so long is back to normal most of the time. She's happy now. I think it's now safe to say the good days are once again outnumbering the bad. Her smile is back, her eyes are not dark like they used to be, and she doesn't stim near as much as she used to. We recently started IV chelation in hopes of getting some of the heavy metals out. We also started secretin infusions a couple of months ago. It seems her language is really starting to come along. She goes to a special needs program at the public school Monday thru Friday for half a day and absolutely loves it. She is quite the little student.
Autism has definitely changed our lives. I believe that Keely had a weakened immune system and the antibiotics along with the vaccines were too much for her little body to handle. I do know that the more we clean up her body, the better she gets. So we will continue on our journey, full of hope that one day we can say we fought a good fight and we won!
