I remember the day Alli was born...she was such a wonderful baby. She was happy to sleep, she was always smiling, she knew sign language, spoke early...she was every single thing a parent could ask for. I had just gone through what could have been cancer that ended my ability to have babies, so I was over the moon about Alli. Then one day everything about her seemed to change......
Alli had very specific eating habits. There were things she just did not eat. Sweets was a big one and so was bread. This is from the time she started eating solid foods on. This might not seem pertinent information, but hang on...I'll tie it all together.
Then around the age of 3 to 4, I began to notice almost a complete personality change in my sweet angel face Al. She would attack Kaylee for no reason and with no provocation. The longer the attacks went on, the more vicious they became. It was strange and out of character for Alli. Alli never really attacked anyone before that. Once I walked into the room just as Alli tried to stab Kaylee in the face with a pencil. Violent for certain. It got to where I simply could not turn my back on Alli.
Al also started having sleeping issues. This coming from the kid that would stand next to her crib and say "Alli sleep now". She was always a wonderful sleeper and really loved her sleep. But now I would wake up in the middle of the night to find her standing over me. She would not say anything, just stand there. I also noticed signs of her walking around the house at night.
And there were other things....Alli started eating paper. She began to only want to eat certain things, like chips. She would become very upset if she could not eat what it is that she requested. And she would cried hysterically for little to no reason at all. She seemed so different and sad.
I finally took Alli to see a psychiatrist. And little did I know, this is when things would start to go down hill fast & furious.
They started Alli on one med. It was a little dose and I honestly believe the doctor thought this would be all she needed, and she would be fine. Back to normal. I think looking back now, it only aggravated what Alli was experiencing.
More meds would come and Alli only seemed to be getting worse. She stopped sleeping all together. She would sleep for like 3 hours a night. She would ask me why she had to get into bed because she knew she could not sleep. It was maddening. So they prescribed something else. In the end, Alli was taking 4 medications that come out to about 1000 milligrams a day and she was only barely hanging on to her sanity. It was horrible to watch this little beautiful girl who was so sweet and full of life, become someone who cried all the time, who was so sad, and who I could not really let out of my sight.
School was almost unbearable. She was extremely frightened to be there and spent most of her first 3 years of school in a separate place. Alli ended up taking 1st grade twice. Nothing seemed to be helping her retain the information she was trying to learn, when she was not under the desk crying that is. School was just too overwhelming for her. We thought many times about removing her. We just did not know what to do.
Alli was also diagnosed with a seizure disorder as well. I took her to a neurologist that did about a thousand tests and not only diagnosed her with seizures but also confirmed that he thought Alli had serious emotional problems.
Side note: the people who lived with me through all this, will tell you I am skimming over the pain of the entire situation. Her pain, my pain....it was so heavy I thought it might crush us both at times. It was devastating to see your little girl crying non stop and there was nothing you could do to help her. I could not make the sadness go away. I could not see or get a grip on what would be her solution. There were times she could not leave the house. I think we all felt like a prisoner of the house and of Alli's illness at times. And I grieved Alli. I grieved the child I thought I had....I grieved the child I thought I had lost. I grieved for the future I thought she would never ever have. When Alli was one years old, she could count to 30, she was happy, and almost bouncy. Now she cried more than she smiled and I felt so lost and alone with her and for her. The feelings during this time are hard to accurately put into words. You almost have to have lived it.....
I finally decided it was the meds. They were agitating her, they were causing memory issues, possibly causing the seizures, and if not, they were not helping. So we began a two year process of getting Alli off the meds. We started with the anti-seizure med that I contributed her not being able to sleep toward. This was the one med I was never really sure of and I wanted her off of it. We only would removed meds while she was on summer break from school so that is why it took so long.
After taking Alli off two of the meds, she was a completely different person. She was happy again. She smiled and she interacted more with the world around her. I was slowly getting Alli back and I cannot describe to you in words how that felt. I cannot tell you what it meant to see the joy on her face. And it confirmed for me what I felt to now be the truth, it was the meds at least partly.
But if the worsening of her issues was the meds, what was the cause of all the issues before she began the meds? This question would linger in my mind.....
Alli was able to go to school for the entire year for the first time in her life. Everyone at school was completely amazed. They all commented that she seemed to be someone else entirely. Finally Alli was happy to go to school. She liked it....it was remarkable.
But, Alli was sick too. The first thing we noticed was that she suddenly dropped a lot of weight. We thought maybe it was due to her not being on some of the meds (one of the side effects of the main med was being stimulated to eat). But she also diarrhea every single day, along with sharp stomach pains. She began gushing blood out her nose on almost a daily basis. These nose bleeds would pour out of her nose for 10 minutes or more. It was scary. Then came the daily headaches and all the bruises. Once the bruises showed up all over her body...her hands, her legs, her torso...every single place, I realized this was more than the meds, she was sick. Very sick. But with what now?
Finally I decided Al needed to see a hematologist. And I can say, we were very worried we were dealing with the Big C. Leukemia came to mind. I knew in my mind that it was not likely, but my heart could hardly stand the mere idea. The first thing they did was an in office test for it. She did not have it. (THANK GOD!) But what was the problem? They knew something was really wrong, but they seem stumped. We had to wait for all the blood work.
In the mean time, Alli ended up in the hospital. She was very prone to Staph infections. She usually was hospitalized with it at least once a year. We thought we were dealing with yet another infection and she was admitted. Of course we had to explain to the doctor why Alli was covered in bruises. And what happened next, I can only attribute to the good Lord above....... The doctor listened to us talk about what Alli had been experiencing and then it just stared at me. He finally asked if I was Scottish. I said yes. He said Alli had Celiac Disease. And with statement, all of our lives changed but none more than Alli's.
It came to light that my father's family has a history of Celiac Disease........and now a whole lot of things make perfect sense. Now Alli hating bread and refusing to eat it from a baby on made perfect sense. Alli will even tell you that she thinks the smell of bread stinks....to this day she almost refuses to go down the bread isle in the store. I know it is her body rejecting what harms it.
Celiac Disease, for those that do not know, is basically an allergy to wheat/barley. Their bodies cannot take it and actually attack it's own digestive system. Over time, the intestines are rendered unable to recover nutrients from the eaten food because it becomes slick with no celia. This causes a shit storm of symptoms that are unique to each individual person. But some symptoms are universal, like sharp stomach pains and loose stool. Eventually, left untreated by a strict no gluten diet (gluten is what celiacs are allergic to in wheat/barely) the person will develop cancer. Either a myriad of different stomach/intestine cancers or throat cancer due to a lifetime of reflux will develop.
Slowly we worked gluten out of our house. It is not as easy as some would think but it isn't as difficult as some believe either. We started with 5 things we knew contained gluten and got them out of the house. Finding suitable replacements took some research. Lord buying any new type of food or recipe takes some research. But it becomes second nature to check the label of all foods and to watch for symptoms when introducing a new foods into their diet. We just kept working our way outward, eliminating more and more gluten filled foods, until there was no gluten left. And almost like magic, Alli and Kaylee got better...so much better...
Alli was physically better, but she was mentally much better as well. She seemed to have a clarity of thought she had not had in quite some time. At this point, she was still on 2 of the 4 medications she was prescribed. And we knew it was time to get her off completely. Her mystery had been solved as far as we were concerned. There is research that states that Celiac Disease can cause many different and at times very pronounced mental illness. Alli was sick, but not in the way we thought.
Alli finished her last medication almost a year ago now. We were easily able to take her off the rest of her meds last summer. She became more and more herself with each and every day. I cannot tell you how we would almost burst at the seams every time she would make a joke or make sense out of something the other kids did not understand. These are things she was not capable of since the age of 4. Now Alli is Alli.....she isn't a the mental disease we thought would ruin her....she isn't a mystery no one understood (even her many doctors), she is just a little girl who laughs and loves and goes to school and enjoys life...all things she could not be before.
The reality of the medications Alli took is that she basically does not remember huge chunks of the years before she got released from her medicated prison. As far as her education is concerned, that is difficult. She is behind, but last year and this year she has made what the school has remarked as remarkable strides in catching up to her classmates. She never gives up and she works very hard. It is not always easy but her easy going personality helps her to accept what is and keep moving forward.
For the moms: I cannot tell you what watching her suffer felt like.....I am sure there are mothers out there who's children have some sort of mental or physical illness that know exactly what I mean. I was scared to ever have Alli away from me, & eventually Joey, because we were her safety. She felt like her mind was not her own but I think she felt like as long as we were with her, she would be okay. (hence the reason school was so difficult). The kids rallied around Alli at all times. Her brother would come to her class when she was screaming and crying. Kaylee was summoned to do the same when she started school. Sometimes it worked and sometimes it did not. And when it didn't, the kids would feel terrible.....especially Dalton. He knew there was something so sad about Alli....and when she would cry, Dalton and Kaylee would just wrap her up in love. It was through this illness that we became a total & complete team. Everyone kept an eye on Alli (she would wonder towards streets when playing at the park & things like that while on the medication). I guess you could say we all were on high alert. But together, we got through it.
A more in depth theory of what was happening to Alli that made her start to have psychotic type episodes is two fold. I know the gluten was starting to give Al mental instability. But, I have found something I believe may have been what pushed Alli over the limit....she had Mono right before all this really started. When Alli was 3, she got Mono. I have read research that states that when small children get Mono, it can cause mental issues & psychotic episodes. So she already had the instability with the gluten issues and the Mono just pushed her over the edge. I struggle with the knowledge that if I had waited, she might have eventually been back to normal. Sometimes I think I did this to her.
But, like Alli, all I can do now is be very super careful of medications (we opt for vitamins and natural healing for almost everything now) and accept what is and move forward. Seeing her bright shining face daily makes that a little bit easier....
Side note: There is a series of events if you will that led to us finding out what was really wrong with Alli and making her better....it started with a renewal of my Faith. I finally turned to Him and said, I cannot do this alone. I am turning it over to You...and He found me Joey. Joey played a huge huge huge part in getting Alli off the meds. He gave me the strength of hope. Joey said she would be okay and if she wasn't then we would keep looking until we found a real solution. I was so afraid Alli would get worse instead of better without the meds. Joey assured me we could do this......and with that, we did...he did...He oversaw the schedule of titrating her down. Without Joey, I doubt we would be where we are today. God had a plan for us, and when I finally decided I could not do this, He did.
My sweey angel face Alli.....
Just another day in paradise......
