Joe Barnes Blog

This is the story of a strong and beautiful little girl who has overcome so much in her short life, seen the light at the end of the tunnel, and is walking through it. Britney was born in 2000, a very sweet, happy and laid back child. Aside from a little colic in the first few months she was what I considered at that time normal….This started changing about the time she hit two. I can’t think of any one incident that triggered it, but the happy laid back child I was used to started to disappear. Of course at the time I just thought that it was the terrible twos. She is my oldest so there was no one to compare her to (not that children can be compared I’ve since learned.) She started throwing fits and being very angry and aggressive. She would not just get mad; there was pure hate in her eyes. She was in a constant state of frustration and irritability. I had my second child by then and so I’m sure I was so busy with him that I played down these behaviors when I should have paid more attention to the growing problems. She started being obsessive about certain things like shapes and numbers and lining things up. I just assumed this was because she was really smart. Of course every parent is proud to have a “brilliant” child to brag about. Things pretty much stayed the same until she was three and a half. One morning I accidentally set off the alarm system and couldn’t get it off for several minutes and when I finally did that look of pure hate was now pure terror. She wouldn’t go under our smoke detectors unless someone was holding her hand.

We moved a couple months later and during the move while staying in a hotel, some idiot jerk decided it would be fun to set off the alarm at 2:00 am. So here my husband and I are lugging two children down five flights of stairs with alarms blaring and lights flashing and all I could think was here we go again. It was at least two years before she could go into any room without locating every smoke detector and pointing it out to whoever would listen. When she went to a restaurant or someone’s house the first thing she asked (no kidding) was do you have a smoke alarm and how many do you have? She was completely obsessed and not in a good way. Meanwhile in the two years, we moved into a new house and her problems started increasing. She became really hyper. Not jut running and jumping but she would climb on something like the top of the refrigerator or a counter or buffet table at a store or restaurant and when you would tell her to get down you could see in her expression that she didn’t realize that she had even climbed up. By the time she was four, she had busted her head open twice requiring stitches and staples and had broken her collar bone. All because she did things without thinking it through first. She would cry for one or two minutes and then she was fine. She had the highest pain tolerance of anyone I know. I found out later that the pain tolerance is another symptom. When she was about four she started sniffing. I thought she just had allergies or a dry nose. Yes I know I was always downplaying everything. She had this very annoying “habit” for a few months and then she just stopped. Only to pick up new habits like smelling and blowing on her hands and hiking her leg every few steps and of course I played it off as maybe she had a yeast infection. The hand sniffing and blowing I had no clue about but in the back of my head I started thinking Tourettes.

About this time she went and stayed for three weeks with my in laws. This was the longest she had ever been away. When I would talk to my Mother I law she told me that Britney was just being so mean and they had to get onto her for some of the strange noises and movements she was doing. I asked them to be patient and that I was starting to think that it couldn’t be helped. That’s when I started remembering back to my childhood and how I would do little vocal things and I was always told that I could stop if I really wanted to. As an adult I learned to control it so I had never made the connection between us. When I went to get my daughter after the three weeks she ran out of the house and hugged me. Within five minutes she had at least nine ticks going. I was floored. My mother in law told me that she hadn’t been doing them all till she saw me. (I later learned that they will tick more when they are comfortable and I was comfort for her so she unleashed them. When I got her home I found a neurologist and took her to see him. He diagnosed her with mild Tourettes and said that they didn’t treat cases as mild as hers. I was very upset because I didn’t want her to start school with seven or eight ticks and be made fun of. At this same time she started school, she started complaining of noises bothering her and certain fabrics would send her into a rage along with other strange things. There are too many to list here but I can send you a list of them if you are interested. She almost got kicked off her bus because she couldn’t sit still or be quiet. And she would come in from school so mad and all I could think of was that it was from all the noise on the bus ride home. I had been researching all of her symptoms on the internet and had come up with ADHD, Tourettes, OCD, and sensory integration disorder. I tried to test some of her sensory symptoms by picking her up after school and only dressed her in knit. We cut off her waist long hair because she couldn’t stand to have it brushed and I noticed her rage calming down a bit. She still had her tics and was WAY to hyper but at least one little thing wasn’t ruining hers and our whole day. I took her for a second opinion and found a great neurologist just for children who put her on Tenex for her tics and it slowed them down as well as her. At least she wasn’t driving herself crazy by moving so fast. She had been moving much faster than her brain could react. The only drawbacks were that she was falling asleep in school and also her symptoms were being covered but she still had Tourettes, ADHD, OCD, and SID. I couldn’t imagine my poor baby living her life like this. There had to be something more.

Then in August of 2006, we found our best hope yet. Dr. Kendall Stewart. I had heard that this Dr. had a different approach to treat the causes not just cover the symptoms. I made an appt and got her in 3 months later. They performed hearing and balance tests on her and told us that yes she did have sensory integration disorder and that they could treat it and she would be off all medications within a year. I can’t explain all of the terminology that’s where the Dr., his website, and his literature come in. I decided to go for it. I knew that the mostly natural treatments wouldn’t hurt her even if they didn’t cure her. He thinks that all of these diagnosis’ are symptoms of a virus in the brain and that you have to draw out the virus and kill it to get rid of the symptoms. We went through some really strange things like metal testing and at one time I remember thinking this crazy Dr. just wants my money but I kept telling myself that I owed it to my daughter to see it through to the year mark. She started out taking two medications. One to draw out the virus and another to kill the virus after it was drawn out. After testing her for metals it showed that she had an abnormally high level of tin in her system. this could either be caused from being exposed to a high amount of it which i doubt, or it could be that her system doesn’t get rid of it like normal bodies do. She was put on two medications to cleanse her system and another to keep her from having yeast infections because the other two could cause them. After about 5 months the ticks pretty much stopped and we noticed her night terrors and sleeplessness were reduced along with a lot of her sensory problems. She was able to ride the bus home after school without raging. She did start this annoying habit that the Dr. called stemming. which is like a tic but different because she can stop when you tell her to. It is a comfort thing because she had ticked for so long. It was hard to start telling her not to make a noise when for so long we were told to ignore the ticks. But we bribed her with a hamster and after a couple of months she just stopped one day.

Now she is completely off her meds including the one for tics which also helped with the ADHD and although she is a naturally hyper child it is not the same as not being able to control your speed and your actions. You would honestly never know that she ever had any of her problems. Dr. Stewart was really a Godsend. She has been tested three times (hearing and balance tests) and every time you can see on the graphs that the different areas of her brain are starting to work together. It’s like before she was floating in space and now it has all come together. I just remember crying and anguishing and praying to god for an answer and he sent us Dr. Stewart. Now this may not be the answer for everyone but I think you owe it to your self or your child to at least go onto his website and if you want more info I can send it to you through the mail. He now has centers in five states and recently got funding which means people are starting to take notice of what this amazing Dr. is doing.
The website is www.neurosensorycenters.com

Please feel free to email me at Melanie@stitchin4kids.com if you have any questions or if you just want to share your story.

UPDATE:

After much research and talking to other parents, I have come to believe that immunizations and some of the preservatives in them are what caused Britney’s problems. I have also found out that even though she is well, there is a chance that she could regress if she gets any kind of infection. Because of this, we have to put her back on her medications for a couple of weeks if she starts to get sick.

Also she takes a micronutrient along with MB12 nasal spray just to keep things going smoothly. The MB12 nasal spray has really helped calm her down and has basically balanced her system out.

Anyone who has been diagnosed with ADHD should really look into this spray. It is wonderful!!

We go back to the DR. in June and I will continue to update periodically when I get the chance. Thank you to everyone who has read this and has passed it on.