Wednesday, December 10, 2008

Aiden's Story

Aiden's Story
Our son has done a complete "180"
since beginning the Feingold Program!

He was 2 ½ years old and a complete hellion. He had NEVER slept through the night and was an extremely light sleeper, waking up 3-4 times each night. Aiden suffered from night terrors (nightmares) and myoclonic jerks (twitching) in his sleep. He would wake up crying, and when we tried letting him cry it out he would bang his head against the wall, kick the bed, scream, and become downright hysterical. After he had physically hurt himself several times we gave up on that method and took turns comforting him at night, through the night terrors, twitching, and frequent awakenings.
By day he had a horrible temper, threw major tantrums (sometimes lasting an hour), was destructive, and was completely unresponsive to any form of discipline. Aiden showed remarkable perseveration in his mischief - he would set out on a destructive course of action and could not be distracted from it. Our son basically seemed very uncomfortable.
Aiden was highly anxious and became very upset by any new situation, and by the sight of anyone he did not see almost daily. We could not take him anywhere in public without a complete meltdown. He became very upset over trivial things. For example, our neighbor Ralph would mow the grass and Aiden loved to watch. However, if Ralph waved or said "Hello," Aiden would start shrieking and crying, repeatedly saying "Bye-bye Raff, bye-bye Raff." My husband and I were absolutely at our wits' end and had been told by many "He must be ADHD," and "you'll probably need to medicate him."
What went wrong?
We read books, talked to other parents, asked doctors, did Internet research - everything we could think of to try to figure out "what went wrong" with raising Aiden. Our 5-year-old, Jared, was an extremely sensitive, well-behaved, caring, intelligent, well-spoken, GOOD little boy, and we had been raising them exactly the same way.
The pediatrician
At his 18-month check-up our pediatrician told us Aiden would "grow out of it" by the time he was two. Well, it was time for the two-year check-up and things were still awful. Our pediatrician was a wonderful, soft-spoken, gentle woman whom we absolutely loved. You'd never know it the way Aiden cried, kicked, pushed and frantically pulled on the exam room door to get out. She watched in disbelief and asked, "Is he always like this?" I replied that he was. As she watched me calmly tell Aiden it was o.k, and we were almost done, she asked, "Do you always handle him like this? Because I don't see where you're doing anything to make things worse. I'm actually amazed you are being so calm - most mothers would be pulling their hair out by now." I told her I try to stay calm (it doesn't always work!) because getting angry and yelling does nothing but make him more upset. She shook her head in confusion and said she had no idea what to suggest. She referred us to a renowned pediatric neurologist in our area for further examination.
Testing and treatments
Aiden's speech was significantly delayed, which we later discovered can be related to a child's sensitivity to additives and salicylates. However, at the time, the speech delay combined with the twitching indicated potential seizure activity. He was given an EEG to look for seizures, along with a hearing test, speech evaluation, and developmental assessment. The tests/evaluations showed nothing was physiologically wrong with Aiden - nothing explaining the obvious delays in his speech and development, or his behavioral issues. We were relieved, but even more confused…so what was the problem? The neurologist prescribed Clonidine, a blood pressure reducing medication, to "take down his anxiety level" and help him sleep. He described Aiden's general well-being perfectly, noting, "He just seems uncomfortable in his own skin." We had said the same thing so many times. He would walk around wringing his hands, pulling at his shirt, pulling at his hair, and was always fussy and unhappy - even as an infant. Actually, that isn't exactly accurate…Aiden showed these behaviors about 75% of the time, except for the sleeping problems - which were nearly all the time. However, the other 25% of the time he was the absolute sweetest, most lovable, adorable little boy in the world. He was very affectionate and interactive, and seemed truly "himself" during these rare but promising moments.
People often told us what awesome parents we were and how wonderful our first son, Jared, was. We were certainly at a loss with Aiden! We felt like failures as parents. No one was capable of watching him for us except my husband's brave and loving Aunt Betty; he was just too difficult to handle. I am a stay-at-home mom…imagine not sleeping through the night for two years, dealing with an incredibly difficult child all day (while trying not to ignore your well-behaved child) with no relief but your husband - who needed a break sometimes too! No one believed me when I said, "When he gets in trouble he seems totally shocked, and then totally ashamed and devastated…it's almost like he can't help himself." People said he had me "snowed" and he was just a "good actor." This, about a two year- old who could barely communicate with us due to his speech delay!
Clonidine and the Feingold Program
My mom had been suggesting for several months we try a change in diet. As a teacher back in the 1970s, she saw many children who benefited from Dr. Feingold's work. She also had a friend whose grandchild is on the diet; he is severely autistic and the diet prevents behavioral problems and tantrums. It wasn't until we had the Clonidine experience that we were ready to look elsewhere for answers. One Sunday we realized we had run out of his Clonidine and didn't give it to him before bed that night. When we called the neurologist's office Monday to get the prescription refilled, he was rather horrified we had let it run out and Aiden had gone a night without it. He said we couldn't let this happen - missing ONE dose of Clonidine would cause him to feel like "his skin was crawling" (a direct quote). At this point we thought, "If it affects him so strongly, we don't want him on it!" We did some better-late-than-never Internet research and discovered that prescribing the medication to children under the age of 6 is considered "off-label," meaning studies have NOT been done as to how it affects the developing brain. Needless to say, the day we read this was the day we decided we had to try something else. After doing our Clonidine research, we bought Ben Feingold's book "Why Your Child Is Hyperactive" and its companion book, Jane Hersey's "Why Can't My Child Behave?" (or as we like to call it: our Bible), ordered the Feingold member package, and began the diet. This decision gave us back our little boy, and saved our sanity as well. Thus began a lifelong family commitment to eating a more wholesome, natural diet. Aiden has been on the Feingold Program for about six weeks now, but we saw results in 3 days (no joke). I will never forget this: on the 6th day of the diet, I stopped by a convenience store to grab milk on the way home. This usually caused severe anxiety for Aiden (due to all the strangers in close proximity) and he would cry if anyone looked at him. A man in sunglasses and a hat got in line behind us; such "disguises" always caused a complete meltdown for Aiden. I was holding him, so I turned him away from the man so he couldn't see him - a habit I had adopted to get through these necessary quick stops. Aiden craned his neck to see around me, waved to the man and said "Hi!" I was so completely shocked, I almost cried. I called my husband on the way home to tell him about it, as it was SO uncharacteristic of him and I was so excited!
After about a week on the diet we decided to try letting Aiden cry for a while at night, as he was still having trouble sleeping. He did cry, but it was a totally different cry than it had been before. He sounded sad, but not hysterical like he used to…it was mellow enough that we didn't feel cruel leaving him up there, or worry about his safety. Within 4 days we were able to lay him down, spend a few minutes with him, then walk out while he was still awake and let him fall asleep on his own. This, in and of itself, was an absolute miracle. Aiden is completely off the Clonidine and sleeping better than EVER. He had been taking almost two pills a night. The neurologist had even prescribed 1 - 2 mg of liquid Valium for the nights when he twitched so badly it woke him up every 12 seconds or so. Yes, we timed it because we would be up with him ALL night long for several nights in a row. The Valium worked once; the other times we tried it, not even liquid Valium would allow him a full night's sleep. Now, he sleeps ALL the way through the night. We were shocked the effects of the additives and salicylates were so strong they could override Clonidine and liquid Valium - it certainly showed us how severely they can affect a child. The night terrors and twitching have returned only once: we hadn't finished reading Jane Hersey's book yet, which recommends not reintroducing the salicylates right away. We decided Aiden was doing SO well it might be fine to reintroduce a salicylate food, so we tried giving him ketchup on a Friday night. He was a bit more anxious Saturday, but nothing awful. We gave him ketchup again on Sunday…Sunday night he had a night terror (his first in weeks)! He took a terrible nap on Monday, and usually when Aiden's sleep patterns were interrupted more than once it triggered a twitching episode. Sure enough, we were up with him all night Monday because he kept jerking himself awake. Normally, at this point we would try the liquid Valium to calm down his body and try to allow him a full night's sleep and end the twitching episodes. However, we were reluctant to use the Valium because it was obviously artificially colored and flavored. We figured we were in for 3-4 nights of not sleeping (his usual pattern) and we would just have to suffer through it. Lo and behold, he slept like a log Tuesday night and the twitching was gone. Consequently, we decided to follow Jane's advice and wait much longer before reintroducing the salicylate foods.
It keeps getting better!
Aiden We are absolutely, 100%, total advocates of this diet and have talked about it to virtually anyone who will listen. Those who knew Aiden "pre-Feingold," or as we like to call it "the old Aiden," are absolutely astounded at the difference in him. My brother was over this Thanksgiving (before the diet) and jokingly said he was never having kids after watching Aiden in the throes of one of his tantrums. He came to our house Christmas Day and Aiden ran to greet him, something he had NEVER done before. My brother was even wearing sunglasses! He had not seen Aiden since Thanksgiving and was absolutely amazed at the change in him. He said during dinner he could not believe how happy and well behaved he was, and he seemed like a totally different kid. He was impressed with Aiden's excellent behavior, especially on an exhausting, overly exciting day like Christmas. Aiden spent the entire afternoon hugging my 81 year-old grandma, who he only sees 2 -3 times a year, saying "I nuh noo (I love you). I nuh noo, Gee-ma."
Our typical two year-old
It is rather funny when Aiden behaves like a typical two year-old and gets a little crabby, because we have to remind ourselves he IS only two! What used to be his best behavior has now become ordinary, and his previously acceptable behavior is now his worst behavior. All the successful parenting tactics we employed when Jared was younger, such as time-outs, redirection/distraction, a stern tone or removal of the offending item, now work well on Aiden too. Before the diet, he would ignore these methods, retaliate against them, or (most commonly) become very upset and confused when he was disciplined. The Feingold Program has been surprisingly easy to follow…besides a few specialty favorites of Aiden's we have found everything we need at the regular grocery store. We figure we have to go to the grocery store anyway; we are just buying specific brands. Any extra effort is WELL worth it for the wonderful results we have experienced. This diet has been a lifesaver and we are SO grateful for its existence. We only wish we had learned of it sooner. Because of this diet Aiden is a wonderful, adorable, COMFORTABLE, loving, happy two year-old. We cannot thank you enough.


Karies place said...

WOW wat a journey you took and now you have such great results. So glad to hear that he's doing much better.

Laura said...

I'm raising my 5 year old grandson. He is so intelligent but is struggling in kindergarten. He was just diagnosed with ADHD combined type and childhood antisocial behavior. I ordered the Feingold program to try to help him. I spent 3 hours shopping the other night to purchase foods he could have.

What do you find the most challenging about the program?

Do you share recipes?

I appreciate your blog as it certainly gives me encouragement and hope.