The Second Medication Prescribed for Tourette

 

When we were finally able to meet with our Neurologist ( we had to wait three weeks between the time we made a call to request an appointment and the time that we were able to see the doctor) he took Kendrick off the Clonidine and put him on Risperidone. This is an antipsychotic medication. It worked so much better than the Clonidine (I was pretty upset with our first doctor who prescribed the Clonidine but our Neurologist told us that was industry practice to use Clonidine first). It was a tough decision to accept and put our son on this medication as well. Risperidone is mainly used to treat the symptoms of schizophrenia in adults and teenagers 13 or older.  Scary, isn’t it?  It is impossible to weigh the benefit of tics versus side effects of medication, at least for me. I have no clue what will be Kendrick’s side effects to this medication, and how do you weigh that against a hundred tics a minute and shouts and tears.

We spent many weeks increasing the dose and after a year we have not been able to reduce it. We tried but every time the tics came back. We have found that giving 7/8^th of the dose at night and 1/8th in the morning helped more than giving the whole dose at night. So, with this medication I think we got rid of 75% of the tics. For us it is an acceptable level. Diet has helped another 10 to 15%.

The only side effect we have seen is tiredness.

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Medicine

Clearly, if disease is manmade, it can also be man-prevented. It should be the function of medicine to help people die young as late in life as possible.
Dr. Ernst Wunder, President, American Health Foundation (1975)

First signs of Tourette in our son

Thinking back to the first signs, these are easy to identify, but as you are living it, these seem inoffensive and probably normal. Three different things happened the first couple of months. I’d say around November of 2009 Kendrick started asking questions before falling asleep, like “Will I be in my bed when I wake up?” or “Will I be safe?” Now these are kind of normal for any kid, but with hindsight these were the first signs of anxiety. Also, during the day he would use the word “maybe” a lot.  When it became a little more frequent then two to four times a day I asked him why he was saying that and he said he was afraid of lying so he preferred to use the word maybe so as to not misstate something. Now I thought that was real cute and so good of him of not wanting to lie. And you must agree these are normal for 7 year olds, no?

He also started squinting/twitching his eyes. Now that was not normal. He said he did it when he had a “bother” in his lower tummy.  After 10 days or so I made an appointment with our pediatrician. She was thinking bladder infection so we tested for that but  it came back negative.  She gave us a couple of suggestions but when he continued we went back in January. At that time we saw the nurse and she sent us home saying there was nothing wrong. Ten days later I made an appointment with an Urologist. Not much there either. One month later we went to the eye doctor, because Kendrick started rolling his eyes back. But there was no allergy or vision problem. Then Kendrick started having twitches in his shoulders. All the twitches were due to this “bother” he had. Nothing hurt; it just bothered him in the lower abdomen. Then we went back to the Urologist in May and he told us that there was nothing wrong again, but that he believed there was another problem (FINALLY!!!!). We were at Children’s Hospital, so he sent us upstairs to the lab for a Strep test. He gave me a list of three possibilities for Kendrick’s twitching and one he thought could be PANDAS. He instructed us to go back to our pediatrician with his list. Lab results came back positive for Strep.

So from November to May we knew something was wrong but could not figure it out. None of the Doctors had any clue, and finally one thought out of the box and pointed us in the right direction. But by then he visibly had something wrong. He was not just twitching his nose and closing his eyes, his shoulders and neck also had twitches.

Electrodermal Screening (EDS)

My amazing sister in law recommended we talk to Martha. Martha was a friend of the family and a specialist in using natural therapies. She also uses a machine that can see what the body’s problems are. Electrodermal screening is used to find issues by measuring the electrical resistance on the skin’s surface. The purpose is to detect energy imbalances along invisible lines of the body described by acupuncturists as meridians. The FDA does not believe that this instrument can detect disease, but many of Kendrick’s problems were found through this screening. Electrodermal screening, or EDS, unites 20th century technology with the ancient healing arts of acupuncture. It was first developed around 50 years ago in Germany by a doctor named Voll. In the late 1940s he was studying the Chinese acupuncture meridian system when he had an interesting idea. He reasoned that if acupuncture theory was correct and channels of energy did run throughout the body there should be a way to measure this energy. So he constructed a device to measure the electrical conductivity of acupuncture points on the skin using electrodes.

This is an amazing machine, but from what I understand, you need to find a good interpretor, and Martha is the best. We went to see her in Alabama and with this machine she found that Kendrick had a Candida infection, metal toxicity, a problem with his atlas bone, a very weak immune system, lymes disease, and a problem with his dopamine level!!

She prescribed homeopathic medications for the lymes, herbes for the detox and cleansing, vita food to boost the immune system, and no more toxic cavity filings or tunafish for the toxins. We also immediately went to fix his Atlas bone with a specialist. Ten days later, after implementing all of these, we saw an amazing improvement.

Malt and Tourette

Many chemicals in malt are toxic, and affect the nervous system. Because of this,  many foods that contain malt are bad for children with neurological problems.

Malt is germinated cereal grains. Sounds pretty inoffesive to me, but these grains develop enzymes that modify the grain’s starches into sugars, such as fructose. It is the sugar part that we found was bad for my son.

When we eliminated malt from my son’s diet we saw immediate improvements. His tics would be less frequent and less harsh.

So how did we discover this? We had noticed that Kendrick would have bad days and good days, and that often the bad days would last three days. A doctor suggested that this was the length of the digestive cycle and Kendrick might have a food sensitivity.

I read somewhere that to find food sensitivities one could, for example, eat only rice for a week and add back one food at a time and see the reaction. Of course, if his tics got worse that meant the food was bad. But there was no way I could do that. Imagine how long that would take, and it would require constant attention, and remember, I work full time.

Thank God at about that time we called Martha (see Electrodermal Screening post) for the first time and she suggested that Kendrick might have a Candida infection and we should eliminate malt, vinager, and peanuts (fermented foods). Now that I could do. And three days later kendrick was way better!!!!

From what I understand there are “triggers” out there that can make the tics worse and it is for us to find them. The problem is that every child is different so the triggers are different for each. Anything can be a trigger, like chlorine, scents (candles), new carpeting, etc… And finding them is hard. But by observing our child closely, we found some.

Malt is also malted barley and maltodextrin. We now, of course, check all ingredients and we do not buy anything with malt. Kendrick is on a Yeast free diet to kill the Candida.

Sleep on your back

I just found out from our Chiropractor that when you sleep on your stomach, it can cause stress to your neck muscles, joints, and nerves since your neck is usually turned to one side as well as bent sideways. Generally, the two best sleep positions are to sleep on your side or best of all flat on your back, which keeps the spine in a neutral position. If you or your child is a side sleeper, place a small pillow between the knees to help alleviate strain and tension in the lower back. Similarly, placing a pillow under the knees will help back sleepers accomplish the same beneficial tension-relieving results. It also reduces the weight pressing against your spine by almost half.  If your child sleeps often on their stomach, she recommends using a body pillow to prevent turning.

With normal sleep, your nervous system deactivates certain portions of your brain to initiate deep sleep which allows you to feel rested, relaxed and reenergized in the morning. Some sleep experts suggest that neurons used during the day repair themselves during sleep.