Sundays, sundays

We had some very good days with good sleep. Nicky ate very good and no bath room issues. On Saturday we went to the city of Wetzlar, where we spend the day with Anna. It was very peaceful and Nicky kept walking with us up and down the hills of the city. We even sat down in a street cafe for half an hour. Nicky was just very good. Even the drive in the car was good.

But then came Sunday. And just like last Sunday Nicky was a different person. He was loud, restless, uncooperative. We had to give him Benadryl again. But that didn't do the trick right away for him. After 3 more hours he finally calmed down and even fell asleep on the couch for a nap.

So what is going on with him? Is it something he eats or does on Saturdays that pushes him over the edge on Sunday?

Well my birthday is next Sunday, i just want my love bug Nicky feeling good.

Wednesday march 11th and Thursday 12th

The last days where uneventful. Nicky was mostly calm and contend. On Wednesday he had issues with falling asleep and he woke up a couple times during the night so w. had to stay with him the whole night. I think the pomegranate juice made him hyper, i will give this another try in a week. Pomegranate juice would be so great for him.
Yesterday he fell asleep on the couch at 7pm and slept through the night without once waking up.
We absolutely will go back to supplements, but we will watch it closely.

Today our friend Anna from the US is visiting us for the weekend. She is in Denmark for a semester right now. We are all very excited. We will have some "Wiener Schnitzel" tonight. Everybody loves them and they are SO typical for Germany. Tomorrow we will visit Wetzlar and Sunday Frankfurt. Philip is jumping in circles right now, he can't wait.

March 10th, first day "Without"

Just a short update like promised: This is the first day without supplements and herbal teas. Nicky did good in therapy session, no stimming, no craziness, no loud noises, good visit on the potty ;O) . He fell asleep without melatonin and through the night.

Starting over

Once in a while we do a "Starting over" with supplements and treatments for Nicky. It gives us answers what really helps him and what not and especially what makes him crazy and stimmy. This is the perfect timing right now: We got the test results back last week (see post) where we saw some improvements and some things we have to fix, like the uric acid problem.
We had a terrible weekend with Nicky and couldn't figure it out why. He was loud, unhappy, restless and just kept us on our feet for hours. On Sunday noon, i finally gave him some Benadryl. It was the only thing i knew would help him. And it did, he finally sat down for two hours before he started all over again.
It brakes your heart, and the worse is, there is NO one out there who can help you. It really could be that he is in pain, but there is no way to figure it out. Last night he woke up, sweating, screaming, and i almost heart an "Aua" . It can be everything, just a nightmare, his stomach, his liver, his kidneys, it could be life threatening.
But we have, like almost all parents with kids on the spectrum, given up to talk to pediatricians and neurologist about test results. They don't give it a look, i saw it last week at an appointment in a children's hospital. The doctor was really nice and good, very sensitive and helpful, but he doesn't care about biomedical stuff.

Well anyway, today we start with "No Supplements at all" and i will use this blog as a dairy on his behaviour. I will especially look into sleeping patterns, behavior (stimming, craziness), constipation problems and how therapy sessions work.
See ya later!

Is it GOUT????

We got Nicky's last Urine-Blood-Stool-Test back. We do this once-twice a year to see where he has deficits in different areas: Liver, Fatty acids, Vitamins, Gluthation and especially yeast issues. I will tell you more in a posting later this week. But i just came over something interesting. since we make this tests for the last four years, Nicky always had problems with uric acid and also citric acid. So our new DAN here in Germany gave us some meds to lower the uric acid. After half a year we made the test again in January '09. I was sure we are in a better place now and was full of hope.But not so! The test came back with uric acid levels still elevated, better then in august, but still very elevated. So??? You think you have it under control and then it just hits you! Can it be gout? Is it a dietary issue after all? Nicky always had big problems with gross motor skills, he had three times a hip infection in his life (ever had one or know one? No? Same here, till our son came along!). His tests always came back with elevated uric acid. Does that makes sense? YES if you read about GOUT. There is a recommendation in diet:

Here is a partial list of foods high in purines, which have the highest concentration of purines and should be avoided by those who are prone to gout or are already suffering from it.
Beef * Pork * Bacon * Lamb * Seafood * Foods that are made with a significant amount of yeast such as beer and bread * Alcoholic beverages While these foods high purine levels can also aggravate symptoms of gout, they can sometimes be enjoyed in moderation by those who usually follow a low purine diet.
Asparagus * Cauliflower * Mushrooms * Peas * Spinach * Whole-grain breads and cereals * White poultry meats, such as chicken, duck and turkey * Kidney and lima beans.
And finally, here are some foods that are safe to include in a low purine diet, though they should not comprise the entirety of your eating plan.
Green vegetables and tomatoes * Fruits and fruit juices * Breads that do not use yeast (check the kosher section or a health food store) * Nuts * Milk and milk products, such as butter and cheese * Chocolate * Coffee and tea.
If you suffer from gout or have a family predisposition to the disease, it is a good idea to steer clear of low carbohydrate diets such as the Atkins and Protein Power diets. Their recommendation to eat large amounts of foods high purines such as meats and dark vegetables is almost certain to cause problems in those predisposed to gout.

AHA, low carb diet is not good if you suffer from high uric acid. But that's what SCD is all about, isn't it? So i have to ask myself what do i want to treat? His uric acid problem and with it probably joint pain on every step he makes? Or constipation, which comes back when we go back to Carbs.
Stay posted, i haven't figured it out, i am still in shock and denial.

Stimmy, Stimmy ...and how to get that kid asleep

So we are in a "Down-face" right now. The last 1 1/2 weeks where hard on the whole family. Nicky is very loud, stimmy and over all just very uncooperative. You see it on little things during the whole day that something is bothering him.
That starts in the morning when he has to get dressed: He doesn't put his hand through the sleeve itself, he kind of fights it. It's a struggle.
But the worse is his sleeping pattern right now. He wakes up screaming during the night, he want the light on or somebody sleeping next to him. He also has a hard time fall asleep.You think he should be exhausted by the end of the day, especially with all the stimming and loud noises he makes. But hell NO! He is up, loud. And even he falls asleep, he wakes up after two hours, sitting in his bed. and seems like he is is done with sleeping.
So the first thing you look into as parents of an autistic kid is, "What have you changed that pushed him over the edge?" . Supplements are always a good guess, but also food could be the reason. Another is (and that's actually something good) that he is dumping toxins like yeast or heavy metals. In this process called Herxheimer reaction the child is feeling worse for a few days before an improvement occurs.
Because he is on a couple new supplements for over three weeks already i don't think is a Herxheimer reaction, it might be that the supplements itself (Olive leaf extract, artichokes and other nat. herbs) make him stimmy and sleepless.
So i left it out for three days and we already saw an improvement in sleep in the first night. Last night was actually good, he didn't wake up once after midnight and woke up for his normal school day time at 6 o'clock.
I also changed a few things in his bedtime routine. We give him Trytophan, which has Magnesium in it, along with other ingredients. Magnesium given at night makes you all sleepy and your body relax.
I also give him some herbal tea, called the Lazy Tea by Janosch with verlian, Anis, fennel, peppermint, Lavender. Very soothing, and he loves it so much, he drinks a full pot full over the late afternoon and evening.
Another thing is giving a bath with verlian herbs. I just bought the herbs in the pharmacy (welcome to Germany, where you get all nat. stuff!) and make a big pot of tea out of it.Beautiful calming bath essence.
There is a big section about sleep in one of my all-time-favourite autism books "Autism, Effective Biomedical Treatments" by Jon Pangborn . He talks about all this things and more, one is for example, that your body can not produce Melatonin, a hormone, that makes you sleep, as long as the lights are on. WOW! Nicky loves the light on at night, but he also has trouble to sleep through. As soon as we removed that bedside-lamp his night was so much better.

I am sure that there is so much more out there and if you want to share it with me, i would love to learn about it.

Let hope for a calm weekend, it's supposed to be sunny here temp's in the upper 50's.
Have a great weekend!

Holy ginger

So i made some ginger root-tea yesterday. I read in the Body ecology diet book that ginger root tea has some contracting effects on your intestines. Contracting is what we are looking for b/c of the constipation problems we are facing. So i boiled several slices of fresh ginger (love that taste of that root) and cooked it for 15 minutes. The recipe asked for Stevia to sweeten. But somehow Germany still doesn't allow that sweeter. Which is just bull, this is a natural sweetener and everywhere else in the world available. But i have a source (Hi Dr. F.!) to get it. So soon the sugar-trap will be gone and we will get more and more in the BED. The BED (Body Ecology diet) is a little tricky, but it all sounds so reasonable to me and for Nicky.

So anyway, i made that tea, sweetened it with honey and tasted it for myself. Well,YUMMY, spicy and it is a real thirst quencher. Nicky had half a sippy cup full, even he didn't like it first, he came back for more after having a sip.

This morning after N. woke up, he went successful to the potty. Never happened before in the a.m.

There are little things on the BED you can follow from the beginning. But there is a 80/20 rule (http://www.bodyecology.com/07/01/04/80-20_rule_essential_to_diet.php) i find hard to follow. But by time i will find a way. When we started SCD i thought, this is impossible to do. It's not, it's your child, and you would give your life for them. So cooking is just a walk in the park :o)

Have a great Sunday.