Tuesday, February 28, 2012
About a year ago, I finally got Oskar "qualified" for Speech Therapy. Previously, when I had him assessed, the therapists had explained to me that he didn't qualify for services because he wasn't babbling or showing signs that he was trying to speak. My subsequent thought was something along the lines of " Yes, that's the problem, you see. No talking. Hence the need for speech therapy". But I'm not a trained specialist, so what do I know? Apparently, the magic words to get him qualified were "oral-motor" therapy. I could get him qualified for swallowing and feeding problems.
So I took him to a local therapy place, had a formal assessment done and the insurance paperwork approved and headed off to our first appointment with great anticipation. For 1/2 an hour, I watched this lady place a vibrating brush on Oskar's lips, try to get him to drink from a cup and have him bite on a Cheeto. I paid my 180 dollars and went home. What a total waste of my time. And his. I am sure that there are kids out there who have made great gains through Cheeto therapy, but we had been doing all this stuff since he was a year old and with his OT's from the school system. It just wasn't going to make a difference for him.
Luckily, in the same week, I discovered MNRI. MNRI, otherwise referred to as the Masgutova Method or Reflex Integration, is based on the theory that some people, including kids with neurological problems, Autism, CP or kids who have experienced trauma ( physical, or emotional) don't always integrate their primitive reflexes properly.
You know how if you tip a newborn back they flail their arms like they are falling? That's the Moro reflex. Head- righting is the reflex that makes you right your head when you are tipped to the side so you can still see straight. Babinksi is in the foot. If you stroke the outside edge of a typical babies foot, they will turn their foot in and stick up a toe. Later in life, it's the reflex that helps you push off when you learn to crawl. It also effects speech and chewing and all kinds of things you don't generally think of as having anything to do with your feet.
There are hundreds of these reflexes that we are all born with. They are the foundation for normal development. In the Masgutova Method, a core specialist can look at your kid and tell you what reflexes need to be integrated and then show you how to do the excercises needed. In most cases, the point is to coax the reflex to appear, and then keep going with it until it is integrated into the next step of development. In some cases, like with kids who startle easily or are anxious, it could mean calming an overactive reflex, like the Moro.
We started about a year ago with just speech therapy once a week. This summer I had the amazing experience of attending an 8 day family conference here in MN. We are up to 3.5 hours a week of speech and OT using this method and about 5 hours a week at home.
All of the therapists I know who are using the technique are very excited about it. I have heard it called the missing link, and that is the way I feel about it. At the conference, I heard of kids walking for the first time, or saying their very first words.
Oskar still can't speak, but since we have started this therapy he has a protective reflex, which means he will put his arms out if he is falling ( helpful one, that). He is stronger over all and more cognitively present. He can chew better, drink from a cup and a straw, his eyesight and tracking are better and we are trying to teach him to crawl.
The technique is being used for kids and adults with neurological problems, ADD, Autism, learning disibilities and even eating disorders.
If you are interested in this kind of therapy for your child, the hardest part will be finding a practitioner. There are clusters of people practicing in Northern California, Florida and Minnesota, but for the rest of the country, it's kind of hit or miss. We get services through an OT and a Speech therapist and insurance pays for it.
Another option is to attend a family conference. They are intensive camps where your kid gets worked on 7 to 8 hours a day. Most of it is done on a massage table, or if you have a kid that can't sit still, the therapist will literally follow your kid around the room. They are between 3-8 days long all over the United States, and in Poland, where the Masgutova Clinic is.
If you want to read more, here is the link for the Masgutova Institute: http://masgutovamethod.com
I wish they would put a list of practitioners state by state, but for some reason they still haven't done it. Unless you live in Minnesota, you may just have to Google MNRI or reflex integration in your area, or you can join "Children with Challenges" which is the Facebook Group for MNRI and post a message asking if there is anyone doing it in your city.
Tuesday, February 21, 2012
I walked out of an appointment the other day with some new information: new food intolerances, high heavy metal levels. The upshot is that Oskar is having immune reactions to the milk I am giving him and the stuff I use to thicken it. As if that's not enough, the bottles I am feeding him out of probably have BPA in them. I looked at the honey bear squeeze bottle in the side of my baby-bag in a whole new way. Suddenly it had become a small, bear-shaped hand grenade.
BPA is short for Bisphenol A. It's used to make most things that are made out of plastic. It's probably toxic, and it's illegal to use in many countries. Not ours though!
The doctor I saw that day told me that Oskar is clearly not a good de-toxifier, as his heavy metal levels would attest... since I do not feed him lead or let him weld or smelt heavy metals ( he has asked, I promise you :). He absorbs these toxins from the environment. So it is especially important that I be careful about the pans I cook in, (No non-stick pans!) and the containers I feed him out of. I kind of knew this. I always feed him out of glass bowls, and I used to have glass baby bottles, but I forgot when it came to the bear bottles. They are sold on websites for kids with special needs and they come with tubing to use as a straw. They were great when Oskar stopped wanting to drink out of bottles, and are flexible so I could squeeze liquid into his mouth.
I'm not sure that they have BPA, but when I did a Google search for BPA- free honey bear bottles, nothing came up. They are plastic, so I assume they have it.
Here's the good news, I found something I like better! When I Googled the bear bottles, I found a website that sells BPA- free squeeze bottles with BPA- free tubing for the straws. They aren't cheap at almost 20 dollars a kit, but they come with an awesome valve that holds the liquid in the straw, ( good for kids with a weak suck or beginning straw drinkers) and a nifty little device called a lip block that you can put at the end of the straw for kids who bite through straws. It also prevents the straw from going too far into your child's mouth.
Here is the link: http://www.arktherapeutic.com/Cip-kupSAR.html
Wednesday, February 15, 2012
These are all the drugs and supplements Oskar takes everyday. He weighs 30 pounds. It's scary, and it used to be worse! Most of us take supplements and prescription drugs,and sometimes the people who prescribe one don't know much about the other. One of Oskar's practitioners told me about this website called "Pill Advised" where you can check for interactions between your supplements, over the counter medicines and prescription drugs. Of, course, you should ask your doctor or pharmacist about these things, but it can't hurt to double check. If you live in a foreign country, your drug names may be different than ours, If they don't show up on the website, you might have to Google the name of the drug in the U.S.
Here is the link: http://pilladvised.com
Friday, February 10, 2012
In movies and after-school specials, seizures all look the same. Someone falls on the floor, their eyes roll back and they start to convulse. It's called a Grand Mal. For most of my life I thought that this is what all seizures looked like.
My Son Oskar had his first seizure on March 12, 2007. I will never forget the moment it happened. We had just returned home from a doctors appointment at the Consultati Bureau in Amsterdam. The windows were open, the birds were singing. It was a beautiful spring day. My babysitter, Lizzie sat on the sofa with Oskar on her lap and said " My, he's jumpy today. I think I just startled him."
He continued to be "startled" about 100 times a day, and in clusters of 30 or 40 " startles" when he woke up in the morning. Myoclonic seizures. I must have told 5 different doctors about these startles before anyone took me seriously and scheduled him for an EEG.
I am constantly surprised at the lack of knowledge about seizures. I have had therapists and even doctors who work with special needs children all day long ask me to explain what myoclonic seizures are.
So here for you now, a sexy "behind-the-scenes" tour of seizures:
First, Generalized seizures. These seizures involve the whole brain, as opposed to partial seizures, which generally start in one place and only involve part of the brain.
The Absence seizure, or Petit Mal: This seizure just looks like your kid is spacing out! It's a brief impairment of consciousness that only lasts a few seconds. You kid will just stare vacantly, not speaking or hearing what is said. Sometimes when I ask my typically developing kids to clean their rooms, they look like they are having this kind of seizure. The difference is that kids actually having a seizure will not respond to threats of having their computer taken away for the rest of the day. Seriously, this type of seizure is hard to detect and they sometimes go undiagnosed for months or years.
Myoclonic Seizures or Myoclonic Jerks: Sudden, brief muscle jerks. Can be mild and affect only part of the body or strong enough to throw the child to the floor. When I explain them to people I tell them that it's kind of like when you are falling asleep and you dream you are falling and your body jerks. They tend to come in clusters, Oskar's are clustered when he wakes up in the morning and from naps. I've asked his neurologist and he says they don't hurt. I hope this is true.
Atonic: Also called drop attacks. These seizures look like an abrupt loss of muscle tone. Sometimes just the head drops, sometimes your kids will crumble completely and fall to the floor. Imagine how scary that would be. A lot of kids who have these kind of seizures have to wear helmets cause they will hit their heads when they fall.
Tonic: Sudden onset of increased tone. An arm can fly out, the child may grimace or contort their face. Sometimes one side of the body is affected. Sometimes both . They usually last less than 60 seconds. If standing, the child may fall. Degree os impairment of conciousness varies. Sometimes a tonic seizure, will be followed by.....
Tonic-Clonic or Grand Mal: The movie star seizure! This seizure generally starts with a stiffening of the limbs ( the tonic part) followed by jerking of the limbs and face ( the clonic part). During the tonic phase breathing may decrease or stop and your kid's lips may turn blue. Oskar had the tonic part one night when he had a fever and it scared the crap out of me. I hope it never happens again.
Infantile Spasms: Onset of these seizures is generally in the first year of life. Particularly between the ages of 4 to 8 months. This one actually can look a lot like myoclonic jerks, or it can look like your baby is doing sit ups! The way they tell this from myoclonic seizures is a distinct EEG pattern. This kind of seizure is also called West Syndrome.
And now, Partial Seizures. Again, these seizures have a "focal point" in your brain and are isolated. If your kid has these kind of seizures, they are possible candidates for surgery to remove the part of the brain where the seizures occur. This used to horrify me, but if your kid has uncontrollable seizures, this surgery can be a the cure. The brain is so amazing it can re-route things to compensate for the part you have removed. Partial seizures are the most common kind of seizure and can manifest as almost any movement, sensory or emotional symptom, including visual or auditory hallucinations. So, they've got that going for them.
Simple Partial Seizures: 30-60 seconds long, no loss of consciousness, produces sudden jerking, sensory phenomenon, weakness or loss of sensation. I had a friend once tell me she had deja vu all the time and couldn't figure out why and then found out it was seizures.
Complex Partial Seizures: 1-2 minutes long. May be preceded by an aura or some other kind of warning sign. Produces automatisms like lip smacking, picking at clothes, fumbling. The kid having the seizure will be unaware of his or her environment and have mild to moderate confusion.
There is a website run by the Epilepsy foundation that I have found to be helpful. It has information about seizures (much of which I just ripped off for this post) and medications: www.epilepsyfoundation.org/aboutepilepsy/seizures/index.cfm
Thursday, February 9, 2012
Oh, the irony. For years, I worked on a famous advertising campaign for milk. When I felt pangs of guilt for working in a field where so much money and energy was spent on 30 second films to make people buy things, I consoled myself that at least I was selling something worthwhile. I mean, milk, c'mon. It's got vitamin D and calcium and all that good stuff. What could be wrong with that? Nothing. Unless you are intolerant to dairy, like my son Oskar. It's still kind of hippi-ish to believe in food intolerances, I think. Many western doctors will scoff at you when you mention dairy intolerance. Let them scoff, because this I know; before I took Oskar off of dairy products, he had reflux, eczema and asthma. Bad asthma. Like, the pulmonologist had me nebulizing him with steroids and Albuterol three time a day. The fact that the little mask they sent home was shaped like a fish did not amuse Oskar in the least, nor keep him from crying and struggling to get the thing off of his face. Luckily, one of the biomedical doctors I was seeing ran a simple test, called ELISA. This is something you can do at home. A fingerprick and about 10 drops of blood you send off to a lab. It tests for food intolerances, which are different than food allergies, which cause rashes and hives and anaphylactic shock. Intolerances are more like chronic yuckiness. Stomach aches, loss of appetite, reflux, wheeziness, rough skin, bags under the eyes. At the time I discovered this intolerance, Oskar was on the Ketogenic diet. It's a diet for seizures that is very high fat, and of course, based almost entirely on dairy products. Within four days of getting rid of the dairy, he was asthma free. His skin got better and he started wanting to eat again.
The good news about "the problem with milk", is that it only takes 4 days to get dairy out of your system. If you have a kid you think might be reacting to dairy, just get rid of it for a few days and see what happens. Luckily, stores like Whole Foods have replacements for almost every dairy product you can think of. Some of Oskie's favorites are vanilla almond milk, "So delicious" coconut milk yogurt and ice cream, Amande Almond milk yogurt, and Almond milk cheese. Almond milk has just as much calcium and vitamin D as regular 2% milk. You can also try Rice milk , coconut milk or hemp milk and some places carry flax milk, which is pretty tasty and has good omega fatty acids. For butter, we use Earth Balance spread made from canola oil. Apparently a lot of kids who have problems with dairy also have problems with soy, so you might want to avoid it if you can. If you decide to stay off milk for the long haul, have your doctor look at what your kid is eating to make sure they are getting enough fat and calcium and vitamin D.
Sunday, February 5, 2012
We all probably learned about genes in biology. Some guy named Mendel I think. Something about sweet peas and cross breeding genes. I forgot about it, until Oskar was born and suddenly it became very relevant to me. When I tell people he has a chromosomal deletion, I get a lot of blank stares. A look I am sure i would have had myself five years ago. So here is short tutorial on human genetics as I understand them.
Our DNA is composed of 46 chromosomes. 23 pair. We get one from our dad and one from our mom. So we all have two 1st chromosomes, two second etc. They are the things you might remember from that biology class that look like are little worms. some are short, some are longer. Each chromosome carries a couple hundred genes organized in rows called bands. They are the little bits of information that determine our hair color, our eye color, height, I.Q. They switch off and on in the course of our development and our lifetime and make us who we are.
Every single cell in our body has this DNA in it. Every single cell has all this information in it's center.
In Oskar, ONE of his 5th chromosomes is missing one little line of this information. Band 14.3. 10 genes. Out of 25,000 in his DNA chain. It's amazing to me that this one tiny piece of information, missing on just one of his chromosomes can make such a difference. But it's missing in every single cell of his body and it has made all the difference
It makes you realize what a miracles we all are.
In my twenties, oh so long ago, I had two cats named Gato and Cujo. We were very close. I was really crazy about them. I suppose I was not very careful with them, though because they got lost a lot. Cujo especially. One time he was lost for a week until I found him closed up in the utility closet under my neighbors house. Another time... well, I'll make a long story short, but I found him after looking every day for three weeks. He was five miles away from where I lived in a small hole in the drywall of a chinese family's house on Clement street in San Francisco. When I finally got him home, he looked pissed that it had taken me so long. Another time, Gato disappeared from our house in Mill Valley. After a few days, a neighbor told me that some people down the street had moved away. So I stole mail out of their mailbox, found their new number in the phone book and tracked them down. They had taken Gato, thinking he was homeless( he apparently spent a lot of time at their house talking trash about me). They kept him in the garage, but he had run away into the hills in San Rafael, and they had no idea where he was. That weekend, My sister Jennifer, my brother-in-law Ben and I spent every daylight hour walking around that neighborhood shaking boxes of kibble, calling Gato and posting flyers. Late Sunday evening, I remember hanging our last flyer at Scotty's market. At least 5 miles away and down in a valley below where Gato had disappeared. We all went home defeated. Two days later, a lady called. She had seen that VERY LAST FLYER and Gato was in her yard. WE FOUND HIM!
So why am I telling this story? These experiences have had a profound effect on me. The life lesson I learned is that the cat is out there. You just have to keep looking.
This outlook on life has influenced the way I feel about my son, Oskar. He has a chromosomal deletion. 10 missing genes that mean he has seizures, hypotonia and severe developmental delays. When he was diagnosed with the deletion, the doctors all acted like they had found the answer. Whenever he has a problem, they tell me this is because of his deletion. To me, it is the equivalent of having your child get hit by a bus, rushing to the hospital and having the doctors tell you that the problem is that your child got hit by a bus. That there is nothing more to know. What got broken? How can I fix it? All the doctors can tell me is that the bus was yellow.
I keep looking for the person who is going to know how to help him. I don't know if there will ever be day when I will give up. I almost gave up on Cujo, and all I had to do was intimidate a very confused chinese woman and get into her crawl space to find him. Some nights I cry because I feel like I can hear the cat, and I don't know where to look any more . Some nights I can't sleep because I can hear the cat and I can't wait to get up the next day and start looking again.
I am writing this blog in the hopes that there are others out there like me, looking for information to unanswerable questions, and that maybe my search can be of use to someone else. Maybe I will find your cat while looking for Oskar's.
But mark my words, I will find the cat!