Finding the Cat

The day Oskar was born

2012-08-01T07:39:00.001-07:00

August 1, 2006

This is what I remember about Oskar’s birth. Not the moment I first see his face, or his first cry. It’s a Dutch doctor slapping me on the stomach. “Get angry!” she yells. Her attempt to get me to push harder. I am too shocked to be angry. Thankfully, My doula Jackie puts a strategically placed needle into my ankle at that very moment, and I push Oskar out before the battle can escalate.

In the U.S., pregnancy and birth are treated both as a miracle and a medical condition. In Holland the attitude is more “ You’re having a baby, get over it.”. After having my first two children in hospitals in San Francisco, I am surprised at this attitude. Especially when it translates into me being thrown out on my extremely sore ass two hours after giving birth. The nurse starts getting antsy about an hour after they finish stitching me up. She keeps asking me if I need to pee yet. Finally, since I’m “ taking so long” she suggests my husband, new baby and I would move into the next room, which is empty but for two hard wooden chairs. She wouldn’t ask, she explains, it’s just that the custodian leaves at 9, and if we don’t leave, she’ll have to clean up the room herself.

Under the pressure of her impatience, I decide to fake pee and soon I am being wheeled down to the lobby of the hospital, baby in my arms and piled into a cab.

I look down at our son as I hold him in my arms in the backseat of the cab. Although he has received a quick sponge bath, he still has blood caked in his hair. His face is red and bunched from crying. The cab driver, who clearly picks up stunned couples with newborns in their arms in front of the hospital at 10 pm all the time, regales us with tales of his own children’s difficult newborn phase. It is hard to hear him above the screaming, but I note that he recommends celery water and rooiboos tea. He pulls up in front of our flat and dumps us at the curb where we are greeted by my ebullient Belgian landlord, who yells at random people passing by to come take a look at the new baby. I am also greeted by the 40 steep wooden stairs that lead to our flat. At this particular moment, living on the 4^th and 5^th floor of a walkup building seems like kind of a bad idea, even considering the view of the park. Luckily, the ebullient Belgian landlord carries Oskar up while my husband helps me gingerly climb the stairs. The older kids run over to look at their new brother, and within an hour, I am sitting on the sofa eating Dominos pizza. Except for the 10 stitches, the bloody baby and the mental scarring, it is all like nothing ever happened.

Why we need Obamacare

2012-07-30T09:18:00.003-07:00

I heard a story on the radio the other day. It was about a local artist, a singer/songwriter who was having a farewell concert. He and his wife were moving to Norway because he has a pre-existing medical condition and he can’t get medical insurance in the United States. I had never heard of him before, but when they played his music, it was really good and I felt sad that he was leaving.

I have a friend who got laid off recently. He is utterly employable and within two weeks, he had 9 job offers to choose between. His criteria for choosing a new job however, was not based on which company offered him the most money, or which he thought was the best fit. It was based solely on which company had the best insurance coverage for his son, who has cerebral palsy.

I have another friend who would like to start his own company. He’s smart, he’s capable, he has people who believe in his business model. But if he leaves his current job, he loses the group health plan that he and his children are on. And because of a pre-existing condition (a diagnosis of depression 10 years ago) he can’t get private health insurance.

When my husband lost a job a few years ago. I was terrified. Not because I thought we might be homeless, or starve, but because I knew my son Oskar, who has a rare chromosomal disorder was uninsurable unless we had a group health plan through a large company. (Thanks to the provisions of Obamacare already in effect, this is no longer the case. Insurance companies can’t deny children with pre-existing conditions coverage)

There are a lot of people talking about how under Obamacare, health insurance will affect business and economic development. Newsflash. Health insurance already affects business. How can it not affect society when artists have to leave the country, and people don’t start companies because they can’t get insured?

Why should any industry, especially one with such a reputation for greed and profiteering, have this kind of power over people’s lives?

I have to add, I’ve never actually met anyone who didn’t WANT health insurance. I’ve met quite a few people who can’t afford it, or who don’t need it badly enough yet to think it’s worth it, but never anyone who just didn’t want it. Have you?

Skinny Kids

2012-05-02T14:40:00.000-07:00

In fairy tales, all that is required to fatten up young children is to lure them to your candy house in the woods, lock them in a cage and feed them table scraps.

If only it was that easy in real life.

Many children with special needs are skinny little dudes. Oskar included. I have had such a hard time getting him to gain weight. The words “ feeding tube” have been mentioned to me before, and while I know they are a godsend to many parents who can’t get their kids to eat and drink enough, I’ve done everything I could to keep him from needing one. And so far, we’ve squeaked by. SQUEAKED. Oskar’s weight and height run right along the very bottom line of the growth chart, but he’s on it, and the pediatrician who helps me with his diet says that’s okay.

Here are some tricks for fattening your kids up, in case you don’t have a candy house in the woods.

#1 hands-down best fattening tip: Fage Greek Yogurt. Full Fat! Even when Oskie was on the modified Atkins for seizures, this was okay for him to eat. It has tons of protein and 300 calories in just one container. I would just put jam or stevia in there to sweeten it up a little bit and he loved it. Now we’re off dairy, so no more magic bullet, but it was great while it lasted. He gained weight so quickly the pediatrician who watches his growth asked me what I was doing so she could tell her other patients.

#2 Butter and oil. In everything. This seems obvious, but it wasn’t natural to me. Now I add butter (or Earth Balance if you are non-dairy) to his oatmeal, his applesauce, his smoothies in the am. Anywhere I can think of that it would taste okay. I add olive oil to all his savory foods. 1 tablespoon of melted Earth Balance has 100 calories.

#3 Neocate Nutra. This is something my aunt, who is a nutritionist at Childrens’ Hospital in St Paul told me about. It’s a powder that you mix in with pureed foods or liquids that doesn’t add bulk, but adds calories. 175 calories per serving. I used this for about a year, but it’s a little bit expensive ( 35$ a can) so I just lean on the butter hard

#4. If you use store bought babyfood, pick the highest calorie kinds. Then add stuff. Have you ever looked at those babyfood labels? The fruits and vegetables have, like 20 calories in them.

What else can you think of that’s fattening? Make it a hobby. Peanut butter or sun nut butter and applesauce are a great snack. Cook Oatmeal or Cream of Rice in milk instead of water. One of the super fattening breakfasts I make for Oskar that is delicious is Cream of Wheat cooked in almond milk, then I add Earth Balance, protein powder, a banana, strawberries and some coconut yogurt. It adds up to about 500 calories and he loves it.

It’s really too bad Oskar doesn’t like Cinnabon. My problems would be solved.

Is your sunblock worse for you than the sun?

2012-04-23T15:53:00.002-07:00

When I was a kid, nobody wore sunblock. In fact, we put baby oil on to get tan faster. Every once in a while some dork would wear zinc oxide on his nose and we would all have a laugh. I spent my summers peeling skin off the tip of my nose and counting freckles.

When I was about 12, this stuff came out called “Pre-Sun” that blocked the sun’s burning rays. It was alcohol-based and it stung like… well… it stung like alcohol on a sunburned face. I remember screaming and crying at the base of the mountain in Squaw when my parents pinned me down and slapped it on my reddened nose and cheeks.

Things have changed. My kids look like porcelain dolls all summer long. They freak out if they get the slightest bit pink. They ask for sunblock. Sunblock is good, right? Slather it on! The more the better….

But could it be that what’s in your favorite sunblock is actually worse for you than the sun?

Something like 60% of sunblocks on the market contain a hormone disruptor which some experts warn “ should not be applied to large areas of the skin”. Others contain Vitamin A, which is an additive that can actually accelerate the growth of skin tumors and lesions.

Thankfully, the Environmental Working Group puts out a yearly list of sunscreens that are not actually toxic. Most of them are mineral based. Looks like those zinc-oxide dorks were on to something.

They also publish a “Hall of shame” list. This year, the first four on the “most toxic” list are all marketed specifically towards babies. Including “ Waterbabies” that cute pink bottle with the Coppertone girl in pigtails and the playful little dog yanking on her undies. Who hasn’t had a bottle of that in their diaper bag at some point?

No one wants to slather their children in hormone disruptors, but for kids with special needs, who are sometimes bad detoxifiers, it could be is even more harmful.

So last summer, I printed out the EWG list and went to Whole foods and sat on the floor with the tester bottles and picked one that I liked. Some of the mineral-based sunblocks can be kind of pasty and hard to put on squirmy little kids. So I went through them all until I found one I liked. If you want to switch your sunblock, but don't want to go through all that or, if you want to order online, the brand I chose was California Baby.

Here are the links to the EWG website:

Top sunblocks: http://breakingnews.ewg.org/2011sunscreen/best-sunscreens/best-beach-sport-sunscreens

And the infamous “Hall of shame”:

http://breakingnews.ewg.org/2011sunscreen/hall-of-shame-whats-wrong-with-the-sunscreen-protection-business

It's Not My Fault

2012-03-22T10:05:00.001-07:00

I will admit that I don’t know much about the Buddhist notion of Karma. My superficial understanding is that it has something to do with payback. And when I found out that Oskar had a chromosomal deletion, I felt like it was Karma.

The doctors assured me that I couldn’t have caused the deletion by eating or drinking the wrong thing. The problem had probably occurred at conception. Some flukey thing that no one could have caused, stopped or predicted.

So I looked deeper. Maybe I was being punished for being ambivalent about having a third child. Maybe it was retribution for something I did in a past life. Or something mean I said in high school. Clearly, it was my fault somehow, on some level. A Karmic level.

When I told my therapist this ( I’m from California, of course I have a therapist!) she sent me to a psychic she knew and trusted. She explained that she did not usually send her patients to a psychic, but she knew that as many times as she told me it wasn’t my fault, I was never going to believe her.

The psychic told me that Oskar had been in an accident in his most recent past life. Paralyzed from the neck down. With a breathing tube. He had been very angry and unhappy, and had left that body as soon as he could. She told me that when he reached the astral plane, instead of processing his life and his anger, he has basically “ jumped the line” and jumped into a new body as soon as he could get one. The universe had put him in another imperfect body so that he could learn the lessons he has refused to learn in the previous life.

Ok, so you can laugh at that story, or believe it or whatever you want, but here’s the moral. Here is what I came away with.

We all have our own Karma. We are all here on our own journey, to learn our own lessons. Oskar’s life is HIS journey. Who knows what he can do, or achieve, or learn in this life? For me to think that his challenges are all about me is an amazing bit of narcissism. My life is affected by him, for sure. He has changed the way I see the world. But for me to insist on believing that his whole existence is some kind of lesson for me belittles his importance to the universe.

And that it how I came to believe that it is not my fault.

Weird side note: Oskar was born with what looks like a tracheotomy scar on his neck. Like the kind of scar that would be left by say, a breathing tube. Doctors ask about it all the time. No idea where it came from.

SFX: spooky music.

A Communication Device We Can All Afford. Paper.

2012-03-08T15:46:00.000-08:00

Oskar is non-verbal. This is fancy medical language that means he doesn’t talk. At least not yet. It’s hard to know exactly how much he understands, but I really do think he understands words like “bath” and “hungry” and “Sesame Street”. I lose him when I discuss the finer points of politics, but with what’s going on right now in this country, do any of us really get it?

About a year and a half ago, we got Oskar an I pad so that we could try some communication apps. I found a good, simple, inexpensive app called icomm (I think it was $9.99). You can download your own pictures and voice and it gives the user a choice of either two or four objects. When you touch the object you want, it expands to fit the screen. Pretty cool, but with Oskar’s motor planning issues, even touching the screen in the right place is challenging.

So we have gone low tech. At school, they started using pictures of toys he liked and seeing if he would use eye gaze to choose the preferred toy. That kind or worked, but since he was picking between two things he liked, it was hard to be sure he was really showing a preference. So they started showing him pictures of a thing he liked next to a picture of something boring, like a sock, just to check.

The verdict: He prefers toys to socks.

We have also been using pictures like this at home. Pictures of his drinking cup, a bowl of food, toys he likes. It kind of worked. I think the objects are a little bit abstract for him though. So this week we decided to take pictures of him with the object. Oskar drinking out of a cup. Oskar taking a bath. Oskar playing with his Ipad. We printed them out and bought a cheap laminator at Target and it’s really working. Now we can show him what we are going to do next, like take a bath, or get on the bus, and he can tell us what he wants. He can look at the pictures of his highchair or his special tomato chair and choose where he wants to sit. He can tell me if he wants to watch Elmo or Bunnytown. He can pick between peek-a –boo barn or the Smule piano app. The other day he even told us he wanted a nap by gazing at a picture of himself in bed.

Master of his own destiny!! A little bit, at least.

I am hopeful that someday he will be able to use something a little more high tech, but this feels like a good place to start.

The Guilt

2012-03-04T17:14:00.000-08:00

The Guilt

One of the hardest parts of being a parent of a child with special needs is the guilt that you are not doing enough to help your child.

If you are doing a dairy-free diet, there is always someone doing a dairy free, casein-free diet. If you are doing 3 days of physical therapy a week, the lady next to you is doing 5 days a week, and 6 hours at home. There is always someone who knows way more than you about diet, and supplements, equipment or funding.

There is always, always the feeling that there is more to know than any human can possibly learn. And that if you were just doing it right, your child would be better off.

At least that’s the way I feel, and I think I do a lot.

One of my fears about writing this blog is that I will somehow add to that feeling for some person. That they will read something and feel guilty for not acting on it right away, or that they didn’t already know it. That is not my intention.

I just learned to meditate, and in my class, my teacher explained that in the Vedic tradition of meditation, the mantra we say is meant to be like a seed. A Bija. It is not meant to take over your thoughts, but to gently rest in the back of your mind.

That is what I would like this blog to be for people. A seed. I would like for people to read it, and maybe act on it, or maybe 5 years from now, when they are ready, they remember something I mentioned and act on it. This blog is here forever, as far as I know, and is meant to be a resource.

If a year from now something I said resonates with you, you can come back and read it again.

Vaccinations in Amsterdam

2012-03-03T17:35:00.002-08:00

I have noticed that I have some followers in The Netherlands and for some reason, I feel the need to talk about vaccinations in the Netherlands today. In particular, the Pertussis vaccination (Kinkhoest).

I am not paranoid about vaccinations. Actually, let me correct that. I did not used to be paranoid about vaccinations. My first two children were vaccinated on the schedule their pediatrician recommended.

But, Oskar was born in Amsterdam and received all of his infant vaccinations there. After his third vaccination for Kinkhoest, he started having seizures. When I dug around and asked, I found out that in the Netherlands, they still use the whole cell pertussis vaccine. This is an older version of the vaccine. When I asked the doctor at the Consultati Bureau why, she told me they use the acellular ( newer, safer) version on older kids, but the old one on infants because it worked better.

I have told many doctors here that Oskar was vaccinated with whole cell pertussis, and most of them, although completely in favor of immunizations, couldn't believe they were still using it.

I don't know if they are still using it in the Netherlands, but you can Google whole cell pertussis and find tons of article about links to seizures and even if that's not true, it has a much lower rate of efficacy than the newer version.

I wish I had known then what I know now. I didn't ask what they were vaccinating my child with. I trusted doctors more then than I do now.

Just an FYI.

MNRI: The Masgutova Method

2012-02-28T12:30:00.004-08:00

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.

Huge breakthrough!

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.

More about BPA

2012-02-28T09:00:00.000-08:00

I just got this link from a newsletter I subscribe to. BPA is used in the lining for canned foods. It has suggestions on how to avoid BPA. Check it out.

http://www.breastcancerfund.org/reduce-your-risk/tips/kicking-the-can.html

Small, Bear-Shaped Hand Grenades

2012-02-21T08:21:00.002-08:00

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

Cheers!

Pill Advised

2012-02-15T11:08:00.000-08:00

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

The Seizure Will Not Be Televised

2012-02-10T09:17:00.000-08:00

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

The Problem with Milk

2012-02-09T08:49:00.000-08:00

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.

46 xy del 5Q 14.3-14.3

2012-02-05T13:10:00.000-08:00

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.

Finding the Cat

2012-02-05T12:37:00.000-08:00

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!