Archive for October, 2008

Maclaren special needs

I’ve heard from tons of parents how great the Maclaren special needs stroller is. I’ve never seen one before, as Chile has a really poor market in wheelchair and related stuff, but motivated from many great reviews, we decided to buy one. We bough it in the States and then a friend brought it here this week. I was shocked! It is HUGE compared with our regular umbrella stroller! So I wasn’t so excited about it until we went for a ride…

Now I see why they all love it. It is so, but SO easy to drive! I definitely loved it. Although it needs some adjustments, the seat alone is not enough for us, we put on the same foam seat we used on the old stroller. Fits perfect since it was originaly made for the Maclaren. So it was all worthy. Here are some pictures of our first ride, we went to my parents house to pick up gramma (they live a block away from us) and then to our nearest playground area.

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ABR

Recently, my blog was linked with ABR at Jacqui’s blog. This was pretty special to us, considering we found out about ABR on her blog. Anyway, I have been writing a lot about all the other crazy stuff we do and haven’t really written about what I like the most: ABR. I’m a HUGE fan, my spanish blog pretty much looks like ABR propaganda. I must add that we don’t do any PT, OT, Speech therapy, hippo or anything else since we started ABR.

So I though I’ll give a brief update here. We started ABR in january of 2008, 10 months ago, and so far we’ve done 650 hours (please, don’t do the math). First six months we were very lucky, Rocio showed an amazing progress according to ABR trainners. After that came the seizures and everything changed. But I did a list with some of the last changes when we got to 600, and here it is so you can see some of the reasons why I love ABR. This list has no order, but I’m also including some of the first changes, since they haven’t reversed and keep on improving.

  • She can move her legs indepently. This happened around 400 hours.
  • She is now able to sit for almost 1 minute (also about 400 hours).
  • Her trunk is much more stronger, this is the first change we saw and it has improved every week.
  • Arms and legs more loose. No more botox!!!
  • She can move her tongue a lot more. Now she moves foods side to side.
  • She has gained some body weight!! She was really skinny before and now she has a beautifull belly. This also translate in a couple of extra pounds. She is percentile 50 in height and weight charts of neurtypical kids.
  • She has a neck now!!! A long wonderfull one that is now getting wider and stronger.
  • Better head control.
  • Amazing long arms. She explores everything wih her hands now, she is using both arms a lot better (no hands yet, although they are more open and relaxed)
  • Better trunk shape, she almost doesn’t have a ‘diamond shaped’ ribcage anymore.
  • She has started to roll. Sometimes, she rolls 180° while she sleeps, wich is very good for our sleeping situation.
  • She pets us, her cats and also her classmates.
  • She talks more and her voice sounds different. Her crying sound more like a child and less like a baby.
  • She sings, sings and sings all day long. She loves to sing and we love to listen to her singing, even when is more like saying a vowel at the end of a sentence. A month ago she only sung some songs, now she plays along with any song that’s on the radio.
  • She is always looking for something to hold on to.
  • She is more independant. She can stay alone in a room for a while, before she needed to see you all the time. She can also play by herself for a while.
  • Shoulder blades and girdles are in much better position.
  • Did I mention she can sit now?

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Mad mud helmet

Sounds weird, uh? But yesterday we were tought how to do additional treatments that our new natural doctor prescribed. Yes, he didn’t only changed our diet we also have to do two exercises everyday. One is a specific massage with a wet and cold towell to improve her body circulation and another one is the mud helmet, wich I understand will help her with her seizures.

Yes, it’s weird and I don’t know if I believe in them, but… It’s all or nothing. I do believe this doctor’s diet will help her so much…  I just have to do this also. She won’t come to any harm. Massages doesn’t take too long and we’ll do them before dressing her up everyday and the helmet she can wear it during some ABR excercise, because she must be laying down during 1 hour with it.

So… No big deal, right?  Considering this is our best chance of gettint her off epi-meds, I’m doing it no matter what. I rather mud to drugs, the only side effect of mud is some dirty hair.

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GFCF and vegan!

So It’s been a while since my last post. Last seizure turned our world upside down. She was until then taking 2 drugs for her ‘epilepsy’ (I don’t think she is epileptic, it’s just another symptom of her brain damage to me). When she first sized, almost 3 months ago, doctors put her into a coma… And she has never been her self again. The epi drugs she is in makes her really sleepy, she is not as happy nor as active as she used to be. With this second seizure doctors gave her another epi med, one that makes her even MORE sleepy and absent of this world.

I’m not settling for this. I’m not putting my daughter to sleep for months or even years. I’m just not!! But… doctors love drugs, it’s all they can do. So we started to search for our options. And we found a lovely one: the GFCF diet. No, it’s not only for autism. It can also work for other neurological disorders such as epilepsy. Googling around I found out Dogtor J recommendation of this diet for epilepsy, and many success stories. So we were sure, we had to go GFCF and give it a shot!

Then I found out that a vegan doctor that has treated my mother and grandmother for almost 20 years, also happens to be a neurologist. So I though he could help us getting her off the meds as soon as possible. And as early as tuesday, just a couple of days after the second seizure, we had our appointment with him. And it went GREAT! He told us he couldn’t just treat the epilepsy because it was a part of her brain damage (ding!) and then explained us his theory about seizures: a circulation problem. So he gave us some tools to improve her circulation along with a great diet full with nutrients for her brain and nervous system.

And guess what? I wrote to ABR about our new treatment and they were so excited. Turns out they see seizures the same way!!! I was so happy to read this! It reassured me we are doing the right thing!!! The trainer said doctor’s explanation of seizure activity follows along the same line as theirs. He was so happy that we’ve found this doctor, he said his excellent approach and very open mind to the entire situation  will be of great value for us. I agree!!!

So on wednesday we bough all we needed to start her new diet (just her’s for the moment) and on thursday we started. Just a week before it all started. So I’ve been busy!!! But guess what… The very first day she slept all night. She hds never done this before!! We’ve had so many sleeping issues… And now she has slept every single night since she is not eating cow milk. Can you believe it? Four years not sleeping, four days sleeping. Is this working or what?

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Hello, Universe?

Sometimes things happen that make me think there is something more in the universe that just people living their lives. Don’t get me wrong, I’m a happy atheist (otherwise, I’d be SO MAD at that one!). But I just feel somehow we are all united… Sometimes.

This week on one of my favorite shows, Ellen, she invited Jenny McCarthy (show here is a couple of weeks delayed). Known actress, model and playboy mate. Now she is also a ‘mother warrior’. She has a 6 year old son with autism due to vaccination at 15 months. He was diagnosed at 3yo and she inmediatly started a special diet for him and claims that one year after starting it he didnt show any autistic symptoms.

A few days before, Marcela wrote about McCarthy on her blog. McCarthy wrote a book called ‘Mother Warriors: A Nation of Parents Healing Autism Agains All Odds’ and Marcela was inspired by McCarthy’s words. She believes mothers play a very important role in their child rehabilitation. She her self is part of a community of mothers taking rehabilitation into their hands, with treatments that convencional medicine doesn’t approve and guided by the idea of going back to what’s natural, trying to go back to the era when autism was not an epidemy.

Sooo… Epilepsy is a metabolic issue and to many, it’s treatable with the right diet. I’ve been ignoring this for a while, mostly because of my lazyness. I didn’t want to deal with diet changes and specially I didn’t want to have more reasons to fight with doctors… But now I don’t want to ignore it anymore. Today I feel the universe is talking to me (metaphoricaly speaking…) that this is our next step. It feels right! Difficult, but right! So far I’m only talking about reducing or eliminating dairy from her (or our) diet. Would that be too hard?

Here is Marcela’s quote frome McCarthy’s book. It is quite impressive how it seems to work just fine with ABR and convencional therapy… I could relate with most of the things McCarthy said on Ellen show. She call us ‘mother warriors’ I call us ‘mamás terapeutas’, but we are talking about the same thing. I guess what I’ve discovered is that ‘mother wariors’ don´t get to pick their battles… We just got to fight them all for our kids!

The most powerful tool of a mother who has a child with autism is the power of believing her child will get better. If your mind is consantly second-guessing and questioning the validity of biomedical treatments when so many moms are saying they help, then that is the path you will stay on. You will stay in the unknown. But if you are determined to heal your child and all of your focus is toward that goal, then your path will be with those who have recovered their children. Nowhere else. There is no second-guessing in this direction. There is not trying the diet halfway in this direction. There are NO excuses in this direction. There’s only focus, determination, faith, and a clear vision of the best possible outcome for the child.

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She seized again.

I hate it. For the second time in her life, my daughter seized. What a horrible feeling!! Absolutely horrible. I think ‘cerebral palsy’ is much easier to accept that the ‘epilepsy’ diagnose. With cerebral palsy you start a new and different life after saying goodbye to a lot of preconceived ideas. So it hurts a while, but life goes on. But epilepsy means she can seize at anytime, it’s a permanent fear. On friday, her backpack was all set up for preschool, it was a normal and happy day… Then in 1 second everything was upside down.

She woke up weird of her nap. She was able to talk and move, but she just wasn’t herself. So it took me a while to say ‘Ok, this is a seizure’ and to apply the prescribed antidote (Pacinax). And now I know that if the seizure lasts longer than 20 minutes, then it’s arbitrarly called a status epilepticus and she has to stay in the hospital for observation. So, imagine my guilt… But she was even talking! Talking enough to say ‘yes’ when asked if her arm was bothering her.

It hurts so much. It kills me that she has to go thru all this. She is a f***ing child! She is MY child and I still haven’t figured out how to help her. Sometimes I think: she is tough girl, she’ll be better… But no child should have to live thru this! It’s a lot to ask. Doctors are just filling her up with drugs that are not even working, so I’m looking for an alternative way. Tradicional medicine is just lost when it comes to the brain.

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Impossible is nothing

When Rocío was born in 2004, ADIDAS had a slogan that saids ‘Impossible is nothing’. It has been in my mind a lot lately, as we watch our little girl do the most amazing things. My favorite is when she seats, do I need to say more?.

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