This page is where I'm going to collect things I wish I'd known earlier. I know it's impossible for anyone to know instantly after their kid's diagnosis all the things they need to do, but I hate how often extremely useful tidbits of information have come across my path almost by accident and almost never from the experts to whom I (together with my insurance company) am paying thousands of dollars.
Hopefully these tips will help someone else, too. Many of them are specific to Malachi's brand of CP, but you never know what someone else will find useful.
1. The Preemie Growth Project. Malachi is not quite two weeks into this program (as of 11/26/12) so I have yet to see any results. HOWEVER, I am hearing some truly remarkable stories from other participants and the founder seems very legit and caring. Check it out and see if you think you would like to try it. If we do start to see some undeniable results you can bet I'll put up a post about it and link to it here.
2. The Anat Baniel Method. Start this as early as possible. Here is everything I've written on the subject — as you can tell, not all positive, but I still think it's the best method out there: http://www.outrageousfortune.net/search/label/Anat%20Baniel%20Method
3. Malachi's scooter. Use a scooter board for children who can't crawl yet to help them get around, be more independent and learn spatial reasoning.
4. Alternatives to Pediasure. Like many kids with CP, Malachi had a hard time eating and gaining weight, though not as hard as some kids. He still got put on Pediasure, an extremely sugary dairy-based concoction. But it's easy and supposedly has all the needed nutrients (key distinction: that science has discovered so far) so I didn't mess with it for a long time. But I now know of an alternative: 2 oz heavy cream plus 6 oz whole milk (talk to your doctor before you switch; she/he will probably want them to take a multivitamin). But even better is 3 oz coconut milk plus 5 oz milk, rice milk or soy milk and even BETTER is mixing in a jar of Stage 2 fruit puree. Much healthier Pediasure-alternative made with real food, no blending required! And, Malachi gets much less constipated now that his diet isn't almost entirely dairy. Which leads me to...
5. Constipation tips. Like most kids with CP, Malachi gets stopped up fairly frequently. We have mostly been able to manage it with diet changes:
- Prunes (juice or pureed)
- Coconut milk (really a coconut cream, comes in a can)
- Pumpkin (Make a dessert with pumpkin, coconut and sweetener)
- Chia Seeds, sprinkled on top of other foods
- Fewer carbs and dairy
- Probiotics powders (We use Primadophilus for Kids)
• I've also heard good things about FruitEez but haven't gotten around to ordering it yet.
• If he's been straining for a day or two with no results, it's time to bring out the big guns.
- Glycerin suppositories are natural and mostly work by having something there to send a louder signal to the brain. Cut an adult one in half for little kids, even babies.
- Glycerin enemas — very fast relief!
- Magnesium sulfate (aka Epsom salt) is also a good laxative that had the added benefit of improving the body's ability to absorb nutrients and easing muscle contractions — perfect for cerebral palsy! I tend to add epsom salt to Malachi's baths so this is sort of a regular thing.
• There are also movements you can use such as the Wind-Relieving Pose in yoga and a technique we learned from an acupuncturist that involves pressure points that worked very well when Malachi was a baby, but less well now that he's older.
• Why shouldn't you just use MiraLAX? Glad you asked. (Spoiler alert: It contains neurotoxins and blocks the body's ability to absorb nutrients.)
6. Pinterest. In addition to this page, I also maintain a Pinterest board on cerebral palsy services and cerebral palsy products, where I stick anything I come across in my Internet adventures.
I'll keep adding as I think of other things that have made our lives easier!