A little piece of heaven

* Today I went to a meeting with a lawyer and an advocate regarding special education laws. It was super informative. I presented our situation and they gave me some great advice as to how to proceed with the school district. I’ve decided to go to these meetings every two weeks – the more informed I am, the better.

* About 2 years ago, one of our friends developed very very severe arthritis/chronic fatigue/fibromyalgia. She went to a bunch of doctors and nobody could help her. She maxed out on meds very fast and wasn’t getting better and could barely cope with the pain. She went to several practitioners and eventually fuond a homeopath who started working with her. At that point she couldn’t walk and was in a wheelchair. Today she is back to normal, walking running jumping, and is mostly pain free. Yesterday I took Nathan to this homeopath who did a very thorough 3 hour evaluation, and gave Nathan a homeopathic remedy that we’ll be starting tomorrow. She believes she can help him with his respiratory problems, that she can improve his immune system by 200%, that she can improve his muscle tone and endurance. I am excited to see what happens!

* Nathan is doing well on Kelly’s formula and hasn’t thrown up in a while so no G-tube for now!

* We’ve finished with our “round” of appointments – dentist, homeopath, craniofacial surgeon, pediatrician, wheelchair specialist, and DAN doctor. He has no cavities and we just need to do a deep clean of his teeth, he’s on a new homeopathic remedy and we have to follow up with her in a week, nothing we can do about the palate or wide open mouth, x-rays and bloodwork with the pediatrician, Thevo twist trial with the wheelchair specialist, and blood and urine test with the DAN doctor.

* Our NY trip is ON! We will be heading out there on Nov 6th for 10 days. We’ll be at Rutgers 2 days for the neurocognitive assessment. Then 3 days of Medek with Azriel. Then 2 days of fun with friends!

* Guess who got a passport?

Why a passport if we’re only going to New York? That’s because we’re not just going to NY. Belle and I are going to Brazil next week!!!! We’re having a girls-week-out, leaving the boys at home and spending a week meditating in Brazil near Sao Paulo. And maybe a few extra days in the beaches near Rio. I am partly bummed that Nathan isn’t coming but very excited about this!

This is the letter I sent to Nathan’s pediatrician. What do you think, did I strike a happy medium?

I want to start off this email by telling you how much I appreciate you and how much gratitude I hold in my heart for you. Of all of the doctors we have seen in the last 4 years, you by far surpass them all. You are the smartest, most caring, most compassionate of all of them. I appreciate the great care you’ve taken of Nathan and all of the times you have helped him and gone above and beyond to ensure his health and well being.

Which leads me to our appointment yesterday for Nathan’s checkup. I know you are concerned for his well-being and you only want what’s best for him. Which I know is why you were cautioning me about some of the supplements and things we’ve done for him. I really appreciate your concern and advice. But I do want to ask that you have some respect for my decisions as Nathan’s mother. We love him to no end and would never do anything to harm him. Even though it doesn’t seem that way to you, I am very cautious and I research everything, EVERYTHING we do very carefully.

Since Nathan was born, I have spent an average of 3 hours a day researching brain plasticity, rehabilitation, alternative medicine, cerebral palsy, equipment, and anything that might benefit him. I am a member of about 15 yahoo groups dealing with brain injury (HPE, CP, etc). I follow over 50 blogs and I read everything these families post. Everything. I never miss a post. I have spoken to countless professionals, both in the alternative and traditional medical world, and consider myself very informed and knowledgeable regarding issues that Nathan deals with.

Based on all of my research and reading of medical studies/journals, and especially, based on the experience of other families, I have made decisions that I have considered beneficial for Nathan.

Yes, I know that many of the decisions I have made don’t make sense to you because they are outside of your field of expertise. But what is important here is that I believe in them, that I have spoken, in each and every case, with the parties involved, other families, and have researched every treatment extensively. And based on my research I have engaged in therapies that I have concluded would have the possibility of helping Nathan.

You mentioned that I should run everything past you before doing it. Quite frankly I haven’t done so in the past because you’ve made it very clear to me that you don’t believe that any of these alternative treatments can help. I am intimidated by you and I clam up and have difficulty speaking up. So I have been bringing him to you any time he has an illness and I see you as being in charge of his medical treatment, while I am in charge of his rehabilitation.

And quite frankly, I am pleased with how we are doing. Nathan has been mostly very healthy. When he’s had illnesses you’ve helped us manage them very well. He hasn’t been hospitalized in almost 4 years. He hasn’t had any surgeries or major illnesses. He’s a healthy, smart, happy boy that loves the world around him.

So I thought this was a good time to check in with you to see if you are interested in continuing Nathan’s care while knowing that I am making the best decisions that I can for his rehabilitation. Even though he hasn’t progressed significantly in motor function, I am very pleased with his overall progress and even physically he has gained skills and abilities that I was told he would never gain. For being a child with such severe brain damage I believe he is coming along very nicely.

If you are interested, and you would like me to involve you in decisions I make regarding his rehabilitation, I would ask that you have some respect for me as his mother and as an intelligent adult. You see the world from one point of view, I see it from another. I would never do anything to harm him. If you don’t believe in chiropractic care or homeopathy or supplements, I respect your opinion. And especially if you have safety information regarding these treatments, I would love to hear them. But if I decide to move forward with these treatments, I hope you respect my decisions.

I wish I could tell all of this to you in person but unfortunately, as I said earlier, I find you very intimidating. So I just don’t say anything. But I realize now this isn’t helpful to either of us, especially to Nathan, so either we decide to move forward in partnership or we decide to not work together on Nathan’s team. I would love you to continue being Nathan’s doctors as, like I said before, I think you are a brilliant and amazing doctor and human being. But if we do move forward, I need you to respect me too.

Once you let me know your thoughts we can figure out what the next step is regarding the referrals and treatments that we talked about at Nathan’s appointment yesterday.

Thank you very much Dr, again, for everything you have done for my Nathan.

…or at least, that’s why Nathan’s doctor thinks I am.

Let me say this first. I love Nathan’s doctor. She is the best doctor I know. She’s a House kind of doctor. She’s a great diagnostician. She is smart and gutsy and almost always spot on. She has kept Nathan out of the ER numerous times and has always been a great advocate for him. When we have a crises, she’s the only one I trust.

But after she told me I would go to hell for taking Nathan for stem cell therapy, I decided to keep things very basic with her … I take Nathan to her when he is sick, I don’t tell her more than I have to, and I keep things really simple. When she tells me it’s time to vaccinate Nathan, I tell her I’ll have his dad bring him back because he’s better with shots than I am…and then we never show up. For the last 4 years, this has worked for us. She’s an integral part of Nathan’s team and we are appreciative of her for helping us during many crises.

Today I had a brain fart. She asked me what meds Nathan was on, and I said happily, other than his supplements, he is med free! “What supplements?” She asked. And I brain farted again. “Oh, you know, his B6, B12, D, C, homeopathics, fish oil, you know, all the regular stuff”. She looked at me strangely. “And who gave him all these supplements?” “The chiropractor gave him some, his DAN doctor gave him others, the homeopath gave him another, the nutritionist gave us the new formula we’re using.”

Then she went red in the face. And started yelling.

“Do you know that Vitamin D in excess quantities can become toxic and cause increased ICP? And how do you know what’s in these supplements? Did you know that supplements in the US are not regulated? That many supplements are made in China with sub-par ingredients? How could you give him all this without checking with me?” Inside I was thinking, “Because I only use the highest quality supplements. Because he’s on dosages too small to make him toxic? Because I didn’t want to hear you scream at me”

She was furious. And Nathan laughing at her. Hysterically. I’m not kidding. She yelled, he laughed.

So I said to her, Doc, Nathan is mostly very healthy, look he’s on no meds, hasn’t been hospitalized, he’s in great shape, you know what an accomplishment that is, so what I’m doing is working.

Her response, “He’s been healthy! He would’ve been healthy without all this junk. You’ve been flushing money down the toilet. You should’ve been using that money to pay for insurance.”

At which point I came quite close to losing it. Because we HAVE insurance. And we pay a FORTUNE for it. But I kept it together and corrected her on the insurance issue.

And I kindly asked her, “So Doc, what would you to do help Nathan? What would you do to boost his immune system? To improve his muscle tone? To improve his digestion and respiratory system?”

She turned away and started typing into her computer. Then she told me she would give us a referral to an ENT, to another orthopedist, and to a nutritionist. Even though I told her that we HAVE a nutritionist. I even showed her Kelly Dorfman’s site, where it is apparent that she is quite a reputable nutritionist, and proceeded to say that how did I know she wasn’t making everything up that was on her site? And when I told her we have Nathan on a Metagenics formula, she said it was a scam, that someone tried getting her to sell metagenics and that the practitioners earn a percentage. Except I don’t buy the formula from Kelly, I buy it from a local shop that sells it. Anyways, I told her that if she could tell me of a formula that is gluten casein free and has lower sugar content, I was all for it. So she asked me why it had to be gluten casein free. And I bit my tongue instead of telling her of the DAN testing that we’d done to tell us about Nathan’s gluten and casein intolerance. Because I’ve never told her he’s on a GFCF diet. Because maybe she would’ve slapped me at this point?

Anyways, she also told me we’d do bloodwork to check for different levels of vitamins, and an X-ray of his nasal passageways. And she’d write an order for his latest vaccines.

At which point she walked out to write the orders. And I took advantage of the moment to grab my boy and run run run as fast as I could away from that office. If we’d been in a hospital I’d have been AMA.

So I’m an idiot, for trying to help my son. I’m an idiot for not giving him pediasure. I’m an idiot for using supplements that have been proven to be helpful for children with brain injuries. I’m an idiot for using alternative medicine. I’m an idiot for taking Nathan to a chiropractor and for working with a nutritionist remotely.

Honestly, I was kinda laughing inside me. Because she doesn’t even know the half of it. I barely scratched the surface with what I told her. Hehehe.

I know it sounds weird, but I didn’t take offense. She was trying to protect Nathan, as best as she knows how. She was making sure we weren’t giving him anything that could be harmful.

So now I am trying to decide. Do I need a new doctor? What do you guys think? I know it sounds like a stupid question given the fact that she pretty much berated and insulted me for 30 minutes straight. But she IS an excellent doctor. Think of House. Great diagnostician, awful bedside manner. Would you fire him as your kid’s doctor, or keep him?

Oh, and the good news of the day – she said even though Nathan is on the skinny side, he looks very well nourished and she didn’t think we had to talk about a G-tube again for a while!!! So we can set that aside for now!