Sunday, March 25, 2012

March 25, 2012 -- saved myself for last

First and foremost, my allergies are significantly reduced from last year. I'm still taking medication, but having no breakthrough symptoms yet. Now, this is a freaky allergy year, a very freaky one, because everything has been accelerated by at least four to six weeks. April 15 used to be the highwater of my misery and who knows when it's going to hit now, thanks to the bizarrely hot temperatures we had starting in February. But overall, there has definitely been a significant improvement. I'm looking forward to seeing how it plays out for the next three months, since oak pollen is my worst allergen of all. It has already started tinting everything it falls on chartreuse. We shall see what happens. I hope this means it will also be over sooner rather than later.

One thing I noticed since topping off was a lot more intestinal pain from my new friends than I had on my initial inoculation. I started with twenty-five and only added ten more, but I noticed a lot more pain, specifically a burning sensation around my umbilicus that would last for a minute or two. It never lasted more than five minutes at the very most. I've had no real diarrhea at all from hookworm.

My hypothyroidism seems to have gotten better because I have been able to cut the amount of Armour that I use in half after supplementing with selenium and iodine. I don't know how much of that is from helminths. I have taken selenium before and it never had that effect. Now I'm taking it ever other day and my thyroid seems to be doing a lot better. No return of short or long term deficiency symptoms.

My anxiety is still significantly reduced from pre-inoculation. Things just do not bother me the way that they did. I really feel as though my anxiety just completely vanished with the first inoculation. It is a great feeling after dealing with a lot of anxiety my entire life. Just that alone makes the treatment worthwhile for me, personally. It really makes me wonder how profoundly systemic inflammation affects the quality of our lives and how severe it can be without us even necessarily being aware of it. I saw that I had inflammation all over my body -- in my hands and feet, my arms and legs and I don't doubt that I have it elsewhere, aside from my chronically inflamed upper airway.

Update Part V from the World's Worst Blogger

OK, so here we are, almost caught up to real time, March 25, 2012.

This has been a freakishly warm last six months, in the big picture where I live, in greater metro Washington, DC. We had temperatures in the 80s in February. The plants here are going crazy. The cherry blossoms are basically over now and oak pollen is now tinting our lives a sickening shade of chartreuse. It rained yesterday and the storm drain at the foot our drive was full of charteuse scum.

First, the update on my little girl, who just turned nine. Since starting helminthic therapy at the end of June, she has gained seven pounds. She has grown four inches. Food is still a struggle, but thank God, the days of nothing but soy pancakes are over. She has gotten back a few foods -- rice, tomatoes, and potatoes. We have discovered she tolerates lamb very well.

As or even more significant have been the psychological changes in her. She took Singulair for a year back in first grade. It was a disaster for her. It made her have serious separation anxiety for the first time in her life. She didn't want to go school. She had panic attacks. She stopped taking it in June of 2010. Unfortunately, even after discontinuing it she did not bounce back. All of second grade was miserable for her. We had to walk her to the door of second grade every day. She made no friends. She was on the edge of having a panic attack every day. She had rampaging anxiety and nothing made it better.

Then she got hookworm in June of last year. Her anxiety vaporized completely, possibly for the first time in her entire life. She completely changed. One weird symptom of her illness and anxiety was that she couldn't stand to be exposed to anything that was frightening or involved suspense at all. She didn't want to listen to Mr. Rogers reading Goldilocks and the Three Bears. That's what non-stop anticipatory anxiety because your adrenal glands are cranked up to an 11 all the time does to you. That's what being in pain, twenty-four hours a day does. You can't stand even hearing a little kid story about something bad being read by America's uncle who entertains three year olds when your life is nothing but pain and more pain.

This winter, she read all seven Harry Potter books. She watched the movies on DVD. She announced to me very nonchalantly, "Scary stuff doesn't bother me." She makes jokes she never would have made before. She has a best friend now and they laugh about Harry Potter and Voldemort together. Voldemort!!! She can deal with Voldemort when last year she couldn't stand to listen to the evil queen on a tape of Disney's Snow White that her baby brother listened to and she would run into the other room to get away from it. She laughed at her brother's silly, irrational fears when his PANDAS was raging when it used to be him laughing at her for years.

She had huge amounts of anxiety over doing homework and practicing the violin. It's much better now. She's growing as a person in ways that we've been struggling with for years. These aspects of life do not show up on a biopsy, but they matter as much. I would say that hookworm has been worth it for her even if her eosinophilic esophagitis never gets any better, though I think it will.

She's just getting over chicken pox. She couldn't have the vaccine because it has porcine gelatin in it and she's extremely allergic to it. I was very worried about how it would affect her, given how extreme her illness is and how everything, historically, has made it worse. A cold could mean a three week absence from school. Well, she had two or three miserable days and now she's fine. Her immune system did great. She only missed four days of school and was dying to get back. She is sleeping better now than she ever has in her life. For a kid that didn't sleep for six and a half years, that is a huge accomplishment.

Now it's allergy season and she's doing OK. No sneezing so far, no red eyes, no increased EE episodes. We're still waiting to see what happens with the whole allergy season. I can say definitively that she is much better than she was last year, when I was promising her that I would do whatever was humanly possible to make her better.

She told me back in September that going to San Diego and getting hookworm was the best thing that ever happened to her.

Update Part IV from the World's Worst Blogger

We got back from San Diego and my husband's uncle died in Oakland at Thanksgiving. He had to go back and stay in California for nine days. He is very allergic to dust mites and had to stay in his aunt's house that had wall to wall carpeting. He got really sick from it. Despite this, he said that he could tell that the hookworms were making a big difference. He felt much less anxiety and much more social than he would normally. (I have noticed this effect as well and wonder now how much anxiety and a desire not to be social is related to inflammation, as a subconscious anticipation of pain if touched or jostled.) He was able to work every day on his computer doing software development and stay up late with his relatives.

Like me, within a few weeks of inoculation, he looked down and got the shock of his life that suddenly, his ankles and feet were much smaller than previously. Like me, he had a huge amount of swelling around his feet and ankles that he was completely unaware of because it had been that way for years. His ankles look chiseled compared to the way they appeared before. His face is now much less swollen, particularly from right below the cheekbones (around the bottom of the earlobe level) to right above the eyes.

He has felt better and better ever since. His sleep is much better; his hypopnea is significantly reduced. The amount of naps he takes have been cut way back. He doesn't have to sleep fourteen hours on the weekends now. He sleeps better at night because he is much less congested. He says he feels as though he has more energy than he can remember in a long, long time. He's started running and exercising at the gym regularly. He's running 5K easily on the treadmill in half an hour and has signed up to race this spring.

When he got back from California, he started making organic dairy kefir at home and drinking it. He's also bought a SCOBY and is making kombucha tea. And suddenly, for the first time in two decades, his diarrhea is gone. It's been gone for three weeks now. Before getting hookworm, he would consume tons of probiotics and improve marginally, but if he skipped a day, it was though he hadn't taken any ever. He simply couldn't maintain enough to not have diarrhea without taking more multiple times a day. It was as though he was constantly just getting off of a course of antibiotics.

He now has the energy to eat better and is trying to stick to a paleo-ish diet. We're starting to wonder how much of his ongoing diarrhea is from having a leaky gut. He thinks that the kefir seemed to reduce it but that he couldn't get real traction until he had hookworm as well.

Update Part III from the World's Worst Blogger

Two weeks after getting home from California, my son's antibiotics for his PANDAS ran out. This was propitious, because the worms do not do that well if a person is taking longterm antibiotics. Amazingly, the PANDAS was on the wane and then gone. We got our son back. He has gotten better and better with no recurrence, thank God. He can now run in from the edge of the sidewalk block of school all the way to his classroom by himself. He's no longer asking me if I'm still there over a hundred times a day. He's no longer afraid to go into the bathroom without me even in broad daylight. The panic attacks have stopped. He has completely stopped chewing his clothing. He is back to the same happy go lucky kid he was before.

I do not know how much hookworm had to do with his recovery from PANDAS. I do know that before we went to San Diego, there was no end in sight and that we were discussing with our pediatrician the possibility of medication with antibiotics daily until adulthood. My hunch is that hookworm has had a part in making him able to recover and sustaining it.

Teachers at school noticed that for the first time, he seemed less congested. This was an accomplishment given that he had a surgical procedure called turbinate reduction while he was having his tubes put it and it did absolutely nothing to reduce his congestion.

We have been working for years on teaching him to read. We got a great computer program called Funnix that is a Distar based program for teaching reading with phonics. Every lesson comes with a work sheet. At the beginning of us using this program, my son could barely hold the pencil by himself. He cried during every worksheet that it was too hard. I was holding his hand in mine to help him write. His hand was so weak that he had serious problems writing seven letter As on a line. He would write one by himself, would write one with me and I would end up holding his hand and writing the other five. As I mentioned in the previous entry, last spring I was told that there was a possibility that he would never be able to actually write using a pen or pencil, that we should consider assistive technology, using a computer for writing for life. This was after fours years of developmental preschool and three years of occupational therapy.

Three months after inoculation with hookworm, he was doing a lesson every day and writing out the entire worksheet by himself. I went to a meeting of his special education committee at school. They were astounded by what happened with him from Thanksgiving to after Christmas. He had made huge progress, over a year of progress in three months of his fine motor skill development. The OT was absolutely blown away. His special ed teacher was astounded. His writing skills have gone from barely being able to write his four letter name at all to being able to write six sentence stories by himself.`He is now at or above grade level with his neurotypical peers.

The amazing thing to us is that we weren't even considering how the worms would impact his autism and neurological issues. We were more concerned about the allergic component. Now there is no doubt in my mind that what has been going on with him has had a encephalitic component. Inflammation is the name of the game. This makes sense since the main biochemical treatment that gave him the ability to speak was very large doses of cod liver oil. Fish oil is extremely anti-inflammatory.

Allergy season is now underway in earnest in the DC metro area because of the freakishly early spring. My son has been able to skip days of antihistamines, has had no sneezing, red eyes or congestion as of yet. Of course, worse is to come but I'm hopeful that we're seeing a big improvement on the allergy front as the hookworms become established.

Update Part II from the World's Worst Blogger

We went to San Diego in the beginning of November because the kids had a long weekend from school. We left for San Diego from the East Coast on Friday and went back on Tuesday afternoon.

Everything went fine. The kids loved San Diego. Garin's driver picked us up at the hotel and we went to the clinic in Tijuana. It doesn't take long to get there, maybe 35 minutes from downtown San Diego. I met with Dr. Llamas to go over my son's medical history and how my daughter and I had been doing. Then my husband met with him to discuss his own history.

I had discussed with Garin that my daughter and I could get topped off since we would be there and we had very low amounts of hookworm to start with. He agreed this was a good idea, so we went ahead and did it.

I told my son he was getting a "Magic Bandaid" and it would be his ticket to Legoland. A neurotypical kid would have no issues with getting the bandaid with hookworm larvae applied. It's just somewhat itchy on and off, you keep it on for four hours and you're done. My son is not neurotypical, he could barely stand to ever have a band-aid on because of his sensory issues and does things like ripping IV lines out. But apparently Legoland is a powerful inducement. He was very itchy on and off for the first hour but he did fine.

Garin's driver took us back to our hotel and we had another great three days in San Diego. We went to Legoland with friends, loved eating breakfast at the Broken Yolk in the Gaslamp, saw the aircraft carrier Midway and had a fantastic time. Little did we know even better things were to come.