Another long one

Has it really been almost two weeks since my last post?! I guess time flies when you're overwhelmed. I will be making up for lost time with this blog post:

• JF's surgery
• HSP
• Waking up dry
• Starting Lamictal
• Progress on the house
• Scratching at daycare
• Starving Brains

JF's surgery

We rescheduled JF's hydrocele/hernia surgery because of his recent illness. It's now scheduled for Monday, April 2.

HSP

As I mentioned in my previous post, JF was diagnosed with Henoch Schonlein purpura (HSP). I'm still not sure what this really means, but he seems to be back to his normal self now. (I can't say he's all better. He hasn't been "all better" since his allergies first became apparent over a year ago.)

JF seems to get sick less often now that he's on Pulmicort, but this was a doozy. I think he broke a record for the number of symptoms/diagnoses he went through in less than a week: runny/stuffy nose, sneezing, coughing, rash on his legs/feet, fever, microscopic amounts of blood in his urine, HSP, refusing to eat, throwing up, stomach virus, double ear infection, slight iron deficiency, and (drumroll please) pinkeye! This required one trip to the ER on Sunday and two trips to the pediatrician during the week. The double ear infection earned him ten days of Augmentin, which he has almost finished and which seemed to clear up everything.

Is there some kind of trade-off going on here? He's sick less often on Pulmicort, but ridiculously worse than usual when he does get sick. If there is a trade-off, maybe we should reconsider whether the Pulmicort is a good idea.

Waking up dry

JF has been waking up dry every morning for about a week. After the first few days of this, we stopped putting him in a diaper for night-night. I still can't believe it. It makes me wonder if we parents really are involved in the potty training process at all!

Now he just needs to figure out pooping in the potty!

Starting Lamictal

JF started taking Lamictal for his mini-seizures on Tuesday. For the first two weeks, we're giving him one chewable tablet in the morning and a half tablet in the evening. Over the next 15 weeks, he'll work his way up to five tablets twice a day. And we have to watch for any rash.

I had to make a chart of his daily medications to help us remember what to give him and when:

Morning:

• 2 Gummy Vites or 1 ML PolyViSol (alternating until we run out of PolyViSol)
• 0.6 ML FerInSol (iron supplement because of the deficiency mentioned above)
• 1 tsp Augmentin
• Lamictal (as directed by the neurologist)
• Pulmicort

Evening:

• 1 tsp Augmentin
• Lamictal (as directed by the neurologist)
• Pulmicort
• 1.5 tsp Zyrtec

Isn't this ridiculous?

We still need to schedule the MRI and the follow up with the neurologist.

JF's PEP teacher came over last night for a home visit, and we showed her the neurologist's MRI order (from 3/2/07). She pointed out that it says, "R/O dysplasia, mass" and translated that to mean, "Rule out dysplasia or mass." Great. One more thing to worry about!

Progress on the house

This morning, AF was trying to figure out how much painting he has left to do on the house before we can put it on the market. He was estimating that he was two-thirds done because he just has to do the entire upstairs and a few touch-ups downstairs. I pointed out that he still needs to do the kitchen. He said, "Okay, so I'm only half-done."

I think he's been working on the house for a month, with one week off because of JF's illness. So maybe we'll be able to put the house on the market in another month?

AF has developed a good work strategy: During the day, while JF is at daycare and I'm at work, he paints and loads up the minivan with furniture and boxes of stuff. (It's amazing how much stuff we can live without for a few months.) Then, when I come home and take over with the boy, AF hauls the minivan to Jessup. It's a lot of work, but it's an efficient use of time.

Scratching at daycare

The director of JF's daycare called me today to say that his scratching/pinching is getting out of control. She said that she had seen three of his classmates with scratches on their faces. JF's teacher had been notifying us now & then that JF was still doing this, but she always reassured us that it's a phase he'll grow out of. Now the director has asked me or AF to spend two days at the daycare with JF.

AF is willing to take time off from painting to sit with JF at the daycare on Monday and Tuesday, but we're frustrated that it has come to this. JF hasn't displayed any of these aggressive behaviors at home in weeks, and I don't know if he ever displayed them in the PEP class. His PEP teacher knows how to nip it in the bud.

I sent an e-mail message to JF's PEP teacher about this right away. Her response was quite long. Her theory is that "he doesn't know how to say 'come play with me' or 'let's play' so he is grabbing his classmates in an attempt to engage them." She agreed with the idea of AF attending daycare with JF for two days. She also volunteered to visit the daycare on Wednesday herself. The rest of her message was about what the daycare should do about it:

• Move him from the twos class to the threes class. (This is long overdue: He will be four in May.) These kids "will be better able to tell him to cut it out when he looks to squeeze their faces to get attention."
• "Structure his play somewhat - i.e. set up kids for him to play with - even when they have free time and make sure he is within their sight to monitor how he is playing."
• "When he behaves inappropriately he needs to hear a stern harsh voice....He should almost begin to cry when reprimanded because that will mean that he gets it."
• "He should also have to sit in a 'time out' or 'get ready' area for at least 4 minutes, apologize for his actions, and then be allowed to return to an activity."

I wish we could take this PEP teacher with us when we move. The daycare did move him to the threes class, and he is apparently happy about it. I hope all of this works, because I'm afraid they might kick him out of daycare otherwise.

Starving Brains

I have finally finished reading Children with Starving Brains by Jaquelyn McCandless, MD. At first I was very skeptical, but by the time I had read about 2/3 of the book, I became convinced that:

• Mercury, in the form of thimerosol in vaccines, can trigger autism.
• Multiple vaccines, such as MMR, can trigger autism.
• Kids with autism tend to have a decreased ability to detoxify themselves. Mercury decreases one's ability to detoxify oneself. (Which came first, the decreased ability or the toxin?)
• Autism is more than just a genetic disorder, and it impacts more than just behavior and language.
• Treating autism requires healing the gut, improving nutrition, and removing toxins (such as mercury).
• Many kids with autism can't fully digest proteins, such as gluten or casein.
• Many kids with autism have leaky guts, which allows large food protein molecules to reach the bloodstream and the brain.
• The body's immune system responds to these large molecules and the child becomes oversensitive to these foods. The child has diarrhea, constipation, or both. (JF alternates between both.)
• Some of the large food proteins act like morphine in the brain.
• Kids with autism tend to crave the very foods that they should be avoiding. (JF loves anything made from dairy or grains, but is very picky about anything else. Clue!)
• Kids with autism tend to have other auto-immune diseases such as allergies and asthma, and tend to get sick more often. (Sounds like JF!)

I wanted to try everything that this book recommended, but I know that we should try only one thing at a time. But still, I figured we could get the ball rolling on some of the things that would take a long time, and try one thing on JF while we waited for those other things to pan out.

The book recommends starting with the GFCF diet, and it even says it's one of the few things that parents can do without a doctor's supervision. I was afraid that my husband would be reluctant to change JF's diet, so I decided to compromise and just try him on a casein-free diet. We bought a carton of almond milk and dove in head-first.

We were dealing with the change well enough, until we went to my nephew's birthday party. JF could not have any pizza, dip, salad (because it had a creamy dressing on it), or birthday cake. JF didn't seem to miss any of it. He filled up on peanuts, corn chips, and chicken. But AF was very upset.

We talked it over. I realized that I had left my husband behind in my enthusiasm. I need his full support, if not his full partnership, on this endeavor. I need to take the time to discuss it with him, have a meeting of minds about it. (Where's a Vulcan mind-meld when you need one?) I need to stop being a bull-dozer.

AF made a good point that we should enlist the help of a doctor in this dietary change (in spite of what the book says), to make sure that we don't do JF any harm. I believe that we need only to give JF calcium supplements, but maybe there is more to consider.

So I called JF's pediatrician and told him about everything that I've been reading in the Starving Brains book. His response was essentially, "I'm not an autism expert, but I can recommend one." He seemed unwilling to participate in a biomedical approach to autism, claiming that he didn't have the expertise. The doctor that he recommended is on the DAN web site's list of doctors, but she doesn't participate in any health care plan. And my health care plan doesn't cover out-of-network doctors, at all.

So I decided to call the original DAN doctor that I had found over a month ago. (This one is in-network.) But the one time I had spoken to him on the phone, he had said that I should (1) find out whether any of JF's vaccines had mercury, and (2) make an appointment for a consultation. I was afraid to try the second without having done the first. I started making phone calls:

• The hospital where JF was born promised to fax the records to a doctor for me.
• The second pediatrician said, "Only the flu shot." I asked, "So the flu shot had thimerosol?" They back-tracked and said maybe. (I need to call them back and ask them to call the manufacturer.)
• I had to call the first pediatrician twice to find out that they are contacting the manufacturer of a flu shot and they will call me back.
• The third (and current) pediatrician said the only vaccine JF has had in his office was a thimerosol-free flu shot.
• Something reminded me that I'd had a flu shot when I was pregnant, before JF was born. I called the OB-GYN who had given me that flu shot. They contacted the manufacturer and are waiting for an answer from them.

Then I called the DAN doctor, intending to make an appointment for a consultation. The earliest appointment I could get was in June! I was appalled. I understand supply and demand, but this is ridiculous! I eventually did make an appointment with him for June 8th, but I didn't want to have to wait until June before starting JF on the GFCF diet.

So I called the developmental pediatrician that JF's PEP teacher had recommended, Dr. Chernoff. I had already made one appointment with this doctor for JF, but I'd had to cancel it because of his illness. I rescheduled for April 27th. I also asked for their fax number to receive the hospital records (for the mercury search).

So then I was bummed, because I still have to wait over a month before we can start JF on this GFCF diet. (I'm also bummed because he's taking antibiotics, which may be upsetting his internal flora. And we're remodelling, which may be exposing him to toxins.) Meanwhile, he is getting older. The older he gets, the less effective any treatments will be. Time is running out! There has to be something I can do!

Then I had an idea. Why not try the GFCF diet myself? Half of the problem of starting JF on this diet is the daunting aspect of figuring out where to get GFCF products and figuring out how to work it into our lifestyles. (We do most of our cooking in the microwave.) By starting myself on the diet, we split the problem in two. Divide and conquer!

So I ordered a shopping guide from gfcf.com. (How can they claim to be "The largest FREE resource of it's kind on the Internet" when all of their resources cost money?) As soon as I get that guide in the mail, I'm starting the diet. For now, I'm savoring each and every thing I eat, because it may be the last time I get to eat it in a long time.

Rash

JF has a stuffy nose, a fever, and a rash on his legs & feet. AF is at the ER with him now.

I also have a stuffy nose. Maybe a fever. (I rarely bother to take my own temp.) But no rash.

The house is still not on the market, but a neighbor's friend came over yesterday morning, with his whole family, to look it over. It would be great if we can sell the house without ever putting it on the market, but I'm not holding my breath.

JF's blood has been drawn, in preparation for starting Lamictal for epilepsy, but we haven't heard results yet.

I recently met a nice lady who said she was "made on a Friday." She said she had so many things medically wrong with her, it must have been late on a Friday, almost quitting time, when God made her. I believe that God is all-powerful, and does not make mistakes, but I like that analogy. It works for me, and my son, too!

Parenthood is an adventure.

Thank you to everyone who has commented on my blog recently. Sorry I haven't had time to comment on anyone else's blog. I've been lurking, mentally sympathizing and celebrating with everyone.

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Update: The ER has diagnosed JF's rash as Henoch Scholein Purpura. And the adventure continues!

Surgery scheduled

JF's outpatient surgery for his hydrocele/hernia is Monday, March 19th at 9:00 AM.

In other news, JF figured out how to pee standing up! (A cold toilet seat was apparently all he needed.)

Busy, busy, busy

We've been very busy lately:

• Too much to do and not enough time!
• Results of JF's EEG
• Weekend plans
• Last post for a while?

Too much to do and not enough time!

When I woke up on Thursday morning and realized that it was the first day of March, I started to panic. AF's brother wants to sell us his Jessup house by April. All this time, I've been thinking of April as being a few months away. Now it's March and we haven't put our Gaithersburg house on the market yet!

Meanwhile, the job that AF has been working on for over a year suddenly dried up, two weeks ago. They have occasional work for him to do, an hour here, a few hours there. Normally, AF would be complaining loudly because when he doesn't work, he doesn't get paid. However, we have so much work to do on the house before we can put it on the market, he's been grateful for the time off. His normal income will be missed, but we'll manage.

For the past two weeks, AF has been packing up stuff that we don't use very often or we aren't using right now, hauling it to (and storing it in) the Jessup house. He's been arranging what's left according to the home-stager's instructions. He's been taking down pictures and spackeling (sp?) the holes. He took our W2s and other paperwork to H&R Block to get our taxes done. He went to our credit union and applied for a pre-authorization for a home loan.

And his self-esteem is plunging because he hasn't been "working." I try to pump up his ego by telling him how much I appreciate everything he's doing and that he's doing a great job at it. I'm not sure how well that's working.

Results of JF's EEG

AF also went to a follow-up appointment today for JF's 1/24/07 EEG. Are you ready for this? JF has epilepsy. The patient instruction sheet said, "Epilepsy - partial or multifocal."

Why am I not surprised? Because it explains his staring spells. We didn't notice these staring spells until his PEP teacher mentioned them. We're so accustomed to JF and having to regain his attention in the middle of a task, that we never noticed them. These spells are apparently mini-siezures (petit mal?).

I haven't done much research about epilepsy, but I've started reading the WebMD epilepsy topic overview. This article lists the symptoms of a seizure, incuding "Your senses may not work right." I'm wondering if this might explain JF's sensory issues and developmental delay. The way I see it, if JF has had these mini-siezures all of his life, and his senses don't work right before/during/after these seizures, why wouldn't he have sensory issues and a developmental delay?

Yet, when I searched WebMD for the words "epilepsy" and "developmental delay" the only useful result was an autism topic overview that says, "about a third of children with autism develop a seizure disorder (such as epilepsy) by their teen years." This seems to be the opposite of what I was looking for.

So, I'll keep researching (beyond WebMD), in my free time. (What free time?)

Meanwhile, we need to schedule an MRI and a blood test. (The MRI I can understand, but I'm not sure what the blood test is for.) I'm going to ask the doctor to have them look for Arnold Chiari Malformation. The last time I had asked her about ACM, she had said that there wasn't enough to justify an MRI. Now that we're doing an MRI anyway, why not look for ACM?

The doctor also prescribed medication for JF to start immediately. If I'm reading the doctor's handwriting correctly, it's Lamictal 5mg chewable, on a schedule that increases the number of pills every two weeks. I hope it helps.

Weekend plans

We've been talking for the past two weeks about how we're going to repaint the inside of the house and refinish the floors. One part of the plan is that AF's friends will come over and they'd have a painting party. Another part of the plan is that JF and I will spend a weekend elsewhere, so that we're not in the way and so that JF isn't breathing in all the paint fumes.

AF had suggested that we spend the weekend with one of my two sisters. However, they both have cats and JF is allergic to cats. I worry enough about JF's allergies (and his associated infections) when we just visit my sisters for a few hours. Spending the night was out of the question.

Then I had an idea. I could take JF to the Jessup house, and spend a weekend there! Not only would we be out of the way and avoid the fumes, but JF would have a preview of living in the new house! (I had been worried about JF's reaction to the move.)

So we had a tentative plan, but we didn't know which weekend it would be.

Then AF called me at work this afternoon. "Honey, I know how you hate last minute plans, but my buddies are busy every weekend except this weekend." Sigh.

So AF asked his brother whether it would be okay for JF and me to camp out at the Jessup house this Saturday. Yup. We're good to go.

Last post for a while?

Considering how busy we will be for the next few weeks (months?), this may be my last post for a while. I might have a few minutes here and there to post comments on other blogs, though.