Saturday, August 18, 2007

Insomnia, for many reasons

I woke up at 3:00 AM. After about a half-hour, I gave up trying to get back to sleep. I made myself some chamomile tea, ate some peanut butter, and started making a to-do list to get things off my mind. That woke me up even more.

So here I am, attempting to write about everything that I've been wanting to write about for the past few weeks:
  • My body is not cooperating
  • Epsom salt
  • Settlement date
  • Marriage counselor
  • Computer failure
  • JF's accomplishments

My body is not cooperating

Over a month ago, I decided to take myself off of the GFCF diet, but I have not been able to do so. Why not? Because I think I should reintroduce gluten and milk one at a time and watch for any reactions, just in case. After four months on the GFCF diet, I may have made myself lactose-intolerant. Also, I've read that many people have celiac disease (gluten intolerance) and don't even know it. So it would be silly of me to just dive back into the world of cheese cake, pizza, and buttered toast.

But what reactions would indicate a problem with gluten or milk? Diarrhea. And what have I been struggling with for the past month? Diarrhea. If I try gluten or milk now, I won't know if it causes a problem for me.

I went to the doctor's office on July 25th. I told the nurse practitioner about the GFCF diet, the stress in my life, and the diarrhea. She told me to give stool samples to the lab, suggested I increase my fiber & water intake, and said I might have irritable bowel syndrome. I also mentioned to the nurse that I had tried taking probiotics for a couple of days just to see if that would help. She said, "Well, you'd have to take it longer than that to see any effect." I think she said a week or two.

The lab results were negative (meaning they found no problems). I've been taking Metamucil, gradually increasing my dosage. I'm currently taking 2 capsules in the morning and 2 in the evening. I'm also taking probiotics (Kirkman's Pro-Bio Gold) once a day. I'm not sure whether these are helping, yet.

In the meantime, I am getting increasingly frustrated about having to stay on the GFCF diet. One co-worker brings in Dunkin doughnuts every Friday. I'm worried that he'll stop bringing them in just as I manage to get myself off the diet.

I've told a few friends about this frustration, and each one has asked, "But what if it's the diet that is causing your diarrhea?" The only way that the diet could be causing it (I think), is if it has caused a deficiency, such as a deficiency of fiber. I probably have been getting less fiber since I started the diet. And I'm working on that. Otherwise, I think the nurse practitioner would have told me to quit the diet.

The more I read about irritable bowel syndrome, the more I believe that's what my problem is. I've had symptoms of it for years (such as abdominal pains just before needing to use the bathroom), maybe even as far back as grade school. I never went to the doctor about it though, because it was never this bad. Maybe I've just never had this much stress in my life before!

Epsom salt

We finally did give JF an epsom salt foot-bath at bedtime (on Friday July 27th, I think), with a quarter-cup of espom salt (magnesium sulfate) in it. My hope was that (a) the magnesium would help calm him down and help him fall asleep at bedtime, and (b) the sulfate would help him to detoxify himself. (If I can't put JF on a diet to avoid toxins, let's help his body to deal with those toxins!)

That night, it was as difficult as usual to get JF to go to sleep. Maybe a quarter-cup wasn't enough? Maybe a foot-bath wasn't enough?

I think the sulfate may have helped, though. After that night, when JF got mosquito bites, they didn't develop into huge welts like they usually do, and they seemed to disappear faster. I think even AF noticed this, but he probably wouldn't agree with my theory that it was because of the epsom salts.

Also since that night, JF has gotten sick once, while we were in Vermont. This was right on schedule, based on his previous frequency, but it wasn't as bad. We were expecting three days of fever, ranging from 100 to 104, day and night. This was a lower fever (100-101), for only two days, and only at night!

Again, AF probably wouldn't agree with my theory that it was because of the epsom salts.

And we haven't tried the epsom salts again (on JF) since then. Maybe I can persuade AF to let us try it again, maybe with a half-cup in a full bath this time, sometime soon. And maybe we can deter JF from drinking the bathwater, by having him wear the mask from his nebulizer.

I have also given myself an epsom salts bath. It was relaxing. I've been taking showers rather than baths for so long, I had forgotten how nice it is to soak in hot water. Otherwise, I'm not sure if I noticed any beneficial effects.

The red bumps on my lap seem to be less pronounced these days, but I don't know whether to thank the sulfates or the probiotics for that.

Settlement date

Our house is still under contract, but the settlement date is a moving target. The original settlement date was yesterday (8/17/07). Now the settlement date is Wednesday (8/22/07). And we already have a heads-up that it might move to next Friday (8/24/07). This is all because the buyers have shaky financing and the mortgage lending industry is in upheaval right now.

As I understand it, the buyers have nowhere to live right now. I don't know whether they are living with friends, or living in a hotel, or what. Maybe they're camping in a park somewhere. This business is stressful enough for us; I can't imagine what it must be like for them.

Our contract also specifies a two-day rent-back after the settlement date. This is to protect us. We don't want to start moving our stuff until we're certain, and we won't be certain until it's a done deal. If settlement is on a Friday, that would make it easier for family members to help us move. If settlement is on a Wednesday, that would make it easier for us to contact utilities. I'm not sure which one I prefer. I just want to move!

On Monday, AF and I will take time off work to visit some daycares in the area where we want to move. We'll pick one, and pay the registration fee or whatever it takes to reserve a spot for JF, just in case our house sells. We're risking the money it takes to reserve the spot, but I'd rather have the peace of mind. We should have done this weeks ago. Better late than never!

Marriage counselor

AF and I saw a marriage counselor yesterday. She is a psychologist on my healthcare plan and she was recommended by our next-door neighbors. I wish we'd had more than an hour with her. It's difficult to explain the whole situation in just one hour.

I tried to explain the DAN approach and where I stand as far as wanting to try more biomedical stuff on JF. AF tried to explain where he stands. He complained about my persistence. He said I've been dismissive about his concerns. He said that in most things, I tend to consult with everybody about every detail, but with this DAN stuff, I started behaving differently. I had told people, "This is what we're going to do, and I need your support." (This is my attempt to describe how AF sees me, but I'm not sure how well I'm doing it.)

I think what AF doesn't realize is that I've always had this worrier/warrior dichotomy. When I don't have enough information, I worry. So I start gathering information, sometimes by asking friends and family what they think, sometimes by reading books, sometimes both. After I have gathered what I perceive as enough information, I take action. AF may be wondering why I didn't consult with friends and family about autism the way I usually do about many other things.

And that's a good question. Before I read the Starving Brains book, why didn't I ask friends and family about autism? I guess it was because I didn't think any of them knew much about autism, not even the sister-in-law who is a nurse. People don't tend to learn about autism until someone close to them is diagnosed with it. Nobody in my family and none of my friends had kids with autism. Except for my friends here in Blogger. And one of those friends recommended the Starving Brains book.

I didn't really get to explain the above two paragraphs during the counseling session. AF mentioned that a friend has suggested he read my blog (this blog). The counselor agreed with that suggestion. So maybe it doesn't matter that I didn't get to explain everything to him in the session. I've always felt more comfortable with writing rather than speaking anyway.

The counselor suggested that AF try to read what I've been reading. AF said that he started to read the Starving Brains book, but it had so many uncertain statements (maybe, probably, most, some) in it, he stopped reading it. The counselor suggested that he try again, but this time with the goal of explaining it to her at our next visit.

The counselor suggested that we try to agree ahead of time on parameters whenever we try something new on JF. We should try to track JF's behaviors (eye contact, cooperation, or whatever we're trying to change) so that we can see better when something is having a positive or negative effect. I thought this was a good idea, but I don't see how we can track JF's life in any more detail than we already are. We both work away from home and the spreadsheet that we're keeping takes enough time out of our lives as it is. In trying to explain this, I was afraid that I was about to cry and stopped talking. The counselor changed the subject. I never did get to explain this.

Maybe I will get a chance to explain at the next visit on Thursday 8/30.

Computer failure

After the counselor visit yesterday, I came home and tried to turn on our computer. Apparently, \Windows\System32\Config\System is missing or corrupt. Great. Just what I need right now!

We bought this computer on 6/1/05. (Wow, it's been over two years already?!) We also paid for a 3-year warranty, which comes with a phone number that we can call for technical assistance. We've used this number at least a few times in the past two years. It's great that I can call a number and someone will help me troubleshoot our computer. But it's always a very frustrating process and it's never quick. I didn't call last night because I don't know how long I'll be on the phone. I'm going to try to call today and I hope it doesn't eat too much of my day. Or week.

In case you're wondering, I'm using my work laptop to write this post. (Shh, don't tell!)

JF's accomplishments

I've been wanting to write about JF's accomplishments for a long time now. I think I should start including a section on his accomplishments in each post. However, it will be harder for me to remember them without access to our spreadsheets on the (currently) defunct computer. I will do the best I can from memory:

  • JF can cut up soft meats (like chicken) with a knife and fork.
  • He can drink from an open cup, but we let him do so only at the dining room table. Everywhere else, we give him a sippy cup.
  • He is a lot neater about eating than he used to be. I still have to change his clothes after some meals, but only a few times a week, rather than after every meal. I can give him cereal without cringing!
  • He is a little more thorough about brushing his teeth. (I still do it for him, too.)
  • He's more reliable about telling us when he has a canker sore. Usually just before I brush his teeth.
  • If I hold his underwear or pants for him, he steps into them and pulls them up. If I hand him a sock, he usually puts it on by himself and might need my help only to turn it around. If I put his shirt over his head, he pulls it down & shoves his arms through. He tries to slip his shoes on by himself, but he is more successful when I loosen the laces for him. He tries to loosen the laces by himself. He tries to tie the laces, crossing and recrossing them until they're completely twined.
  • He can button buttons and snap snaps!
  • He can take off any article of clothing by himself, except for his shirt. (He apparently doesn't have the arm strength and coordination to pull his arm out of his sleeve.)
  • He cooperates better if I sing to him. In this way, he has been learning to sing Amazing Grace, Oh Say Can You See, Oh Beautiful, and Little Boxes.
  • On Thursday evening, after I had started heating vegetables in the microwave as part of dinner, JF said, "Thank you Momma for making dinner." (The "Thank you Momma" part is a script, but I had never before heard him adding what he is thankful for!)
  • Yesterday morning, when JF woke up, I told him Daddy's home. (AF had been in New York visiting his dad.) I told JF to go wake up Daddy. He ran to him and said, "Wake up, Daddy!" AF started tickling him and wrestling with him, as usual. I said to AF, "He missed you." JF said, "I missed you, Daddy." (Notice the pronoun switch! And the appended name!)

Oh, and school starts on Monday, August 27th. We still have no idea whether it will be in Montgomery County or Howard County, but at least we know the date. (It's the same in both counties.)

5 comments:

Mom without a manual said...

Wow! Your posts are always so jam packed with info!

I vote for stress. I have had IBS for years as well. However the doctor always seems to treat it like a "mystery ailment" that just gets worse with stress.

However I have been contemplating testing for celiac as well. I guess I am just too lazy. I am so busy managing the diets and lives of my kids. I don't know if I can handle juggling my own as well...

Did JF take a bath in the epsom salt or just soak his feet? I was confused when you said "foot bath". I know when I was a kid we did the foot soak but I think the full body soak is more conducive to detoxing.
I also worry that you might not see dramatic things right away. BUT you never know!

Did you guys implement the placebo test with this fever? Perhaps your husband gave the probiotics and it helped? Or perhaps it was just a shorter bug? Don't you hate all the uncertainty! Truth is we probably never really know...we just have to try.

I can't imagine your medical issues could be stress related! Autism on top of selling a house, moving, your own topsy turvy health issues, and discourse with AF. Hang in there. As long as you both work at this you will get through it all!

Take care,

MWAM

mjsuperfan said...

You are smart to get counseling. my husband and I talk about it, but then we always say "When would we do it?"

I'm interested to hear how the probiotics work for you. We just started using some powdered stuff. it was sent to us when the temp was above 100, so I wonder if they are still effective!

Hope you're feeling better. You need to get those Dunkin' Donuts!! Please send me a buttercrunch.

WarriorMom said...

Thank you both for your support! :)

About the espom salt: At the time that I had written this post, JF had only soaked his feet in epsom salts dissolved in warm water. We were worried about JF's habit of drinking bathwater.

We have not started the probiotics blind test on JF yet, because it's only for when he's on antibiotics (plus one week after). And the most recent fever never got bad enough to require a trip to the doctor. So it may be a long time before I can report any results of this blind test. I will probably mention each time that JF is on antibiotics, and after the fourth time, if I don't mention results of the blind test, nag me.

I'm not sure whether the probiotics that I'm taking are helping me or not. Part of the problem is that I forget to take them.

Unknown said...

I feel for you. The interventions you mention should not just work for your child but your whole family. If it is disrupting the family, it's not working. I have done them all--I am divorced now and seeing a wonderful man--and I can tell you the most successful intervention you can implement for for a child with autism is to have a supportive relationship with your significant other, including a great love life, whenever you can manage it.

What I have learned: having time to do what you love, sleep, time with your husband, and gym workouts, are MORE important for your child than managing autism interventions. If you have to pick between an intervention and having a great quality of life, please choose yourself. By being "selfish" about your needs and your family's needs, you may be doing your child the most good. The most important thing is that you and your husband are happy--then the children are happy. And happy children learn and progress.

I have seen too many moms burn out to no avail. I do work hard on my child's autism interventions, but only on what I have seen work well for him. I do think OT, ST, & sensory integration techniques work well, and I like elements of Floortime, RDI, and ABA, but on my terms and my child's terms. It has to adapt to our family's needs. The most important intervention for us has been visual helpers and schedules. Which anyone can do.

Think about these biomedical interventions. Are they causing more than a 50% improvement? Can you directly attribute the improvement to that? If not, they're not worth the disruption to your life and the expense and trouble. There is a fine line between resignation and acceptance, and understanding what you can and cannot change. But focusing on your relationship will always pay off.

In my humble opinion, be mindful about these biomedical interventions, even when prescribed by a DAN doctor. I know I sound skeptical. I do not mean to not sound supportive. You are being heroic, but do not make yourself sick over this, please! Please consider running anything you want to try on your child by his neurologist first. There is stuff the Dan drs don't always take into consideration. I try to keep an open mind about it, but there is OTC stuff that can cause harm, such as neuropathy. My son had a severe reaction to one of these treatments, so I know.

Good luck, give yourself a break, and a pat on the back for doing such a great job, and get some sleep! :)

WarriorMom said...

Hi Mary. Thanks for the support!

I had to think about how to respond to your comment. I agree with you that if parents are happy, then the child can be happy, and happy children are more receptive to learning. We're still aiming for that goal. I've even considered abandoning the whole idea of biomedical treatments for JF's autism, just so AF and I can go back to being as happy as we were before. But the biomedical approach seems right to me, and I don't want my son to suffer because I gave up too soon. I will keep your advice in mind, but for now, I will continue to try to negotiate with AF about this.

Also, you ask whether the interventions we're trying are causing more than 50% improvement. The problem with that question is that it assumes JF has only one problem, to be solved with only one inervention. The biomedical supporters often use the example that a child with autism is sitting on many tacks, and if you remove one (or even 50% of them), you won't get a 50% improvement in the child's behavior (and immune system). If we abandon an intervention because we've seen few or no results, we might miss seeing conclusive results with a combination of interventions later on.

I do appreciate your comment, and I will keep all of your advice in mind, but I thought I should respond. Please come again (in spite of my bickering).