I think this family is pretty amazing--not to mention their children are so cute. They encourage me to keep going forward. I feel horrible that the mom had a breakdown at one point from all the stress. My heart goes out to her. I will keep them in my prayers :)
Saturday, July 31, 2010
Friday, July 16, 2010
ABA and Biomed update
Just wanted to post a quick update on how Isaac's treatment was going. He is doing awesome with ABA. He quickly picks up patterns and is VERY cooperative with them. They are about to update his program for the second time after only a couple of months. He is always very chatty after therapy and more in tune with what I'm saying. I've noticed that his speech comprehension has picked up, and is especially in tune after a therapy session. Makes me want to do more therapy!!!
We are doing yeast treatment to heal up Isaac's bowels. He is on his 4th day of diflucan, so we are still waiting to see what happens. The doctor said this can make him very sick because as the yeast dies off the toxins are reabsorbed into his body. I haven't noticed anything drastic happen yet. Since I'm looking for something, I have noticed that his sensory issues may be a little more extreme. I think he has seemed a little more sensitive to noise lately. And, he seems just a little tired maybe too. But, otherwise he seems to be doing well. But, I'm wondering if it will take a while before the die-off sickness starts. I pray not. I've hesitated on giving him the medication because I've been afraid I couldn't handle it with all the stress going on right now. David was switched to a new route which was ANOTHER pay cut for us, and he has been really negative lately. We are on the mad rush to look for a job. I've been applying online which has kept me up at night, and I've run into some interesting positions. We are looking for David as well. So, anyone reading this, please pray for us!!!
And, we would like to be able to find a church that is uplifting and be able to attend a service. Please pray for that as well :)
Sunday, July 4, 2010
Decisions
My husband and I have a lot of decisions to make. It doesn't help that my husband is not a planner. He "flies by the seat of his pants" as many say. But, unfortunately, everything we do takes some planning and my husband relies on me for that. And, I don't have the confidence to make big decisions. So, we often get caught in an odd position. But, we are learning.
We have a lot of financial decisions to make, especially when it comes to ABA. There is no doubt that the program is excellent. There is no doubt that Isaac is responding well to it, and there is no doubt that he needs it. So, the question is, how are we going to pay for it and how are we going to maintain it?
My husband took a pay cut to come here, and he has recently been transferred to a new route which will be another small pay cut (we were hoping for the opposite.) We have money from the sale of our house, but with the cost of therapy, special products, and medical treatments, we will run out too quickly. I quess I've had some fantasy that family members or church family would see our situaiton and come to our aid. But, no doubt, WE ARE ON OUR OWN.
We do have options, and the only way I can see that we are going to SURVIVE this is to better our financial situation. After all, this problem is not going to go away. I so wish it would, and I believe in miracles. But, there are a lot of people out there that love God and are going through the same thing.
The question is, how do we provide what our child needs? Someone has to be available during day time hours to run back and forth to therapies and doctor's visits. I think only another aut-mom can understand the demands of this. If I find a full-time job, David would have to quit and take on a part-time job. He could finish some schooling. This seems like the easiest option, but NOTHING has opened up. And, I do have concerns that David won't be able to manage what I'm doing. He is not as good at reading Isaac's moods and keeping an eye on him. Isaac bolts really quickly, and he can be lost in traffic in a matter of seconds. I've been around Isaac so long and observed him so much that I believe that I often know what he is thinking. Also, David seems to panic in many situations (for instance, if one of the kids throws up in the car), and gets everyone really stressed out. I have to tell him to take a deep breath sometimes, and tell him that it is going to be okay. I'm a much more even-kill temperament.
I've also considered going to graduate school and taking out all the loans available. But, I'm just not sure I could swing it. I'm afraid that I won't be able to give my family the quality they deserve, and in the end, this might be counter-productive. I already feel like a shell of a woman with the bags under my eyes and spaced-out mind from lack of sleep and exhaustion. No doubt, I don't take care of myself as I need to. I only survive by a daily pot of coffee, and my diet is whatever I can cram in my mouth on the fly (usually left over toddler food). My husband and I don't get dates, free time, cuddle time--we can't have hobbies--we can't have friends like we want to. BUT, we enjoy our children together. We learn to love watching Micky Mouse Clubhouse for the 500th time. We marvel at the ability to quote every line from the show. And, all in all, I believe we love each other more and even feel proud of the fact that we've managed to survive as a lower middle-class family dealing with AUTISM.
I love my family, and I want the best for them. I just need God's help on these decisions...
Friday, June 4, 2010
All In a Good Night's Sleep!
Isaac once hated these stairs. Now, we can't keep him off them!
I almost posted a couple of weeks ago (a pretty depressing post), but I felt like I just needed to give it some more time. I thought I was going to go crazy. Apparently, the stress of the move hit Isaac suddenly and in a horrible way. I've never seen the type of behaviors he was having. Most puzzling was his manic behavior. He was so hyped out that if I made a funny face, he would laugh loudly and hysterically until he was hyperventilating. Tears would stream down his cheeks from laughter, and then if he heard a loud noise he would freak out and start hitting his hands together. It was so unnerving and hard for me,as a mom, to watch. He really seemed lost to me. It felt like we were living with a completely different person. I had a couple of breakdowns myself at night after everyone was in bed. It's hard on the nerves to have a child that is hysteria constantly. And, I still have fear that he will have another regressive period and lose skills, and I always fear that my Isaac won't come back. Oddly enough, if I sat down with Isaac he would make great eye contact and show me all the parts of the body on a doll (but if I said eyebrow, he would go into laughing hysteria). It was all sooooo strange.
We were having horrible nights of sleep--up 5 or 6 times with Isaac, and then Isaac would sleep long and hard during his afternoon nap. I'm not sure if I mentioned this in an earlier post or not, but Isaac was having a lot of issues with the vaulted ceilings in his room which caused him not to be able to relax in his room for sleeping.
I started to realize that we had a great time in the mornings, and then in the afternoon he would be having all sorts of sensory problems and acting crazy. Judging from his past experiences and this odd switch in behavior, I came to the conclusion that Isaac's disrupted sleep pattern was contributing to the problem, making it hard for him to adjust to all the new sensory information. I guess it's kind of like riding a fast roller coaster after not sleeping for three days (the thought makes me kind of nauseated).
A few friends have recommended that we use an natural product called melatonin to help with Isaac's sleep problems. I ran it by my mom (a nurse) and she seemed to think it would be safe to give to him. So, we decided to buy some melatonin from a pharmacy and give it to him as a sleep aid at night. I felt a little uneasy about giving it to him at first because I was worried about what other people would think. But, it has been a miracle for us. Isaac is back to waking up once a night (his normal pattern). And, after a couple of nights of good sleep, he has calmed down so much. My Isaac is back, and I welcome him with open arms. He has been so affectionate to me lately, and I've been eating it up so much. He is back to my happy child, giggling and trying to be cute to get his way!!! I love him so much, and I'm thankful for my beautiful son!
Now, I just need to get caught up on sleep a little myself! LOL!
Saturday, May 22, 2010
Dr. Sears Response to New GFCF Study
Allergen free Diet Can, and Does, Help Many Children with Autism
I've seen over 500 children with autism in my pediatric practice over the past 10 years, and in my experience the majority have benefited from the diet. Children with chronic GI symptoms, such as loose stools or constipation, seem to benefit the most, which would make sense. But I've seen some children without any GI symptoms improve on the diet.
So when I see a study come out that conflicts with my extensive clinical experience, I take a very close look at the study before I decide whether or not it should influence my medical decision-making. This new study, published by Dr Susan Hyman on May 19, 2010 from the University of Rochester definitely does not change my opinion of the possible effectiveness of the diet for children with autism. First, this was a tiny study of 14 children. The medical community rarely considers such a small study clinically useful. A much larger study would have more weight. Second, the study didn't allow for enough time to pass for the diet to create enough improvement to be clinically significant. In my experience, parents often see results from casein elimination within a few weeks. But gluten often takes longer, up to several months before benefits can be seen. Third, gluten and casein aren't the only allergens that children have to eliminate. In my practice, I eliminate all allergic foods at the same time to allow for maximum healing. A very common allergen on the diet is soy. It is possible that some children in this study had other foods that needed to be eliminated and weren't. Finally, two children in the study were excluded because they tested extremely allergic to gluten (positive TTG test). Such kids would be virtually guaranteed to benefit from the diet. It is likely the researchers wanted to determine if the diet would help the general population of kids with autism and not just those with severe gluten allergy. But including those two children in the study could have resulted in an outcome more in favor of the diet.
The mainstream medical community looks for treatments with a very high success rate. For example, if an antibiotic only improves half of kids with an ear infection, such an antibiotic wouldn't be approved. A drug or treatment needs to work very well in most patients in order for it to be adopted. Autism is unique, however, in that many treatments work extremely well, but not always in a high percentage of children. Does that mean we shouldn't offer such treatments? Not at all. If I have a particular treatment that would help even 20% of children with autism, I would offer it to all children. Those that do benefit can be blessed by improvement they wouldn't otherwise have. When it comes to the diet, my success rates are much higher than 20%. I would say that at least 75% of parents report positive results, and many of those report amazing results.
I'm not going to let a very small study such as this one prevent me from offering the hope of healing to parents, and I hope that parents everywhere consider trying the GFCF diet for their child.
Additional studies that are positive for Autism and dietary invention can be found at
http://gfcf-diet.talkaboutcuringautism.org/dietary-research-in-asd.htm
Sincerely
Dr Bob Sears - Sears Pediatrics
And TACA Physician Advisory Board
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