Thursday, 29 August 2013
Nate made his triumphant return to ECI today. He has the same driver and aide on the bus as last year, which is a huge comfort to this mama. He did well getting on the bus, except when Mr. Sam made him come back to the front for a picture, that ticked him off but good.
He went on the bus back to the Cisco Center after school, where he stayed until after I got Jack off of his bus at 4pm and we went to pick him up. Now we have done Mr. Jack’s homework (swimmingly) again, and we have OT for both boys at 6pm.
This week has kicked this mama’s ass.
Wednesday, 28 August 2013
Quick update on Mr. Jack’s first week of school. Despite the two calls from school the first day, and the call from the Assistant Principal yesterday, things are going swimmingly. The call yesterday was not about anything Jack had done wrong but rather because he said something that worried her. When he saw her, he told her he had a feeling he would be coming to the principal’s office soon, and be staying there forever. Luckily I recognized these words immediately as a direct quotation from the movie “Alvin and the Chipmunks Meet the Wolfman” and was able to reassure her. She thought that he saw her and thought he was in trouble. Although he did say something a little worrisome about being in trouble and needing extra help. I think he may be actually noticing that he has more help than the other kids around him, so we will need to work on him understanding that it’s not because he did anything wrong or because he is in trouble, but because he just needs some help.
When I spoke with the assistant principal she also had some very encouraging things to say. She observed him for a few minutes and noted that he was way more engaged than the last time she had watched him (last year), was doing his work appropriately, and staying in his seat. I was really hoping that having his own individual desk, rather than the tables they use in the kindergarten setting would help give him a sense of boundaries and of where he is in space, which is something he really struggles with. It seems to be working. So despite the fact that I have had 3 mini-strokes each time the phone rang with the school on caller id, I have already gotten some really positive feedback.
The trend is continuing at home when we do his homework. Which they started the second day of school for first graders- sigh. Jack had swim lessons at 5:30 last night and we didn’t get home until nearly seven. And we had to sit down and do homework. Which he did- without complaint. Not only without complaint, but the number of prompts required to prod him along was significantly decreased. Even tonight, when homework involved the dreaded “cutting with scissors”, I told him to get started cutting out the required words while I worked on something else (figuring we would actually start the work when I was done, as never in the past has he actually followed through). But lo and behold, I turned around and he was half way done!!!
You know, I often grumble that there is so much work involved in raising my special needs kids. Maybe I don’t mention this part often enough. When I see progress- the payoff is HUGE. I feel like Jack is capable of climbing Everest right now. I am starting this school year with a much more hopeful attitude than I was expecting. I have been so worried, but after these few days I am starting to think that the growth that I thought I was seeing these past few months was not my imagination after all. I’ll never know if it’s normal growing up, OT, all the work we do at home, the study drug, or the chanting we do after he goes to bed (kidding!) but frankly I don’t care why it’s happening, I’m just ecstatic.
And tomorrow morning it’s time to put Natey back on the bus. Still not used to putting such a little guy on a big yellow bus…
Tuesday, 27 August 2013
This morning I was sitting upstairs while John was getting dressed for work and we had the news on. All of the sudden we hear the newscaster say something about a report that could potentially “erase autism”. We looked at each other like huh? I proceeded to stay glued to the screen for as long as possible and never heard a word on the Today show about it. So I decided to Google it.
Big mistake. Have you tried googling the following lately?
First of all, it’s depressing. Second of all, wow. The number of theories out there is staggering; the thing that is most obvious is that really no one knows. Thank goodness the idea of it being mom’s fault for being a “refrigerator mom” aka, unaffectionate, inattentive, etc. has been thrown out the window. However, here is what is disturbing me- the number of results I found when I googled autism, pregnancy.
Brain changes that relate to autism begin in the womb
Eating healthy fats during pregnancy may reduce the risk of autism
Antibodies during pregnancy linked to autism
Induced labor linked to raised risk of autism:
Mom’s health during pregnancy correlated to autism risk:
Flu/fever in pregnancy linked with autism risk:
Major stress during pregnancy linked to autism:
Lack of folic acid in pregnancy linked with autism:
Study links autism with antidepressant use during pregnancy:
Air pollution exposure during pregnancy linked to autism:
Are ultrasounds during pregnancy causing autism?
Could the timing between pregnancies raise a child’s risk of autism?
Mom’s pregnancy weight may increase risk of autism:
Thyroid functioning during pregnancy linked to autism:
Valproate used during pregnancy linked to increased autism risk:
Wow is right. I included all of these links lest you thought I was exaggerating. The refrigerator mom theory may be out, but that doesn’t mean that mom’s today don’t feel as though they are blamed for their children’s challenges. We all have an innate sense of guilt about this to begin with, so do autism dads. We all wonder “what did we do wrong?” And as you can see, all we have to do is consult Google to find out that we did everything wrong, right.
Well let’s review my personal history: both times I was pregnant, I was not obese, I did not have diabetes or hypertension, I took folic acid, my thyroid results were fine, I did not take valproate, I did not have extra ultrasounds, my kids were almost 3 years apart, I didn’t have the flu or a fever, although I did have a stomach bug. Neither of my labors were induced, in fact, no Pitocin actually entered my body during either delivery, nor did I even have an epidural with my second labor. I did take an antidepressant, but I switched to the one that is considered “safe” in pregnancy.
That doesn’t change the fact that I still feel guilty about it. Maybe that’s it. Maybe I caused this. This still enters my mind, even though there are significant genetic correlations in both my family and John’s, which we were not even aware of when our boys were born. I can still find a way to blame myself.
If I could reason with journalists and medical agencies who are releasing this “information”, I would say that by making these likely insignificant “correlations” public, they are making many mothers feel like bad parents. Mothers who actually need and deserve the exact opposite. I understand that everyone is searching for answers; I understand that everyone wants to be “the one” who figures this out. But ouch, is this hurtful.
Here is the most credible resource I have found:
Absolutely love this. I never did figure out what the “autism eraser” is. Guess I’ll have to stay tuned. Maybe I should have avoided drinking water?
Monday, 26 August 2013
At this point it was about 2pm, and I figured I had a good two hours before Jack got home to get some more work done. And then the phone rang, and, it was Jack’s school. Any special needs parent will tell you just what kind of effect seeing that number on the caller id can have. And on the first day?? Sure enough, it was the special educator. However the question was not what I was expecting. She said “Mrs.. Fury, Jack is insistent that he is supposed to take a different bus this afternoon than he took this morning, so I just wanted to check with you.” I had just taken a sip of coffee and swear to God I snorted so hard it almost came out my nose. Before she even went into details, I told her “his bus is number 13, not 223, no matter how many times he tells you otherwise.” She started laughing, because of course this is exactly what he was insisting,
Sunday, 25 August 2013
It is so difficult to know what is right. Or if there even is a “right” thing. I am talking in terms of treatments for autism. It is true that for many medical conditions there are multiple modalities of treatment available. But autism is unique in the fact that a “cause” is not yet agreed upon. At all. We have so many theories- genetics, environment, gut imbalances, vaccines….and then a million other ones that I can’t even begin to name.
I remember when I had Jack and was still in the hospital. I felt so conflicted- the lactation consultant wanted me to offer Jack nothing but the breast, the pediatrician told me he needed a pacifier for “non-nutritive sucking”, and the OBGYN that I had at the time told me that I was starving him by not offering a bottle, and that that was why he didn’t stop crying for 24 hours straight (I went to a different doctor for Nate). Between the contradictory ideas and the hormones I could have punched someone in the face. I remember thinking, how can it be that complicated, and how can professionals who do this on a daily basis come in here and offer their very different ideas to a brand new mom? Don’t they know how confusing it is? Eventually we found our way- pacifier free the whole time, no bottle until 4 weeks old, and once my milk came in, things were a bit better.
And I thought THAT was complicated. Navigating the available treatments for autism is like walking through a minefield. We have the behavioral approach, the traditional medical approach, and the “MAPS” or “DAN” approach. And they are night and day different. Do we choose ABA solely? Do we medicate? Do we give supplements and change their diets? Do we dress them in weighted clothing and spin them in swings for sensory input? Who is right? Thus far, I have chosen a combination of all of these, and honestly, I am pretty comfortable with that.
I think I may drive the boys’ practitioners a bit crazy. I know our “DAN’ doctor was like, really, a drug trial- when I told him I had enrolled Jack in his current study. And when I spoke with the study physician from NIH on Friday and asked her about restrictions on other treatments while on study- she said, why, there are no other treatments known to actually help reverse autism, only medicines to help control behaviors. Which is true in traditional medicine- ADHD drugs, SSRI’s, risperdol- it’s all symptom management. I told her he was on B-12, the mitochondrial cocktail soon, the fluconazole, flagyl, etc. She told me that none of this should matter as it’s not affecting his brain chemistry. I get where she’s coming from, she even said that St. John’s Wort would not be ok because it could alter brain serotonin levels. And Nate couldn’t take memantine, the medicine Jack is currently taking- risperdol and stimulants, etc would all be no-no’s. Fortunately, we have not gone down that path with Nate, as there is no need. He does not demonstrate any aggressive or dangerous behaviors at this point, thank God.
So while it annoys me a bit that she didn’t acknowledge that anything we are doing is worth squat, it also works out to our advantage. Because while she doesn’t consider these treatments worthwhile, she also doesn’t see them as a threat.
As you know, I am a nurse. And before I was a nurse I studied biochemistry. Even though this is an extremely emotional process for me, of course, I do approach treatments from a very scientific perspective. If I read about something, and the mechanism of action makes sense to me, and it isn’t potentially harmful, I am willing to look into it further. The bottom line is that the research physician is correct. Most of the interventions that are being used at this point do not have any “double blind”, formal studies pointing to their effectiveness. However, many of them do not have any such studies pointing to the idea that they are useless either. Don’t even get me started on vaccines. Yes, formal research has indicated that vaccines do not “cause” autism. But few to no studies have been completed looking at the current theories of how vaccines AFFECT children who already have or are predisposed to developing, autism. In my opinion, walking around saying vaccines have no effect on autism is just as irresponsible as saying that they cause it.
What many people fail to realize is that autism research is really in its infancy right now. I don’t think that anyone has the answers, but many people have many different theories, and because it is an emotional issue, debates become very heated. We are not at a place where we can point to one treatment, or even cause, and say “Aha!”. Therefore, my choice remains that I will not put all of our treatment eggs in one basket.
Friday, 23 August 2013
I really should be fine. I have been at this for a while right? I am almost matter of fact about all of the interventions I face with the boys, the constant change, and the stressors. Yesterday, even first thing this morning, that’s how I felt.
As I was sitting at work today, I kept commenting to my friend that I just felt weird, like parts of my body were a bit numb and I was just out of sorts. I couldn’t focus, I felt really sleepy. In some ways that’s just a typical Friday, ha. I really didn’t think much of it.
I didn’t mention it, but John was away on a fishing trip Monday through Thursday, so I was on my own with the boys, work, and the revelations surrounding Nate’s health. I don’t mind going solo, in some ways I even enjoy it. But it was busy- I was getting the boys ready for school next week, I took Jack to his first swimming lesson, I arranged for all of the new medications- flagyl, fluconazole, the mitochondrial cocktail, a new supplement for Jack, I tracked down Nathan’s lab results. I spent literally hours on the phone this week, and frankly was feeling pretty damn proud of myself for all I accomplished. On top of all of that, I spent about 30 minutes on the phone with the primary investigator from the NIH study this afternoon nailing her with a million questions. She was very forthcoming, and she was warmer than most, so I count that as a victory. I’ll write more on that later- I have about 5 posts swimming around in this head of mine, but first things first.
Anyway, John helped today- he drove to Baltimore to pick up a special gluten free, flavored version of flagyl because even the doctor said the regular formulation is just too disgusting to expect a child to take. He also drove the boys to and from Cisco Center. So I started to breathe, and relax just a little. That’s when my head started to feel fuzzy. Now I think I was feeling all the overload and shock that I had put aside while John was away. I was starting to actually process all that was going on.
I don’t know quite how to explain what happened next, but here goes. I had planned to go to the grocery store this evening, the cupboards were pretty bare and I needed to pick up the fluconazole. First I went to A.C. Moore for a little retail therapy- I wanted to get some fall decorations. I have been feeling festive. It took me an hour to pick out maybe 3 things- I was wondering around like a zombie, and I felt like one too. I am not usually an indecisive person.
I then moved on to the grocery store. I needed to get regular stuff, but I also wanted to pick up a bunch of different beverage options for Nathan. We have many medicines to get into him right now, and the pharmacist warned me that the Coq10 in the cocktail is not going to dissolve all the way, so he suggested a thicker beverage to disguise it. I got vanilla coconut milk, chocolate almond milk, and vanilla coconut milk yogurt drink. Hopefully my picky boy will tolerate or even like one of these. I made the mistake of trying the unflavored almond milk I use for cooking the other night and he looked at me like I was evil, spat it out and threw his sippy cup down the stairs. Not a ringing endorsement.
I was talking to John last night and we agreed that we need to reinstitute some aspects of “the diet” we had Nathan on a year and a half ago. This is the specific carbohydrate diet, which is meant to starve the yeast in the gut and help prevent it from recurring. So I was standing in the grocery store, thinking about what ingredients we need- I used to bake Nate’s almond bread every other day, fry up almond coated chicken nuggets and cook homemade applesauce for him. I had him on a very very restricted diet. I instituted this diet at what I would have to describe as the “rock bottom” period of our family life that occurred about 6 months after Nathan’s diagnosis. I stood in the organic food aisle and tried to picture the ingredients that I used to have memorized- coconut oil, almond flour, eggs, bananas, honey…..and the tears just started flowing. I couldn’t stop them, I was so embarrassed. It’s like everything that is going on, everything that I need to do just hit me all at once. That and the memories that I associate with the diet combined were just too much for me. I can’t stand that we are facing the same problems over and over again. I can’t stand to think that Nathan’s little body has so many things going on inside that we can’t seem to fix. I don’t want to make that bread again; I don’t want to make the applesauce- even though I know I will. This reaction made me realize something. You can never underestimate the power of your memory, or as our marriage counselor would call it, the amygdala. Those past hurts can creep up on you when you least expect them and completely knock the wind right out of you. And all over something as mundane as honey.
My biggest fear right now? I am afraid to hope for the improvements that could result from all of these interventions. I have gotten my hopes up so many times before only to realize that it wasn’t that a treatment was effective but that Nate was just having a good week- and things went back to baseline soon after that. I want to be that mom, who sees her little boy come back to her so badly, but I have been trying so hard for a long time (or at least it feels like a long time). I don’t want to set myself up for another disappointment.
Eventually I pulled myself together, finished the shopping and came home. Right now, I feel exhausted and overwhelmed. In the morning I will get up and start to make out a new medication schedule, start testing out all of the different beverages and pray that one works. I will bite the bullet and make the almond bread, and the chicken. Tonight, I am eating ice cream and watching a movie, because that’s about all that I’m capable of.
Wow, it’s been an eventful few days on the Nathan-front. In a good way.
I spoke with the study coordinator at NIH yesterday and it IS a drug study. The medication involved is Aricept.
NIH did an initial study on this medication. The purpose of the study was to look at abnormal sleep patterns in children with autism, and then determine if the addition of Aricept can normalize sleep. Children with autism are known to have issues with sleep, but even those who don’t wake up all night (ahem, Jack) often have abnormalities- significantly decreased periods of REM sleep. REM sleep is thought to be crucial to normal brain development, and lack of it is thought to lead to many of the behaviors associated with autism. So of course the hope is that if these cycles are normalized, brain development can occur and thus the symptoms will decrease. This first study was TINY, but there have been other studies done at other institutions.
Here is the study we are invited to join (or at least be screened for):
I am very interested in this. Jack is taking memantine on study with Children’s National Medical Center. Both of these medications are labeled for Alzheimer’s currently, and researchers have even started to study the effects of these two medications when given together (for alzheimer’s). Initial studies are suggestive of a synergistic effect. Meaning that when given together, the effect of each individual medication is increased. This all sounds great, but I am concerned and still have many questions. I have requested to speak with the physician conducting the study and am waiting for a call back. My main concern is that this study, unlike the one Jack is participating in, has a placebo group. And the study period is long- 18 months. If we are unable to add other medications, or if we are told particular interventions are not allowed during this period, it would make me think twice about joining this study. 18 months of development in a young child with autism is an eternity and things can change so much in this period of time. I am not willing to potentially sacrifice this time and have him receive no drug. The study also includes 3 2-night sleep studies, which would mean hospital stays for me and Natey. Not a huge deal, but I want to be able to view the results. I hate it when tests are conducted for “research purposes” and the parents are never told what was found. For instance, when we did the SEED study, they took Nate’s, John’s and my blood to study for genetic abnormalities. We are not privy to these results which really just annoys the crap out of me. If I am putting my child through these potentially uncomfortable procedures, I want to know the outcome. Nate would have to demonstrate an abnormal REM sleep pattern in order to qualify for the study. My first inclination was that he would not be the child of mine to study regarding this issue, but according to the research assistant, the fact that he appears to sleep well says nothing about his REM sleep. So we shall see.
I finally obtained the results of Nate’s urine amino acid testing yesterday, and….
He has SEVERE yeast issues and also has clostridia (a bacterial infection in the gut common in children with autism). This goes back to the whole theory of autistic children’s symptoms appearing or worsening after repeated rounds of antibiotics in infancy. The normal gut flora is destroyed (and these kiddos have decreased ability to tolerate or compensate for this) and thus opportunistic infections occur. Yeast is known to increase autistic symptoms. A little more information on this:
If you read the information in that link you will see that Nate demonstrates most of the behaviors associated with yeast. I have suspected or honestly, intuitively known that this is an issue for a long time. The doctor has even empirically treated him for yeast in the past, clearly to no avail. So what do we do about this? Well, we double his probiotic and we start fluconazole. Again. I have a feeling we will be on several courses of this. It’s a stronger medication than nystatin. His symptoms have temporarily improved in the past when he was on nystatin, but the minute we stop we are right back where we started. I need to work on cutting sugar from Nate’s diet- which is extremely difficult in a child with such a picky palate. We also will be starting Nate on flagyl for the clostridia.
As if this wasn’t enough, there are several metabolites out of whack in Nate’s testing that could indicate some other abnormalities; further testing is needed, but interestingly he has an extremely low level of CoQ10, which is something contained in the mitochondrial cocktail we are about to start. This level and several other data points are indicative of some type of metabolic problem or mitochondrial disorder. I need to get further information from his doctor on this, because other than the infection information, I am getting this data straight from his lab results, which his md only received when I faxed them to him yesterday. He hasn’t had a chance to examine all the results or explain them to me.
Phew, that was a lot of information thrown out there all at once. What is the bottom line? To me, this all means one thing- HOPE. We have identified some real issues, (albeit all at once and in an overwhelming fashion) issues that can be addressed. And address them we will. Please say some extra prayers for my sweet boy as we embark on some of these new interventions. And say some prayers for his mama that she will make a wise decision when it comes to this new study opportunity.
Wednesday, 21 August 2013
God, that is. Because some strange things have been happening this afternoon. And by strange, I mean good, which feels strange after my recent frustrations. About 30 minutes after I posted this morning, the pharmacy called to let me know that everything with the mitochondrial cocktail is set, they are formulating it and will send the 5 day supply shortly. Score one for us!
Then, about 30 minutes after that, the NIH called. I kid you not. This is the first time they have called in the 2 years since I put Nate on the study list. I called back and left a message, but unfortunately have not spoken with a person yet. All I know is that she is with the neuroscience department. Who knows if we’d even be interested. As I stated in a previous post, I am no longer drawn to studies that provide researchers with general information about autism symptoms and progression/regression/remission. If I had all the time in the world it would be another story, but clearly, I don’t. I also don’t think it’s fair to Nate, or our family, to subject him to the same assessments over and over again, when they always yield the same results. It’s depressing, it’s time consuming, and it certainly doesn’t benefit him in any way.
My requirements for study participation at this point have changed. I will not enroll either of the boys in a study unless a) it involves pharmacological intervention that looks promising or b) it yields some new, useful information for my son. An EEG I would do, an MRI I would do. These procedures might explain something, and that, to me, is worth it. Basically, even though it sounds a little selfish, there has to be something in it for us.
The timing of this call just cracked me up. It’s likely that nothing will come of this, and even if it does I doubt it will yield “answered prayers.” It’s nice to think that God is looking out for my son. (S)he has given Nate quite a heavy load to carry, and he could use a break. And mommy and daddy could too.
I really am struggling. I feel kind of bad, because I have recently become aware that there are quite a few local “autism moms” who read my blog and find it inspirational. I don’t feel like an inspiration right now, I feel useless. I feel like I’m doing it all wrong. I feel discouraged. I feel exhausted.
This is all about my fear for Nathan. My limitations when it comes to helping him. It’s about the fact that at age 3 and a half he is entering his third year of formal schooling. It’s the memory of that first teacher telling me that I wouldn’t recognize Nathan in 6 months, that his progress would astound me. Here I sit. Still waiting. I sat down and really read his IEP update from the extended school year last night. He is meeting only one of 6 goals- receptive language, per the speech pathologist (who ironically is the daughter in law of Jack’s kindergarten teacher- the teacher emailed me to tell me how cute her DIL thought Natey was). The biggest issue is consistency. Even if he does something fabulous, getting him to repeat it is impossible. I know this. There are days that the words just flow, and then nothing, sometimes for weeks. I know what it is. It’s the “noise” as I call it. He can’t focus; the need for stimulation is so intense, especially tactile and visual. He constantly wants us to squeeze him- his arms his legs- he will take your hand and place it there. If you do it “wrong” he moves your hand back, as in, try again buster. He waves things in front of his face at every opportunity. He figured out that our mail is kept on a washstand by the front entrance of the house and has taken to shredding it so that he can dangle the paper in front of his face. He has a “Woody” doll that has been getting a lot of attention- it’s because its arms and legs sway when he puts it in front of his face. He goes after toilet paper, paper towels, napkins, leaves, grass, anything that he can dangle in front of his face. If none of this is available (and God knows I try to keep it away from him) he now uses his fingers. Several people have said “oh look he learned to wave”. I want to smack them and say, “No moron, it’s stimming”. Once again- grace. I smile and nod. If that’s what they need to believe then so be it- I don’t have that luxury.
If we could calm the stimming he could make progress I just know it. That’s why I have tried the diets, the supplements. Why I haven’t given up, why I keep adding them. For the past two years. To be honest, today I feel like giving up. I gave him nothing this morning for the first time in years, and I know it won’t matter. We STILL don’t have the mitochondrial cocktail, as Nate’s doctor needs to call it in to the new compounding pharmacy and hasn’t yet done so. I spent 20 minutes on the phone with him again this morning- what was I doing? Reading him what is in the cocktail he wants Nate to have. Because he didn’t know/remember. I’m ready to throw my hands up and say never mind; ready to give in.
But something made me make the call to his doctor anyway. In the midst of all of the frustration and hopelessness, I found the motivation to call him again, and give him the list yet again. And I will give the supplements to Nate tonight; he missed one dose, big deal. I will keep on going. Even though I am ready to quit and spending more time watching Nate with sadness, feeling more grief, than ever before. My actions are another reminder to me of the strength of a mother’s love for her child- all of this work is just an expression of that love- and confirmation that love is indeed a verb.
Monday, 19 August 2013
While much of this post is quite funny, it makes me a bit sad to write it. I’ll explain why at the end.
On Saturday, Jack and I went to babysit for a friend. Her husband is in the military and being deployed soon, and with no family locally, they have been kind of stuck when it comes to spending a day together. They were able to go to Six Flags for the day, just the grownups, and I was more than happy to help them. They have 3 kiddos, a 4yo daughter, a 3yo son, who was in Nate’s ABA class with him last year and a 15 month old. Hey, I was a nanny for years, I even lived in for a while, I can take ‘em!
I learned several things on Saturday. First of all, I’m not nearly as nice as I used to be. I approach caring for children in a much more “parental” way than when I was a nanny, and I guess that makes sense, because, well, I am a parent now. The day was actually kind of tough for me, the kids were great, but I’m not used to staying in one place for long, the kids and I are always on the go on the weekends and so I went a bit stir crazy in this situation.
I also learned quite a bit by watching Jack and their daughter Sophie interact. It was very challenging for Jack to be there. First of all, he had several of his new planes with him, and was told that he had to share, or the planes had to stay in the car. He did a great job with this over all, but I could see on his face that he was struggling.