I am so glad that I didn’t blog after we read the porphyrins results, because I read them completely WRONG. While Riley does have some chemicals/metals present in his system, none are at a terribly high level. The one marker that is a little on the high end (“average” range is 100-200 and he’s at 188) was mercury. The fact that mercury was even present was initially a little upsetting to me. Okay, a lot upsetting. I was very conscious of the risks of thimerosal in vaccines. I was very careful about which he was given. So, seeing mercury toxicity on a piece of paper meant, to me, that he likely got some of it from my body. Which is a little puzzling, considering I do not have amalgam fillings. But I did get vaccines containing mercury, this world is full of it. I could sit here and try to figure it all out, but the important thing is that we know it's there, and we can move forward.
Knowing this makes I feel a little better about our current treatment plan. Keep on keeping on. I even talked to Dr Van Dyke a bit about me being tested and planning for future children. That’s back burner, but I’m feeling a little more positive about that being a possibility.
The big thing about mercury is that if you have a lot of other things present, it can almost magnify the effects of the mercury. So the more toxins present, the more pronounced the effects. At least that’s the theory I am running with. Taking out the toxins/opiates in food, working on gut issues, methylation therapy, supplementing with vitamins, etc is still a good plan. At this point I don’t feel chelation is a path we’ll go on. His mercury levels aren’t that high. I really feel like if we stay with what we’re doing, it will just gradually get better, as it has been. His body is working on healing so many things right now. If things haven't shown much improvement in 6 months to a year, perhaps we'll revisit chelation/ALA.
One of the tests did show a bit of virosis, which I’m still trying to wrap my head around. There was a graph and he was right around the center. So, while there are issues, they aren’t horrible. Dr Van Dyke mentioned this may have been from the mumps vaccine Riley received. He received a single vial dose, we did not choose to do the MMR. In 1990 the dose of the mumps was raised to a quadruple dose (as written about on Age of Autism recently) He also got a few other shots on the same day, which I’ve read is counter indicated and hasn’t been studied.
Incidentally, the big mess of eczema and regression started happening around 15-16 months. Right after Riley received the Mumps vaccine. Just after being on antibiotics. Last vaccine he received. I’ve always had a gut instinct that something happened after that 15 month check up. I don’t doubt that things were going on with him prior to that, but I believe that’s when it was just too much for his little body.
The other thing we tested for was oxidative stress and DNA/RNA damage. He does show fairly high oxidative stress, and has some significant RNA damage. What I understood from this is that the mitochondria in his cells are not functioning property because some parts of the RNA have broken off the chain. We plan to work on this through antioxidant supplementaion, and continuing to lessen his burden of toxins. We also did a metabolic panel just before we started HBOT that indicated many mitochondrial and metabolic issues, and the need for B vitamins, among other things. I asked him to fill out a script today for transdermal (cream) B complex. We’re getting it without folinic at this point, as we haven’t yet tried folinic acid (a better absorbed type of folic acid) because folinic does cause hyperactivity in some kids. Once we know he can tolerate it, we’ll have it added in the B complex cream.
Another thing we discussed was possibly testing for strep titers with our family Dr, if Riley gets back into a repetitive behavior pattern (turning on and off water, opening and closing, etc) I don't feel that the PANDAS diagnosis fits Riley, but you never know. We also need to repeat some of the general health tests we did before Christmas (calcium was low and a liver enzyme was high) and get a Vitamin D OH25 test complete. I'm dreading that, the last blood draw was pretty traumatic for Riley.
Here's our updated plan: (for my own future reference)
Supplements
Cod Liver oil
Digestive Enzymes
Probiotic
S. Boulardii (probiotic)
MB12 shots every other day
New supplements:
B complex transdermal (not sure how often)
Folinic acid
Antioxidant supplement
Vitamin D3 (once we get the test results back and know what dosage to give)
Diet
Gluten, casein free
Soy and corn free (mostly, we aren’t as strict with corn)
Limiting “yeast feeding” food and drink
Therapy
1 hr per week OT (school district, in home)
2 hours per week early childhood teacher (school district, in home)
30 min per week speech (school district, in home)
3 hours per week behavioral therapy (out of pocket)
3-6 hours per week with our babysitter (who is a behavioral therapist and unofficially does some therapy)
(We're still working on getting on the 2 year waiting list for full time therapy)
I have to say that I came out of this appointment with a renewed sense of recovery being entirely possible. Dr Van Dyke was incredibly positive today. I was so grateful for that. I expected this appointment to be full of bad news and gloom, and instead I came out of it feeling like we are on the right path. Please, oh please, remind me of this when we hit another tough spot. We've come so, so far. I am so amazed at Riley's body and it's ability to heal.
To all of the family, friends, and fellow ASD parents who read this: thank you all so much for your loving support. It means so much to our family. We couldn't do any of this without it.
Monday, January 19, 2009
Saturday, January 17, 2009
Progress tidbits.
I keep thinking I'm not posting enough good stuff anymore. It's definitely still happening, I just need to remember to post about it.
Phrases/concepts:
-He will look out the window and tell me about the weather. I will sometimes have to ask him , "Riley, is it sunny today?" and he'll answer (sometimes incorrectly, most of the time correctly) yes or no. He'll say, "No, it's cloudy." or "Yes, it's sunny today." Today he looked out the window and said, "It's snowing today."
-Riley said, "Jack gonna go home. Riley stay inside." when we dropped him off to spend time with Grandpa today. He understood he was going to stay there and we were leaving.
-He is much more aware of our conversations. Today I was talking with my husband about getting a hair cut, and Riley caught on. He said "No, not gonna get a hair cut." I explained that mama was getting a hair cut. He repeated it a few times, "Riley not gonna get a hair cut. No. Mama get a hair cut."
-If I tell him the night before that a certain therapist is coming the next day, or we're going to see Grandma, or go somewhere, he remembers. He will tell me, "Tara come today."
Play:
-Pretend play has come so far. He is now expanding on play schemes... he made an "Ernie" puppet and an "Elmo" puppet talk to each other this last week. He said something like "Hi Ernie!" He also cares for a play babydoll, feeding her, holding her, kissing her, etc.
-After an initial panic reaction to his presence, he played next to a peer last week. He even interacted with him! (Erik, the other 3 yo said "What is that?" to Riley. To which he replied "It's a washer and dryer.") We hope to have more playdates set up during Riley's therapy time. This went very well.
Other stuff:
-Potty. He's going potty! I made him a "sticker chart" which is nothing more than 24 hand-drawn squares on a piece of construction paper. I hang it in the bathroom. Each time he goes pee on the potty, he dumps the pee into the toliet, flushes, pulls up his training pants, his pants, washes his hands, dries them (all with help) and then chooses a sticker to put up. He does well with this whole process! It's been a huge help to have a reward, I don't know why I didn't think about it sooner. He's using the potty about 6 times per day now. Just two months ago he wasn't using the potty at all. And on that note, being able to pull his pants up and down, and follow that many steps in a process? Just amazing to me.
-Pushing Jack (our 19 mo old) over has decreased tremendously. He used to do this several times an hour some days. He hasn't done it more than once or twice in this past week.
As I mentioned in the last post, we'll see our DAN Dr on Monday. I am getting things together and want to make the most out of that visit... it will be a bit before we go back to see him again.
Phrases/concepts:
-He will look out the window and tell me about the weather. I will sometimes have to ask him , "Riley, is it sunny today?" and he'll answer (sometimes incorrectly, most of the time correctly) yes or no. He'll say, "No, it's cloudy." or "Yes, it's sunny today." Today he looked out the window and said, "It's snowing today."
-Riley said, "Jack gonna go home. Riley stay inside." when we dropped him off to spend time with Grandpa today. He understood he was going to stay there and we were leaving.
-He is much more aware of our conversations. Today I was talking with my husband about getting a hair cut, and Riley caught on. He said "No, not gonna get a hair cut." I explained that mama was getting a hair cut. He repeated it a few times, "Riley not gonna get a hair cut. No. Mama get a hair cut."
-If I tell him the night before that a certain therapist is coming the next day, or we're going to see Grandma, or go somewhere, he remembers. He will tell me, "Tara come today."
Play:
-Pretend play has come so far. He is now expanding on play schemes... he made an "Ernie" puppet and an "Elmo" puppet talk to each other this last week. He said something like "Hi Ernie!" He also cares for a play babydoll, feeding her, holding her, kissing her, etc.
-After an initial panic reaction to his presence, he played next to a peer last week. He even interacted with him! (Erik, the other 3 yo said "What is that?" to Riley. To which he replied "It's a washer and dryer.") We hope to have more playdates set up during Riley's therapy time. This went very well.
Other stuff:
-Potty. He's going potty! I made him a "sticker chart" which is nothing more than 24 hand-drawn squares on a piece of construction paper. I hang it in the bathroom. Each time he goes pee on the potty, he dumps the pee into the toliet, flushes, pulls up his training pants, his pants, washes his hands, dries them (all with help) and then chooses a sticker to put up. He does well with this whole process! It's been a huge help to have a reward, I don't know why I didn't think about it sooner. He's using the potty about 6 times per day now. Just two months ago he wasn't using the potty at all. And on that note, being able to pull his pants up and down, and follow that many steps in a process? Just amazing to me.
-Pushing Jack (our 19 mo old) over has decreased tremendously. He used to do this several times an hour some days. He hasn't done it more than once or twice in this past week.
As I mentioned in the last post, we'll see our DAN Dr on Monday. I am getting things together and want to make the most out of that visit... it will be a bit before we go back to see him again.
Thursday, January 15, 2009
News from France
Porphyrins (heavy metals) test results are in from France. Before I get ahead of myself and post a big rambly vent, I'm taking a deep breath. I'm meeting with our DAN Dr on Monday morning to go over all of it and possibly put together a game plan. I'm very glad we decided to do that testing, but it hit me (us) just as I expected it to. It's a lot to take in. I'll post after the DAN appt.
On a quick positive note, yesterday Riley had the best session with the early childhood teacher I've seen him have thus far. He still did quite a bit of hand flapping, but he carried on conversations with her, followed directions, and paid attention. It was refreshing! Go Riley!
On a quick positive note, yesterday Riley had the best session with the early childhood teacher I've seen him have thus far. He still did quite a bit of hand flapping, but he carried on conversations with her, followed directions, and paid attention. It was refreshing! Go Riley!
Monday, January 12, 2009
Yeast has left the colon
For now. Riley is worlds different after just a week of S. boulardii. I'm a believer in that stuff. We'll keep him on it a while, I think.
Not much time to update right now. Things are going okay.
Not much time to update right now. Things are going okay.
Wednesday, January 7, 2009
Breathing a little easier today. Got a break this morning, coffee with a fellow special needs mama, and had a nice session with our teacher and my friend's son.
Three yellow loose stool diapers today. And, rashes on his face, hands, belly and bottom. So, I think it's safe to say we're seeing some die off from the S. Boullardi. I think Riley is feeling a little yucky, but we're giving him a low dose, and hopefully it will be short lived.
He went to sleep tonight without a bottle for the first time in a years. He bit the tip off the nipple and we don't have any more. I'm not about to buy MORE of those damn $15 Born Free BPA free nipples. I figure now is as good a time as any to attempt to wean him off. He was very accepting, I even had him throw the nipple in the garbage. I let him fall asleep on the couch, he simply rolled over, looked up and said "Bottle's broken." and fell asleep. Fingers crossed. That would be too easy, wouldn't it? For a kid that nursed almost two years and stopped on his own, I would have never thought he'd still be on the bottle at 40 months.
Three yellow loose stool diapers today. And, rashes on his face, hands, belly and bottom. So, I think it's safe to say we're seeing some die off from the S. Boullardi. I think Riley is feeling a little yucky, but we're giving him a low dose, and hopefully it will be short lived.
He went to sleep tonight without a bottle for the first time in a years. He bit the tip off the nipple and we don't have any more. I'm not about to buy MORE of those damn $15 Born Free BPA free nipples. I figure now is as good a time as any to attempt to wean him off. He was very accepting, I even had him throw the nipple in the garbage. I let him fall asleep on the couch, he simply rolled over, looked up and said "Bottle's broken." and fell asleep. Fingers crossed. That would be too easy, wouldn't it? For a kid that nursed almost two years and stopped on his own, I would have never thought he'd still be on the bottle at 40 months.
Tuesday, January 6, 2009
Two steps back.
I got a call today with the woman I *think* is our case worker through the family resource agency. We finally did send in all of the paperwork to apply for the "autism waiver" (that covers long term ABA type intensive therapy, as well as disability, respite care, etc) about a month ago. Honestly it took me a while to come to terms with the paperwork. It was just so tedious, and part of me kept thinking "No, he's not going to need this. Why bother?" I am really kicking myself now, because we waited 4 months before we sent it. It took a month before I finally heard anything.
Today, the case worker told me that we'd need to have another evaluation with Dr. W, the pediatric neuropsychologist that we saw last May and July. I was so confused by this. Why did he need another evaluation? Well, it turns out that when we saw him initially, he did not do a cut and dried testing on Riley. I really had no idea. He definitely tested him, but I guess the way he did it was not formal enough for the state's paperwork. I was frustrated with the woman I was talking to, who wasn't terribly kind to me. I then called the clinic where Dr. W works and spoke to one of the people in his office. And then left him a voicemail. Sure enough, he left me a voicemail in return stating we'd need to do another one, that it's all about funding, red tape, etc. He'd need to do a very thorough evaluation, dictation, and make a formal diagnosis. At least our insurance will cover a majority of that visit.
So we go back March 2 for that. I'm frustrated, this puts us at least 2-3 months further out. In a state where it takes 2+ years to get services, if you even get them, I am just hurting over this. I felt like we put all the ducks in a row, but apparently they weren't.
I honestly could care less about a diagnosis, but I will play the game. Diagnosis means nothing to me. More and more autism is just a word to me... it's just a catch all phrase for so many illnesses. What matters to me is that he's getting better.
Our family's financial state right now is, quite frankly, pretty dire. Since our grocery bills have increased so much (about $225 a week.) due to Riley's diet, we are struggling pretty bad. Every month we do somehow make it, with me taking clients as much as possible, DH doing cash work, family and friends sending us the occasional check in the mail (Godsend.) We do have help with some of the biomedical/supplements, and we're going to apply for more grants. I plan to work on that this weekend. It's really hard for me to imagine struggling for more than two years to pay for all of this. It just won't work.
I think the hardest part of all of that is that we're really not doing a ton of therapy. At this point, it's mainly biomedical, what little services we get through the school's therapists/teachers coming (I'm happy with OT but the rest...eh) and now next week we'll have a little behavioral therapy. That is coming thanks to my father in law, who gave us a very lovely Christmas gift in an envelope. We also have our babysitter, who I've mentioned works for an autism therapy program. She is great with both kids. It's just not enough... I wish that we could afford some form of intensive behavioral therapy. It is impossible, even if we wanted to. A year of that therapy is about the same as my husband's salary.
This all came crashing in on me this afternoon. After a few very rough days, when DH got home I just went into the shower and wept. It's not about the money, or the hoops to jump through, or any of that. This pain, watching my baby struggle, is the most real thing I've ever felt. It's almost alive to me. The pain is something completely separate from my body. It is horrible. I'm allowing myself to feel that pain but at the same time, trying not to get caught up in thinking in a negative way. I find myself doing that anytime Riley goes through a tough spot, like he is now.
The S. Boullardi seems to be doing it's job, which is good news. While changing Riley's pull ups this morning, I saw two very obvious yeast die off diapers. He never has that type of poop-- anything remotely runny. This was yellow, runny, seedy. Definitely yeast. He got about a capsule and a half tonight, I think we'll see how that goes and go up to two soon. We're going to start really limiting yeast-feeding food as well. There is no doubt in my mind that's what's going on with him lately. He's just been going through a really rough time behaviorally.
Tomorrow afternoon our teacher from the school district comes, and a friend is bringing her son for a "playdate" of sorts. We'll see how that goes... I haven't seen Riley around other three year olds much. It's something worth working on.
Today, the case worker told me that we'd need to have another evaluation with Dr. W, the pediatric neuropsychologist that we saw last May and July. I was so confused by this. Why did he need another evaluation? Well, it turns out that when we saw him initially, he did not do a cut and dried testing on Riley. I really had no idea. He definitely tested him, but I guess the way he did it was not formal enough for the state's paperwork. I was frustrated with the woman I was talking to, who wasn't terribly kind to me. I then called the clinic where Dr. W works and spoke to one of the people in his office. And then left him a voicemail. Sure enough, he left me a voicemail in return stating we'd need to do another one, that it's all about funding, red tape, etc. He'd need to do a very thorough evaluation, dictation, and make a formal diagnosis. At least our insurance will cover a majority of that visit.
So we go back March 2 for that. I'm frustrated, this puts us at least 2-3 months further out. In a state where it takes 2+ years to get services, if you even get them, I am just hurting over this. I felt like we put all the ducks in a row, but apparently they weren't.
I honestly could care less about a diagnosis, but I will play the game. Diagnosis means nothing to me. More and more autism is just a word to me... it's just a catch all phrase for so many illnesses. What matters to me is that he's getting better.
Our family's financial state right now is, quite frankly, pretty dire. Since our grocery bills have increased so much (about $225 a week.) due to Riley's diet, we are struggling pretty bad. Every month we do somehow make it, with me taking clients as much as possible, DH doing cash work, family and friends sending us the occasional check in the mail (Godsend.) We do have help with some of the biomedical/supplements, and we're going to apply for more grants. I plan to work on that this weekend. It's really hard for me to imagine struggling for more than two years to pay for all of this. It just won't work.
I think the hardest part of all of that is that we're really not doing a ton of therapy. At this point, it's mainly biomedical, what little services we get through the school's therapists/teachers coming (I'm happy with OT but the rest...eh) and now next week we'll have a little behavioral therapy. That is coming thanks to my father in law, who gave us a very lovely Christmas gift in an envelope. We also have our babysitter, who I've mentioned works for an autism therapy program. She is great with both kids. It's just not enough... I wish that we could afford some form of intensive behavioral therapy. It is impossible, even if we wanted to. A year of that therapy is about the same as my husband's salary.
This all came crashing in on me this afternoon. After a few very rough days, when DH got home I just went into the shower and wept. It's not about the money, or the hoops to jump through, or any of that. This pain, watching my baby struggle, is the most real thing I've ever felt. It's almost alive to me. The pain is something completely separate from my body. It is horrible. I'm allowing myself to feel that pain but at the same time, trying not to get caught up in thinking in a negative way. I find myself doing that anytime Riley goes through a tough spot, like he is now.
The S. Boullardi seems to be doing it's job, which is good news. While changing Riley's pull ups this morning, I saw two very obvious yeast die off diapers. He never has that type of poop-- anything remotely runny. This was yellow, runny, seedy. Definitely yeast. He got about a capsule and a half tonight, I think we'll see how that goes and go up to two soon. We're going to start really limiting yeast-feeding food as well. There is no doubt in my mind that's what's going on with him lately. He's just been going through a really rough time behaviorally.
Tomorrow afternoon our teacher from the school district comes, and a friend is bringing her son for a "playdate" of sorts. We'll see how that goes... I haven't seen Riley around other three year olds much. It's something worth working on.
Monday, January 5, 2009
Summary in bullets.
Bullet points instead of a real blog tonight.
- A woman at a store made a comment to me about how easy it was to have small children compared to teenagers. She really didn't know a thing about my reality, did she?
- Sad, confused, and just... sad about John Travolta's son, Jett.
- Currently treating for yeast. My husband decided on his own we should start Riley on yeast free/specific carbohydrate diet. We both have observed an obsession with: hemp milk, bread, and rice bars this week. Obsession. Screaming for four hours obsession. We're also giving S. Boullardi nightly, and will increase that in a few days. Riley's moodiness and stimming has been through the roof this last week or so (granted, he also had a low grade fever and cough in there) He's also been waking in the night. And has rashes on his hands and face. And a diaper rash and "Itchy penis. Riley itchy penis." (in his own words) Anyway. Yep, treating for yeast. Bah.
- Waiting on the porphryns testing results from France. Sent it Dec 26. Should come anytime now. I'm sick about it. I don't think I want to know. But, we need to know how to move forward.
- I want to get around to posting test results so that hopefully someone out there will be able to offer some input as well. I need to call and bug our Dr's office for written results from the 23rd.
- We're starting more therapy next Monday. A friend of mine does some behavioral type therapy through a local intensive program and will be working with Riley privately. We're thrilled. Our babysitter works for the same program, so we have a lot of great people coming in and out of our house.
- I'm completely exhausted and burnt out at the moment and soooo glad winter break is over. School district therapists start coming again tomorrow.
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