Two pieces of good news regarding intensive therapy services.
#1- Riley's Medicaid was approved and he'll be added to the state's waiting list within about a month. If all else fails, we'll at least have a place in line for those services. The waiting list is anywhere from 14 months to 22 months depending on who you ask. Two kids on a local yahoo group I'm on were added not too long ago with their "places in line" around 250-260.
#2- Our state is inching toward mandatory insurance coverage for autism related therapy. http://www.autisminsurancenow.org/ We should know a little more next week.
Either way, there's light at the end of the therapy tunnel.
Thursday, June 25, 2009
Tuesday, June 16, 2009
Damn you, corn.
When we first started the GFCF diet, I bought some Gorilla Munch cereal for Riley. He had reactions around then (stimmy and constipated) so we cut it out in case it was the cereal. This past week we added the cereal back in to see if he could tolerate it. Um, no. Big, fat NO. Yesterday was one of the worst days I can remember in a long, long time. He's actually with my mom this afternoon because I knew I needed a break.
And on that subject... of breaks, I mean. A few weeks ago we made the decision to stop doing the two hours of therapy a week we were doing out of pocket to use that money toward respite. I already do 3 hours per week during the day so that I can get work done and can get some sanity. A very minimal amount of time, really. But we've been able to afford it for the most part. Now, we have decided to use that therapy money toward respite in the evenings every other week. We took advantage of it last night, and it was much needed. I love our babysitter and cannot tell you how grateful I am that I hired her when I did. She's dependable, she's a trained therapist, and most of all she is so, so good with my kids.
In some ways I feel guilty, as though this is a luxury. It's not. It's a necessity in our family. I really want to stay married and be a good mother to my children. If this is what it takes, so be it.
I spent the entire car ride last night to the restaurant we went to crying and venting. I still have so much grief to work through. I'm still so pissed off and bitter that we did not get the life we expected. That Riley didn't get the life I wanted him to have. I keep telling myself that he's come very far and that we're doing what we can at this point. I just so wish he was one of those "easy" recoveries. I do realize that other people's kids have far more issues than Riley. I keep that in the forefront of my mind often, and try to be grateful for all of his strengths. At one time he was on 11 supplements and I thought that was a lot! My hats off to those of you who are fighting the good fight. I feel like some days I just want to admit defeat and accept that Riley will never improve. But I think in my heart I know that's not true.
We're still waiting to hear about getting on the waiting list for the medicaid waiver. Our state is also teetering about perhaps making insurance coverage mandatory. If that happens, we'll have services very soon. Honestly, if it doesn't, I don't know that we won't consider taking a loan out and getting intensive services ourself. Each month that goes by that he's lacking these social and communication skills makes me so sad... mostly because I know the full time therapy would help him so much.
Yikes, this wasn't exactly a heartwarming post!
Monday, June 8, 2009
Phrase that made me smile
"I like mushrooms."
-Riley, unprompted at dinner last night.
(It's been a while since I've done one of these. I should try to do them again!)
-Riley, unprompted at dinner last night.
(It's been a while since I've done one of these. I should try to do them again!)
Thursday, June 4, 2009
DAN! appointment
This morning I took Riley to see Dr Van Dyke, our Defeat Autism Now! physician. We hadn't seen him since I think the end of January. My mom came along to help with the kiddos. When Dr Van Dyke came into the playroom to get us, I said, "Riley, who is that?" and he looked up at him and said, "Hi Dr Van Dyke." It was the sweetest moment!
The appointment itself was a little jumbled. I didn't come in with a list this time, and I felt like I had a little bit of venting to do. He's always great about listening to me vent. ;) I gave him the run down of what supplements he's on now, and we talked about what Riley's big issues have been. I told him hyperactivity, interpersonal skills/communication as well as stimming and issues with an exaggerated "flight or fight" response (Riley has been unlocking and running out of our front door in a few seconds flat when he gets really upset) We also talked about yeast and viral stuff.
We are going to do a test to see where his neurotransmitter levels are. If they are off balance, we will supplement where needed. Dr Van Dyke said this is something he's been seeing good results with lately. It's worth a shot, and will likely be covered by insurance.
Since yeast is (finally) under control, thanks to the Enhansa, I asked today about viruses. Long story short, Riley has had viral symptoms over time. We may or may not run a Mumps titer, which is one we agreed would be worth it. Otherwise I may give lauracidin a try as an anti viral, but not right now.
Riley is on three core supplements right now: Enhansa, Mb12 injections, and folinic acid. He also gets probiotics alternated with coconut milk yogurt. We're still GFCF. I'm hesitant to add anything else in at this point. We'll see what happens with the neurotransmitter levels.
IEP meeting
This afternoon I sat with the teacher, speech therapist, and OT that have been working with Riley in home since last September. Also there was the school districts LEA. Boy, this was a fun meeting. Without going into a lot of detail, Riley is going to be in an inclusion "classroom" next fall, 4 mornings a week for 2.5 hours a piece. He'll get that, plus a half hour of speech and an hour of OT each week. I was very pleased with our IEP goals as well. I feel at peace with the services they are giving him. I cannot wait for him to be with his peers. I think it will be so good for him (and for me, and for his brother) He has met all of his goals from last summer. Breezed through them, really. So I'm looking forward to what the next year will bring.
Today was a positive day, though stressful. Dr Van Dyke is always very positive, and always says he believes Riley will recover. He said it today again, that he thinks Riley is making great progress and he is happy with it. While it feels like it's taking AGES for my husband and I, I guess you have to put in perspective that we just learned he "may" be on the spectrum 13 months ago, and started the diet/biomedical stuff last August, so 10 months. He has come very, very far in that period of time.
One suggestion the Dr had was to video Riley once a month again. We hadn't done that since last winter. I think it might be time to get out the camera and do some comparison videos.
This morning I took Riley to see Dr Van Dyke, our Defeat Autism Now! physician. We hadn't seen him since I think the end of January. My mom came along to help with the kiddos. When Dr Van Dyke came into the playroom to get us, I said, "Riley, who is that?" and he looked up at him and said, "Hi Dr Van Dyke." It was the sweetest moment!
The appointment itself was a little jumbled. I didn't come in with a list this time, and I felt like I had a little bit of venting to do. He's always great about listening to me vent. ;) I gave him the run down of what supplements he's on now, and we talked about what Riley's big issues have been. I told him hyperactivity, interpersonal skills/communication as well as stimming and issues with an exaggerated "flight or fight" response (Riley has been unlocking and running out of our front door in a few seconds flat when he gets really upset) We also talked about yeast and viral stuff.
We are going to do a test to see where his neurotransmitter levels are. If they are off balance, we will supplement where needed. Dr Van Dyke said this is something he's been seeing good results with lately. It's worth a shot, and will likely be covered by insurance.
Since yeast is (finally) under control, thanks to the Enhansa, I asked today about viruses. Long story short, Riley has had viral symptoms over time. We may or may not run a Mumps titer, which is one we agreed would be worth it. Otherwise I may give lauracidin a try as an anti viral, but not right now.
Riley is on three core supplements right now: Enhansa, Mb12 injections, and folinic acid. He also gets probiotics alternated with coconut milk yogurt. We're still GFCF. I'm hesitant to add anything else in at this point. We'll see what happens with the neurotransmitter levels.
IEP meeting
This afternoon I sat with the teacher, speech therapist, and OT that have been working with Riley in home since last September. Also there was the school districts LEA. Boy, this was a fun meeting. Without going into a lot of detail, Riley is going to be in an inclusion "classroom" next fall, 4 mornings a week for 2.5 hours a piece. He'll get that, plus a half hour of speech and an hour of OT each week. I was very pleased with our IEP goals as well. I feel at peace with the services they are giving him. I cannot wait for him to be with his peers. I think it will be so good for him (and for me, and for his brother) He has met all of his goals from last summer. Breezed through them, really. So I'm looking forward to what the next year will bring.
Today was a positive day, though stressful. Dr Van Dyke is always very positive, and always says he believes Riley will recover. He said it today again, that he thinks Riley is making great progress and he is happy with it. While it feels like it's taking AGES for my husband and I, I guess you have to put in perspective that we just learned he "may" be on the spectrum 13 months ago, and started the diet/biomedical stuff last August, so 10 months. He has come very, very far in that period of time.
One suggestion the Dr had was to video Riley once a month again. We hadn't done that since last winter. I think it might be time to get out the camera and do some comparison videos.
Sunday, May 24, 2009
Back in the saddle
We have seen some changes with Enhansa curcumin! Riley has been on it two weeks and is at less than half the max dose. We will continue to add more as time goes on, giving his body an adjustment period each time.
Physically, Riley has been having yeast die off. He's also having what I think is some sort of viral die off-- a rash on the insides of his elbows, knees, and on his legs. It's a blistery rash, bumps and almost like pimples but bigger. It is really strange. I want to be patient with this stuff, but I keep wondering if a trial on a stronger anti viral would be worth a shot.
My husband and I have both noticed changes. One thing I noticed a week or so ago was that when Riley spun around in a circle, he got dizzy. He normally does not ever get dizzy from spinning. (He thought it was funny, actually) He has also started blinking a lot-- almost like a tic. Smelling things has increased as well. He seems to be putting everything to his nose to smell. He's also been putting things close to his ears to listen to them. It's like all of his senses are on overdrive. This I think may have to do with adding the MB12 shots back in.
We have been most surprised (and pleased) to see the changes happening in his interpersonal skills. This past week at the park, and today at the zoo, Riley has actively engaged with other kids. My husband was at the park/zoo today with the kids while I visited a client, and he told me Riley was acting very different from anything he'd seen before. He said he was actually talking to other kids. This is a little remarkable as just a few days ago he told me he hadn't seen much of anything he'd call "change."
As of right now, Riley is on the GFCF diet (still strict with that) limited corn and soy. He is taking 800 mcg of folinic acid once per day, 300 mg of Enhansa twice per day, and getting an injection of MB12 every third day. Simplified is really good. We are going to see his DAN! Dr on June 4 to check in.
Physically, Riley has been having yeast die off. He's also having what I think is some sort of viral die off-- a rash on the insides of his elbows, knees, and on his legs. It's a blistery rash, bumps and almost like pimples but bigger. It is really strange. I want to be patient with this stuff, but I keep wondering if a trial on a stronger anti viral would be worth a shot.
My husband and I have both noticed changes. One thing I noticed a week or so ago was that when Riley spun around in a circle, he got dizzy. He normally does not ever get dizzy from spinning. (He thought it was funny, actually) He has also started blinking a lot-- almost like a tic. Smelling things has increased as well. He seems to be putting everything to his nose to smell. He's also been putting things close to his ears to listen to them. It's like all of his senses are on overdrive. This I think may have to do with adding the MB12 shots back in.
We have been most surprised (and pleased) to see the changes happening in his interpersonal skills. This past week at the park, and today at the zoo, Riley has actively engaged with other kids. My husband was at the park/zoo today with the kids while I visited a client, and he told me Riley was acting very different from anything he'd seen before. He said he was actually talking to other kids. This is a little remarkable as just a few days ago he told me he hadn't seen much of anything he'd call "change."
As of right now, Riley is on the GFCF diet (still strict with that) limited corn and soy. He is taking 800 mcg of folinic acid once per day, 300 mg of Enhansa twice per day, and getting an injection of MB12 every third day. Simplified is really good. We are going to see his DAN! Dr on June 4 to check in.
Thursday, May 14, 2009
Sunday, May 10, 2009
Started Riley on Enhansa yesterday. Crazy die off today... lots of screaming and fit-throwing. I'd say it's doing something? We'll give this one a few weeks and see what happens. This is the first time we've tried it. He has evil yeast right now, so I'm willing to try anything to get that back under control.
The good news is that after a while off of MB12 shots (we had Riley off of several supplements and then added them back in one at a time to see what was working and what wasn't) we began them again a week and a half ago. Immediately, potty training has returned full force. This was the big thing we saw the first time, so I know it's effecting something. I think he's actually able to feel how to push the pee out.
Fast post. Cooking dinner.
The good news is that after a while off of MB12 shots (we had Riley off of several supplements and then added them back in one at a time to see what was working and what wasn't) we began them again a week and a half ago. Immediately, potty training has returned full force. This was the big thing we saw the first time, so I know it's effecting something. I think he's actually able to feel how to push the pee out.
Fast post. Cooking dinner.
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