I can't believe the last time I wrote, I forgot to mention we received the results of all of his genetic testing.
And those results? Everything was "normal". So, there is nothing obvious in his DNA to explain anything.
Which I interpret to mean: his autism can be reversed.
I am still antsy for this homeopathy appointment. I have been reading both of the books that were suggested. One is really esoteric, and I couldn't recommend it to anyone and still sleep at night. The other one is called Impossible Cure by Amy Lansky. I am not very far in it yet, but it is definitely more readable than the other one and I am enjoying it so far.
The camel milk is going okay. Buzzy was all over the place yesterday. His speech is certainly more clear and he isn't dropping as many ends of words as he was a week or two ago, so that's great. But, his poop is an unholy mess and he was really antsy yesterday and all over the place. He did sleep a little later today, which was good. I am just hoping his digestive system gets the memo to not be stupid. I am tired of the mess. So, we will keep it up. I am emailing another mom who is doing camel milk and I've also asked the FB group about how long it will be like this. I really, really hope not much longer.
That's really about all I've got.
Thursday, April 25, 2013
Sunday, April 21, 2013
Changing things up
Things have been pretty stable here lately with Buzzy, for the most part. Yes, we changed speech therapists. And we are now driving him to his therapies twice a week instead of them coming into our home. But, his supplements and diet has remained pretty much the same.
I decided to try to re-introduce some of the forbidden foods. I don't really know if he ate any of my attempts at re-introducing brown rice. We tried to get him to eat some pasta, but he wasn't too willing. I did give him some Leapin' Lemurs (peanut butter being the forbidden food), but I didn't note anything too different. However, I did add one huge thing this week. So, I think any reactions are now automatically suspect, because I am not sure what to blame it on.
Wednesday night the camel milk arrived. It was nice and frozen solid. I kept out one pint to thaw. We started him with 2 oz on Thursday morning. I didn't notice anything out of the ordinary with him behavior-wise. Maybe he was a little more cranky and little more likely to tantrum.
Friday he was definitely throwing more fits, being more disagreeable, and having more tantrums. His poop turned nasty. I know that the camel milk might cause some die-off, so I wasn't too worried. But, I hate nasty poop. He also napped - just laid down on the floor and fell asleep. Which is not like him at all. I really think it was the camel milk.
Saturday was pretty much the same - more tantrums than usual and another nap. And nasty poop.
Today, he woke up with a poopy diaper, but it was really solid. Like (here comes some TMI) pebbles solid. Which is so rare for him. His mood seems to have stabilized, but the jury is still out on whether he is going to take a nap or not. He is lying on the floor here looking really close to napping, but he's not there yet. We will keep it up and see where it takes us. One of the women who started the camel milk FB group messaged me and wants to talk to me about her child's experience with camel milk, and I am excited to talk to her - which I will do Monday. I had posted to the group concerned about the poop issue and I was worried that he might be allergic. I feel so grateful that I am "meeting" all of these amazing people who are so willing to give their time and expertise and answer my questions and help me along. I don't know where my son would be without the internet, but it wouldn't be good. I have received so much help from many people (and many of them in the last 2 days!). I try as often as I can to give back a little of it. I hope to (when I am a little further into my journey) become a TACA mentor.
I also decided to go forward with homeopathy. We have a good window here where we aren't changing any supplements (since we don't see his doctor till mid-May) and I keep reading so many awesome things and so much awesome progress with it. I heard good things about The Center for Holistic Healing, so we are all set for an appointment on the 29th. I am looking forward to getting started with it. I think this, together with the biomedical interventions (and the actual therapies) will really get Buzzy moving in the right direction.
As for my interest in Dr. Goldberg, I've found some comments from parents that make me think this isn't the right path for us at this time. Perhaps if we aren't seeing any changes in Buzzy with what we are doing for him I will revisit a trip to Dr. Goldberg. For now we will stay the course, especially since he is making such great progress.
And that nap? Despite everyone and their sister coming in to talk to me, Buzzy has continued to sleep. It's amazing.
I decided to try to re-introduce some of the forbidden foods. I don't really know if he ate any of my attempts at re-introducing brown rice. We tried to get him to eat some pasta, but he wasn't too willing. I did give him some Leapin' Lemurs (peanut butter being the forbidden food), but I didn't note anything too different. However, I did add one huge thing this week. So, I think any reactions are now automatically suspect, because I am not sure what to blame it on.
Wednesday night the camel milk arrived. It was nice and frozen solid. I kept out one pint to thaw. We started him with 2 oz on Thursday morning. I didn't notice anything out of the ordinary with him behavior-wise. Maybe he was a little more cranky and little more likely to tantrum.
Friday he was definitely throwing more fits, being more disagreeable, and having more tantrums. His poop turned nasty. I know that the camel milk might cause some die-off, so I wasn't too worried. But, I hate nasty poop. He also napped - just laid down on the floor and fell asleep. Which is not like him at all. I really think it was the camel milk.
Saturday was pretty much the same - more tantrums than usual and another nap. And nasty poop.
Today, he woke up with a poopy diaper, but it was really solid. Like (here comes some TMI) pebbles solid. Which is so rare for him. His mood seems to have stabilized, but the jury is still out on whether he is going to take a nap or not. He is lying on the floor here looking really close to napping, but he's not there yet. We will keep it up and see where it takes us. One of the women who started the camel milk FB group messaged me and wants to talk to me about her child's experience with camel milk, and I am excited to talk to her - which I will do Monday. I had posted to the group concerned about the poop issue and I was worried that he might be allergic. I feel so grateful that I am "meeting" all of these amazing people who are so willing to give their time and expertise and answer my questions and help me along. I don't know where my son would be without the internet, but it wouldn't be good. I have received so much help from many people (and many of them in the last 2 days!). I try as often as I can to give back a little of it. I hope to (when I am a little further into my journey) become a TACA mentor.
I also decided to go forward with homeopathy. We have a good window here where we aren't changing any supplements (since we don't see his doctor till mid-May) and I keep reading so many awesome things and so much awesome progress with it. I heard good things about The Center for Holistic Healing, so we are all set for an appointment on the 29th. I am looking forward to getting started with it. I think this, together with the biomedical interventions (and the actual therapies) will really get Buzzy moving in the right direction.
As for my interest in Dr. Goldberg, I've found some comments from parents that make me think this isn't the right path for us at this time. Perhaps if we aren't seeing any changes in Buzzy with what we are doing for him I will revisit a trip to Dr. Goldberg. For now we will stay the course, especially since he is making such great progress.
And that nap? Despite everyone and their sister coming in to talk to me, Buzzy has continued to sleep. It's amazing.
Monday, April 15, 2013
Busy - but not this month
It's time to get caught up on posts!
He was tested for mitocondrial dysfunction - he was in the middle. Need for methylation - none. His score was all the way to the left. Perhaps he's an over-methylator? I don't know.
A week or so ago, we finally got the long-awaited urine test results. I know, I know. It's really a sad commentary on your life when you look forward to something like that so much.
There was a lot of information. And most of it, I have no clue about. He showed a high need for all tested antioxidants: vitamins A, C, E, coenzyme-q 10, and alpha lipoic acid. And high need for vitamins B1, B2, and B7. The rest of the Bs were borderline. He also tested borderline for Zn, Mn, and Mg.
There was a lot of information. And most of it, I have no clue about. He showed a high need for all tested antioxidants: vitamins A, C, E, coenzyme-q 10, and alpha lipoic acid. And high need for vitamins B1, B2, and B7. The rest of the Bs were borderline. He also tested borderline for Zn, Mn, and Mg.
The only thing he was high in was molybedenum. I don't know if it was an "okay" high, or "too high". The "x" was all the way to the right.
He was tested for mitocondrial dysfunction - he was in the middle. Need for methylation - none. His score was all the way to the left. Perhaps he's an over-methylator? I don't know.
He showed a need for glutathione.
Then there was a huge picture of the Krebs cycle. He had a bunch of abnormal numbers on the right side of the process. Things like iso-citric acid.
Then there was the final page going over metabolic stuff, where many areas were abnormal, like high markers for bacterial dysbiosis. That wasn't too surprising.
Then there was a huge picture of the Krebs cycle. He had a bunch of abnormal numbers on the right side of the process. Things like iso-citric acid.
Then there was the final page going over metabolic stuff, where many areas were abnormal, like high markers for bacterial dysbiosis. That wasn't too surprising.
So, overall - over 7 pages of things, only the rudiments of which I understood.
We have our appointment in a month. Yes, that was the earliest available. Ugh.
We have our appointment in a month. Yes, that was the earliest available. Ugh.
I still haven't heard from the geneticist about his first test results.
We just started today with his new schedule and new speech therapist. (She had the flu last week.) I hate the two hours I have to spend in the car driving him to and from the therapy, but I am trying to do what's best for him. The baby isn't too excited about the whole deal, though. I can't say I blame her. We will be doing the same thing tomorrow, except worse. He will have 4 different therapies tomorrow, starting at 9:45. I hope he does well.
I signed up to attend the Autism One Conference in Chicago last night. I don't think I will be there every day, but there are a lot of different talks I want to attend. I am pretty excited for it. It's being held at the end of May.
I have been doing a lot of reading about how beneficial camel milk is for kids with messed up guts. I placed an order on Friday for 10 pints. It should be here Wednesday. I am excited to start this, as well. I have high expectations. There is actually a lot of scientific research on this, too. I know it sounds crazy, believe me.
We have been having more tantrums around here lately. I am not sure why. He has been pitching a fit because I won't let him open and close and open and close (etc.) the garage doors. It's been kind of getting old. I had to manhandle him into the car today to get to his therapy and I had to manhandle him into the house after we got home from his therapy. It's not exactly an easy task with the baby to handle, too.
Buzzy has started to answer "yes" to questions. Not all questions, but some. He has "no" mastered, but I would love to ask him a question like "Are you hungry?" and have him answer "Yes!" when he is. We are getting close, I think.
I am also looking into homeopathy to help him out. Not now, but it's something I am keeping in my back pocket for when we are waiting for appointments and I need to "do something NOW" as I am wont to feel.
Well, the Buzz thinks it's time to help me post an entry. I guess I have to cut this one short!
Thursday, April 4, 2013
The chasm widens
I have been doing a lot of thinking about the baby. She is delayed in a few areas. And such small things she would have to do to catch up! All she needs to do RIGHT NOW is say two words with meaning and she would fall right in line with her peers. It sounds so easy. And yet, she can't. And I really don't see that changing any time soon. She is able to lift her shirt to look for her bellybutton, but she can't look at me when she's asked "where's mama?" And with every passing day, I fear the chasm between her abilities and her peers' abilities widens.
Then there's Buzzy. The list of things he needs to be able to do to catch up with his peers is a lot longer. And while the chasm isn't as big as it was at one time, it's still there. And some days it's unfathomable how he will - we will - cross it.
Buzzy saw the geneticist on Friday. They took his height and his weight and his head circumference. They worked up a family tree with genetic history of extended family on it. Then we talked about how much testing would cost. (Answer: if we had NO insurance, it would be great and FREE. Because have insurance, we will pay more than the $1500 per test, to help pay for those without. And we're getting two different tests.) The we met the doctor. We liked him. He was very personable and knowledgeable about autism. He was familiar with a few studies that I had just read about the day before. We both liked him. He examined Buzzy's hands and looked him over, but didn't take any formal measurements. We again talked about testing, and decided to go with an autism panel test (a series of metabolic and other biochemical tests) and the CGH (microarray).
We finally got around to getting his blood taken for these tests yesterday. He also had to give a urine sample, and he did great on the potty and gave a nice big sample. The biochemical tests will have results in 7-10 days. The microarray will yield results in 3 weeks. Tick tock.
We are still waiting on the urine test results.
We have finally gotten more speech for Buzzy. Now every Monday and Tuesday, I will drop him off at Skill Sprout and he will have 2 hours of ABA and one hour of speech therapy. It will be a pain to drive there and drop him off, but it will be good for him to have a different environment and get more therapy. I still need to inform his former speech therapist, since I suspect my services coordinator failed to do so. (In other words, he had speech from her this week after I was told she had been released.) The rest of the week will have the same schedule.
It's been warmer here, so we have been able to get outside more often, so that's good.
That's all I've got. Still desperately looking forward to the summer and to more answers.
Then there's Buzzy. The list of things he needs to be able to do to catch up with his peers is a lot longer. And while the chasm isn't as big as it was at one time, it's still there. And some days it's unfathomable how he will - we will - cross it.
Buzzy saw the geneticist on Friday. They took his height and his weight and his head circumference. They worked up a family tree with genetic history of extended family on it. Then we talked about how much testing would cost. (Answer: if we had NO insurance, it would be great and FREE. Because have insurance, we will pay more than the $1500 per test, to help pay for those without. And we're getting two different tests.) The we met the doctor. We liked him. He was very personable and knowledgeable about autism. He was familiar with a few studies that I had just read about the day before. We both liked him. He examined Buzzy's hands and looked him over, but didn't take any formal measurements. We again talked about testing, and decided to go with an autism panel test (a series of metabolic and other biochemical tests) and the CGH (microarray).
We finally got around to getting his blood taken for these tests yesterday. He also had to give a urine sample, and he did great on the potty and gave a nice big sample. The biochemical tests will have results in 7-10 days. The microarray will yield results in 3 weeks. Tick tock.
We are still waiting on the urine test results.
We have finally gotten more speech for Buzzy. Now every Monday and Tuesday, I will drop him off at Skill Sprout and he will have 2 hours of ABA and one hour of speech therapy. It will be a pain to drive there and drop him off, but it will be good for him to have a different environment and get more therapy. I still need to inform his former speech therapist, since I suspect my services coordinator failed to do so. (In other words, he had speech from her this week after I was told she had been released.) The rest of the week will have the same schedule.
It's been warmer here, so we have been able to get outside more often, so that's good.
That's all I've got. Still desperately looking forward to the summer and to more answers.
Tuesday, March 26, 2013
More Progress
Buzzy's speech evaluation from a few weeks ago went okay. I had the distinct feeling that the woman felt like I was wasting her time. She said he didn't need as much therapy as I was interested in getting and even asked if I still wanted to do the evaluation. After dragging my kids there and walking across their huge parking lot (and it was freezing outside) and walking up a flight of stairs and through their gym (like, sweaty people exercising kind if gym) to get to the speech room, I was NOT going to say no.
Needless to say, I was annoyed.
But at the end, I got his results. And once I came home, I calculated some things. So, I will just paste my "findings" here.
In October, I calculated him to have a 68% delay in expressive speech and a 64% delay in receptive. Today he has a 20% delay in receptive and a 10% delay in receptive. He wouldn't even qualify for EI with those numbers - they need to be 30%. That's if the tests are accurate. I suppose they are. I am happy to see such great progress.
I wrote that to a friend. And I am still excited to see how much better he is doing.
As for his allergies, I spoke with the PA. She said to cut out everything that was a 2 or 3 on the IgG list. Anything that was a 1 was okay to leave in. After some finagling, I was able to find a substitute for his beloved fish oil that didn't have salmon. It doesn't have as many omegas in it, but it doesn't have salmon and I am able to still mix his Super Nu-Thera in it without him having a fit, so it's all good.
We are still waiting on the urine test results. The doctor should get them this week. Which means maybe I will get them next week.
The baby and I will be able to get established as new patients in mid-May. I just made that appointment today. I guess I was dumb for thinking that we would be able to get in over Spring Break (which is next week). When I heard the scheduler flipping through pages for about a minute I knew it wasn't going to be good. Sigh.
We have also been making progress on the potty training front - as long as he is naked from the waist down (socks are okay). He has been doing great on the potty with both poop and pee - and even more significant - telling us he needs to go.
So, we have added to his elimination diet and we are continuing his supplements and continuing to make progress. He is sometimes using 4 word sentences without prompting. His speech is getting clearer - especially if we help him practice words. I am happy with the progress he is making.
Now if it would just warm up here, we could go outside once in a while!
Needless to say, I was annoyed.
But at the end, I got his results. And once I came home, I calculated some things. So, I will just paste my "findings" here.
In October, I calculated him to have a 68% delay in expressive speech and a 64% delay in receptive. Today he has a 20% delay in receptive and a 10% delay in receptive. He wouldn't even qualify for EI with those numbers - they need to be 30%. That's if the tests are accurate. I suppose they are. I am happy to see such great progress.
I wrote that to a friend. And I am still excited to see how much better he is doing.
As for his allergies, I spoke with the PA. She said to cut out everything that was a 2 or 3 on the IgG list. Anything that was a 1 was okay to leave in. After some finagling, I was able to find a substitute for his beloved fish oil that didn't have salmon. It doesn't have as many omegas in it, but it doesn't have salmon and I am able to still mix his Super Nu-Thera in it without him having a fit, so it's all good.
We are still waiting on the urine test results. The doctor should get them this week. Which means maybe I will get them next week.
The baby and I will be able to get established as new patients in mid-May. I just made that appointment today. I guess I was dumb for thinking that we would be able to get in over Spring Break (which is next week). When I heard the scheduler flipping through pages for about a minute I knew it wasn't going to be good. Sigh.
We have also been making progress on the potty training front - as long as he is naked from the waist down (socks are okay). He has been doing great on the potty with both poop and pee - and even more significant - telling us he needs to go.
So, we have added to his elimination diet and we are continuing his supplements and continuing to make progress. He is sometimes using 4 word sentences without prompting. His speech is getting clearer - especially if we help him practice words. I am happy with the progress he is making.
Now if it would just warm up here, we could go outside once in a while!
Tuesday, March 12, 2013
Long time, no write
I haven't felt the muse speaking to me until today, so I let it go. But, I am back with some things to talk about. So, here we go!
Last week, I had to take Buzzy off of all his vitamins and shots. Everything. I needed to collect a urine sample from him that was all Buzzy and no good stuff. For 4 days. I figured while I was doing that to do the pyroluria testing on him as well. I stopped all his vitamins last Saturday. And aimed to collect his urine on Tuesday. I needed a first morning sample and then a sufficient one later in the day.
By Monday the Buzz was getting a little squirrelly. By Tuesday I could see his focus was definitely not as good as usual. By Wednesday (incidentally a snow day for my husband and girls) things were deteriorating rapidly. And I missed his first morning urine because he woke up earlier than usual. I was definitely not happy. I did manage to get barely enough sample to send off for his pyroluria testing, though. I called them and they offered that the bare minimum they needed was 8 ml. Well, I gave them that.
Buzzy can use the potty if he is naked during a 2 hour period with zero to one accident(s). So, that's how I got that sample. I did have to grab the potty right away before he dumped it, though.
Anyhow, I devised a plan to get his first morning urine. I would wake him up 6 or so hours after he went to sleep and have him sit on the potty and pray he would have something in there. Then, I would put a urine collection bag on him and catch that and combine the samples (which was okay with the testing company).
So, when the baby woke to eat (at around 3:30 in the morning), I grabbed Buzzy and he went to the potty. (Not as easy as it sounds.) And I had enough to use for testing, but I bagged him and combined it anyhow.
I already knew that going off his diet was bad news, from what we saw in December. I didn't really think all of the supplements would have an effect. Or such a dramatic effect. But, they did.
By Wednesday he was drooling. He was toe walking. He was throwing tantrums. He lost focus. He was back to his "old" self. Which wasn't good. He started waking earlier and earlier each day. He will sleep in anywhere from 8:00 to 9:00 in the morning, regardless of when he goes to bed. (We don't usually get him to bed till 9:00). He woke Tuesday at around 7:30 am. Then Wednesday, 7:00 am. By Thursday, he was up at 6:30. I was exhausted. And he was all go, go, go from the moment he woke up. As soon as he got up Thursday (and his samples were done with), I started him on his supplements. And that night, he got his B-12 shot.
During that time his poop went from mostly solid to mostly pure liquid with caustic butt-burning properties. He was a mess. And I guess I now have another answer: he needs the special diet. And he needs his supplements. I was starting to wonder if they were all worth it. Ha ha!
Today, I had to wake him up at 9:00, he was in deep sleep. He was a little wired today, but no tantrums. And he's had his first solid poop since he went off his supplements.
He also got his allergy test results back. I have a consult tomorrow with his doctor to go over. I couldn't wait till we got the urine test results back, because he tested positive for a lot of things. And I want to know how to handle it. He had quite a few IgG positives (almond, oats, gluten, wheat, yeast, mustard, cow's milk, coconut, salmon, etc). I won't name them all here. He also tested IgE positive for two things: peanuts and wheat. Based on my reading only the IgE ones are considered true allergies. So, I will talk with the doctor tomorrow and see what the plan is. In all my research, I have really just confused myself. So, we are waiting and not really modifying his diet at the moment (except to avoid peanuts and wheat - which we were already doing with the wheat).
We will have the pyroluria tests back tomorrow - all of them except the baby's. There is no way I could get a sample from her at the moment, so I am just hanging on to her test kit. My oldest was at the lowest end of abnormal possible - so I am treating her with some zinc lozenges and having her take b6. I am comfortable giving her what I am since they are for kids and Buzzy takes them.
So, for now we wait on urine test results.
I also have a speech evaluation scheduled with a different therapy place nearby. That's set for tomorrow morning. I haven't been able to make much progress with getting his speech switched over to his ABA providers. We are at the point where I gave my service coordinator their information, and she is supposed to call them. I'm not holding my breath.
On an annoying note - our service coordinator switched over billing for speech services to my insurance company back in January. Which I DID NOT give her permission to do. We talked about it, and I told her to "hold off for now". Of course, we could have been getting more therapy for him all along since then, because we were/are no longer subjected to EI's constraints. So, I am super irritated (even more than usual) with EI. And I am going to have to deal with them again with the baby? Oh, goody.
Well, that's all for now. As usual - waiting on test results. And I have started "brushing" Buzzy, too. Of ocurse, I just saw I've been doing it incorrectly. I will talk about that more next time. I will try any wacky thing I see on the internet - as long as it is pretty innocuous And what can be more innocuous than taking a soft brush and brushing your kid? Well, it can't hurt. Let's see if it helps!
T-t-t-t-hat's all folks!
Last week, I had to take Buzzy off of all his vitamins and shots. Everything. I needed to collect a urine sample from him that was all Buzzy and no good stuff. For 4 days. I figured while I was doing that to do the pyroluria testing on him as well. I stopped all his vitamins last Saturday. And aimed to collect his urine on Tuesday. I needed a first morning sample and then a sufficient one later in the day.
By Monday the Buzz was getting a little squirrelly. By Tuesday I could see his focus was definitely not as good as usual. By Wednesday (incidentally a snow day for my husband and girls) things were deteriorating rapidly. And I missed his first morning urine because he woke up earlier than usual. I was definitely not happy. I did manage to get barely enough sample to send off for his pyroluria testing, though. I called them and they offered that the bare minimum they needed was 8 ml. Well, I gave them that.
Buzzy can use the potty if he is naked during a 2 hour period with zero to one accident(s). So, that's how I got that sample. I did have to grab the potty right away before he dumped it, though.
Anyhow, I devised a plan to get his first morning urine. I would wake him up 6 or so hours after he went to sleep and have him sit on the potty and pray he would have something in there. Then, I would put a urine collection bag on him and catch that and combine the samples (which was okay with the testing company).
So, when the baby woke to eat (at around 3:30 in the morning), I grabbed Buzzy and he went to the potty. (Not as easy as it sounds.) And I had enough to use for testing, but I bagged him and combined it anyhow.
I already knew that going off his diet was bad news, from what we saw in December. I didn't really think all of the supplements would have an effect. Or such a dramatic effect. But, they did.
By Wednesday he was drooling. He was toe walking. He was throwing tantrums. He lost focus. He was back to his "old" self. Which wasn't good. He started waking earlier and earlier each day. He will sleep in anywhere from 8:00 to 9:00 in the morning, regardless of when he goes to bed. (We don't usually get him to bed till 9:00). He woke Tuesday at around 7:30 am. Then Wednesday, 7:00 am. By Thursday, he was up at 6:30. I was exhausted. And he was all go, go, go from the moment he woke up. As soon as he got up Thursday (and his samples were done with), I started him on his supplements. And that night, he got his B-12 shot.
During that time his poop went from mostly solid to mostly pure liquid with caustic butt-burning properties. He was a mess. And I guess I now have another answer: he needs the special diet. And he needs his supplements. I was starting to wonder if they were all worth it. Ha ha!
Today, I had to wake him up at 9:00, he was in deep sleep. He was a little wired today, but no tantrums. And he's had his first solid poop since he went off his supplements.
He also got his allergy test results back. I have a consult tomorrow with his doctor to go over. I couldn't wait till we got the urine test results back, because he tested positive for a lot of things. And I want to know how to handle it. He had quite a few IgG positives (almond, oats, gluten, wheat, yeast, mustard, cow's milk, coconut, salmon, etc). I won't name them all here. He also tested IgE positive for two things: peanuts and wheat. Based on my reading only the IgE ones are considered true allergies. So, I will talk with the doctor tomorrow and see what the plan is. In all my research, I have really just confused myself. So, we are waiting and not really modifying his diet at the moment (except to avoid peanuts and wheat - which we were already doing with the wheat).
We will have the pyroluria tests back tomorrow - all of them except the baby's. There is no way I could get a sample from her at the moment, so I am just hanging on to her test kit. My oldest was at the lowest end of abnormal possible - so I am treating her with some zinc lozenges and having her take b6. I am comfortable giving her what I am since they are for kids and Buzzy takes them.
So, for now we wait on urine test results.
I also have a speech evaluation scheduled with a different therapy place nearby. That's set for tomorrow morning. I haven't been able to make much progress with getting his speech switched over to his ABA providers. We are at the point where I gave my service coordinator their information, and she is supposed to call them. I'm not holding my breath.
On an annoying note - our service coordinator switched over billing for speech services to my insurance company back in January. Which I DID NOT give her permission to do. We talked about it, and I told her to "hold off for now". Of course, we could have been getting more therapy for him all along since then, because we were/are no longer subjected to EI's constraints. So, I am super irritated (even more than usual) with EI. And I am going to have to deal with them again with the baby? Oh, goody.
Well, that's all for now. As usual - waiting on test results. And I have started "brushing" Buzzy, too. Of ocurse, I just saw I've been doing it incorrectly. I will talk about that more next time. I will try any wacky thing I see on the internet - as long as it is pretty innocuous And what can be more innocuous than taking a soft brush and brushing your kid? Well, it can't hurt. Let's see if it helps!
T-t-t-t-hat's all folks!
Saturday, February 23, 2013
Back from a Break
I didn't know it, but I guess I needed a little break from blogging. Hence the lack of posts around here lately. I had the time on a few occasions around here to write a post, but I found myself doing anything but. So, I decided to come back when the time felt right, and I felt like I had something to say.
Buzzy has been doing a lot better in terms of his articulation and general understandability. (Is that even a word?) Whereas before he would call a banana "na-na" it's now a "ba-na-na". It doens't flow together like an NT child would say it, but it has 3 distrinct syllables, which is good. Also, we call pacifiers around her "buzzifiers". He would call them "fiers". Now he says "buzz-fier" which is also an improvement. "Gro mama" has become (with some reminding) "gro-sssss mama". That last one is one of his catch-phrases. Lots of things around here are gross.
Just a little update on where we are with all the irons I have in the fire...
-Service dog - we will hopefully hear something in between June and December. I am really hoping and praying they will have a match for him. So, that's where that is, and where it will be for the foreseeable future. This is from the place locally. On hold is the place where we would have to fundraise. I am not doing anything with that right now. And hopefully won't have to ever.
-Allergy testing - we received the test kit last week and I just had his blood drawn for that on Monday. We should have results in 2-3 weeks. I wrote on the calendar when we should start getting our undies in a twist about that.
-Pyroluria testing - A friend told me about this issue. The body doesn't remove some metabolic byproducts properly. It can be tested with a simple (ha ha, is anything simple?) urine test. I ordered the test kits for everyone in my family (except my husband) on Tuesday or Wednesday. I definitely meet a lot of the criteria for this particular issue. It is easy to fix with vitamin supplements If Buzzy is positive, I will definitely go over the results with his doctor.
-Baby sister - she is now a year old and is showing a lot of similar delays to her brother, but fortunately not as severe. We will be adding her as a patient to Dr. Usman. I am going to try to get them both in at the same time to avoid multiple 2 hour drives up there. I am heartbroken about this. When I think of my beautiful baby girl having the same problems as Buzzy it's almost unbearable. And how I am I going to give her shots if she needs them? And watch her get her blood drawn? It just sucks. There are no other words for it.
-Urine testing - I am going to try to combine this with the pyroluria testing. For both of them he needs to be off any supplements for a period of time, so I hoping to kill 2 birds with one stone.
-Dr. Goldberg - this is the doctor in California. We have not heard anything back from him. I filled out a bunch of records requests and hope they have made their way to him and we get an appointment scheduled. I am still interested in his opinion, but I am wondering if Dr. Usman can't pretty much do the same thing he does (minus the neuroSPECT). So, given some time, I am less enthusiastic.
-Geneticist - We have an appointment for March 29th. We were originally scheduled for the 22nd, but that had to be changed. Grrr. I still have to fill out release forms and fill out the regular registration forms. I am wondering if they will test me for MTHFR, because I really want to know where the bad copy of the gene came from.
-More therapy: Skill Sprout is very close to being able to provide speech therapy for Buzzy (they do his ABA already). All I need to do is get a hold of my service coordinator and make it happen. Sounds easy, right? Bwhahaha! They will be able to see him twice a week (Mondays and Tuesdays) and back-to-back with his ABA. As long as I can get EI to sign off. See below.
-Did I mention getting a hold of my service coordinator? And how I can't ever seen to be able to? Yeah. She never returns my phone calls any longer. When I last saw her in October, she told me to look out for the transition meeting "at the end of January". I called her mid-January to ask about it. And again at the end of January. And then I pulled out the big guns and had my husband call her. Amazingly (since he called her from work - he's a principal) she answered. Turns out the transition meeting was the following day and she was sure I knew about it. WHAT???!!! Anyhow, I managed to show up and got Buzzy's evaluation for special education services reserved, but just barely. She wouldn't even look at me, and didn't acknowledge my presence. Guilty conscience, I suppose. The thought I may have to deal with more EI crap for the baby makes my butt itch. Ugh. But, the good news is, at least for Buzzy, we will now deal with the special education association for our county. And they seem to return phone calls. Yay.
-Someone I go to church with works as a PT for kids. I have an evaluation set up with them for additional speech services. I called them when I was waiting for Skill Sprout to make things happen. I will take Buzzy to the eval and maybe we can get speech through them, too. Maybe insurance will even pay for it. I don't know. All I know is that I want to keep my options open. And avoid EI as much as possible.
Whew. I think that's all I have on the medical/therapy front.
I want to talk a little about ABA. I meant to stick around last week and watch part of a session, but I can't now remember how I talked myself out of it. So, I am still largely clueless about how the sessions are conducted. However, after every session I receive an email that talks about the skills worked on and the results. I know he is given a task, and he does 10 trials of it. Each trial is recorded as a (+) or a (-). The + is given if he successfully completes the task. If he gets (out of 10 trials) 80% completion, then that's good. But, he has to have an 80% (or higher) success rate, 3 times before a task is considered mastered. And once a task is "mastered" they periodically do it again with him as "maintenance" to make sure the skill is retained.
Here is a recent report:
Responding to nonverbal communication: Get item therapist points to on floor (further away) field of 1 100% Mastered. Way to go!
Same/Different: Give different picture 80% Keep up the good work!
Letters Expressive: O Expressive: P BL 100% BL 100% Awesome!
Letters Maintenance 100% Great work!
Yes/No questions: Do you want this? Yes with object not present 40% Keep working.
Joint Attention: Faces Various face changes 0 n/a
Mands for missing items and actions: I need ____. Cup/Milk 60% Keep trying hard.
Mands for missing items and actions: Maintenance 100% n/a
Greetings Waving bye, further proximity 60% Doing better.
Listener responding maintenance 100% n/a
Listener responding: What eat and drink BL 90% Great job!
Colors Receptive in messy array (red) 100% Awesome!
Direct instruction emotion Expressive happy BL 60% First time having to expressively identify.
Direct Instruction emotion Maintenance 90% n/a
Shapes Expressive: Rectangle BL 100% Diamond BL 100% n/a
Learning to talk: Repeat what therapist says (meow, moo) 90% Mastered! Way to go!
Gross Motor Imitation: Put arms out to side 60% Keep working!
Fine Motor imitation: Making right fist 70% Keep trying hard.
Beginning parallel play: Rolling ball 90% Amazing rolling back and forth today!
Joint attention duration: Listen to story for 1 minute intervals 80% Good listening and turning pages.
Respond to name: Eye contact in unstructured setting on floor 60% Keep looking when name is called. Sitting at table 2 minute intervals at end of session 100% Amazing sitting at the end!
---------
So, those are some of the skills he is working on in ABA. When I look at his progress, I am proud of how hard he is working. All of these are things that come so naturally to children his age, without intensive instruction Which then makes me feel sad and angry all at the same time. He is going to have to work hard to be able to do some of the simplest things. But, then I think about how easily he's learned his letters and numbers and he can count so well, and I don't feel quite so depressed. It's still a long, hard road for him. But, he is happy and making progress, so I will take what I can get.
Buzzy has been doing a lot better in terms of his articulation and general understandability. (Is that even a word?) Whereas before he would call a banana "na-na" it's now a "ba-na-na". It doens't flow together like an NT child would say it, but it has 3 distrinct syllables, which is good. Also, we call pacifiers around her "buzzifiers". He would call them "fiers". Now he says "buzz-fier" which is also an improvement. "Gro mama" has become (with some reminding) "gro-sssss mama". That last one is one of his catch-phrases. Lots of things around here are gross.
Just a little update on where we are with all the irons I have in the fire...
-Service dog - we will hopefully hear something in between June and December. I am really hoping and praying they will have a match for him. So, that's where that is, and where it will be for the foreseeable future. This is from the place locally. On hold is the place where we would have to fundraise. I am not doing anything with that right now. And hopefully won't have to ever.
-Allergy testing - we received the test kit last week and I just had his blood drawn for that on Monday. We should have results in 2-3 weeks. I wrote on the calendar when we should start getting our undies in a twist about that.
-Pyroluria testing - A friend told me about this issue. The body doesn't remove some metabolic byproducts properly. It can be tested with a simple (ha ha, is anything simple?) urine test. I ordered the test kits for everyone in my family (except my husband) on Tuesday or Wednesday. I definitely meet a lot of the criteria for this particular issue. It is easy to fix with vitamin supplements If Buzzy is positive, I will definitely go over the results with his doctor.
-Baby sister - she is now a year old and is showing a lot of similar delays to her brother, but fortunately not as severe. We will be adding her as a patient to Dr. Usman. I am going to try to get them both in at the same time to avoid multiple 2 hour drives up there. I am heartbroken about this. When I think of my beautiful baby girl having the same problems as Buzzy it's almost unbearable. And how I am I going to give her shots if she needs them? And watch her get her blood drawn? It just sucks. There are no other words for it.
-Urine testing - I am going to try to combine this with the pyroluria testing. For both of them he needs to be off any supplements for a period of time, so I hoping to kill 2 birds with one stone.
-Dr. Goldberg - this is the doctor in California. We have not heard anything back from him. I filled out a bunch of records requests and hope they have made their way to him and we get an appointment scheduled. I am still interested in his opinion, but I am wondering if Dr. Usman can't pretty much do the same thing he does (minus the neuroSPECT). So, given some time, I am less enthusiastic.
-Geneticist - We have an appointment for March 29th. We were originally scheduled for the 22nd, but that had to be changed. Grrr. I still have to fill out release forms and fill out the regular registration forms. I am wondering if they will test me for MTHFR, because I really want to know where the bad copy of the gene came from.
-More therapy: Skill Sprout is very close to being able to provide speech therapy for Buzzy (they do his ABA already). All I need to do is get a hold of my service coordinator and make it happen. Sounds easy, right? Bwhahaha! They will be able to see him twice a week (Mondays and Tuesdays) and back-to-back with his ABA. As long as I can get EI to sign off. See below.
-Did I mention getting a hold of my service coordinator? And how I can't ever seen to be able to? Yeah. She never returns my phone calls any longer. When I last saw her in October, she told me to look out for the transition meeting "at the end of January". I called her mid-January to ask about it. And again at the end of January. And then I pulled out the big guns and had my husband call her. Amazingly (since he called her from work - he's a principal) she answered. Turns out the transition meeting was the following day and she was sure I knew about it. WHAT???!!! Anyhow, I managed to show up and got Buzzy's evaluation for special education services reserved, but just barely. She wouldn't even look at me, and didn't acknowledge my presence. Guilty conscience, I suppose. The thought I may have to deal with more EI crap for the baby makes my butt itch. Ugh. But, the good news is, at least for Buzzy, we will now deal with the special education association for our county. And they seem to return phone calls. Yay.
-Someone I go to church with works as a PT for kids. I have an evaluation set up with them for additional speech services. I called them when I was waiting for Skill Sprout to make things happen. I will take Buzzy to the eval and maybe we can get speech through them, too. Maybe insurance will even pay for it. I don't know. All I know is that I want to keep my options open. And avoid EI as much as possible.
Whew. I think that's all I have on the medical/therapy front.
I want to talk a little about ABA. I meant to stick around last week and watch part of a session, but I can't now remember how I talked myself out of it. So, I am still largely clueless about how the sessions are conducted. However, after every session I receive an email that talks about the skills worked on and the results. I know he is given a task, and he does 10 trials of it. Each trial is recorded as a (+) or a (-). The + is given if he successfully completes the task. If he gets (out of 10 trials) 80% completion, then that's good. But, he has to have an 80% (or higher) success rate, 3 times before a task is considered mastered. And once a task is "mastered" they periodically do it again with him as "maintenance" to make sure the skill is retained.
Here is a recent report:
Responding to nonverbal communication: Get item therapist points to on floor (further away) field of 1 100% Mastered. Way to go!
Same/Different: Give different picture 80% Keep up the good work!
Letters Expressive: O Expressive: P BL 100% BL 100% Awesome!
Letters Maintenance 100% Great work!
Yes/No questions: Do you want this? Yes with object not present 40% Keep working.
Joint Attention: Faces Various face changes 0 n/a
Mands for missing items and actions: I need ____. Cup/Milk 60% Keep trying hard.
Mands for missing items and actions: Maintenance 100% n/a
Greetings Waving bye, further proximity 60% Doing better.
Listener responding maintenance 100% n/a
Listener responding: What eat and drink BL 90% Great job!
Colors Receptive in messy array (red) 100% Awesome!
Direct instruction emotion Expressive happy BL 60% First time having to expressively identify.
Direct Instruction emotion Maintenance 90% n/a
Shapes Expressive: Rectangle BL 100% Diamond BL 100% n/a
Learning to talk: Repeat what therapist says (meow, moo) 90% Mastered! Way to go!
Gross Motor Imitation: Put arms out to side 60% Keep working!
Fine Motor imitation: Making right fist 70% Keep trying hard.
Beginning parallel play: Rolling ball 90% Amazing rolling back and forth today!
Joint attention duration: Listen to story for 1 minute intervals 80% Good listening and turning pages.
Respond to name: Eye contact in unstructured setting on floor 60% Keep looking when name is called. Sitting at table 2 minute intervals at end of session 100% Amazing sitting at the end!
---------
So, those are some of the skills he is working on in ABA. When I look at his progress, I am proud of how hard he is working. All of these are things that come so naturally to children his age, without intensive instruction Which then makes me feel sad and angry all at the same time. He is going to have to work hard to be able to do some of the simplest things. But, then I think about how easily he's learned his letters and numbers and he can count so well, and I don't feel quite so depressed. It's still a long, hard road for him. But, he is happy and making progress, so I will take what I can get.
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