Carter has been quite a bit more unhappy as of late. It's hard to be sure why that is. It could be a new supplement or his hernia or a change in his behaviour or a combination of all of the above.
It's hard to be sure what is wrong when we can't have a conversation with him. He'll answer questions but it's never related to how he is feeling or what is wrong. He hasn't developed conversational skills and doesn't show much interest in that. It's a pretty basic part of life when it comes to how someone is feeling. It's a question people ask of you all the time but not having the ability to answer isn't something people think about. It prevents you from getting to know someone when they can't express what's on their mind or in their heart. It makes it difficult to know if the things we are doing are helpful or not.
The Fake ABA therapist told us we need to teach Carter how to know when he is getting frustrated. She wanted me to work with him and get a list of things that frustrate him. It's not like we can get that information out of him. I can't teach him to tell me and it's not because I haven't tried. That's the biggest problem with the Fake ABA. The therapist never meets your child so they suggest things that don't even make sense. At the time I didn't see how her suggestion was pointless. I really wish I could teach him to tell us what bothers him. He just screams and gets frustrated and even though we try to talk him through calming down he just seems to ignore us.
I'm not sure what we can do to help him in this way. Right now there are more questions than answers.
Saturday, March 3, 2012
Wednesday, February 29, 2012
Where do we go from here?
In recent months I have had thoughts of 'Where do we go from here?'. In the early days with so much therapy and treatment ahead of us there seemed to be limitless options to try. Now it seems like we are almost finishing a lot of the paths that used to be in front of us.
As Carter gets older it's harder to ignore his future and planning for it. Most parents don't need to be so vigilant when it comes to their child's future at age 6. Decisions they make don't seem to be 'make or break' at this point but for Carter and autism it is. Parents are thrown into making these life changing decisions with very little understanding. There aren't too many out there that can guide you and often you don't even know anyone who can. It's a very lonely road and when you realize this you can only count on yourself. It's scary sometimes but in an odd way you get used to it.
All we want is a healthy, happy and fulfilled little boy but most of the time it seems out of reach. Some days the best I can do is just to get through the day. The sad thing is that for Carter that's the best he can do too .. just get through. That's just wrong on so many levels.
As Carter gets older it's harder to ignore his future and planning for it. Most parents don't need to be so vigilant when it comes to their child's future at age 6. Decisions they make don't seem to be 'make or break' at this point but for Carter and autism it is. Parents are thrown into making these life changing decisions with very little understanding. There aren't too many out there that can guide you and often you don't even know anyone who can. It's a very lonely road and when you realize this you can only count on yourself. It's scary sometimes but in an odd way you get used to it.
All we want is a healthy, happy and fulfilled little boy but most of the time it seems out of reach. Some days the best I can do is just to get through the day. The sad thing is that for Carter that's the best he can do too .. just get through. That's just wrong on so many levels.
Friday, February 24, 2012
L-methylfolate and Folinic acid
I was reading a Kirkman's email newsletter regarding recommendations for women who are pregnant and this caught my eye:
"However, because women who have the abnormal MTHFR gene sequence may not be able to efficiently complete the conversion of folic acid to methylfolate, they may have issues if taking only folic acid. In such cases, I recommend that women not take folic acid but rather L-methylfolate or folinic acid or possibly a combination of both. These two forms bypass the faulty MTHFR enzyme and provide the fetus with activated folate."
I know that Carter and Delaney have the faulty MTHFR enzyme. The chances that it came from me are high. Even if it was inherited by Brad the need during my pregnancy to take L-methylfolate and folinic acid was there. Of course I took the regular form of folic acid thinking this was all that was needed. Most people don't realize that not all vitamins are the same and that they come informs that are easier for the body to use when certain conditions exist.
The quote above also caught my attention for another reason. Leucovorin is the brand name of the form of folinic acid that Carter just started taking just over a week ago. Carter was put on L-methylfolate (5-methyltetrahydrofolate) in the fall of 2010 when we found out about the faulty MTHFR enzyme he had. I did see improvements at the time and I did attribute it to that supplement. If the two forms of folic acid -L-methylfolate and folinic acid are required to bypass his faulty MTHFR enzyme then he should have been on it a long time. Even if we don't see a big improvement from the Leucovorin (ie folinic acid) it sounds like he needs it.
We are low on the L-methylfolate and that happened around the same time we started the Leucovorin. We only have 1 pill left and it will be at least a week before I can get more. I wonder what the combination of them for a substantial amount of time will bring. Good thing is that I now understand how they work together and I can use this information when the time comes to decide whether we should continue with the Leucovorin after the initial 3 month trial.
"However, because women who have the abnormal MTHFR gene sequence may not be able to efficiently complete the conversion of folic acid to methylfolate, they may have issues if taking only folic acid. In such cases, I recommend that women not take folic acid but rather L-methylfolate or folinic acid or possibly a combination of both. These two forms bypass the faulty MTHFR enzyme and provide the fetus with activated folate."
I know that Carter and Delaney have the faulty MTHFR enzyme. The chances that it came from me are high. Even if it was inherited by Brad the need during my pregnancy to take L-methylfolate and folinic acid was there. Of course I took the regular form of folic acid thinking this was all that was needed. Most people don't realize that not all vitamins are the same and that they come informs that are easier for the body to use when certain conditions exist.
The quote above also caught my attention for another reason. Leucovorin is the brand name of the form of folinic acid that Carter just started taking just over a week ago. Carter was put on L-methylfolate (5-methyltetrahydrofolate) in the fall of 2010 when we found out about the faulty MTHFR enzyme he had. I did see improvements at the time and I did attribute it to that supplement. If the two forms of folic acid -L-methylfolate and folinic acid are required to bypass his faulty MTHFR enzyme then he should have been on it a long time. Even if we don't see a big improvement from the Leucovorin (ie folinic acid) it sounds like he needs it.
We are low on the L-methylfolate and that happened around the same time we started the Leucovorin. We only have 1 pill left and it will be at least a week before I can get more. I wonder what the combination of them for a substantial amount of time will bring. Good thing is that I now understand how they work together and I can use this information when the time comes to decide whether we should continue with the Leucovorin after the initial 3 month trial.
Tuesday, February 21, 2012
More adventures in yogurt
Great! I figured I had this coconut milk yogurt making all settled and then my last batch didn't work. I'm not sure what went wrong because I did things slightly different than last time. I forgot to include the gelatin and honey at the right time so I had to reheat the milk. I also let it ferment for 24 hours instead of 9. The instructions said that I could let it ferment for 24 hours if I wanted to get rid of the sugar from the honey. All I know for sure is that this is a really frustrating process.
I tried it again and this time I remembered to put the gelatin and honey in at the right time and I fermented it for only 9 hours. I hope next week when I make the next batch that it goes better.
From what I've read coconut milk yogurt does have probiotic effects and that's why I am making it for Carter. I just can't shake this feeling that it isn't the best way for him to get the yogurt he needs. I do feel a lot better about not providing him any mammal milk. I haven't seen any improvement in behaviour or focus since he stopped having goat milk yogurt last week. I wasn't really expecting to see anything but it would have been nice.
I think the only way I'm going to feel better about coconut milk yogurt is if I do more research on the benefits of it.
I tried it again and this time I remembered to put the gelatin and honey in at the right time and I fermented it for only 9 hours. I hope next week when I make the next batch that it goes better.
From what I've read coconut milk yogurt does have probiotic effects and that's why I am making it for Carter. I just can't shake this feeling that it isn't the best way for him to get the yogurt he needs. I do feel a lot better about not providing him any mammal milk. I haven't seen any improvement in behaviour or focus since he stopped having goat milk yogurt last week. I wasn't really expecting to see anything but it would have been nice.
I think the only way I'm going to feel better about coconut milk yogurt is if I do more research on the benefits of it.
Thursday, February 16, 2012
Coconut Milk Yogurt
My first attempt to make Coconut Milk yogurt didn't turn out so well. I googled looking for a recipe and decided for my first attempt that I'd ignore the recipe I had found. I'm not sure what logic I was using when I decided that but that's the way it went.
I found that the coconut milk was much thicker than the goat milk so I figured I could follow the same recipe as I used for the goat milk. The result was that despite fermenting for hours and going into the fridge all I got was watery white water. I wasn't sure what went wrong but it didn't work.
My second try I followed the recipe I found on-line. I wasn't too anxious to use the recipe because it called for additional ingredients such as honey and gelatin. I decided just to go for it and follow the instructions exactly. How did it turn out? The same as before ... a watery white liquid.
I talked to my Mom to see what she thought might be wrong. Despite the fact that she's never made coconut milk yogurt she has made yogurt and has cooked for decades. We brainstormed and she came up with the idea that maybe the gelatin was too old and therefore didn't work. I knew the gelatin I found in the cupboard was at least a year old. There wasn't an expiry date anywhere on the box so you'd think this stuff would last forever. It doesn't. I borrowed her gelatin and tried it all over again. The good news is that it worked. I never would have thought that gelatin would get too old for it to work.
I served it to Carter for the first time this morning. He gave me and the yogurt a look after his first mouth full. He was obviously expecting the same texture and taste that his yogurt usually tastes like. The consistency was like tapioca pudding. He ate it all which I was very pleased by.
I'm hoping my next batch of coconut milk yogurt will go better. I'm just very pleased that I can still provide him yogurt with the probiotic benefits. I'm a little wary that it has the exact same benefits of the goat milk but from what I've read on-line it is supposed to.
Click the blog title for the link to the coconut milk yogurt recipe I used. The comments at the end of the recipe are very helpful for answering any questions you might have.
I found that the coconut milk was much thicker than the goat milk so I figured I could follow the same recipe as I used for the goat milk. The result was that despite fermenting for hours and going into the fridge all I got was watery white water. I wasn't sure what went wrong but it didn't work.
My second try I followed the recipe I found on-line. I wasn't too anxious to use the recipe because it called for additional ingredients such as honey and gelatin. I decided just to go for it and follow the instructions exactly. How did it turn out? The same as before ... a watery white liquid.
I talked to my Mom to see what she thought might be wrong. Despite the fact that she's never made coconut milk yogurt she has made yogurt and has cooked for decades. We brainstormed and she came up with the idea that maybe the gelatin was too old and therefore didn't work. I knew the gelatin I found in the cupboard was at least a year old. There wasn't an expiry date anywhere on the box so you'd think this stuff would last forever. It doesn't. I borrowed her gelatin and tried it all over again. The good news is that it worked. I never would have thought that gelatin would get too old for it to work.
I served it to Carter for the first time this morning. He gave me and the yogurt a look after his first mouth full. He was obviously expecting the same texture and taste that his yogurt usually tastes like. The consistency was like tapioca pudding. He ate it all which I was very pleased by.
I'm hoping my next batch of coconut milk yogurt will go better. I'm just very pleased that I can still provide him yogurt with the probiotic benefits. I'm a little wary that it has the exact same benefits of the goat milk but from what I've read on-line it is supposed to.
Click the blog title for the link to the coconut milk yogurt recipe I used. The comments at the end of the recipe are very helpful for answering any questions you might have.
Sunday, February 12, 2012
Cerebral Folate Deficiency
Last month I sent a blood sample to a NYC lab to test Carter for 'Cerebral Folate Deficiency' (CFD). We already knew he had the MTHFR gene; the official name of this gene is “methylenetetrahydrofolate reductase (NAD(P)H).” This indicates a problem with folate in the body among other things.
I read about 'Cerebral Folate Deficiency' in an 'Autism Science Digest' magazine but didn't think about how it might relate to Carter. The symptoms they listed in the follow up story regarding a family story made it seem like something Carter wouldn't have. Folate-receptor blocking antibodies prevent the transfer of folate from the blood to the cerebral spinal fluid and brain. The levels of folate could be fine in the blood but nowhere else. Our US Doctor, Dr. O'Hara, suggested we test for it and find out the results. We decided to go ahead and test it. I got the results recently but both myself and my Canadian DAN! Doctor read the results wrong. Fortunately I recently had a phone consult with US Doctor and she said the results were positive.
The treatment for this condition is Leucovorin at a high dose such as 20 to 25 mg daily for someone Carter's weight. It requires no folic acid supplementation because it competes with the Leucovorin. No milk in his diet is allowed not even goat milk. We have been making him homemade SCD goat milk yogurt since October 2010. I never felt quite comfortable using goat milk but it's supposed to be better than cow's milk because something about the proteins are different and not so bad for milk sensitive people. Milk actually interferes with the body trying to process the folate when you have this condition.
This is all still very new to me. We're waiting to hear if Carter has to get off the goat milk colostrum he's been on since last fall. I'm assuming he has to stop because it is milk even though it's slightly different. I'm seeing our Canada Doctor tomorrow so hopefully he'll write me the prescription for the Leucovorin. If not, I know there is one waiting for me at a US Pharmacy that Dr. O'Hara called in for me. It's not the ideal way to go but at least I have options. I can't see how our Canada Doctor would object seeing as the research states this prescription is a very low risk.
I've already switched Carter's latest batch of yogurt to coconut milk. The coconut milk is dairy free and certified gluten free so that's good. There is sugar in it but there isn't anything I can do about that. I read that the canned coconut milk might have BPA on the lining of the can so I'd like to avoid that.
Symptoms or when to suspect CFD in an individual with autism:
1. low motor tone
2. developmental delays
3. speech problems
4. mitochondrial dysfunction
5. irritability
The possible outcomes of treating CFD are:
1. improvements in speech
2. improvements in general awareness
3. improvements in attention
4. improvements in focusing
5. improvements in behaviour
Click on the blog title to read the research paper on autism and Cerebral Folate Deficiency.
I read about 'Cerebral Folate Deficiency' in an 'Autism Science Digest' magazine but didn't think about how it might relate to Carter. The symptoms they listed in the follow up story regarding a family story made it seem like something Carter wouldn't have. Folate-receptor blocking antibodies prevent the transfer of folate from the blood to the cerebral spinal fluid and brain. The levels of folate could be fine in the blood but nowhere else. Our US Doctor, Dr. O'Hara, suggested we test for it and find out the results. We decided to go ahead and test it. I got the results recently but both myself and my Canadian DAN! Doctor read the results wrong. Fortunately I recently had a phone consult with US Doctor and she said the results were positive.
The treatment for this condition is Leucovorin at a high dose such as 20 to 25 mg daily for someone Carter's weight. It requires no folic acid supplementation because it competes with the Leucovorin. No milk in his diet is allowed not even goat milk. We have been making him homemade SCD goat milk yogurt since October 2010. I never felt quite comfortable using goat milk but it's supposed to be better than cow's milk because something about the proteins are different and not so bad for milk sensitive people. Milk actually interferes with the body trying to process the folate when you have this condition.
This is all still very new to me. We're waiting to hear if Carter has to get off the goat milk colostrum he's been on since last fall. I'm assuming he has to stop because it is milk even though it's slightly different. I'm seeing our Canada Doctor tomorrow so hopefully he'll write me the prescription for the Leucovorin. If not, I know there is one waiting for me at a US Pharmacy that Dr. O'Hara called in for me. It's not the ideal way to go but at least I have options. I can't see how our Canada Doctor would object seeing as the research states this prescription is a very low risk.
I've already switched Carter's latest batch of yogurt to coconut milk. The coconut milk is dairy free and certified gluten free so that's good. There is sugar in it but there isn't anything I can do about that. I read that the canned coconut milk might have BPA on the lining of the can so I'd like to avoid that.
Symptoms or when to suspect CFD in an individual with autism:
1. low motor tone
2. developmental delays
3. speech problems
4. mitochondrial dysfunction
5. irritability
The possible outcomes of treating CFD are:
1. improvements in speech
2. improvements in general awareness
3. improvements in attention
4. improvements in focusing
5. improvements in behaviour
Click on the blog title to read the research paper on autism and Cerebral Folate Deficiency.
Thursday, February 9, 2012
Fake ABA Update
We've been working with what I call "Fake ABA" therapist since November. I call it "fake" only to differentiate it from the ABA where they actually work directly with Carter. We meet with a therapist once every 2 weeks for 6 months to review recommendations of treatment that Brad and I administer. The "Real ABA" is done by therapist who work directly with Carter.
Some of her recommendations appear to be helping. We have posted rules for Carter on the use of the computer and TV. If he slaps his head, bangs his head or screams he is no longer allowed to use whatever he was using that caused the behaviour. We also have "House Rules" which is for the whole family. I've listed that no head banging, no face slapping and no screaming is allowed in the house. All this has helped us to set expected limits for Carter and I think he is getting use to it. It hasn't "cured" the behaviours but it certainly makes it easier when he knows what is expected of him.
The therapist did provide us with a sheet with different facial expressions that Carter was to learn. After a couple of days Carter got quite upset by the faces. I'm not sure why but it isn't all bad news. It's helped open up the conversation with him about how he is feeling. I ask him why he's angry and it seems to make him stop and think. He isn't able to tell us most of the time why he's mad but it's a start.
The "Fake ABA" ends after 6 months but we can get back on the waiting list if we want. It really is time intensive because we have to meet so often and then when the treatment recommendations are ready it feels like a flood of ideas/work. The problem with having such a short period of time is that it feels like a big rush to get the treatment ideas tried. I hope things get easier and Carter improves with the ideas.
Some of her recommendations appear to be helping. We have posted rules for Carter on the use of the computer and TV. If he slaps his head, bangs his head or screams he is no longer allowed to use whatever he was using that caused the behaviour. We also have "House Rules" which is for the whole family. I've listed that no head banging, no face slapping and no screaming is allowed in the house. All this has helped us to set expected limits for Carter and I think he is getting use to it. It hasn't "cured" the behaviours but it certainly makes it easier when he knows what is expected of him.
The therapist did provide us with a sheet with different facial expressions that Carter was to learn. After a couple of days Carter got quite upset by the faces. I'm not sure why but it isn't all bad news. It's helped open up the conversation with him about how he is feeling. I ask him why he's angry and it seems to make him stop and think. He isn't able to tell us most of the time why he's mad but it's a start.
The "Fake ABA" ends after 6 months but we can get back on the waiting list if we want. It really is time intensive because we have to meet so often and then when the treatment recommendations are ready it feels like a flood of ideas/work. The problem with having such a short period of time is that it feels like a big rush to get the treatment ideas tried. I hope things get easier and Carter improves with the ideas.
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