So. Wow. A lot has happened since I last wrote in here almost a year ago.
Bella is now over a year old - still very naughty but so, so, so good with Kaiden. He does not like it when she's in her kennel and now mostly uses appropriate dog toys to play with her. He also tattles on her when she has something she's not supposed to have, which to me is hilarious! Sometimes I watch those two play together and just shake my head in both amusement and exasperation.
Milestones. Kaiden is working on emotions - they are emerging within him and we capitalizing on this to work with his speech device and more comprehension. Last year the work with the speech device was mostly labeling objects and this year, we're actively working on communication with others. Kaiden is on his 4th new private speech therapist - HealthReach has a high turnover rate and speech therapists don't seem to ever stay long. He's really responding well to our newest one, so hoping he stays. But, soon enough we'll be moving and have to find all new therapists.
The farm. Nick has been working so hard on the clean-up and it is almost ready for building. We're in process of revising house plans now. Still planning to break ground this spring.
At the last writing, we had just tried resveratrol with Kaiden. I can't really say it didn't go well . . . while it didn't bring cognitive benefits and it did cause some major overnight bedwetting for the kid who never wets his bed - it came with an insight. Last year, and then this year, I've noticed certain fruits worked against being toilet trained. The resveratrol put things into perspective. It's high in phenols. I knew Kaiden was sensitive to something that had twice before caused an ugly groin rash and that somehow GABA reversed it. Well, here we are: a phenol sensitivity.
I wrote this out a few nights ago and put it on my FB page just for a place to put it. I spent hours researching phenols, histamine, and GABA and put it all together into what makes sense to me. I'm not entirely sure it's correct, but it's my current line of thought:
Okay, so I think I have this down. Sort of. There’s this enzyme called Phenol Sulfur Transferase (PST) that converts sulfur to sulfate and breaks down phenols. It is responsible for the PST sulfation pathway, which is a detoxification pathway. If a person’s PST is ineffective (not working properly) it does not sufficiently break down phenols. This creates a buildup of phenols. Now, if you also have a phenol sensitivity, when you have a buildup of phenols you get a buildup of histamine. High histamine levels are responsible for what we think of as allergic reactions: Kaiden’s groin rash & his constantly runny nose. High phenol levels are also responsible for skin conditions (Kaiden's groin rash) and bedwetting, among other reactions. A person can also have a histamine intolerance.
The things to reduce phenol & histamine buildup:
1. avoid foods high in phenols & salicylates (a subset of phenols). There are thousands of different phenols. Phenols include antioxidants like resveratrol (found in higher concentrations in red grapes and dark colored berries) among others. Raw honey, raw apple cider vinegar, oregano oil, colloidal silver (made using Chenopodium murale leaf extract) are all high in antioxidant phenolic compounds. Kaiden has a sinus infection as a result of a cold and his constantly runny nose – can’t treat the sinus infection with my usual holistic methods because all of my usual methods are high in phenolic compounds, which are causing the groin rash and bedwetting because his phenol/histamine levels are already too high.
2. Take an enzyme supplement to help break down phenols – Kaiden takes two of these enzymes – VitalZymes Complete and No-Fenol. With the super high phenol/histamine levels, these are not enough to break down new phenols coming in via food and do not break down the backlog of phenols.
3. Supply the body with more sulfate. More sulfates enhances the detoxification process by increasing the amount of toxins going out. You can give oral supplements, but the gut doesn’t absorb sulfate ions very well, so it’s more effective to bypass the gut and apply to the skin instead. Can use Epsom salts (magnesium sulfate) by way of dissolving some in water – either via a bath or applied to the skin as a spray or mixed into lotion.
I have found that certain phenols (not all) cause more problems than others. And they don’t all give him the same reaction. Resveratrol causes bedwetting, but does not cause a groin rash, as we have witnessed since pottytraining at age 6 1/2. I don’t know which phenolic compound(s) causes the groin rash from everything else. Something of note – not all fruits cause a groin rash or bedwetting – even some that are high in phenols. Some fruits cause a rash only, and some cause bedwetting only. And some fruits that are high in phenols cause no negative reaction at all.
How does GABA play into this? There isn’t a lot of research about GABA and histamine, but what research there is, shows they work together. One of the things GABA does is acts against histamine/histamenergic neurons and inhibits an anaphylactic reaction (overreaction from histamine). Somehow, and I couldn’t find research showing how, but somehow GABA pushes out/lowers histamine levels. Twice before, GABA has been proven to rid Kaiden of the groin rash. Each time, we get a couple of rash-free years before it either slowly creeps back, or in this most recent case, Kaiden got an overdose of phenols (thanks to a new supplement (GlutaClear) containing broccoli extract), which drove his phenol & histamine levels up, resulting first in the rash and then later, bedwetting.
Kaiden is an under-methylator where phenols are concerned. Methylation starts a reaction (a huge variety of normal reaction in the body) and losing/low methylation can stop those reactions, and do things like deactivate enzymes. As I understand it, if your methylation is low, and you are phenol sensitive, your PST enzyme is deactivated resulting in a buildup of phenols, which results in a buildup of histamine, which results in negative/”allergic” reactions.
One thing I do not understand is when too much No-Fenol is given, it also causes bedwetting. High levels of resveratrol cause middle of the night bedwetting - huge soakers. Lower levels, but still too high, of resveratrol causes middle of the day minimal leakage from both front and back. Too much No-Fenol causes early morning minimal leakage upon waking, but does not cause middle of the night soakers. Different probiotics also cause bowel control issues. Ones that are dairy-derived cause daytime minimal leakage, whereas Soil Based Probiotics eliminate daytime leakage.
As a side note, Kaiden also appears to be an over-methylator where B vitamins (both methylated and non-methylated B vitamins) are concerned, which is not related to the phenol/histamine issue. For the most part he does not tolerate being supplemented with B vitamins. Both types of B vitamins (methylated & non-methylated) result in constant screeching and increased other verbal stims. However, Kaiden does need methylfolate (the methylated version of folic acid, vitamin B9) in order to complete a methylation cycle which prevents his primary lymphedema from flaring up. Iodine also plays a role in keeping his lymphedema at bay. Both methylfolate and iodine must be given - not just one or the other, as we have experienced.
Some sources:
http://www.enzymestuff.com/
http://www.enzymestuff.com/methylation.htm
http://www.enzymestuff.com/epsomsalts.htm
http://www.enzymestuff.com/nofenolfile.htm
http://www.sleepreviewmag.com/2015/08/gaba-may-act-chemical-brake-preventing-histamine-wakefulness-intense/
http://www.hypersomniafoundation.org/gaba-and-histamine-work-together-to-control-wakefulness/
It's really too bad the GlutaClear was too high in phenols for Kaiden because it was doing wonderful things for his cognition and general behavior. I hated to take him off of it, but the rash got ugly-bad very quickly. Since I'd seen that particular rash twice before, I knew it was the same thing. Then I started digging into it more - hence the above paragraphs.
Right now we are in the midst of treating (once again) with high doses of GABA to clear out the backlog of phenols/histamine - however it works. All I know is, it works for Kaiden. I hesitated for a few months to do the high dose of GABA because it usually comes with negative behavioral side effects - angry, frustrated, violent, sleepless. I wanted to see if we could get the levels down just by severely reducing his intake of high-phenol foods. Then we tried the No-Fenol which helps to break down incoming phenols (via food); it wasn't enough.
On Saturday, I gave him about 1/4 - 1/3 of a capsule of GABA. It took 4 hours to see the behavioral effects. He was super hyperactive, but happy. Constantly on the move, very physically sensory seeking, wanted lots of roughhousing. That night I dissolved some Epsom salts (magnesium sulfate) into water, mixed it with lotion (of course, the stuff I make) and applied it to his skin. He slept like a rock! I'd read somewhere (from another parent, I think) that the effects of giving mag sulfate this way last about 8 - 9 hours, so in the morning he got another lotion-applied dose, then given another dose of GABA. In 4 hours, I saw an uptick in activity, but it was much less hyper than the previous day. Win! Some days he's more aggressive than others, but doing this is a necessary evil to get his levels back to normal. And so we continue, until the rash is completely gone and then a few days beyond that. Then we'll start testing out high-phenol foods again.
Other News:
In August I filed a complaint against our school district for the cuts they made to Extended School Year (ESY) services. The district's then-director of Special Services (who has since moved on to another district) claimed the district "used to offer the Cadillac of programs" and that they were "just getting back to state minimums". Problem was, they cut FAR back from not only their program, but also the state minimums! They claimed students had to show academic regression in order to qualify for ESY. Their other needs didn't matter. As I found out later, IEP's were being marked "No" for ESY instead of "Inadequate Information" during the school year (Kaiden's included!), so students were automatically denied ESY services. Because their IEP's said No. (Kaiden's was marked No in January and I didn't catch it.) And not only that - since so many students were (wrongly) denied services the district also cut all therapy services normally provided with ESY, citing "low need".
There were a lot of angry parents (and upset staff, knowing they couldn't help the children over the summer) but no one did anything about it beyond complain to each other. In August, after chatting with a friend about the situation, I called PACER out of curiosity and asked if the school district could make these cuts, and if I or my child had any rights in the matter. PACER sent me a copy of the MN statute on ESY (https://www.revisor.mn.gov/rules/?id=3525.0755) and encouraged me to file a complaint against the district with the Minnesota Department of Education (MDE). And so I did. And I tried hard to get other parents to do so as well, but found that while most of them were upset, most did not want to get involved! Some feared retaliation from the district, or didn't feel they had the time to file a complaint, or just didn't want to be bothered with it. FYI, you have 1 year from the date of the "incident" to file a complaint.
Somebody asked me, "How does the district get away with this?" My answer was, "Out of all of the parents in this district that have special needs children affected by these cuts, NOBODY came forward. And in truth, I sat back too, waiting for somebody else to come forward and do something."
I later found out there are 400 students with special needs in our district who were affected by these cuts. That's FOUR HUNDRED students with parents who did not come forward, for their own reasons. Except me.
Did you know that filing a complaint is very easy? Seriously all you do is fill out your contact info, write a tiny blurb about the situation you feel is wrong, and then a tiny blurb saying how you'd like it resolved. And then sign and mail two copies - one to your district, one to your Department of Education. Yes, it really is that simple.
From there, MDE received my letter of complaint and contacted me a few times to get further information. They handled the investigation. I sat back and waited; my part was done, except MDE did ask me to try to get at least one other parent to come forward and talk about the same complaint (not file the same complaint - just talk!) so they could investigate the complaint as systemic rather than individual. Thankfully someone did.
In November, MDE found the district to have committed 4 violations in relation to ESY and set a course of action to correct the issue. MDE determined the root cause of the problem to be a new PowerPoint training aid with erroneous information. This training aid was used to train staff on how students qualify for ESY; and as you might have guessed, this training aid wrongly cited only academic regression as the qualifier, disregarding all the other ways students can qualify according to the MN statute. The school district has since filed an appeal, upset with both the way MDE handled the investigation and also the outcome of the investigation. The whole matter has now been turned over to the Minnesota Attorney General, who will make the final ruling. And so I wait some more. In the meantime though, the district must comply with the corrective course of action set by MDE. This means Kaiden had a new IEP meeting and we talked at length about him attending ESY and making damn sure that "Yes" box was checked. I also demanded (as was my right) for Kaiden to receive all of the services he missed out on, not attending ESY, and was able to choose the timeframe in which he received those extra services (which he is now getting).
It's funny; some community members assumed I was angry with the teachers, paras, and therapists over this ESY issue, which couldn't be further from the truth. They are the ones who want only to help students, and they can't do that if they are given incorrect information. They want to see students succeed. So far I've managed to get one article in the local paper; working on another and also a couple of local news interviews. My goal is to empower parents - when you feel your child isn't getting the education they deserve, you absolutely CAN do something about it.
Wednesday, February 8, 2017
Saturday, April 23, 2016
April 2016
So the first piece of news (and if you're your friends with me on Facebook or follow me on Instagram @greenchildcreations) you'll know that we now have a new puppy named Bella (short for Portabella since she'll be my mushroom hunting partner haha, she even has a mushroom shaped ID tag!). She is now 3 1/2 months old and full of sass. Fearless, and quite possibly part flying squirrel, this little lady is quite entertaining!
When Lola passed, I asked her to either find a healthy body and come back to us, or have a hand (paw?) in picking out a new doggy friend for us. After the disastrous rescue dog experience, and deciding to get a puppy instead, I had enough nudges to feel the right choice was going back to Lola's breeder. She had two litters of pups on the way, and we had a lengthy discussion of what our needs are with Kaiden. After the litters were born, she was able to narrow it from 7 female pups, down to two, that she felt would best meet our needs - calm, laid back, super sweet, low to medium energy. Upon meeting the pups, I didn't know which to choose at first. These two pups were equally happy to play with us . . . one looked similar to Lola with the head shape and big ears, and the other had much shorter ears and shorter snout. Both were calm and sweet. I spent a good half hour with them trying to decide. (Lola was easy; she picked us.) Then . . . one of the puppies tripped and fell flat on her face. My first thought was . . . THAT'S my girl, right there. Then later that pup crashed into some other things while playing . . . Lola was not a graceful dog by any means and crashed into EVERYTHING. I tried very hard to keep an open mind and not let my wish for Lola to come back influence my decision, but I started to feel that this clumsy puppy was probably the one we would take home. And then I noticed the other girl was more timid - when Kaiden pushed a large Rubbermaid container across the cement floor, making a lot of loud noise, the timid pup hid in a corner while the clumsy pup wasn't bothered by the noise. Kaiden makes a lot of loud noise; so this helped clinch my choice. This fearless clumsy pup happened to be the one that looked like Lola.
I don't know if it's just because I stay at home now instead of working outside the home, so I have more time to train her, or maybe she's just the smartest pup we've ever had - she is so smart, and so fearless, and she is very good with Kaiden. Even at this young age, she understands she cannot play rough with him like she does with us. He is slowly letting her into his personal space - not always, but sometimes, and that's progress. He is, however, constantly trying to share ALL his toys with her. While he's very rarely ever wanted to share his toys with anyone, let alone a puppy, and I think it's super sweet of him to want to share . . . but it's a battle because he is just not getting the fact that she is a puppy and will chew and destroy anything he gives her. It's not like she doesn't have toys of her own; he will even go get her toys if I ask him to and he enjoys throwing her toys for her to chase.
Back to Lola - so far I've had one person tell me she is definitely not Lola reincarnate, and two people tell me she definitely is Lola reincarnate. Interestingly, it seems like every time I start thinking about Lola, Bella seeks me out. And either she's just super smart (well, rottweilers ARE smart! haha) or possibly maybe she "remembers" some things. I also find it interesting that Lola's main health issue was her heart, and Bella has a tiny white patch on her chest (however, that can be common of any dog breed). Bella looks like adult Lola, but comparing their puppy pics, they are very different (she actually looks more like our male, Carl (RIP), did as a pup), and she often lays on my feet when I prepare food just as Lola did. But then . . . Lola LOVED her walks, and Bella is like, "really, Mom? Do I HAVE to go on a walk?" Lola wasn't a chewer as a puppy and Bella chews on everything! There are enough differences, but just enough similarities that I wonder. Then there were the two lucid dreams in which Lola visited and communicated with me after she passed but before Bella was born. I'm just trying to keep an open mind. Someday I may know, or I may not. Either way, Bella is a good addition to our family. Fun, fearless, friendly, loving, super sweet. (And naughty!)
On to Kaiden - we're winding down the school year - Kaiden's first year of full time, all-day school as a kindergartner. He has made a lot of progress, especially social progress - but he is not yet ready for inclusion into his mainstream class. He still has issues with personal space, and gets agitated when there's too many people around - acts out by hitting other students. :( The funny thing is I thought I'd be fighting the school to do inclusion, but it's the opposite. They are very big on inclusion, but Kaiden's just not ready (or willing).
We are of course still working closely on Kaiden's TNI supplement routine. Today we started Resveratrol, which is supposed to help the brain use acetylcholine more efficiently before it naturally breaks down. Some swear by it for cognitive benefits, some for motor skills. We'll see if it does anything for him . . . or not. Trial and error, as always.
When Lola passed, I asked her to either find a healthy body and come back to us, or have a hand (paw?) in picking out a new doggy friend for us. After the disastrous rescue dog experience, and deciding to get a puppy instead, I had enough nudges to feel the right choice was going back to Lola's breeder. She had two litters of pups on the way, and we had a lengthy discussion of what our needs are with Kaiden. After the litters were born, she was able to narrow it from 7 female pups, down to two, that she felt would best meet our needs - calm, laid back, super sweet, low to medium energy. Upon meeting the pups, I didn't know which to choose at first. These two pups were equally happy to play with us . . . one looked similar to Lola with the head shape and big ears, and the other had much shorter ears and shorter snout. Both were calm and sweet. I spent a good half hour with them trying to decide. (Lola was easy; she picked us.) Then . . . one of the puppies tripped and fell flat on her face. My first thought was . . . THAT'S my girl, right there. Then later that pup crashed into some other things while playing . . . Lola was not a graceful dog by any means and crashed into EVERYTHING. I tried very hard to keep an open mind and not let my wish for Lola to come back influence my decision, but I started to feel that this clumsy puppy was probably the one we would take home. And then I noticed the other girl was more timid - when Kaiden pushed a large Rubbermaid container across the cement floor, making a lot of loud noise, the timid pup hid in a corner while the clumsy pup wasn't bothered by the noise. Kaiden makes a lot of loud noise; so this helped clinch my choice. This fearless clumsy pup happened to be the one that looked like Lola.
I don't know if it's just because I stay at home now instead of working outside the home, so I have more time to train her, or maybe she's just the smartest pup we've ever had - she is so smart, and so fearless, and she is very good with Kaiden. Even at this young age, she understands she cannot play rough with him like she does with us. He is slowly letting her into his personal space - not always, but sometimes, and that's progress. He is, however, constantly trying to share ALL his toys with her. While he's very rarely ever wanted to share his toys with anyone, let alone a puppy, and I think it's super sweet of him to want to share . . . but it's a battle because he is just not getting the fact that she is a puppy and will chew and destroy anything he gives her. It's not like she doesn't have toys of her own; he will even go get her toys if I ask him to and he enjoys throwing her toys for her to chase.
Back to Lola - so far I've had one person tell me she is definitely not Lola reincarnate, and two people tell me she definitely is Lola reincarnate. Interestingly, it seems like every time I start thinking about Lola, Bella seeks me out. And either she's just super smart (well, rottweilers ARE smart! haha) or possibly maybe she "remembers" some things. I also find it interesting that Lola's main health issue was her heart, and Bella has a tiny white patch on her chest (however, that can be common of any dog breed). Bella looks like adult Lola, but comparing their puppy pics, they are very different (she actually looks more like our male, Carl (RIP), did as a pup), and she often lays on my feet when I prepare food just as Lola did. But then . . . Lola LOVED her walks, and Bella is like, "really, Mom? Do I HAVE to go on a walk?" Lola wasn't a chewer as a puppy and Bella chews on everything! There are enough differences, but just enough similarities that I wonder. Then there were the two lucid dreams in which Lola visited and communicated with me after she passed but before Bella was born. I'm just trying to keep an open mind. Someday I may know, or I may not. Either way, Bella is a good addition to our family. Fun, fearless, friendly, loving, super sweet. (And naughty!)
On to Kaiden - we're winding down the school year - Kaiden's first year of full time, all-day school as a kindergartner. He has made a lot of progress, especially social progress - but he is not yet ready for inclusion into his mainstream class. He still has issues with personal space, and gets agitated when there's too many people around - acts out by hitting other students. :( The funny thing is I thought I'd be fighting the school to do inclusion, but it's the opposite. They are very big on inclusion, but Kaiden's just not ready (or willing).
We are of course still working closely on Kaiden's TNI supplement routine. Today we started Resveratrol, which is supposed to help the brain use acetylcholine more efficiently before it naturally breaks down. Some swear by it for cognitive benefits, some for motor skills. We'll see if it does anything for him . . . or not. Trial and error, as always.
Sunday, December 27, 2015
TNI - what a commitment!
TNI is a commitment.
It's a long learning process to which there is no manual.
Targeted Nutrition Intervention utilizes vitamin/mineral/herbal supplements to support a child's (with Down Syndrome) cognitive health, process, and progress. I don't want to get into the premade blends from a couple of companies because they don't apply to us; Kaiden's supplemental needs are unique to him.
In October, we started him on a little extra magnesium because now that he's getting adult teeth, I wanted to see if we could cut down the occasional teeth grinding and magnesium is known to be good for that. He was already getting some magnesium in one of his other supplements - which helped a lot with the teeth grinding - and I wanted to boost the magnesium with out boosting the rest of the ingredients. There are different types and we are using Reacted Magnesium. With lots of trial and error (and patience!!) we found his optimal dosage, which happens to be 3 little taps out of the capsule. It's such a little amount, I think it comes out to be approximately 3mg, when the recommended dosage (for an adult) is 235mg. Not very easy to measure out - I just have to eyeball it.
I did not expect it to have such an effect on his behavior! Any more than those 3 little taps and he doesn't sleep at night. Any less, and his behavior in the afternoons can get pretty wild. While we had resolved the potty-ing issues at school, his behavior in the afternoons was still more wild, less focused and I knew we could do better, but I didn't expect the magnesium to be the answer. I can only speculate why he was acting wild and unfocused in the afternoons at school, and I imagine stress/anxiety from November (see below) had a lot to do with it. Now that we've found his optimum dosage, his behavior has completely changed. He is calm and focused; if the other children in the classroom act out, he does not join in or engage; he stays out of it and prefers to do his schoolwork. Sometimes he prefers his schoolwork over any movies they show! He is much more social. And at home, he's become so much more cuddly, loving, and all-around fun to be around.
This, after all the years of button-pushing, boundary-finding, challenging behavior typical of any child . . . on one hand, we joke that I need to drug my child to love me (LOL!!). But really - it's been amazing to see this transformation.
November was very difficult for Kaiden, and me too. We lost my beloved Lola at age 7. The transition from always having her, to no dog, was hard on him. We tried to introduce a rescue dog - she did very well with myself and Kaiden, but her fear of big, tall men got the better of her and after a week she very aggressively went after Nick while his back was turned. That wasn't a pretty situation nor one I ever want repeated, so with that, she went back to her foster family and we've been dog-less since. Another transition from dog to no-dog, poor kid. We decided to wait for a puppy - and in early December, I told Kaiden we'd go meet some puppies after the holidays and see if we could find one who would be a good friend for all of us. Later that evening, he said via his speech device, "I want dog please." I may have cried a little. :)
Now, the holidays can be challenging for us - I don't like to turn down family invitations but sometimes the environment is just not a good one for him and there's nothing the host/hostess can do about it. Kaiden needs to be able to have a quiet space away from the noise - not that he always needs it, but it needs to be there if he DOES need it. And when not at home, he tries to go outside to escape but doesn't remember to ask for help putting coat/shoes on and doesn't always remember to ask for permission, either. So if his needs can't be met, we have to leave - or we just don't go in the first place depending on the environment. And now that he relies so much on his iPad for his sensory needs (auditory as well as using the LAMP app like his speech device) I worry that it's going to get stepped on and broken when he sits with it on the floor with so many people around. Not anyone's fault; it's just the way it is.
This year - with such improved behavior on the magnesium - well I should say, with reduced stress/anxiety, he was able to progress with a lot of other things - I was blown away by him this year. At school, they have a program where all students are sent home with gifts so all children have a present to open if the parents can't afford it - he was sent home with SIX gifts! One of them was making noise inside the wrapping. He wanted at it because he knew exactly what it was - it was the same toy that's his favorite at my mom's house. He even insisted on putting those gifts under the tree, pushing the big bag across the floor himself; then he helped me wrap presents for everyone else (really just constantly trying to hand me the scissors and paper, LOL). This was the first year we put presents out before it was time to open them and he did GREAT! I told him he had to wait until Thursday (Xmas Eve) when Dad got home from work to open them. After the initial putting them under the tree, he did not touch them, not even once. And when time came to open them, he knew which ones were his and was able to physically open two of them all by himself with no help - awesome for the kid with very low motor skills! At the inlaws, gift opening is a free-for-all, which of course he loved. At my mom's, everyone takes turns and after a couple of rounds, he did well with the turn-taking. He doesn't typically show a lot of facial expressions and it was so heartwarming to see his surprise and pleasure at the gifts he received.
With all the progress he's made just in the last month I can't wait to see what 2016 will bring.
It's a long learning process to which there is no manual.
Targeted Nutrition Intervention utilizes vitamin/mineral/herbal supplements to support a child's (with Down Syndrome) cognitive health, process, and progress. I don't want to get into the premade blends from a couple of companies because they don't apply to us; Kaiden's supplemental needs are unique to him.
In October, we started him on a little extra magnesium because now that he's getting adult teeth, I wanted to see if we could cut down the occasional teeth grinding and magnesium is known to be good for that. He was already getting some magnesium in one of his other supplements - which helped a lot with the teeth grinding - and I wanted to boost the magnesium with out boosting the rest of the ingredients. There are different types and we are using Reacted Magnesium. With lots of trial and error (and patience!!) we found his optimal dosage, which happens to be 3 little taps out of the capsule. It's such a little amount, I think it comes out to be approximately 3mg, when the recommended dosage (for an adult) is 235mg. Not very easy to measure out - I just have to eyeball it.
I did not expect it to have such an effect on his behavior! Any more than those 3 little taps and he doesn't sleep at night. Any less, and his behavior in the afternoons can get pretty wild. While we had resolved the potty-ing issues at school, his behavior in the afternoons was still more wild, less focused and I knew we could do better, but I didn't expect the magnesium to be the answer. I can only speculate why he was acting wild and unfocused in the afternoons at school, and I imagine stress/anxiety from November (see below) had a lot to do with it. Now that we've found his optimum dosage, his behavior has completely changed. He is calm and focused; if the other children in the classroom act out, he does not join in or engage; he stays out of it and prefers to do his schoolwork. Sometimes he prefers his schoolwork over any movies they show! He is much more social. And at home, he's become so much more cuddly, loving, and all-around fun to be around.
This, after all the years of button-pushing, boundary-finding, challenging behavior typical of any child . . . on one hand, we joke that I need to drug my child to love me (LOL!!). But really - it's been amazing to see this transformation.
November was very difficult for Kaiden, and me too. We lost my beloved Lola at age 7. The transition from always having her, to no dog, was hard on him. We tried to introduce a rescue dog - she did very well with myself and Kaiden, but her fear of big, tall men got the better of her and after a week she very aggressively went after Nick while his back was turned. That wasn't a pretty situation nor one I ever want repeated, so with that, she went back to her foster family and we've been dog-less since. Another transition from dog to no-dog, poor kid. We decided to wait for a puppy - and in early December, I told Kaiden we'd go meet some puppies after the holidays and see if we could find one who would be a good friend for all of us. Later that evening, he said via his speech device, "I want dog please." I may have cried a little. :)
Now, the holidays can be challenging for us - I don't like to turn down family invitations but sometimes the environment is just not a good one for him and there's nothing the host/hostess can do about it. Kaiden needs to be able to have a quiet space away from the noise - not that he always needs it, but it needs to be there if he DOES need it. And when not at home, he tries to go outside to escape but doesn't remember to ask for help putting coat/shoes on and doesn't always remember to ask for permission, either. So if his needs can't be met, we have to leave - or we just don't go in the first place depending on the environment. And now that he relies so much on his iPad for his sensory needs (auditory as well as using the LAMP app like his speech device) I worry that it's going to get stepped on and broken when he sits with it on the floor with so many people around. Not anyone's fault; it's just the way it is.
This year - with such improved behavior on the magnesium - well I should say, with reduced stress/anxiety, he was able to progress with a lot of other things - I was blown away by him this year. At school, they have a program where all students are sent home with gifts so all children have a present to open if the parents can't afford it - he was sent home with SIX gifts! One of them was making noise inside the wrapping. He wanted at it because he knew exactly what it was - it was the same toy that's his favorite at my mom's house. He even insisted on putting those gifts under the tree, pushing the big bag across the floor himself; then he helped me wrap presents for everyone else (really just constantly trying to hand me the scissors and paper, LOL). This was the first year we put presents out before it was time to open them and he did GREAT! I told him he had to wait until Thursday (Xmas Eve) when Dad got home from work to open them. After the initial putting them under the tree, he did not touch them, not even once. And when time came to open them, he knew which ones were his and was able to physically open two of them all by himself with no help - awesome for the kid with very low motor skills! At the inlaws, gift opening is a free-for-all, which of course he loved. At my mom's, everyone takes turns and after a couple of rounds, he did well with the turn-taking. He doesn't typically show a lot of facial expressions and it was so heartwarming to see his surprise and pleasure at the gifts he received.
With all the progress he's made just in the last month I can't wait to see what 2016 will bring.
Friday, October 16, 2015
October 2015
I am so proud of Kaiden! Over the summer we potty trained using the techniques laid out in the book "Oh Crap, Potty Training!". I HIGHLY recommend this book! Follow the steps, it really does work. I went into it with no expectations because I honestly didn't know if Kaiden knew he was peeing when he was peeing, and whether or not he could even feel it as he has some delayed sensations. He did great though, and by the end of summer he was well on his way. He still needs physical assistance with his clothing and aim, thanks to motor apraxia, but he's even waking me at night when he needs to go. There's still the few and far in between accidents, but 99% of the time, we are accident-free.
Kaiden started kindergarten this fall. It's been a huge transition for him as it's full days, 5 days per week! When I was in kindergarten, it was full days, every other day, while other schools did half days 5 days per week. He was doing really well with being toilet trained, but of course a heavy schedule like that set him back a bit.
He began refusing to use the toilet in the afternoons, leading to several wetting accidents within a 2 hour time frame. We thought at first it might be defiance since we weren't having this issue at home. His teacher and I came up with a plan: I should come in just before 1pm (the accidents were starting about then) and take him to the bathroom myself. What we found was that it wasn't defiance at all; he was getting so stressed out with the long days that by the time afternoons rolled around he couldn't control holding/releasing - like his torso was all tensed up. The first day I came in, I gave him the option of going to the bathroom at school and then continuing on to his favorite class (gym), or coming home and then go to the bathroom. He chose to go home - and went straight to the bathroom of his own accord, but could not "go" for another hour; he was just too stressed. So, I came in every day for the next week - and each day that week he went to the bathroom for me, and then happily went to gym class. It was like seeing Mom for a couple minutes in the afternoon was enough of a break from school and he was able to function again. The next week he made it until Thursday on his own before getting too stressed, so Friday I came in to help him. And . . . the principal had a problem with it. She called me at home and told me it was not necessary for me to come in since the teacher and paras were well trained in handling all sorts of potty issues. I explained to her that Kaiden was getting too stressed out and having me there for a couple minutes helped and that I was going to do everything I could to set him up for success whether she liked it or not. We had a short week this week, and he'll have a short week next week, so we're hoping that will get him over the stress-hump and go back to being accident free - because again, he has not been having accidents at home or when we're out in public.
With that and another phone call I was also told about this new data privacy policy; it was explained to me that the school does not want parents in the self-contained classrooms (like the Functional Skills room that Kaiden's in) because the parents might compare their kid's abilities to that of another disabled child - or something to that effect. Many parents are being hit with this policy and so far we know by way of the lawyers already contacted - schools cannot legally deny parents access to their child in the classroom despite this new policy. It sounds like the schools are misinterpreting the policy, but since I was never provided with a copy of it, I really don't know. I do know they can't deny me access to Kaiden, so I'm not worried about it. If they don't like me coming into the classroom when he needs my assistance, well, that's just too damn bad.
Ok, potty training, check. Onto the next subject. :) Kaiden's had a couple growth spurts this summer (I am VERY thankful for Kohl's return/exchange policy!) and is also sporting two brand new adult teeth! He still hasn't lost the pertinent baby teeth but they're on their way out. He's just so darn cute with his new teeth!
And I learned something else over the last few days - either Kaiden can't tolerate hemp protein powder, or I forgot his taurine in last week's supplement batch. Or both. His behavior at school last week became horrible. The kind of behavior where I'm embarrassed as a parent . . . he was hitting the other kids - even took his snack plate and hit a couple kids in the head with it! And singled out another girl, sneak-attacking her from the side. Awful behavior. :( He wasn't doing this at home, only at school. We talked to him about it several times, but to no avail. Then when making his new supplement pack (I make them in 8 day packs) I realized the taurine had gotten buried in the back of the cupboard . . . and I bet I forgot to add it last week. So I made sure it was in there . . .and that day, both his teacher and his outside-the-school speech therapist reported he was like a different kid. More focused, no hitting. It could have been either the hemp or the missing taurine or both - I'd made a batch of his "cookies" (really banana pancakes but he calls them cookies!) last week with hemp protein powder for some added nutrition since the growing season is over - previously I'd been adding fresh leafy greens), so both things happened at the same time. I suspect it was moreso the missing taurine, but I'm not willing to experiment and see which one it was.
And now onto the exciting news from the last post - we purchased an old, abandoned farmstead - 5+ acres with a nice woods, way out in the middle of nowhere. :) Nick has been working very hard at clearing the property since most of it has been untouched for probably a decade. The house on it has to come down; it's unlivable. We plan to build a house within 2 years. Kaiden will have lots of room to run, I'll have mushrooms to pick and lots of room to garden, and Nick will be able to hunt right in our own backyard. :)
Kaiden started kindergarten this fall. It's been a huge transition for him as it's full days, 5 days per week! When I was in kindergarten, it was full days, every other day, while other schools did half days 5 days per week. He was doing really well with being toilet trained, but of course a heavy schedule like that set him back a bit.
He began refusing to use the toilet in the afternoons, leading to several wetting accidents within a 2 hour time frame. We thought at first it might be defiance since we weren't having this issue at home. His teacher and I came up with a plan: I should come in just before 1pm (the accidents were starting about then) and take him to the bathroom myself. What we found was that it wasn't defiance at all; he was getting so stressed out with the long days that by the time afternoons rolled around he couldn't control holding/releasing - like his torso was all tensed up. The first day I came in, I gave him the option of going to the bathroom at school and then continuing on to his favorite class (gym), or coming home and then go to the bathroom. He chose to go home - and went straight to the bathroom of his own accord, but could not "go" for another hour; he was just too stressed. So, I came in every day for the next week - and each day that week he went to the bathroom for me, and then happily went to gym class. It was like seeing Mom for a couple minutes in the afternoon was enough of a break from school and he was able to function again. The next week he made it until Thursday on his own before getting too stressed, so Friday I came in to help him. And . . . the principal had a problem with it. She called me at home and told me it was not necessary for me to come in since the teacher and paras were well trained in handling all sorts of potty issues. I explained to her that Kaiden was getting too stressed out and having me there for a couple minutes helped and that I was going to do everything I could to set him up for success whether she liked it or not. We had a short week this week, and he'll have a short week next week, so we're hoping that will get him over the stress-hump and go back to being accident free - because again, he has not been having accidents at home or when we're out in public.
With that and another phone call I was also told about this new data privacy policy; it was explained to me that the school does not want parents in the self-contained classrooms (like the Functional Skills room that Kaiden's in) because the parents might compare their kid's abilities to that of another disabled child - or something to that effect. Many parents are being hit with this policy and so far we know by way of the lawyers already contacted - schools cannot legally deny parents access to their child in the classroom despite this new policy. It sounds like the schools are misinterpreting the policy, but since I was never provided with a copy of it, I really don't know. I do know they can't deny me access to Kaiden, so I'm not worried about it. If they don't like me coming into the classroom when he needs my assistance, well, that's just too damn bad.
Ok, potty training, check. Onto the next subject. :) Kaiden's had a couple growth spurts this summer (I am VERY thankful for Kohl's return/exchange policy!) and is also sporting two brand new adult teeth! He still hasn't lost the pertinent baby teeth but they're on their way out. He's just so darn cute with his new teeth!
And I learned something else over the last few days - either Kaiden can't tolerate hemp protein powder, or I forgot his taurine in last week's supplement batch. Or both. His behavior at school last week became horrible. The kind of behavior where I'm embarrassed as a parent . . . he was hitting the other kids - even took his snack plate and hit a couple kids in the head with it! And singled out another girl, sneak-attacking her from the side. Awful behavior. :( He wasn't doing this at home, only at school. We talked to him about it several times, but to no avail. Then when making his new supplement pack (I make them in 8 day packs) I realized the taurine had gotten buried in the back of the cupboard . . . and I bet I forgot to add it last week. So I made sure it was in there . . .and that day, both his teacher and his outside-the-school speech therapist reported he was like a different kid. More focused, no hitting. It could have been either the hemp or the missing taurine or both - I'd made a batch of his "cookies" (really banana pancakes but he calls them cookies!) last week with hemp protein powder for some added nutrition since the growing season is over - previously I'd been adding fresh leafy greens), so both things happened at the same time. I suspect it was moreso the missing taurine, but I'm not willing to experiment and see which one it was.
And now onto the exciting news from the last post - we purchased an old, abandoned farmstead - 5+ acres with a nice woods, way out in the middle of nowhere. :) Nick has been working very hard at clearing the property since most of it has been untouched for probably a decade. The house on it has to come down; it's unlivable. We plan to build a house within 2 years. Kaiden will have lots of room to run, I'll have mushrooms to pick and lots of room to garden, and Nick will be able to hunt right in our own backyard. :)
Monday, June 15, 2015
June 2015
A couple of months ago (April, I think) we added in Vitamin B12 to see if it would boost Kaiden's speech. It was an oral supplement - wanted to try oral and see if there were any benefits before going back to the B12 shots - I mean, why stick the kid if I don't need to, right? Well, sad to say not only did the oral B12 not boost speech, over time he has become less focused and had more acting-out behaviors like hitting people (for FUN, not out of frustration), he's more twitchy, screeches more, and generally being a crazy little wild man - and he's stopped making full sentences on his speech device, back to one word at a time. So, knowing something had to be changed with his supplement routine, I removed the B12 to see if that was the problem. And in the 4 days since, the hitting has been much less, the twitchiness has gone down a notch, and the screeching has been a wee tiny bit less. I think it's too soon to nail it down as the B12, but right now I'm pretty sure it was the culprit. I wish the answers were easy rather than all this trial and error stuff.
Since January Kaiden has gained another 3lbs, and it's just amazing to me when I pick him up, there is just so much more meat on his bones compared to a year ago. I can't believe how much he's grown in the last year!
What's been really fun to watch since December with beginning imaginative play - he's starting to want to interact with other children - and even children he doesn't know, rather than just sitting on the sidelines watching! And interacting in a nice, playful way, not just going up to someone and flat out whacking them . . . which unfortunately, he has done several times. He likes to see how people react to it . . . and so many people think it's "cute" because he has Down Syndrome, so they let him get away with it, which reinforces the bad behavior. It's been a struggle. It's not just Down Syndrome though . . . LOL, I certainly remember one family member when they were a small child and the terrible behavior they thankfully outgrew . . . the parents tried so hard to stop the bad behaviors but this kid just wasn't having it no matter what they did.
That's it for now . . . we do have an exciting update coming but I want all the i's dotted and t's crossed before we announce that one. :)
Since January Kaiden has gained another 3lbs, and it's just amazing to me when I pick him up, there is just so much more meat on his bones compared to a year ago. I can't believe how much he's grown in the last year!
What's been really fun to watch since December with beginning imaginative play - he's starting to want to interact with other children - and even children he doesn't know, rather than just sitting on the sidelines watching! And interacting in a nice, playful way, not just going up to someone and flat out whacking them . . . which unfortunately, he has done several times. He likes to see how people react to it . . . and so many people think it's "cute" because he has Down Syndrome, so they let him get away with it, which reinforces the bad behavior. It's been a struggle. It's not just Down Syndrome though . . . LOL, I certainly remember one family member when they were a small child and the terrible behavior they thankfully outgrew . . . the parents tried so hard to stop the bad behaviors but this kid just wasn't having it no matter what they did.
That's it for now . . . we do have an exciting update coming but I want all the i's dotted and t's crossed before we announce that one. :)
Friday, January 16, 2015
Jan 2015
Posts are getting hard to title. They're all updates. Maybe it just makes sense to put the date.
News: Kaiden can now use his speech device to say a few FULL sentences (regarding food!) by himself. Mostly he needs to hold my hand in order to touch the buttons he needs - hey, whatever works. :) And the speech device is now 100% paid for, so that's pretty awesome too!
After an IEP this week, where concern was expressed about Kaiden not being able to isolate letters and the words "low IQ" and "I know you think he can read, but . . ." came up . . . let's just say I wasn't a happy Mama. Remember with motor apraxia, if the thought originates in his head, he can point to what he wants. In order for Kaiden to be able to point to what YOU want him to answer, he needs support under his wrist. So yesterday and today, I set him up with flashcards and asked him to point to things. He could do it, all of it, as long as he held my finger in a certain way. I don't mean he pointed with my finger, I mean he held my finger and extended his own finger to point - he just needed that little bit of physical support. I took seven videos. Kaiden knows his letters, numbers, shapes, colors, objects . . . no problem. We even did a few apps, and no problem. As long as he has that little bit of physical support! I really don't give a crap if it's an autism thing or a motor apraxia thing . . . he needs that support, and that's just how it is for right now.
Kaiden's total height gain since we started the whole kelp/thyroid thing last Jan= 5 1/8"! And he's up to just over 32lbs. And all it turned out to be was managing his sleep cycle in combination with a new supplement (Cellular Energy) for mito function + a low dose of GABA.
So on to my new thought . . . here we are and it's winter. By now, Kaiden's lymphedema should be in full swing. But it's not. It flared up early - in October. Treated it with cold laser therapy and it went down in a few weeks. With the fluctuations in temps, some really frigid subzero temps, his fingers should be swollen and red right now. But they're not. So . . . I wonder why? We recently did another CBC and it showed Kaiden needed methylfolate. We added it, and noticed it his verbal speech increased a little bit (hey, any bit is good!) but it also brought back screeching. Sigh. But . . . . his lymphedema has not returned. Are they related? I don't know. All I could find was this study that asks if methylfolate in combination with another medication causes lymphedema. Well, being as Kaiden reacts opposite to so many things . . . is there a remote possibility that he needs methylfolate to keep his lymphedema at bay, or is this just a coincidence?? Who knows. Something to keep on the back burner and watch this winter and in the coming years.
And the best news for last: on Dec 17th (if you remember, it was December 17th, 2009, that Kaiden said his first and last word, Mama, before the seizures robbed him of his speech), well this December 17th 2014 Kaiden began imaginative play! He's been playing with trucks, trains, dolls, and even doing some imitation activity! I can't wait to see what this year will bring!
News: Kaiden can now use his speech device to say a few FULL sentences (regarding food!) by himself. Mostly he needs to hold my hand in order to touch the buttons he needs - hey, whatever works. :) And the speech device is now 100% paid for, so that's pretty awesome too!
After an IEP this week, where concern was expressed about Kaiden not being able to isolate letters and the words "low IQ" and "I know you think he can read, but . . ." came up . . . let's just say I wasn't a happy Mama. Remember with motor apraxia, if the thought originates in his head, he can point to what he wants. In order for Kaiden to be able to point to what YOU want him to answer, he needs support under his wrist. So yesterday and today, I set him up with flashcards and asked him to point to things. He could do it, all of it, as long as he held my finger in a certain way. I don't mean he pointed with my finger, I mean he held my finger and extended his own finger to point - he just needed that little bit of physical support. I took seven videos. Kaiden knows his letters, numbers, shapes, colors, objects . . . no problem. We even did a few apps, and no problem. As long as he has that little bit of physical support! I really don't give a crap if it's an autism thing or a motor apraxia thing . . . he needs that support, and that's just how it is for right now.
Kaiden's total height gain since we started the whole kelp/thyroid thing last Jan= 5 1/8"! And he's up to just over 32lbs. And all it turned out to be was managing his sleep cycle in combination with a new supplement (Cellular Energy) for mito function + a low dose of GABA.
So on to my new thought . . . here we are and it's winter. By now, Kaiden's lymphedema should be in full swing. But it's not. It flared up early - in October. Treated it with cold laser therapy and it went down in a few weeks. With the fluctuations in temps, some really frigid subzero temps, his fingers should be swollen and red right now. But they're not. So . . . I wonder why? We recently did another CBC and it showed Kaiden needed methylfolate. We added it, and noticed it his verbal speech increased a little bit (hey, any bit is good!) but it also brought back screeching. Sigh. But . . . . his lymphedema has not returned. Are they related? I don't know. All I could find was this study that asks if methylfolate in combination with another medication causes lymphedema. Well, being as Kaiden reacts opposite to so many things . . . is there a remote possibility that he needs methylfolate to keep his lymphedema at bay, or is this just a coincidence?? Who knows. Something to keep on the back burner and watch this winter and in the coming years.
And the best news for last: on Dec 17th (if you remember, it was December 17th, 2009, that Kaiden said his first and last word, Mama, before the seizures robbed him of his speech), well this December 17th 2014 Kaiden began imaginative play! He's been playing with trucks, trains, dolls, and even doing some imitation activity! I can't wait to see what this year will bring!
Sunday, December 28, 2014
A guest post :)
I did part of a guest blog post over on Down Syndrome: A Day to Day Guide. The first half of the article is regarding seizures, our part is about half way thru!
Seizures in the Down Syndrome Population: Information and Natural Treatment
Seizures in the Down Syndrome Population: Information and Natural Treatment
Subscribe to:
Posts (Atom)