Saturday, April 30, 2016

Latest Running Adventure

So, Ayden Jane has started to talk about running again. She has mostly good memories of last years training and mostly awful memories about how bad she felt running the actual 5k. Running your first long race while recovering from pneumonia is not fun. She ran the first mile okay and then went down hill fast. She was determined to finish, but oiy....

Today we went out a bought new running shoes and then she wanted to pick a training program. She was convinced that the one she did last time was too easy now that she was an experienced runner... such humility.

I was glad to look for something different because the last one was time based and she was so focused on time that her pace was really slow. We googled and a lot of distance based plans seemed to start at a distance that was intimidating for Ayden Jane. I finally came across a plan for kids that seems like a good place to start. Ayden Jane bought in and got super excited. That's really all I need anyway! So here it is:

Run Four Days per Week.

Week 1: Day One: 1/2 mile, Day Two: 1/2 mile, Day Three: 1/2 mil, Day Four: 3/4 mile

Week 2: Day One- 1/2 mile, Day Two: 3/4 mile, Day Three: 1/2 mile, Day Four: 3/4 mile

Week 3: Day One- 3/4 mile, Day Two: 1 mile, Day Three: 3/4 mile, Day Four: 1 mile

Week 4: Day One- 1 mile, Day Two: 1.5 mile, Day Three: 1 mile, Day Four: 1.5 mile

Week 5: Day One- 1.5 mile, Day Two: 2 mile, Day Three: 1.5 mile, Day Four: 2 mile

Week 6: Day One- 1.5 mile, Day Two: 2 miles, Day Three: 1.5 miles, Day Four: 2.25 miles
I know it's shocking to hear that Ayden Jane had me out the door for the first half mile run today. But I was actually quite impressed. We have not 'gone running' since fall and I had no idea how she would do. I guess I shouldn't be surprised that she rocked it. Even after we had taken the dogs for a 2 mile walk earlier. she ran the half mile at a 12 minute mile pace. I think that is a pretty great place to start!

Now, this does not mean that we will only take 6 weeks to get back up to 2 miles. The beauty of it is we can repeat any given week as many times as necessary. And, if we don't get all 4 runs in during a particular week, life will go on...   

Friday, April 29, 2016

Organized and Focused

Organized and focused. That's the best way that I can describe Ayden Jane's brain now.

Okay, so maybe she doesn't present as entirely organised and focused, but the improvement is significant and has lasted long enough that I think it is a lasting improvement. Hooray!

I'll try to explain what I mean by a more organized brain. One sign is she suddenly has the ability to recall/retell things that happened during her day at school. It has been fun. She has told me what happened in class, is able to retell conversations and even give me clear descriptions of examples they did during class time. One of the impressive academic examples was in math. I was checking her math paper. It was a sheet where she needed to measure things around the house. One blank was for measuring in ft and one was for measuring in inches. When she measured the table height she wrote 2 ft in the one blank and 30 inches in the other. I wanted to correct her because when I looked at it, all I could think of was that 2 ft is not equal to 30 inches. Ayden Jane was able to explain to me that she was to round each unit to the nearest unit. So, when she measured the table height in feet, it was closer to 2 ft than 3 ft. She recalled and explained an example from class that day. I was stinkin' impressed! Absolutely a new skill.

I guess I call this a more organized brain because it's like she takes things in and files them so that she can retrieve them and apply them quickly later. There had been a gap in her ability to do this sort of thing. She would absolutely take it all in, but it always seemed like it was a bit of a mess in there. Like she knew it was in there somewhere but couldn't quite get the pieces to line up. Sort of like information is supposed to be filed neatly in the file cabinet but it came in too fast so it began to pile up on the desk. She took it all in, but then could not find it when she needed to. On top of that, she found that the messier her desk got the more stressed she got.

It's a wonderfully strange shift. 

Monday, April 25, 2016


Ayden Jane has always been an independent soul. She is determined and would rather work at something for an eternity than accept help. It can be infuriating, exhausting, exasperating. I am sure it is also a big part of the reason she is doing so great.

Lately, the independence has surged yet again. She has taken full control/responsibility for getting herself together for school and out the door in time to be early for school. Now parts of this are not new. She has been dressing herself, brushing her teeth ... Well, let me just give a run down of our morning routine.

Ayden Jane gets up early. Often before my alarm rings at 6:20. She heads out to the kitchen and grabs a fruit and a piece of cheese. Then she turns on the TV and that's how breakfast begins. As she works on the first part of breakfast, I mix up her avocado and get her supplements together. She finishes all of that by about 7:00. Then off to her room to get dressed while I finish packing lunch and snack. In the past, by the time she got dressed and teeth brushed, I washed her glasses, double checked her back pack, filled her water bottle, found her fitbit and got socks and shoes ready to put on. She would then come and sit down while I 'finished her up'.

Lately, she has taken to getting her own socks and shoes and putting them on picking her snack and getting it in the right compartment of her backpack, filling her water bottle, getting her fitbit herself and washing her own glasses. She is double checking me with her backpack and is just totally on top of things. It's pretty awesome.

At the same time, she has taken to doing her homework entirely independently. Not saying she never asks a question but she knows she needs to do it. She manages her time to be sure it gets done. She gets it out of her backpack, completes it, makes sure her name is on and gets after me for things like permission slips. She is totally on top of it.

I know these things are not earth shattering but they are a difference. They are a kid who is growing up. They show a kid who is not just expressing independence, but is also becoming responsible. I think the recent ability to process things and keep up with things has helped her put the missing piece together. She just doesn't need me or anyone else to do all the organizing any more.

Go Ayden Jane. (but don't grow up too fast)

Friday, April 22, 2016

A Little Too Fast

Ayden Jane is settling in on the b complex. I'd say the best way to describe it all is that her brain is fast. It is fast enough that she has gotten into a bit of a verbal confrontation with another student. Nothing terrible, just that when a comment is made by another student, she is now quick enough to 'come back at them'. She does not know how to do so gracefully yet, particularly with the teenage sarcasm she has grown up with being a youngest. Hopefully this will not become an issue since, up until now, she has been really easy going with peers. Small comments made about any of her quirks have just rolled off or gone right over her head. Not saying that kids have been mean to her in any way, just that kids can be very honest with what they are thinking and are not known for tact. 

Secondly, Ayden Jane's brain is so fast she is now positive she knows more than I do. I mean, she was pretty sure before but now, it's a fact, just ask her. Ugh! Again, it's an adjustment. I'm trying to be patient ....

Thirdly, Ayden Jane's brain is so fast that she now makes mistakes and gets things wrong because she doesn't want to write things down or work things out because, "It's so easy." So, instead of taking a faster, clearer brain and apply it to the steps in a problem, she wants to skip the steps because she is sure that the answer that popped in her head is right. 

So, yes. Her brain is faster but she does not have a handle on how to use it properly! I go back and forth between wanting to strangle her and her new found spark. And feeling bad for her because it must be really be hard to suddenly have a different brain to adjust to.

Thankfully her teacher is patient with the adjustment. 

She is showing some signs that the rewiring is an adjustment. She is seeking sensory input like preferring to spin during recess over play with her friends. Wanting to wrestle at home. Constantly on the go.... But we have seen all this before:) Last night Gary took her out to the ocean and she had a good long boogie boarding session. The ocean has always been great for that sensory piece.

I am still not exactly sure what about the complex is benefitting her. I think that the folate is good, but needs to be supported by the other b's. I also have a feeling there is something to the b6, which she has not recently been getting. I don't have it in me to piece each one out so we are sticking with the complex and choosing to just be happy.

Saturday, April 16, 2016

MTHFR - The Saga Continues

So far what I know is that Ayden Jane rocked on the b-complex. She was on it for a week and going strong. Fun new super powers seemed to abound. Yes, she was getting a bit tired from time to time but the sort of tired that comes from going extra strong and feeling extra good.

Enter the fall. I decided to add an evening dose. Only, I thought that it should be in the form of straight folate. I believe now, that the folate alone was not a good choice. I mean, I can't say for certain ... but it was UGLY.

The chain of events goes like this. Tuesday a week ago the complex came in the mail and I gave it to Ayden Jane in the afternoon. By Wednesday afternoon the great reports started and the super powers began to show. A week later on Tuesday evening I gave Ayden Jane the extra dose of straight folate. Wednesday. eh. Thursday, not great. Friday, complete unraveling. What did it look like? Arguing, agitated, crying, not able to reason, miserable for all...

Needless to say I skipped the dose Friday night and she went to bed EARLY. She slept off a large portion of the issue and I dedicated Saturday to calm, non stimulating activities. AJ stayed in her PJ's until 11. That has never happened. Then we rode bikes to the library and checked out books. (That's about 4-5 miles one way). After a snack we took a long dog walk and talked. There was lots of giggling today which was a total contrast to yesterday. Finally, after supper Ayden Jane just played with her toys and enjoyed a quiet evening. I didn't even turn the TV on.

Now I need to decide where to go from here. I think (and remember, I'm making this up as I go so I could absolutely be wrong) that the straight folate alone, even at a low dose like 400 mcg is just somehow overwhelming to her system. I have begun to attempt to plow through all the info I can find on the subject and I'm amazed at the interactions and balancing act of all of this. It may be that I just stumbled onto a good starting place for Ayden Jane and it would take a lot of work to figure out what the perfect balance of all the b's is. I'm not sure I have strength for that.

Instead, I plan to keep the daily morning B complex that I have started with and possibly add a second complex every other day or so. The idea of 'pulsing' was mentioned in something I read and it somehow made sense. Anyway, so far the b complex does not seem to keep her up at night like it could have the potential to do. I had started it at night and moved it to morning to prep for the added dose so at least I know that much.

Honestly, I felt so horrible last night. I mean, I had dosed her into a miserable frenzy and then sent her off to school to cope with it all. To top it off, I was slow to pick up on what was going on and fussed at her for her poor behavior - which I had caused. One of those parenting lows. I will be glad when this is all sorted out and I am confident that Ayden Jane is running at optimal effectiveness and then I am taking a break from mad scientist/dr mom.

Tuesday, April 12, 2016

In The Lead / Cutting Edge / Leading the Pack

In a lot of ways life tends to be a race or a competition. Not saying that it should be, it just sort of ends up that way. We often strive to be 'In the Lead' or 'Leading the Pack'. Who wouldn't want to be on the cutting edge. It sounds like the perfect place to be.

I am thankful for those who lead the pack. In Prader Willi Syndrome, someone led the way by pushing for and administering gh to their child. Over time, people were willing to push the envelope and start gh even younger. There were no guarantees even if it was all based on the best possible science. Those pioneers proved to be correct and the administration of gh is now standard of care for PWS.

Every clinical trial that comes down the pike requires people to take a step in faith as well as science. Science says if we give a person ___ then it will improve ___. But. Somebody has to be the first to try it and learn as they go how to best dose and avoid side effects and, hopefully, prove it is safe.

Like it or not, Ayden Jane tends to be toward the front of the pack. I tend to seek out and try new things as long as the science makes sense and I can be assured of the safety. She was the youngest and one of the first to go high fat/low carb. We figured it out as we went. We didn't even know that she was in ketosis for years, just liked how her body and brain responded and let Ayden Jane show us the way. So much science to explain it all has caught up and thankfully, we were pretty spot on as it turns out in the end.

We began using B12 as it was just an idea. I remember asking my pediatrician about it and him telling me he could assure me it would not hurt her but he did not expect it to make much of a difference. Oh what a difference it made!

I know there were other things along the way, especially before Ayden Jane was two and we found Dr. Miller, but this MTHFR gene and folate thing leave me feeling the same stress as those decisions in her early years. Read, reread, think, ask questions ... Decide on a plan and a supplement - don't forget to research the source and quality of the one you settle on. Now take your best shot at dosing. Then watch the ticking time bomb. Take great notes along the way for the next person addressing the same issue. Try to interpret what you see and adjust timing, dosing .... all over a fairly long time since each change needs a fair chance of at least a few days or week.

Rinse, repeat... It's feels like being on high alert. Sometimes I really wish there was a manual that would just tell me how to keep Ayden Jane operating at optimum levels. Until then, I guess we will continue writing her manual as we go. Maybe it will help the rest of the pack one day.

Monday, April 11, 2016

Public Service Announcement

This is going to be a bit challenging to write without sounding whiny or being offensive, but here goes.

This week was report card time (again). I have four kids and the first three were always straight A students in grade school. I can honestly say I did not post about their accomplishments, (then again, I don't think facebook was a thing) pay them for good grades or other sorts of things. They whipped through homework, never studied for anything and were always rewarded with good grades for their academic abilities. Notice, they were rewarded with good grades for their academic abilities, not for their hard work. Honestly, school was not hard for any of them. I felt it was their job to do their best in school and for that, I would tote them to the extra curricular's they loved ect.

As school became harder we did a few small things to recognize hard work. Whether it was a particular subject or struggling to manage time or stay organized.

Insert Ayden Jane. I see the constant photos and accolades of parents to who are celebrating their students "hard work" and resulting honor roll. Things are in a whole new light now. Even though I was more of the grouchy parent who just expected that the kids did their best in school, they were always on the list for a reward of some sort. Many of the awards they won had little to do with hard work and a lot to do with being smart kids with all the advantages of a supportive home and a fully working neurological system.

I mean, in all honesty, I think there is a lot more reason to celebrate Ayden Jane's accomplishments of B and C in her academic classes in second grade than there ever was for my other kids straight A's. Well, if you are truly rewarding hard work. I could ask for more accommodations and even modifications to the curriculum in order to improve her grades. I could have her sent to a special needs classroom and given alternate instruction. I could do my best to demand an aide for her.... But all of these things would simply be so that she could get A's and B's. I don't know that she would learn any more than she is now and I am sure she would not be working as hard.

So for the families who's kids truly work hard to receive those good grades than congratulate away. I would, however, say be sure the message to your kids is clear. You are proud of them for working hard, learning to use their talents and being the wonderful little people God made them to be. Sort of like, don't let them get caught up in feeling like you love them and are proud of them because of the grades they achieve. All kids are so much more than grades and eventually, they will come across something that does not come easy and the grade may not be an A.

We all know you will still love them to the moon, just make sure they know.

Saturday, April 9, 2016

MTHFR - Dr Mom

I started the new b complex last Tuesday evening when it came. There have been noticeable improvements every day since. Today, it was on the soccer field. Ayden Jane loves to play soccer, but her response time is often too slow for the game. Sort of like her brain and her feet are really far apart and it takes too long for the message to get to them.

There were times when she was playing that she could shorten this connection and get to the ball, but she had to concentrate really hard. Like you see her determined and trying so very hard. Today, her brain and her feet were just connected. It didn't even seem like it was hard. Don't get me wrong, she wasn't suddenly ready for the Olympics or anything, but everyone noticed the difference.

The other curious thing is the lessened need for snacks. She had lunch at 11:30 between games and she did not come in from playing with the neighbors until after 7:00. I had asked her earlier and she said she just wasn't really hungry. So, after lunch she played soccer game, went swimming, trampolined, ran up and down the street with the neighbor kids, rode the pogo stick... Finally, when she came in she announced she was hungry and tired.

She had a chicken leg, a cheese stick and some fruit. Jumped up from the table and said, "thanks Mom, I'm going to bed."  That was it!

Level energy all day, happy, relaxed, flexible, processing quickly....  I LIKE IT.

Of course, where to go from here is my next challenge...

Thursday, April 7, 2016

MTHFR continued

Ayden Jane tested positive for a heterozygous mutation in two places. I have read a fair amount on what all this means, both very scientific and more anecdotal. In the end, I am still a bit foggy.

What I do know is that when the MTHFR gene mutation occurs it means the bodies ability to convert folic acid into a bioavailble form is down regulated. Typically, a person can work around this without too much struggle but, of course, those with PWS already seem to have something going on with the B12. So, if you need folate to properly use b12, but you aren't good at converting folic acid then you are not getting the full bang for your buck from the b12.

Now history shows how significantly Ayden Jane is effected by b12 and there have been lots of parents who report dramatic effects from it. So, I was scared to mess with this. Seriously, it could be wonderful, or it could make her crazy. Or, it could make her crazy on the way to being wonderful.

I looked at lots of options and settled on the Pure Encapsulations B complex. here. I went with a balanced approach because it just made sense to start there. This complex has 400 mcg of Metafolin. My plan is to start with this complex and then add a bit more of the straight folate very gradually over time.

If you have managed to hang in there this long, now it's going to get good!

Day 1 response: I received a text message from Ayden Jane's swimming coach. She has never texted me before so this blew my mind. Here is our exhange:

 "I wanted to tell you how impressed I was with Ayden Jane today. She listened so well, barely had to ask me twice with instructions, was focused and had no trouble keeping up! Really proud of her hard work."

I responded and thanked her for noticing. That we were tweaking something in the nutritional supplement arena and hopefully we are on to something. Her response:

"You are! I thought you may be trying something. She was a different child and I could tell she loved it and was so proud of herself that she could listen and then do it. It was like her brain was awake!!"

Day 2 response: Substitute in school so not sure how that went. Once home, she had a snack and then hit the ground running. We went to the beach and I offered her supper before the pool. She said she wasn't hungry and opted for pool first. After pool her friends knocked on the door so she chose to put it off again. By this time it was about 7:15. She came in after playing and too a shower. Then chose to walk the dogs because, "I still have wiggles." Finally, by 9:10 she was tired and ready for bed, but still had not eaten ANYTHING since 3:30. She just said she was fine and didn't need anything to eat. 

Now I am guessing that this will not last. That she is sort of on a high from being flooded by stuff she has been managing without. It will take time to adapt to a new and improved typical.

Tuesday, April 5, 2016

Spring Break Lessons

First thing I learned on spring break, hopping from place to place, eating on the go... Ayden Jane is a wonderful traveler. I mean, I don't think 8 year olds are typically known for being wonderful on long car rides but Ayden Jane was great. She played, occasionally asked how much longer, waited really well for whatever the next stop was. Between the ipad, a few babies, a magic tree house book and some coloring books she kept herself as happy as a clam.

As for food, I packed a cooler with a few key items for snacks. We had the coconut bars I make and the warrior chia bars I buy. Both are things she eats regularly. We also had some nuts in nice little prepackaged 100 cal packs which are easy to slip in pockets when heading into places. Honestly, she hardly used them though. I also brought a loaf of bread I make and a small jar of peanut butter so we had an easy meal wherever we landed. Drink wise I put in some coconut water and one of her cups so we could do her half coconut water/half water she likes and keep her hydrated.

Along the way we ate at more fast food spots than I care to admit. Among them, Chik fil a, Wendys, Taco Bell, McDonald's and Moe's. Ayden Jane is great at just choosing decent options at each and being happy with that. Early on I was worried about weight gain during out trip. I mean we were still trying to shed the last of the weight gained when I went away. I am thrilled to report that when she stepped on the scale back at home she was at a great spot. In fact, if anything she lost a half pound or so!

We did have one rough day with one MAJOR fit. I think it was a bit of my fault though. She had gone up to bed and as she climbed in she told me she wanted a coconut bar because her "tummy growled". She uses this term occasionally and it must be uncomfortable. I told her I did not think she needed one and she should try to go to sleep. Well, the tantrum that ensued was a doozy. I realized by her lack of control and ability to reason she likely needed the snack, but now was pretty well backed into a corner. I couldn't set the precedent that if she tantrums she gets food.

I rode it out until she was reasonable again and we decided a better way to deal with this if it happens. She agreed to trying to go to sleep for 5 minutes and that if she can't, she can come tell me she tried but thinks she really needs a snack. I left her in bed, telling her that if she could not go to sleep to come ask me with good manners for a snack. I didn't hear from her until morning.

We had one other tough spot when she overflowed a toilet (the handle sticks) and had to freak out over something that was not her fault. You know, something I caused so she did so about clothes.... She recovered very quickly and we went on with our day. In the end, I'd say 2 meltdowns on a week long trip is pretty decent for an 8 year old, PWS or not.

Monday, April 4, 2016

Spring Break - Part 3

We left South Carolina intending to hit Carowinds on our way home. Ayden Jane is just barely tall enough to ride ALL the rides there but had never actually even seen giant roller coasters. We had told her all about it and had originally planned to hit it on the way up, but with Mckenna suffering a nasty high ankle sprain in a soccer game we decided to push it to our last stop.

Around Tuesday, as we were in Wheaton the weather in Charlotte looked terrible for Friday. Dreaded thunder and lighting - nothing stops a roller coast quite like that! I kept watching the weather and finally told Ayden Jane I did not think it was going to work. That we would have to take her there another time. She was sad, but honestly I think she dealt with it really well. Probably because Noah was there when we looked at the weather and he just has a way of convincing her in a way that there is no arguing. It's like magic.

We left Wheaton with the weather still not looking good, but I kept an eye on it. I decided we did not need to make it all the way to Charlotte, just close enough that if the weather looked doable in the morning we could get there. I was exhausted but the weather looked passable so Mckenna and I talked it over and we went for it. Ayden Jane was so excited.

Little did I know that it was one of the best decisions ever. There were no crowds, no lines, no waiting on even the giant coasters. Ayden Jane LOVED every thrill ride in the place. She truly proved to be as fearless as we thought as it come to motion. She wanted more speed, more spinning, more heights.

Mckenna showing Ayden Jane the way.

Ayden Jane's favorite. With no lines she just rode it over and over and over.

Heading up for a giant free fall.

So tall and she LOVED it.

Sunday, April 3, 2016

Spring Break - Part 2

After spending some great time in Indianapolis we headed on to Wheaton (a Chicago suburb). Noah is in school there at Wheaton College, and we enjoyed hanging with 'Uncle Pete, Aunt Fo and H'. Great friends from my college days and their cool little dude. It was a crazy busy week for them but they were so kind to let us crash their home.

We enjoyed catching up on life, letting Ayden Jane and H play, hitting local parks and, of course, Chicago pizza. Noah came by and we just relaxed for a bit.

Our other highlight during our time there was going downtown. It was high on Mckenna's list of things to do and although we didn't quite get to see everything she wanted, we were treated to much more than we expected. We had a wonderful day at Millennium Park, saw The Bean and enjoyed the Chicago Institute of Art. I was pretty lost but Mckenna was right at home and knew more than I realized about artists ect. Ayden Jane was her typical curious self and wanted to take it all in. I'm sure we only scratched the surface of what there is to see and learn there but it was great. We also managed to squeeze in a nice walk down Michigan Ave and view of the lake front.

Ayden Jane and K renewed their friendship. There is something really cool about having friends that share your medical baggage, but with K it is even more than that. They share an awareness of the syndrome and how well they are doing with it. It was funny to listen to them talk numbers of carbs and diet ideas like it's typical conversation for a couple of kids to be having. K is a great kid and I have no doubt he will have Ayden Jane's back for many years to come as they continue to figure this thing out.

This family... words will never be able to express what they have done for Ayden Jane over the years. They not only have the brains and background to further understanding and treatment for PWS. They worked incredibly hard to improve life for K and have shared all they have learned openly, and they care so genuinely for others who walk the same life. Their family has sacrificed time, energy and finances in ways I am sure we will not ever comprehend and the benefits to many, many future families are great.

Saturday, April 2, 2016

Spring Break 2016 - Part 1

Wow. What a week we have had. Mckenna, Ayden Jane and I left Pawleys last Friday in search of adventure for spring break. We covered a lot of miles, enjoyed the company of friends along the way and had a grand time.

First up was a quick visit to get a glimpse of a sweet baby boy. It was brief but a very important part of our mission. Next stop was Indianapolis to visit with the amazing Walker clan!

We piled in on them for Easter fun. Egg hunting, a trip to the zoo - what more could we want? 

Ayden Jane loves knowing other families who have kids with PWS and eat like she does. She has a heart for the ones younger than her and asks often about how they are doing. So fun when we get to visit and she sees for herself the amazing things kids like E are doing. It is also a treat to just do life for a day or two with families who totally get the quirks life with PWS throw at you. Types of food, the need to eat when it's time, reminding to drink, even those darn shots at night. Talk of supplements and doctors and new possibilities on the horizon is good for the soul.

It was a fabulous way to start of an amazing week with my two awesome roadtripping partners.