There was a time when Ayden Jane was tiny that traveling just seemed too complicated. There were the frequent feedings, the supplements, the lack of moving while riding, the worry about new germs, keeping gh cool... When Ayden Jane was tiny, riding long periods in her car seat just seemed to zone her out. She would often get quite warm and somehow inactivity bred inactivity.
I can officially say that at age 2 it has become easier. We traveled quite a bit over the last month. Not by plane or train, just by automobile, but stretches of 3-4hours were the norm. Today we are about 4 hours away. We came to my son's state cup soccer games and I just realized that it is just not a big deal anymore. I have found snacks (mostly nuts) that work well in the car and places were we can stop to eat that work for us. Packing up the supplements and the gh goes quickly and smoothly and it has become just a part of what we do.
As for Ayden Jane, she seems to LOVE to travel. It was very cold today on the soccer field and she just took off playing and having a blast like she had been on those fields all her life. She was climbing a fence, running away, kicking the soccer ball and cheering for her brother. She kept yelling, "hip, hip, hooray!" in the car for seemingly no apparent reason. Just the joy of having her whole family packed in our car with no choice but to be an audience.
At the end of the day, Gary and I just shook our heads and wished we had known how 'normal' she would be. I am glad, at least for now, things are running smoothly. I still worry that it won't last, but I have gotten better about remembering to enjoy these times and trust that when the bumps in the road come, so will new answers.
Saturday, December 12, 2009
Thursday, December 10, 2009
Hooray!
Dr. Miller called today with the results of Ayden Jane's labwork. We were there last week for our first visit and, for me, our first check on all the supplements and a few other things. All the bloodwork looked great and she said she wouldn't change a thing. Hooray for AJ!
Ayden Jane has been developing quite the thrill of the tease lately. Last night she made me laugh at Kayla's (our oldest daughter) basketball game. Ayden Jane was playing around the corner with Mckenna (age 8) because she could NOT sit still on the bleachers and was tired of climbing to the top and back down. They had a couple of basketballs and were very occupied. Next thing I know, Ayden Jane comes flying around the corner and sprints away holding Mckenna's sandal. Of course the next flash was Mckenna, but it was half court before she caught her. Ayden Jane was quite proud of herself and was belly laughing as Mckenna carried her back to me. Luckily Mckenna seems to appreciate her sense of humor.
Ayden Jane has been developing quite the thrill of the tease lately. Last night she made me laugh at Kayla's (our oldest daughter) basketball game. Ayden Jane was playing around the corner with Mckenna (age 8) because she could NOT sit still on the bleachers and was tired of climbing to the top and back down. They had a couple of basketballs and were very occupied. Next thing I know, Ayden Jane comes flying around the corner and sprints away holding Mckenna's sandal. Of course the next flash was Mckenna, but it was half court before she caught her. Ayden Jane was quite proud of herself and was belly laughing as Mckenna carried her back to me. Luckily Mckenna seems to appreciate her sense of humor.
Wednesday, December 9, 2009
Sensory Integration
Sensory integration is a huge part of Ayden Jane. Not all kids with Prader Willi struggle in this area and I have to say I choose this struggle over some of the others. Hopefully that will make sense as I TRY to explain what it is or a least explain what it means for Ayden Jane.
It seems that as Ayden Jane gains skills her little sensory system has trouble integrating all the pieces. Okay, that sounds too medical. Let's start with this. When you and I walk across the room, all sorts of stuff goes on inside of us unnoticed. The feel of our clothes, the feel of the ground on our feet, the air around us, all the things on the path we are walking, balance adjustments, if we are approaching a wall... We automatically sort of ignore what is not necessary, 'turn up what is necessary' and just smoothly process it all. Not so much for kids like Ayden Jane. In her case she just seeks lots of sensory stuff. When she was little it was texture. She would rub things all over her feet, then legs, then belly, then face. As she has gotten older it shows up more in movement. She LOVES to bounce, wrestle, squeeze tight, run, climb, slide, swing... you get the idea. She also loves to carry/wear weighted things. Jen (PT) refers to it as deep input. To me it just seems like she has an itch on the inside she just has trouble scratching. There is a little storm going on in there and for whatever reason she NEEDS the extra deep touch to calm that storm.
An OT or PT who is sensory trained is invaluable for this. We have done many things to meet this need I know now I should have written about it as we went along. We have been about a year now where we go through fairly intense seeking periods right before we gain a new skill. Usually, it takes about 2 weeks. The good news is that the bouncing and running and jumping and.... are all great things for Ayden Jane to be doing. Especially with Prader Willi's slow metabolism lurking around the corner. It is more common that these kids lack the energy to do all the stuff Ayden Jane craves. Amazing Ayden Jane.
Janet
It seems that as Ayden Jane gains skills her little sensory system has trouble integrating all the pieces. Okay, that sounds too medical. Let's start with this. When you and I walk across the room, all sorts of stuff goes on inside of us unnoticed. The feel of our clothes, the feel of the ground on our feet, the air around us, all the things on the path we are walking, balance adjustments, if we are approaching a wall... We automatically sort of ignore what is not necessary, 'turn up what is necessary' and just smoothly process it all. Not so much for kids like Ayden Jane. In her case she just seeks lots of sensory stuff. When she was little it was texture. She would rub things all over her feet, then legs, then belly, then face. As she has gotten older it shows up more in movement. She LOVES to bounce, wrestle, squeeze tight, run, climb, slide, swing... you get the idea. She also loves to carry/wear weighted things. Jen (PT) refers to it as deep input. To me it just seems like she has an itch on the inside she just has trouble scratching. There is a little storm going on in there and for whatever reason she NEEDS the extra deep touch to calm that storm.
An OT or PT who is sensory trained is invaluable for this. We have done many things to meet this need I know now I should have written about it as we went along. We have been about a year now where we go through fairly intense seeking periods right before we gain a new skill. Usually, it takes about 2 weeks. The good news is that the bouncing and running and jumping and.... are all great things for Ayden Jane to be doing. Especially with Prader Willi's slow metabolism lurking around the corner. It is more common that these kids lack the energy to do all the stuff Ayden Jane craves. Amazing Ayden Jane.
Janet
Tuesday, December 8, 2009
Therapies
As a teacher by profession, I always knew early intervention such as exposing kids to lots of books, exploring, talking, touching stuff... all the things typical kids take to naturally was very important. I can say it has now taken on a whole new level of importance. I love our therapists and even though I am a fairly experienced mom with 3 older kids and a special education teacher by training, I depend on them for so much.
Let's start with physical therapy. Our PT is the BEST out there. She is amazing at what she does and she loves Ayden Jane. Honestly, we have become very good friends as we have kids in the same schools.... AJ started PT late compared to most, at about 5-6 months. When she started in PT she could do next to nothing. I remember the early days where we were just trying to get her to reach for a toy. Each week Jen (our PT) would come and work with AJ and we were amazed. It was if she knew where all these secret buttons were on AJ to make her do new tricks. She would give us homework which was great for Ayden Jane and also gave me a mission. It was wonderful to have something to do that actually showed some results. Jen helped to guide us through all the skills AJ needed gain and she was always so positive. We didn't worry about where we were compared to typical kids, just made sure we were moving forward as quickly as possible while laying constant foundations for the next skill.
Most kids also have occupational therapy. In our case, our PT kept an eye on the OT and worked on that as well. I told you Jen is amazing.
Speech therapy is started very young for most kids with Prader-Willi Syndrome. In the begining it is more about feeding skills and mouth stimulation than speech. Ayden Jane saw speech therapists in the children's hospital at MUSC which gave us exercises... and we came home feeding by bottle. We did not start private speech until Ayden Jane was 15 months. At that time her evaluation showed a significant delay in expressive language. She was on target for receptive language. Exciting to say that 10 months later, she has caught up to within normal limits for expressive language as well. Although, I must add that her articulation is quite poor.
Therapeutic horseback riding. Yep. Ayden Jane rides horses. She started at 18 months and rides once a week. It is great and I believe has really helped with her core strength. Besides, she LOVES it.
There are other options out there for therapy including accupunture, sensory integration and others. I will talk about sensory integration in another post, as it has been our biggest mystery.
Janet
Let's start with physical therapy. Our PT is the BEST out there. She is amazing at what she does and she loves Ayden Jane. Honestly, we have become very good friends as we have kids in the same schools.... AJ started PT late compared to most, at about 5-6 months. When she started in PT she could do next to nothing. I remember the early days where we were just trying to get her to reach for a toy. Each week Jen (our PT) would come and work with AJ and we were amazed. It was if she knew where all these secret buttons were on AJ to make her do new tricks. She would give us homework which was great for Ayden Jane and also gave me a mission. It was wonderful to have something to do that actually showed some results. Jen helped to guide us through all the skills AJ needed gain and she was always so positive. We didn't worry about where we were compared to typical kids, just made sure we were moving forward as quickly as possible while laying constant foundations for the next skill.
Most kids also have occupational therapy. In our case, our PT kept an eye on the OT and worked on that as well. I told you Jen is amazing.
Speech therapy is started very young for most kids with Prader-Willi Syndrome. In the begining it is more about feeding skills and mouth stimulation than speech. Ayden Jane saw speech therapists in the children's hospital at MUSC which gave us exercises... and we came home feeding by bottle. We did not start private speech until Ayden Jane was 15 months. At that time her evaluation showed a significant delay in expressive language. She was on target for receptive language. Exciting to say that 10 months later, she has caught up to within normal limits for expressive language as well. Although, I must add that her articulation is quite poor.
Therapeutic horseback riding. Yep. Ayden Jane rides horses. She started at 18 months and rides once a week. It is great and I believe has really helped with her core strength. Besides, she LOVES it.
There are other options out there for therapy including accupunture, sensory integration and others. I will talk about sensory integration in another post, as it has been our biggest mystery.
Janet
Sunday, December 6, 2009
Diet: Frequent High Nutrient Foods
In the thread of still filling in the basics of how we care for and 'do life' with Ayden Jane FOOD in a huge issue. We have chosen not to count calories, but to limit the kinds of food Ayden Jane eats instead. I cannot say that we fully do the Paleo Diet, but maybe our own version which fits our family. The easiest explanation is to say she is grain free/sugar free. Yep, no goldfish, cheerios, bread, crackers, cookies, cupcakes,candy... I know it sounds impossible and we just take it a day at a time, but WOW does it seem to be working.
So what does Ayden Jane eat? Lots of yogurt, eggs, chicken, beef, nuts, vegetables (as many as we can get her to anyway) and fruit. She still eats a crazy mixture of yogurt, flax meal and egg whites with a tad of honey and cinnamon. I have been introduced to almond butter (AJ's favorite), avocado's, and other things I would never have thought to feed my others when they were toddlers.
One big thing we noticed about Ayden Jane is that she will suddenly just run out of energy. I believe it is a hypoglycemia of sorts. It is like she has a small tank which requires specialized fuel. When that fuel runs out she just stops firing. She gets physically tired and mentally slow.
We have chosen to focus on alternatives for Ayden Jane instead of juggling limits. For example, in the church nursery they hand out little cups of goldfish for snack. I send a small plastic bag with almonds in it and request that they give AJ the almonds in her cup. Hopefully as she gets older she will be able to speak up about the things she knows she shouldn't have and chooses the appropriate alternatives. Hey, I know it is a lot to expect, but I figure kids with alergies (like to peanuts) have to do it.
It is a work in progress, but that's what writing this all out is for. I hope that as time goes on I will come across lots of great food ideas.
Janet
So what does Ayden Jane eat? Lots of yogurt, eggs, chicken, beef, nuts, vegetables (as many as we can get her to anyway) and fruit. She still eats a crazy mixture of yogurt, flax meal and egg whites with a tad of honey and cinnamon. I have been introduced to almond butter (AJ's favorite), avocado's, and other things I would never have thought to feed my others when they were toddlers.
One big thing we noticed about Ayden Jane is that she will suddenly just run out of energy. I believe it is a hypoglycemia of sorts. It is like she has a small tank which requires specialized fuel. When that fuel runs out she just stops firing. She gets physically tired and mentally slow.
We have chosen to focus on alternatives for Ayden Jane instead of juggling limits. For example, in the church nursery they hand out little cups of goldfish for snack. I send a small plastic bag with almonds in it and request that they give AJ the almonds in her cup. Hopefully as she gets older she will be able to speak up about the things she knows she shouldn't have and chooses the appropriate alternatives. Hey, I know it is a lot to expect, but I figure kids with alergies (like to peanuts) have to do it.
It is a work in progress, but that's what writing this all out is for. I hope that as time goes on I will come across lots of great food ideas.
Janet
Friday, December 4, 2009
Supplements
This is a big topic for those with Prader Willi Syndrome. Ayden Jane seems to be a 'high responder' to the supplements. I don't think anyone knows why some of the kiddos respond to supplements and others don't, but Dr. Miller refered to Ayden Jane as a 'metabolic kid.' She said it could be tested but that would require taking AJ off of everything and then doing some blood work... Since AJ is doing so great that would just be CRAZY so the fact that she responds is proof enough.
I will try to go through our list and give my rational and timing...
Schiff Liquid multivitamin: I think this was our first supplement and it just made sense that if they are not great at eating and absorbing nutrients I needed a good over all vitamin. We started giving her the 10 mls/day divided morning and night at 9 mo. (remember we did not even get a diagnosis until 8+ months)
CoQ10: At about the same time we started this one. I started with 60 mg then bumped to 120. We noticed a good increase in awake/alertness and talking. We left her with a friend for a bit. Our friend had not yet heard her make any sound and was so excited to tell us when we got back that she had been awake and cooing most of the time. (of course I was sad I missed it!)
Fish Oil: This one I started about 9-10 months. We have always used the Nordic Naturals fish oil. I just trust the brand. We give her one capsule morning and one at night. Now I actually just use the Nordic Naturals Ultimate Omega + CoQ10 and cover both at one time.
Carnitine Fumarate: We started this about 9-10 months just after we got the fish oil rolling. We had to go up very slowly with this one as she struggled with a nasty redness/rash. She continued to become awake and gain skills so I couldn't swear that the carnitine was a part or therapy or other supplements or change in diet (we will get to diet soon). It just seemed that from what I read that the carnitine was a good idea and everything was continuing in the right direction. At this point (25 pounds) we use about 500mg/day but Dr. Miller suspects that is the one dose I am a bit low on.
B-12: Just after Ayden Jane turned 1 there was some talk about B-12 on the holistic pws list serve. I was comfortable with my doses of the others and, of course, wanted to give it a try. It was sort of new so I took the info to my pediatrician and asked if it would be safe. He agreed that B-12 is remarkably non toxic and did not see any way it could hurt her. He did have to add though, he did not see how it would help either. What does he know. Ayden Jane's response was REMARKABLE. Within 2 days she was so loud she was waking up her dad in the next room (he works nights). She also discovered climbing -- up the changing table, into the fire place... There is facinating reading on the Holistic list if you search the archives for B-12 or Ayden Jane. I started very low. 200mcg morning. Then I went to morning and night... Currently we use 750 mcg morning and noon and 1000mcg methylcobalamin at night as well as 750 mcg morning and 750 noon of cyanocobalamin. The 2 just seem to work differently with the cyano form being pure wild energy.
Creatine: At about 15 monts AJ was soooo skinny. The energy from the B-12 made gaining fat impossible, but she was not able to add muscle mass either. I hoped a bump in gh would solve the problem, but it was not enough. Creatine was added to help. It worked, just was tough to get enough fluid in her at the start. After a few weeks she seemed to just look healthier and was getting stronger. We currently give her 1 tsp/day divided into 3 doses.
That is a quick overview and I just do not really have energy to go back into more detail. I will try to do well going forward.
Janet
I will try to go through our list and give my rational and timing...
Schiff Liquid multivitamin: I think this was our first supplement and it just made sense that if they are not great at eating and absorbing nutrients I needed a good over all vitamin. We started giving her the 10 mls/day divided morning and night at 9 mo. (remember we did not even get a diagnosis until 8+ months)
CoQ10: At about the same time we started this one. I started with 60 mg then bumped to 120. We noticed a good increase in awake/alertness and talking. We left her with a friend for a bit. Our friend had not yet heard her make any sound and was so excited to tell us when we got back that she had been awake and cooing most of the time. (of course I was sad I missed it!)
Fish Oil: This one I started about 9-10 months. We have always used the Nordic Naturals fish oil. I just trust the brand. We give her one capsule morning and one at night. Now I actually just use the Nordic Naturals Ultimate Omega + CoQ10 and cover both at one time.
Carnitine Fumarate: We started this about 9-10 months just after we got the fish oil rolling. We had to go up very slowly with this one as she struggled with a nasty redness/rash. She continued to become awake and gain skills so I couldn't swear that the carnitine was a part or therapy or other supplements or change in diet (we will get to diet soon). It just seemed that from what I read that the carnitine was a good idea and everything was continuing in the right direction. At this point (25 pounds) we use about 500mg/day but Dr. Miller suspects that is the one dose I am a bit low on.
B-12: Just after Ayden Jane turned 1 there was some talk about B-12 on the holistic pws list serve. I was comfortable with my doses of the others and, of course, wanted to give it a try. It was sort of new so I took the info to my pediatrician and asked if it would be safe. He agreed that B-12 is remarkably non toxic and did not see any way it could hurt her. He did have to add though, he did not see how it would help either. What does he know. Ayden Jane's response was REMARKABLE. Within 2 days she was so loud she was waking up her dad in the next room (he works nights). She also discovered climbing -- up the changing table, into the fire place... There is facinating reading on the Holistic list if you search the archives for B-12 or Ayden Jane. I started very low. 200mcg morning. Then I went to morning and night... Currently we use 750 mcg morning and noon and 1000mcg methylcobalamin at night as well as 750 mcg morning and 750 noon of cyanocobalamin. The 2 just seem to work differently with the cyano form being pure wild energy.
Creatine: At about 15 monts AJ was soooo skinny. The energy from the B-12 made gaining fat impossible, but she was not able to add muscle mass either. I hoped a bump in gh would solve the problem, but it was not enough. Creatine was added to help. It worked, just was tough to get enough fluid in her at the start. After a few weeks she seemed to just look healthier and was getting stronger. We currently give her 1 tsp/day divided into 3 doses.
That is a quick overview and I just do not really have energy to go back into more detail. I will try to do well going forward.
Janet
Wednesday, December 2, 2009
Appointment with Dr. Miller
We made the trip down to Gainesville to see Dr. Miller. Ayden Jane was great and did a fair amount of showing her stuff. The reason for the trip was not because we were having some sort of problem, just because we had yet to see any specialist who really knows Prader Willi Syndrome. I have been sort of treating her by way of all the things I have researched on my own and I am very aware of my lack of scientific training. After a while, you just need to know that what is going on inside is as great as the outside.
I have to say Dr. Miller is incredibly patient. We did not leave from our 11:30 appointment until 2:30! She had lots of opportunity just to observe Ayden Jane as well as to ask questions about her first 2 years.
So what did she observe? Ayden Jane ran up and down her hallways playing hide and seek. She is quite quick and I had trouble catching her a few times. Dr. Miller was playing with AJ and when she told her, "give me 5" AJ grinned at her, said "no" and pulled her hand back. As our conversation went on and AJ just could not entertain herself with toys anymore, she just used me as a jungle gym. She climbed up me to my shoulders to look out the window and asked to go upside down. Now, to those of you who are not familiar with kids with PWS, they are supposed to run out of energy not get a bad case of the wiggles when couped up too long.
So for me, a huge sigh of relief. It is like a weight lifted that someone who really knows has gone over my list of supplements and dosages and has given me a stamp of approval. I feel great that all she thought might be off was that I might be a tad low with her carnitine. She ran labs for lots of things including: IGF 1 levels, CoQ10, carnitine, vitamin D... I should hear in a few days.
As for details of what, how much, when I started... for all her supplements. I think I will get to that tomorrow.
Janet
I have to say Dr. Miller is incredibly patient. We did not leave from our 11:30 appointment until 2:30! She had lots of opportunity just to observe Ayden Jane as well as to ask questions about her first 2 years.
So what did she observe? Ayden Jane ran up and down her hallways playing hide and seek. She is quite quick and I had trouble catching her a few times. Dr. Miller was playing with AJ and when she told her, "give me 5" AJ grinned at her, said "no" and pulled her hand back. As our conversation went on and AJ just could not entertain herself with toys anymore, she just used me as a jungle gym. She climbed up me to my shoulders to look out the window and asked to go upside down. Now, to those of you who are not familiar with kids with PWS, they are supposed to run out of energy not get a bad case of the wiggles when couped up too long.
So for me, a huge sigh of relief. It is like a weight lifted that someone who really knows has gone over my list of supplements and dosages and has given me a stamp of approval. I feel great that all she thought might be off was that I might be a tad low with her carnitine. She ran labs for lots of things including: IGF 1 levels, CoQ10, carnitine, vitamin D... I should hear in a few days.
As for details of what, how much, when I started... for all her supplements. I think I will get to that tomorrow.
Janet
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