Nathaniel had a fairly good day of eating today per Oma/Opa's report - getting back to pre-NG tube meals/snacks. I, however, arrived home post a long nap and a 4 hour interval between meals and he was CRANKY. I continue to wonder if he is just not getting proper hunger signals and/or does not interpret them well. He had also just bumped his lip, so I had poor timing today. Despite protests that he didn't want to eat, he easily ate 1/2 of a peach prior to insisting on a walk with Oma. We came home and had some "quiet" relax time with his favorite pals and started out dinner ok, but the crankiness returned. So we ended up leaving the table, calming down on the couch, and spending a chunk of time doing some CST (craniosacral therapy) on his head and diaphragm. I have been doing CST treatments to his tummy for a long time and at times it was the only thing that would get him back to sleep when he would wake up distressed (this was a period of time from about 14-18 months when he would wake at night and stay awake for 1-2 hours in what appeared to be pain/discomfort). Tonight it worked again. He rose after several minutes of my hands on his head and moved from distress to happiness and proceeded to eat a grown-up sized handful of his new favorite crackers (Club House Minis - which are thankfully high in calories). We also discovered this evening that he likes the Boost Essentials Vanilla Flavor (Yeah - 240 calories per container). One other benefit to the CST, another bowel movement. It seems lately half of his meals are interrupted by tummy issues in the need to move his bowels. His bowel movements slowed when he was on a liquid diet and since starting to eat more again have increased in frequency - such fun for a little man. He is so much happier when it is done too. I think we'll be back to daily CST sessions during stories at bedtime or our "witching hour" quiet time.
The other thing I decided to try tonight was kinesiotape for his tummy. I have been using kinesiotape with a few different students every week for the past year and a half and have used it on myself and Anthony for various muscle issues, but have not used it with Nathaniel until today. I decided it is worth a try to see if it assists with any digestive issues he may be having, but they have not found medically. I am also hoping it will maybe do something for appetite stimulation.
We will see how it all pans out, but so far tonight I'm hopeful. As one of my fellow positive-minded co-workers says, "it never hurts to try another tool from your toolbox". If any of my other therapist friends/readers have other ideas from their toolboxes to share, please let me know. Thankfully Nathaniel is an easy-going child and very willing to let mommy try new "tools" with him.
Wednesday, August 31, 2011
Tuesday, August 30, 2011
Feeling Discouraged, But Following My Gut
By the end of the year, I think we are going to feel really "doctored out" in this house. I know I will at least be sick of all the statements from the insurance companies and subsequent bills to sort and decifer. We have weight checks every week, plus all of my OB checks, plus some other consultations for myself and Anthony, along with Nathaniel's consultations, we feel like we are at one doctor or another every day. We have to be close to reaching Nathaniel's out of pocket max for the year at any time and mine may very well be met before this new one arrives as well, so maybe that will make things less overwhelming.
Another appointment today and as I suspected everything in his ears and throat look good. He continues to drop in weight back down to his old percentile, but is still over a pound more than he was at his second birthday (not quite 8 weeks ago). At the weight gain rate he had prior to the NG tube he would not have been to his current weight for another 10-12 weeks.
Here is the discouraging part ... he is starting to get back to his pre-NG tube eating patterns. He is much more pleasant and less averse at meals. He has been eating regular snacks and meals (with some behaviors here and there - but that may also be part of him being a determined 2-year-old) and I am starting to feel like we are getting closer and closer to the same number of calories through oral intake as he was getting via NG tube. I am not meticulously counting, but eyeballing it all. Yet he continues to lose. My gut says we have to stick out other interventions for a while to see if we can get him eating well again and to see if we can pack in whatever calories we can to get him to at least maintain and go back to his old weight gain pattern before putting a G-tube into his litte tummy. He has been so closely watched with his weight for 1 1/2 years and this is the first time we are dealing with a weight loss. It is just so discouraging to not know what the best course of action is for one's own child. And on top of that to have no real reasons behind the slow weight gain (though now the loss can probably be attributed to his eating patterns having changed).
My gut says ... stick it out and try the less invasive strategies that have been working. It also says we should try the idea given to us by Nathaniel's physician today ... acupuncture. He is scheduled for an appointment next Wednesday. I am hopeful to just try another less invasive method of addressing the weight concern (since height, head size, and development are not concerns in this picture). I am also anxious to see when we may be able to get into feeding clinic so that I as a mom can have support from therapists and can back off the therapist role and let someone else take the lead with that. I can't wait for that extra stress to be taken away from me and the added support headed in our direction.
Another appointment today and as I suspected everything in his ears and throat look good. He continues to drop in weight back down to his old percentile, but is still over a pound more than he was at his second birthday (not quite 8 weeks ago). At the weight gain rate he had prior to the NG tube he would not have been to his current weight for another 10-12 weeks.
Here is the discouraging part ... he is starting to get back to his pre-NG tube eating patterns. He is much more pleasant and less averse at meals. He has been eating regular snacks and meals (with some behaviors here and there - but that may also be part of him being a determined 2-year-old) and I am starting to feel like we are getting closer and closer to the same number of calories through oral intake as he was getting via NG tube. I am not meticulously counting, but eyeballing it all. Yet he continues to lose. My gut says we have to stick out other interventions for a while to see if we can get him eating well again and to see if we can pack in whatever calories we can to get him to at least maintain and go back to his old weight gain pattern before putting a G-tube into his litte tummy. He has been so closely watched with his weight for 1 1/2 years and this is the first time we are dealing with a weight loss. It is just so discouraging to not know what the best course of action is for one's own child. And on top of that to have no real reasons behind the slow weight gain (though now the loss can probably be attributed to his eating patterns having changed).
My gut says ... stick it out and try the less invasive strategies that have been working. It also says we should try the idea given to us by Nathaniel's physician today ... acupuncture. He is scheduled for an appointment next Wednesday. I am hopeful to just try another less invasive method of addressing the weight concern (since height, head size, and development are not concerns in this picture). I am also anxious to see when we may be able to get into feeding clinic so that I as a mom can have support from therapists and can back off the therapist role and let someone else take the lead with that. I can't wait for that extra stress to be taken away from me and the added support headed in our direction.
Sunday, August 28, 2011
Brushing Protocol Round 2
Being a pediatric OT has obviously affected the way that I parent, but more and more I am realizing how many things I have done for/with Nathaniel due to my education and work. I have obviously analyzed him subconsciously since the moment he was born with OT eyes underneath my mothering ones. I analyzed his movement and sensory development as well as every other part of his development on a daily basis. I watched his primitive reflexes come and go and made sure he was on track in every part of development as the days went along. I mean, that is my job, to assist other parents in helping their children move through all the stages of development. It was almost done without noticing or thinking some of the time.
So from day 1, I positioned him in certain ways to work on various things and have done many things to help him develop better tone/posture (already). I have watched his tone and his gross motor development as well as postural compensations at every step along the way. I brought him in to see an orthotist and got him orthotics to wear for a while. He still has low tone. I am still watching his gait and movement and will probably use kinesiotape with him down the road; I'll do anything to help him prevent having the gait issues his father has down the road.
I also have known since he was very very young that he is a "sensory seeker" just like his dad. He loves to be on the move, loves to explore things with his hands (and whole body), loves to chew on things (and uses this method to calm - much like his father), and thoroughly enjoys music, lights, fans, mirrors, and any funny sounds. I have never seen him as a sensory sensitive or sensory averse child (with the exception of playground swings). Of course he went through phases where the vacuum cleaner scared him and he doesn't like water in his face/eyes much in the bath, but those to me are within the typical when it comes to infants/toddlers. I did however notice that he had a hard time calming himself to sleep (probably because he revved so easily) and started the Wilbarger Deep Pressure Protocol (therapeutic brushing and joint compressions) when he was a little over 1 year old to help aid his sleep patterns and also made him a weighted blanket to go to bed with at night. I taught my husband how to use the brush and we stuck with it for the 6 weeks at 5-6 times a day and then weaned him off. I have used the protocol with many other families and children and even used it on myself, so it just seemed like the right thing to do and it worked. The combination of that and the weighted blanket made sleep so much better in our house and made him more regulated and relaxed throughout the day. His development just spurted overnight it seemed.
So here we are, over a year later, and I'm back to brushing him. This time it's for sensory aversions though. Apparently something with the NG tube (the feeding tube that went down his nose and into his esophagus and stomach for almost 4 weeks) and all the cares associated with it caused things to switch and my little boy to be very averse to food entering his mouth. Now I am not saying he wasn't a "bird eater" before all of this happened. He was a snacker - small meals every 2-3 hours and lots of milk to help those snacks fill him a bit. He woke hungry to nurse at night until he was 10 months old (and I know this was hunger as he only drank 4-6 ounces at most at a feeding during daytime hours at his peak liquid period - I think he drank an 8 ounce bottle once). He has always been a slow eater as well. Part of this is low tone and part is probably laziness. He knows it is work to eat and he, as most toddlers, would rather be playing. However, I never ever worried that he was averse to mealtimes or utensils or textures (other than stage 3 foods - which are wrong and a whole different story IMO). He used to eat pretty much everything. His favorite foods continue to be ANY GREEN VEGETABLE (and I mean any - broccoli, peas, green beans, edamame, asparagus, green peppers, lima beans, and the list goes on) as well as any fruits. These of course don't pack much caloric punch to a small child. He would feed himself at meals for a while, but then got lazy and preferred to be fed for the remainder of the meal. I didn't push it as I figured as long as he wanted to keep eating, he'd get the self-feeding thing eventually. He, unlike many kids, needed reminders to eat though as I don't think he got clear hunger signals, though we as adults could read them loud and clear. So while he was a slow eater with high metabolism and a small stomach, he was eating and we just wanted him to gain more weight if he could. (He gained on average 1 ounce/week from age 7 months until age 2 when they placed the feeding tube). 2 days after his second birthday the NG was placed and something changed. He gained nearly 3 pounds in 3 1/2 weeks and stopped taking basically anything by mouth except for some liquids. We were told this is normal as he was getting the calories he needed overnight and gaining nicely on it and that kids will start eating by mouth again. Now here we are 3 weeks later and still struggling with mealtimes. He is acting like the kids I have worked with who have sensory aversions to their face and mouth and who are fearful of mealtimes. What happened to my boy?
So I decided it was time to brush him again. It has now been 4 days and again I think it is working. This time around it is just like what I have said to many parents that I work with: "try to get it in every 2 hours, but usually the ones who really need it will let you know when it's time for another "dose"; older ones will ask for it, while younger ones will show behavior changes and you will just know". Every 1 1/2 to 2 hours he starts to get cranky and irritable, I check the clock and notice, "oh it's about time for brushing", I brush him and we are happy and ready to go again. The nice thing is that it is often timed out well to be before meal or snacktime and has seemed to help that routine as well. There aren't enough studies out there to prove/disprove this therapeutic technique, but with my own son, yet again, it seems to be doing the trick. It has only been 4 days, but over the next week I'm sure I'll have more confidence one way or another on this one. Yet again being an OT has maybe, just maybe, helped me stay a little saner as a parent.
So from day 1, I positioned him in certain ways to work on various things and have done many things to help him develop better tone/posture (already). I have watched his tone and his gross motor development as well as postural compensations at every step along the way. I brought him in to see an orthotist and got him orthotics to wear for a while. He still has low tone. I am still watching his gait and movement and will probably use kinesiotape with him down the road; I'll do anything to help him prevent having the gait issues his father has down the road.
I also have known since he was very very young that he is a "sensory seeker" just like his dad. He loves to be on the move, loves to explore things with his hands (and whole body), loves to chew on things (and uses this method to calm - much like his father), and thoroughly enjoys music, lights, fans, mirrors, and any funny sounds. I have never seen him as a sensory sensitive or sensory averse child (with the exception of playground swings). Of course he went through phases where the vacuum cleaner scared him and he doesn't like water in his face/eyes much in the bath, but those to me are within the typical when it comes to infants/toddlers. I did however notice that he had a hard time calming himself to sleep (probably because he revved so easily) and started the Wilbarger Deep Pressure Protocol (therapeutic brushing and joint compressions) when he was a little over 1 year old to help aid his sleep patterns and also made him a weighted blanket to go to bed with at night. I taught my husband how to use the brush and we stuck with it for the 6 weeks at 5-6 times a day and then weaned him off. I have used the protocol with many other families and children and even used it on myself, so it just seemed like the right thing to do and it worked. The combination of that and the weighted blanket made sleep so much better in our house and made him more regulated and relaxed throughout the day. His development just spurted overnight it seemed.
So here we are, over a year later, and I'm back to brushing him. This time it's for sensory aversions though. Apparently something with the NG tube (the feeding tube that went down his nose and into his esophagus and stomach for almost 4 weeks) and all the cares associated with it caused things to switch and my little boy to be very averse to food entering his mouth. Now I am not saying he wasn't a "bird eater" before all of this happened. He was a snacker - small meals every 2-3 hours and lots of milk to help those snacks fill him a bit. He woke hungry to nurse at night until he was 10 months old (and I know this was hunger as he only drank 4-6 ounces at most at a feeding during daytime hours at his peak liquid period - I think he drank an 8 ounce bottle once). He has always been a slow eater as well. Part of this is low tone and part is probably laziness. He knows it is work to eat and he, as most toddlers, would rather be playing. However, I never ever worried that he was averse to mealtimes or utensils or textures (other than stage 3 foods - which are wrong and a whole different story IMO). He used to eat pretty much everything. His favorite foods continue to be ANY GREEN VEGETABLE (and I mean any - broccoli, peas, green beans, edamame, asparagus, green peppers, lima beans, and the list goes on) as well as any fruits. These of course don't pack much caloric punch to a small child. He would feed himself at meals for a while, but then got lazy and preferred to be fed for the remainder of the meal. I didn't push it as I figured as long as he wanted to keep eating, he'd get the self-feeding thing eventually. He, unlike many kids, needed reminders to eat though as I don't think he got clear hunger signals, though we as adults could read them loud and clear. So while he was a slow eater with high metabolism and a small stomach, he was eating and we just wanted him to gain more weight if he could. (He gained on average 1 ounce/week from age 7 months until age 2 when they placed the feeding tube). 2 days after his second birthday the NG was placed and something changed. He gained nearly 3 pounds in 3 1/2 weeks and stopped taking basically anything by mouth except for some liquids. We were told this is normal as he was getting the calories he needed overnight and gaining nicely on it and that kids will start eating by mouth again. Now here we are 3 weeks later and still struggling with mealtimes. He is acting like the kids I have worked with who have sensory aversions to their face and mouth and who are fearful of mealtimes. What happened to my boy?
So I decided it was time to brush him again. It has now been 4 days and again I think it is working. This time around it is just like what I have said to many parents that I work with: "try to get it in every 2 hours, but usually the ones who really need it will let you know when it's time for another "dose"; older ones will ask for it, while younger ones will show behavior changes and you will just know". Every 1 1/2 to 2 hours he starts to get cranky and irritable, I check the clock and notice, "oh it's about time for brushing", I brush him and we are happy and ready to go again. The nice thing is that it is often timed out well to be before meal or snacktime and has seemed to help that routine as well. There aren't enough studies out there to prove/disprove this therapeutic technique, but with my own son, yet again, it seems to be doing the trick. It has only been 4 days, but over the next week I'm sure I'll have more confidence one way or another on this one. Yet again being an OT has maybe, just maybe, helped me stay a little saner as a parent.
Saturday, August 27, 2011
Welcome
We're currently in the waiting game with Nathaniel. It has been 4 weeks off the feeding tube and he is down 3/4 pound since getting it removed. We've been struggling with meals since he had it placed, but this weekend we have maybe finally begun to move in the right direction. Yesterday morning for the first time in almost 2 months he asked to set the entire table before breakfast and ate all his meals without distress/struggle and even fed himself part of dinner (it has been almost 2 months since that last happened as well). Then this morning for the first time since getting his tube placed on July 12th, he asked for a bite of daddy's waffle and then proceeded to ask for his own. I don't want to jinx it, but I'm just hoping that all continues to move in this positive direction so that he can start to gain/maintain his new weight curve. Hopefully all the sensory stuff I am doing with him, the feeding clinic referral, and the return to a regular routine will help.
In other more positive news, Nathaniel is just as delightful as ever. He continues to talk non-stop and comes up with so many observations and comments that surprise us all of the time. His favorite things continue to be cars/trains/campers/anything that moves and anything about being outside (walks, playing in the sand and rocks, watering, and climbing/playing at the playground). We are sad for our summer to be over. It was nice to have so much time off to just spend time together, but I think he will be happy for his normal routine to return. He's excited for "school" (ECFE) and dancing to start up again as well.
Hoping to continue to post comments and pictures in the days/weeks/months to come.
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