So, it's been a little while between appointments for A and we have some good but bad news.
A has reached a plateau--meaning her body is in alignment but her suture is not coming unstuck. The CT scan still needs to be sent to our chiropractor so that he can have more information about the fusing of the suture.
We did get A's hair analysis back though. Yuck. It seems that she is full of heavy metals and we're guessing that is the hold up with the "un-sticking" of the suture. We'll be starting a supplement protocol for her as soon as her supplements get here (read: I wish that was yesterday!).
Please continue to pray for us! I think we've gotten into the hard part of the journey.
Friday, May 31, 2013
Thursday, May 23, 2013
Nutritional "Stuff"
I just completed a certification in Nutritional Balancing and wanted to write a post about nutrition and birth defects.
Craniosynostosis is considered a birth defect and birth defects are usually caused by a lack of zinc in the mother. I will confirm for you based on how I feel that zinc is lacking, but I recently sent away hair samples for both A and myself. I'm interested to see what sort of patterns show up on the test.
We'll also be starting infrared sauna therapy (http://www.drlwilson.com/ARTICLES/HEAT%20LAMP.htm) on her ridge. Sauna therapy has been amazing;y healing for our family and we're hoping that it will assist the healing process.
I will make sure to post an update on birth defects, nutritional balancing and the like when our results come in.
Craniosynostosis is considered a birth defect and birth defects are usually caused by a lack of zinc in the mother. I will confirm for you based on how I feel that zinc is lacking, but I recently sent away hair samples for both A and myself. I'm interested to see what sort of patterns show up on the test.
We'll also be starting infrared sauna therapy (http://www.drlwilson.com/ARTICLES/HEAT%20LAMP.htm) on her ridge. Sauna therapy has been amazing;y healing for our family and we're hoping that it will assist the healing process.
I will make sure to post an update on birth defects, nutritional balancing and the like when our results come in.
Nursing & Craniosynostosis
Nursing can be trying enough without any extra issues. A misshapen head is an extra issue.
Dear mother who is nursing a baby with craniosynostosis ... YOU CAN DO IT! My experience with A has been that her latch is shoddy, at best. Her incessant amount of clicking (indicating a poor latch or thrush) led me all over the internet and into the arms of a decent lactation consultant. Though we found out A had posterior tongue tie, having it clipped barely touched the problem.
And so, we come to chiropractics. As soon as we had a chiropractor start working on her head, her latch improved. The chiropractor we met with in MD had been trained by Dr. Carol Phillips in cranio sacral work and she was an amazing help with our nursing issues. Unfortunately, when we missed two weeks of appointments while moving to PA, I became painfully aware of how frustrating nursing issues in the exclusively breatsfed baby can be.
Now that our chiropractor is working on A's head, her nursing is wildly better but also temperamental surrounding appointments. Monday's appointment, for example, was really solid but she's been clicking a lot this week and grabbing my chest like she's falling out of my lap. I'm hoping today's appointment will adjust that slightly :)
Dear mother who is nursing a baby with craniosynostosis ... YOU CAN DO IT! My experience with A has been that her latch is shoddy, at best. Her incessant amount of clicking (indicating a poor latch or thrush) led me all over the internet and into the arms of a decent lactation consultant. Though we found out A had posterior tongue tie, having it clipped barely touched the problem.
And so, we come to chiropractics. As soon as we had a chiropractor start working on her head, her latch improved. The chiropractor we met with in MD had been trained by Dr. Carol Phillips in cranio sacral work and she was an amazing help with our nursing issues. Unfortunately, when we missed two weeks of appointments while moving to PA, I became painfully aware of how frustrating nursing issues in the exclusively breatsfed baby can be.
Now that our chiropractor is working on A's head, her nursing is wildly better but also temperamental surrounding appointments. Monday's appointment, for example, was really solid but she's been clicking a lot this week and grabbing my chest like she's falling out of my lap. I'm hoping today's appointment will adjust that slightly :)
Saturday, May 18, 2013
Appointment #3
Can I give a big WOOOOOOHOOOOOOO!
Appointment #3 was awesome! Maybe I'm just excited to keep seeing changes but I think this was the best appointment yet. A's frontal bone (think forehead) made some great progress up and out. She actually has a forehead now instead of the strange pinched look she had before. The top of her head is much more rounded and I think there is a slight softening in the ridge along the top of her head. Maybe I'm delusional, but maybe I'm not ...
Dr. J also did some work with the maxilo-facial bones, which gave her face a fuller "baby" look.
Finally, Dr. J suggested that I rub A's big toe as it's a trigger point in reflexology for the head. I'm not sure about reflexology at this point but since I've seen so much positive from our chiropractic, I think I'll blindly follow on this one.
I am super excited for Monday's appointment and will report in then.
Appointment #3 was awesome! Maybe I'm just excited to keep seeing changes but I think this was the best appointment yet. A's frontal bone (think forehead) made some great progress up and out. She actually has a forehead now instead of the strange pinched look she had before. The top of her head is much more rounded and I think there is a slight softening in the ridge along the top of her head. Maybe I'm delusional, but maybe I'm not ...
Dr. J also did some work with the maxilo-facial bones, which gave her face a fuller "baby" look.
Finally, Dr. J suggested that I rub A's big toe as it's a trigger point in reflexology for the head. I'm not sure about reflexology at this point but since I've seen so much positive from our chiropractic, I think I'll blindly follow on this one.
I am super excited for Monday's appointment and will report in then.
Thursday, May 16, 2013
A New Update
I know this is being posted back to back, but a lot happened between our diagnosis and now ... it would be rather confusing to have to all in one post.
Anyhow, A has had two appointments with Dr. J. The goal of KST Technique is to remove the blockages in the body that are keeping the body from healing naturally.
At our first appointment, Dr. J asked all sorts of questions about my pregnancy, labor and delivery. First, A was "stuck" in my pelvis for about five months of the pregnancy. A good chiropractor would have been able to un-stick her, had I know to ask but alas, the chiropractic care I was receiving seems to have been sub-par. So sad.
Secondly, it seems that a child's head will collapse on itself and then "pop" out again when it is being delivered. The cranial bones will shift to be as small as possible and then return to the correct shape. Amazing! Anyway, it seems like A's head did not shift to come easily through the birth canal--hence the massive number of stitches.
After our first appointment, A's head showed significant change in the temporal bones (above the ears). Before the appointment, they were flat against the head and after the appointment they bulged out over the ears, which definitely looked funny. After our second appointment, the frontal bones began to bulge out as well. We have another appointment tomorrow morning.
Dr. J informed us at the start that we're looking to slowly unlock the sutures in the order her body is ready to unlock them. Slowly, we're hoping to unlock all of the sutures in the head so that the sagittal suture (along the top of the head) will be able to move freely.
Finally, we are Catholic and we're praying for the intercession of blessed John Paul II to "un-stick" A's saggital suture so that she can avoid surgery. John Paul the Great, pray for us!
Anyhow, A has had two appointments with Dr. J. The goal of KST Technique is to remove the blockages in the body that are keeping the body from healing naturally.
At our first appointment, Dr. J asked all sorts of questions about my pregnancy, labor and delivery. First, A was "stuck" in my pelvis for about five months of the pregnancy. A good chiropractor would have been able to un-stick her, had I know to ask but alas, the chiropractic care I was receiving seems to have been sub-par. So sad.
Secondly, it seems that a child's head will collapse on itself and then "pop" out again when it is being delivered. The cranial bones will shift to be as small as possible and then return to the correct shape. Amazing! Anyway, it seems like A's head did not shift to come easily through the birth canal--hence the massive number of stitches.
After our first appointment, A's head showed significant change in the temporal bones (above the ears). Before the appointment, they were flat against the head and after the appointment they bulged out over the ears, which definitely looked funny. After our second appointment, the frontal bones began to bulge out as well. We have another appointment tomorrow morning.
Dr. J informed us at the start that we're looking to slowly unlock the sutures in the order her body is ready to unlock them. Slowly, we're hoping to unlock all of the sutures in the head so that the sagittal suture (along the top of the head) will be able to move freely.
Finally, we are Catholic and we're praying for the intercession of blessed John Paul II to "un-stick" A's saggital suture so that she can avoid surgery. John Paul the Great, pray for us!
Wednesday, May 15, 2013
Our Diagnosis
This blog chronicle's our attempt at the non-surgical treatment of Sagittal Craniosynostosis.
Our second daughter, A was born on January 16, 2013 in MD. We're the "crunchy" type, I guess, so we went as natural as we could. After only 2 hours in labor and 13 minutes in the birth center our lovely bundle was born. She was beautiful and perfectly warm and velvety .... and she had manged to cause a bit of damage! An hour and a half and about 50 stitches, or so, later, I was good to go. Remember the stitches--they play into the story later.
After two meetings with a pediatrician, we decided we would prefer a different pediatrician. Unfortunately it took about five weeks to get an appointment with her. In that period of time, we found out our rental had mold and we had to move. Whomp. Whomp. This is after having moved in only three months prior. Needless to say, we weren't paying to much attention to any sort of developmental issues. At our first pediatrician appointment with our new pediatrician, Dr. K, she suggested that the shape of A's head was concerning and scheduled a neurologist appointment for us.
At that point, I didn't understand what the appointment was for, or I would have recognized that a neurologist was not appropriate choice for us. A neurosurgeon's office was where we belonged. We ended up needing to cancel the neurologist appointment and then, much to our surprise, we were asked to leave our intermediate housing arrangement quite suddenly and decided to return to PA where we had originally started our family. If you're confused, don't worry .... we are too.
Anyhow, the Sunday after we had gotten settled in PA, I finally sat down to look up all of this "fused suture," "synostosis" business everyone kept harping about. This image says it all ...
http://childrenshospital.org/az/Site2130/Images/Final_Cranio2.jpg
It was obvious to us that our daughter had Sagittal craniosynostosis. The next day, Monday, April 22, I called every neurosurgeon that I could find. Fortunately, we live only 40 minutes from Children's Hospital of Pittsburgh. They also happened to have a cancellation that coming Wednesday, April 24. How convenient!! I booked the appointment and off we went.
We arrived early and were checked in promptly. Two physician's assistants checked over A and then met with the neurosurgeon, who diagnosed A with Sagittal Craniosynostosis. That would mean that the top suture on her head is fused closed and eventually her head will grow to be hot dog shaped. There is also about a 15% chance that she will have developmental delays, though many doctors disagree over whether that's caused by the fusing or just something that is metabolic/DNA related to having fusing. This is my favorite link about craniosynostosis: http://www.childrenshospital.org/az/Site2130/mainpageS2130P0.html
Now, I appreciate allopathic medicine (http://en.wikipedia.org/wiki/Allopathic_medicine) and they are fabulous at treating serious issues but allopathic medicine is not the end all be all of the medical world. Both of our girls had been seeing a chiropractor who also used cranio sacral therapy in their practice. She had learned from Dr. Carol Phillips (http://dynamicbodybalancing.com), who is a wonderful resource. When I informed our neurosurgeon that we had been seeing a chiropractor to see if it might help with the fusing, he laughed in my face. I don't appreciate being laughed at--particularly to my face.
So, there we found ourselves, with a diagnosis of Sagittal Craniosynostosis (confirmed by a later CT scan) and a neurosurgeon who gave us only one option. Surgery.
Surgery involves cutting open the skull and cutting out the fused suture. It is least invasive before the 8 week mark, though few people catch it by then. It is also considered less invasive before the six month mark. We are fortunately only at the four month mark, so we're taking our time to explore our options.
Immediately, I contacted Dr. Phillips, Dr. Wilson (www.drlwilson.com), whom I highly respect when it comes to naturally healing the body through nutrition and another chiropractor. Both Dr. Phillips and Dr. Wilson suggested that the suture can be "un-stuck" through chiropractic and cranio sacral work along with nutritional balancing. The other chiropractor suggested strongly that this is a surgical matter only.
Dr. Phillips was so helpful as to try to locate a cranio sacral therapist in the area. Unfortunately, she could not find anyone, so she suggested I call every chiropractor in our area. Funnily, there are about fifty chiropractors in our small town alone, so I had plenty of options. After writing down my list and calling about ten of them, I found two that could help me.
In the process of my calling, I learned that cranio sacral technique is actually massage therapy, of sorts, and that I should call massage therapists to find one. In the meantime though, I also found another technique called KST Technique (http://www.teddkorenseminars.com/). Two separate chiropractors were recommended and I promptly scheduled appointments with both of them.
Our choice was obvious after the two appointments and we had an intake appointment within the week! We have had two appointments so far with good results. I will continue to post and we'll see if we can successfully avoid surgery.
Our second daughter, A was born on January 16, 2013 in MD. We're the "crunchy" type, I guess, so we went as natural as we could. After only 2 hours in labor and 13 minutes in the birth center our lovely bundle was born. She was beautiful and perfectly warm and velvety .... and she had manged to cause a bit of damage! An hour and a half and about 50 stitches, or so, later, I was good to go. Remember the stitches--they play into the story later.
After two meetings with a pediatrician, we decided we would prefer a different pediatrician. Unfortunately it took about five weeks to get an appointment with her. In that period of time, we found out our rental had mold and we had to move. Whomp. Whomp. This is after having moved in only three months prior. Needless to say, we weren't paying to much attention to any sort of developmental issues. At our first pediatrician appointment with our new pediatrician, Dr. K, she suggested that the shape of A's head was concerning and scheduled a neurologist appointment for us.
At that point, I didn't understand what the appointment was for, or I would have recognized that a neurologist was not appropriate choice for us. A neurosurgeon's office was where we belonged. We ended up needing to cancel the neurologist appointment and then, much to our surprise, we were asked to leave our intermediate housing arrangement quite suddenly and decided to return to PA where we had originally started our family. If you're confused, don't worry .... we are too.
Anyhow, the Sunday after we had gotten settled in PA, I finally sat down to look up all of this "fused suture," "synostosis" business everyone kept harping about. This image says it all ...
http://childrenshospital.org/az/Site2130/Images/Final_Cranio2.jpg
It was obvious to us that our daughter had Sagittal craniosynostosis. The next day, Monday, April 22, I called every neurosurgeon that I could find. Fortunately, we live only 40 minutes from Children's Hospital of Pittsburgh. They also happened to have a cancellation that coming Wednesday, April 24. How convenient!! I booked the appointment and off we went.
We arrived early and were checked in promptly. Two physician's assistants checked over A and then met with the neurosurgeon, who diagnosed A with Sagittal Craniosynostosis. That would mean that the top suture on her head is fused closed and eventually her head will grow to be hot dog shaped. There is also about a 15% chance that she will have developmental delays, though many doctors disagree over whether that's caused by the fusing or just something that is metabolic/DNA related to having fusing. This is my favorite link about craniosynostosis: http://www.childrenshospital.org/az/Site2130/mainpageS2130P0.html
Now, I appreciate allopathic medicine (http://en.wikipedia.org/wiki/Allopathic_medicine) and they are fabulous at treating serious issues but allopathic medicine is not the end all be all of the medical world. Both of our girls had been seeing a chiropractor who also used cranio sacral therapy in their practice. She had learned from Dr. Carol Phillips (http://dynamicbodybalancing.com), who is a wonderful resource. When I informed our neurosurgeon that we had been seeing a chiropractor to see if it might help with the fusing, he laughed in my face. I don't appreciate being laughed at--particularly to my face.
So, there we found ourselves, with a diagnosis of Sagittal Craniosynostosis (confirmed by a later CT scan) and a neurosurgeon who gave us only one option. Surgery.
Surgery involves cutting open the skull and cutting out the fused suture. It is least invasive before the 8 week mark, though few people catch it by then. It is also considered less invasive before the six month mark. We are fortunately only at the four month mark, so we're taking our time to explore our options.
Immediately, I contacted Dr. Phillips, Dr. Wilson (www.drlwilson.com), whom I highly respect when it comes to naturally healing the body through nutrition and another chiropractor. Both Dr. Phillips and Dr. Wilson suggested that the suture can be "un-stuck" through chiropractic and cranio sacral work along with nutritional balancing. The other chiropractor suggested strongly that this is a surgical matter only.
Dr. Phillips was so helpful as to try to locate a cranio sacral therapist in the area. Unfortunately, she could not find anyone, so she suggested I call every chiropractor in our area. Funnily, there are about fifty chiropractors in our small town alone, so I had plenty of options. After writing down my list and calling about ten of them, I found two that could help me.
In the process of my calling, I learned that cranio sacral technique is actually massage therapy, of sorts, and that I should call massage therapists to find one. In the meantime though, I also found another technique called KST Technique (http://www.teddkorenseminars.com/). Two separate chiropractors were recommended and I promptly scheduled appointments with both of them.
Our choice was obvious after the two appointments and we had an intake appointment within the week! We have had two appointments so far with good results. I will continue to post and we'll see if we can successfully avoid surgery.
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