So we are now to our birthdays after surgery!! Woo hoo. It's night and day from our other birthdays. Thank you God and Dr George!! Got my babies back. We got their school pics and for the first time they had bright eyes and real smiles. No dark circles and no semi smiles.
Contact me on the blog if you ever need a friend to just talk to about your journey with chiari!
Saturday, October 3, 2015
Friday, June 26, 2015
headaches and solutions for head pain and chiari symptoms complaints
No matter how many times our kids complain about headaches, we have to go through the same list of questions with them.
1. Where does it hurt?
2. How bad is it hurting?
3. When did it start bothering you?
These are my basic three questions that begin the process of how to get them comfortable and functional again. Now, when we started this process, in the begin NJ ING it was new to us. The kids fell into a routine of going to lay in bed a lot and being more "sedentary". We dispensed a lot of Ibuprofen and the kids took cyproheptadine.
Now, first off, I always make sure that if they truly need medicine that theyou get it. So, like I said in the beginning we did daily meds and ibuprofen as needed. Acedomedafin Didn't seem to work as well.
Now, giving daily meds get old real fast. Having chronically ill kids gets old even faster. Learning to cater to it will only "feed" the complaint monster. The thing with kids and even adults (using myself as an example for adults and no I do not have chiari but I battle with my own issues) is that if you are busy you think less about your problems. Does it mean your problems don't exist? No but it does mean that running to the doctor and popping pills all day are temporary solutions that get old fast. Finding the right doctor and medication combo doesn't solve problems just symptoms.
So here's what we do and suggestions for others from a mom point of view opinion.
1. Ask the where, how, and when questions.
2. Develop a plan for how your going to distract from the problem first and try to avoid meds if possible.
3. Don't try just one or two distractions. Come up with new and interesting ideas for those super hard days where your not getting the response you need.
Examples of distractions
computer or phone games
special movie or kids show to lay down until pain passes ...sedentary solution
playdough fun for young children, crochet or 3 models for older kids or adults
board game not computer or puzzle or book puzzle like sudden without the screenlighting
going for a short walk outdoors
Going to sit outside
Drinking a warm drink
making a small snack
For unexpected activities, write a letter and mail it to a friend Or call a friend to come play or go for a drive to get a snow cone or go wash the car. Just something out of the ordinary (car washing is not ordinary for me lol)
Always have a trick in your bag to pull out. Your biggest enemy for headache control is uncertainty, and lack of Preparation.
Other issues that cause complaining with the chiari is when people and children are bored. Also, have a lack of routine is not good for kids with chronic problems or parents either because it causes anxiety and depression. How the heck does that happen without a schedule? Well let me give you the facts that we went through and where we are now.
4 years ago, my chiari child with the MOST complaints, started with one complaint. I heard it all the time, constantly and I catered to it. "Mom my tummy hurts". Hmm ok I thought maybe constipation. Nope. Maybe a bug. Nope. Maybe indigestion. Nope. Days turned into weeks. I homeschool ed the kids at the time and didn't really have a schedule where we did the same thing every day. We accomplished our schoolwork after, the kids just free played. Looking back, when friends were over, my mom came to visit, we went on a short trip, we were in a store, etc...no complaints really. Some but not always. Except the car she hated the car. Looking back the seat belts were I think putting pressure on her to sit a certain way that affected her neck position causing her stomach pain later diagnosed as abdominal migraines. Anyways, when we were at home she complained to the point it was like a habit. Mom much belly hurts, my legs bother me, my neck hurts, I have no feeling I my arm, I have a headache. It overwhelmed me and I think I went to the doctor with the kids weekly. My routine I imagined with housewife duties, homeschool fun and going to do things as a fami k you when dad got home was something not possible. I became a prisoner of looking for escape. it felt like the kids were never happy, I was never happy and my husband got the brunt of my bad mood because he got to get away from it daily.
I felt like he didn't understand. He would get home and the kids were instantly cured. It caused me to question myself, question my kids truthfulness on these issues they claimed to have. then one day we were out eating and my husband had to tell my daughter to quit complaining to me. She literally said her belly hurt, her Neck hurt, her head was hurting her etc was a problem. She reported this to me about every five minutes! I remember telling him, "see what she does to me all the time".
There was no break for me at night. My youngest daughter who had started saying she wasn't feeling good that same year I thought she was mimicking her sister. Until she began to wake up in the middle of the night. Screaming. In pain with her head hurting. I remember that my life felt out of control. Our family had no rules really. For us that caused the kids to focus on their problems exasperated by their bordem and my unwillingness to want to do anything for the fun part since any extra time for fun was spent catering to illness.
Fast forward to this year. I am working full time. The kids go to school. We are down to maybe one or two times the get ibuprofen. It is still weekly though. Since moods are better, we play board games, go outside a lot, have fun finding fun things to do like birthday parties and going places. The headaches went from our primary focus to our last facus. Now we are a year out of surgery, but our distractions have increased our love of learning and for each other. I can say I have a goal of figuring out how some natural remedies will come into play. Hoping to get off Ibuprofen. However, it seems like Summer is easier than Winter. I believe vitamin D is a factor in this.
I pray for all our chiari families that visit us from all over the world!!
Love from us~!~
1. Where does it hurt?
2. How bad is it hurting?
3. When did it start bothering you?
These are my basic three questions that begin the process of how to get them comfortable and functional again. Now, when we started this process, in the begin NJ ING it was new to us. The kids fell into a routine of going to lay in bed a lot and being more "sedentary". We dispensed a lot of Ibuprofen and the kids took cyproheptadine.
Now, first off, I always make sure that if they truly need medicine that theyou get it. So, like I said in the beginning we did daily meds and ibuprofen as needed. Acedomedafin Didn't seem to work as well.
Now, giving daily meds get old real fast. Having chronically ill kids gets old even faster. Learning to cater to it will only "feed" the complaint monster. The thing with kids and even adults (using myself as an example for adults and no I do not have chiari but I battle with my own issues) is that if you are busy you think less about your problems. Does it mean your problems don't exist? No but it does mean that running to the doctor and popping pills all day are temporary solutions that get old fast. Finding the right doctor and medication combo doesn't solve problems just symptoms.
So here's what we do and suggestions for others from a mom point of view opinion.
1. Ask the where, how, and when questions.
2. Develop a plan for how your going to distract from the problem first and try to avoid meds if possible.
3. Don't try just one or two distractions. Come up with new and interesting ideas for those super hard days where your not getting the response you need.
Examples of distractions
computer or phone games
special movie or kids show to lay down until pain passes ...sedentary solution
playdough fun for young children, crochet or 3 models for older kids or adults
board game not computer or puzzle or book puzzle like sudden without the screenlighting
going for a short walk outdoors
Going to sit outside
Drinking a warm drink
making a small snack
For unexpected activities, write a letter and mail it to a friend Or call a friend to come play or go for a drive to get a snow cone or go wash the car. Just something out of the ordinary (car washing is not ordinary for me lol)
Always have a trick in your bag to pull out. Your biggest enemy for headache control is uncertainty, and lack of Preparation.
Other issues that cause complaining with the chiari is when people and children are bored. Also, have a lack of routine is not good for kids with chronic problems or parents either because it causes anxiety and depression. How the heck does that happen without a schedule? Well let me give you the facts that we went through and where we are now.
4 years ago, my chiari child with the MOST complaints, started with one complaint. I heard it all the time, constantly and I catered to it. "Mom my tummy hurts". Hmm ok I thought maybe constipation. Nope. Maybe a bug. Nope. Maybe indigestion. Nope. Days turned into weeks. I homeschool ed the kids at the time and didn't really have a schedule where we did the same thing every day. We accomplished our schoolwork after, the kids just free played. Looking back, when friends were over, my mom came to visit, we went on a short trip, we were in a store, etc...no complaints really. Some but not always. Except the car she hated the car. Looking back the seat belts were I think putting pressure on her to sit a certain way that affected her neck position causing her stomach pain later diagnosed as abdominal migraines. Anyways, when we were at home she complained to the point it was like a habit. Mom much belly hurts, my legs bother me, my neck hurts, I have no feeling I my arm, I have a headache. It overwhelmed me and I think I went to the doctor with the kids weekly. My routine I imagined with housewife duties, homeschool fun and going to do things as a fami k you when dad got home was something not possible. I became a prisoner of looking for escape. it felt like the kids were never happy, I was never happy and my husband got the brunt of my bad mood because he got to get away from it daily.
I felt like he didn't understand. He would get home and the kids were instantly cured. It caused me to question myself, question my kids truthfulness on these issues they claimed to have. then one day we were out eating and my husband had to tell my daughter to quit complaining to me. She literally said her belly hurt, her Neck hurt, her head was hurting her etc was a problem. She reported this to me about every five minutes! I remember telling him, "see what she does to me all the time".
There was no break for me at night. My youngest daughter who had started saying she wasn't feeling good that same year I thought she was mimicking her sister. Until she began to wake up in the middle of the night. Screaming. In pain with her head hurting. I remember that my life felt out of control. Our family had no rules really. For us that caused the kids to focus on their problems exasperated by their bordem and my unwillingness to want to do anything for the fun part since any extra time for fun was spent catering to illness.
Fast forward to this year. I am working full time. The kids go to school. We are down to maybe one or two times the get ibuprofen. It is still weekly though. Since moods are better, we play board games, go outside a lot, have fun finding fun things to do like birthday parties and going places. The headaches went from our primary focus to our last facus. Now we are a year out of surgery, but our distractions have increased our love of learning and for each other. I can say I have a goal of figuring out how some natural remedies will come into play. Hoping to get off Ibuprofen. However, it seems like Summer is easier than Winter. I believe vitamin D is a factor in this.
I pray for all our chiari families that visit us from all over the world!!
Love from us~!~
One Year after surgery ....DRAMATIC RESULTS
So, it has been a whole year now after surgery. I have to share these images of my daughter's syringomylia after surgery. I had lowered my expectations. The first three pics are BEFORE surgery. The rest are after surgery.
We had a goal of 50% reduction. We were told it can take years. I remember clearly crying to Dr. George about how I believed I made a mistake. My daughter 20hrs after surgery was on morphine and just "out of it" not herself. Now, 1 year later.....I definately did not make a mistake!
Before:
CSpine 1yr post op. Reduction of syringomyelia and obvious flow restored
Lumbar view NO syrinxs
Thoracic Spine = resolved syringomyelia
We had a goal of 50% reduction. We were told it can take years. I remember clearly crying to Dr. George about how I believed I made a mistake. My daughter 20hrs after surgery was on morphine and just "out of it" not herself. Now, 1 year later.....I definately did not make a mistake!
Before:
Huge Sepatated Syrinxs CSpine
Full Spine View before surgery. Compelling Syringomyelia
CSpine - biggest syrinx cysts
Now ONE YEAR POST OP;
Lumbar view NO syrinxs
Obviously, Pictures are PROOF that for our daughter, she has recovered very well. I bet the next question is going to be about symptoms. Olivia still gets headaches. Not as often and she rarely goes to bed with them. She has NOT woke up with a headache since her surgery. She has regained most of the "feeling" she had lost. She no longer runs with a limp. She is happy, healthy, and she is a different person for the better after surgery.
I wanted to post these. My other daughter does not have to have another MRI this year. It will be a couple more years before she has to go back. Abrianna has very few bad days now. She has been our most vocal child with "symptoms". Her swallowing/chocking from the Chiari Malformation is gone. Her headaches are just a few times a month, much better than daily. Her body temperature is very hard to control. She can overheat easily. We got her a cooling vest and it does well. Getting used to using the cooling vest has been tricky. In and out play she wears it less than riding bikes and going to a park. School will be a place that she will be using it often. Abri didn't have it before the school year.
I believe that we made the correct decision. Surgery for Chiari Malformation is a treatment and not a cure. I do feel, that once proven (with CSF flow studies, and obvious MRI imaging of the compact brain), surgery is a must for anyone with Syringomyelia. However for the other child, she did NOT have syrinxs/syringomyelia. She did however have a lot of symptoms. She had swallowing issues, stomach pain (we now know that her head pain got so extreme it was from her head ending with abdominal migrane), sudden difficulty feeling her legs, body temperature regulation, headaches daily and often, and just an general overall of "not feeling well".
While surgery is behind us, I know that we have a way to go with regards to growth factors and what will happen long term.
I hope this blog is encouraging for the families seeking answers. My next post will be on how to choose a good surgeon.
Hugs to all our fans!!!!!
Sunday, March 8, 2015
Chiari symptoms
Over the past year, I have had the pleasure of meeting several people who have children with Chiari Malformation.
I get asked a lot what were my kid's symptoms. How did we find out? Especially from people who know nothing about chiari and are just curious. I know that I have posted symptoms before, but I wanted to re-do/update them.
For my kids here are a list of early onset symptoms. All of my kids have chiari.
2 of the children were "fussy babies" - one pediatrician used the words "high needs infant". That is my 5yr old and my 13yr old. The 13yr old as a baby, we now know that her Chiari has caused her permanent nerve damage. She no longer feels ill. She has hypotonia and has a personality that seems to constantly complain. She cried all the time as a baby and as a young child got into trouble a lot as a younger child in school. She has esotropia (accomodative) of the eyes and must wear orthodics, due to the way her legs turn. She complained all the time as a younger child about walking, running, doing any type of activity that her legs were "tired" or "hurting" that she now works on a weight issue. Although, this is the first year she has actually been seemingly more active. I am not sure if the new healthier eating lifestyle we try to do (again not perfect there) is a factor? Also, she is taking vitamins which seem to help as well. She also has hyperflexiblity and an EDS diagnoses from Dr. Rekate in New York. I was skeptical of this diagnoses until after the third time in her life trying to get her earrings, realizing it has been almost a year and the earrings are still not healing correctly! She can bend her arms and fingers different directions. She also does not know when she is sick.
2 of the children had severe stomach issues. Severe pain starting at age 3 for one of them and the other had projectile reflux as a baby.
1 child has Asperger's Syndrome and also had seizures that were outgrown by age 5
2 children have body temperature regulation issues. 1 gets too hot the other too cold.
2 children had headache complaints daily. The one with the syringomyelia would wake up with headaches at night and every morning. The other child had headaches that were "typical chiari" where she would bend over and have a headrush headache that would go away in minutes. Both complain of headaches and point to their foreheads. The syringo child has daily headaches still, even after decompression.
Only 1 out of all of them complained about neck pain at age 5 A LOT. That was the one with typical chiari headaches. I did recently get a call from the school where my just turned 5yr old complained of neck pain after doing a lot of coloring with sidewalk chalk. I personally believe the position of the neck affects their neck pain.
Nosebleeds in one child that I'm not sure is related but she gets them off and on for periods of time, often followed by stomach pain and headaches withing 48 hrs of onset.
So, for us our list is:
1. Stomach pains
2. Headaches
3. Neck pain
4. Muscle weakness (hypotonia)
5. Body Temperature Regulation
6. Autism/Asperger's Disorder
7. Seizures (early age only)
8. Syringomyelia
9. Periodic complaints of "not feeling well" that come and go
10. Nosebleeds
11. Sensory issues and problems with behavior (1 child)
12. Sudden onset of strange symptoms (feeling hot in certain areas on skin, sudden back pain for no reason after movement, having cold skin but hot flashes) also, saying things like "I know I have an arm but I can't feel it"or "my legs don't want to work"or "my arms are tired"
13. Throat complaints
14. To be Continued!...............
Those are all the current issues we have. Now, how do we handle them? The youngest children have the most complaints. The youngest is the one with the constant pain :( This is what we do:
1. distractions when possible!
2. extra rest
3. no activities that will bounce the head around or toys/things that can cause "whiplash".
4. heating pads and ice packs
5. fans - personal fans and keeping the house temp cooler than norm (68 in winter and summer)
6. making sure the school nurses are compliant with the 504 plans (so far we love our nurses and teachers and admin)
7. focusing on what we CAN not what we Can't do.
8. not going to the doctor as much anymore...(at this point, we know when it is urgent or not) and the years leading up to the diagnosis finally, we were at the doctor probably 3-4 times a week!
9. pain mangement - currently, we eat almost no gluten foods, drink extra water, take vitamins, use ibuprofen as needed, benadryl with it for severe headaches (that was our neurologist advice and we have only done that like 3 times) and I make sure we don't let the body temperature rise too much. At one time we took cyproheptadine daily. Right now those things work. Took hot ice packs on feet, lots of pain in head, extra water lay on heating pad on back with fan blowing on them to "pee off" extra fluids to reduce some swelling. (mom thing, and it seems to work).
10. There is no right or wrong answer when you are doing your best to help your child. Education is the key to making the best possible decisions and difference. Talk to parents, read studies, get educated on nutritional benefits, go see Chiari experts, join a support group...whatever it takes. Even if you just change a couple things here or there (because it does feel overwhelming and hopeless sometimes), everything you do counts.
Extra hugs and prayers for all the people seeking answers for their loved ones.
I get asked a lot what were my kid's symptoms. How did we find out? Especially from people who know nothing about chiari and are just curious. I know that I have posted symptoms before, but I wanted to re-do/update them.
For my kids here are a list of early onset symptoms. All of my kids have chiari.
2 of the children were "fussy babies" - one pediatrician used the words "high needs infant". That is my 5yr old and my 13yr old. The 13yr old as a baby, we now know that her Chiari has caused her permanent nerve damage. She no longer feels ill. She has hypotonia and has a personality that seems to constantly complain. She cried all the time as a baby and as a young child got into trouble a lot as a younger child in school. She has esotropia (accomodative) of the eyes and must wear orthodics, due to the way her legs turn. She complained all the time as a younger child about walking, running, doing any type of activity that her legs were "tired" or "hurting" that she now works on a weight issue. Although, this is the first year she has actually been seemingly more active. I am not sure if the new healthier eating lifestyle we try to do (again not perfect there) is a factor? Also, she is taking vitamins which seem to help as well. She also has hyperflexiblity and an EDS diagnoses from Dr. Rekate in New York. I was skeptical of this diagnoses until after the third time in her life trying to get her earrings, realizing it has been almost a year and the earrings are still not healing correctly! She can bend her arms and fingers different directions. She also does not know when she is sick.
2 of the children had severe stomach issues. Severe pain starting at age 3 for one of them and the other had projectile reflux as a baby.
1 child has Asperger's Syndrome and also had seizures that were outgrown by age 5
2 children have body temperature regulation issues. 1 gets too hot the other too cold.
2 children had headache complaints daily. The one with the syringomyelia would wake up with headaches at night and every morning. The other child had headaches that were "typical chiari" where she would bend over and have a headrush headache that would go away in minutes. Both complain of headaches and point to their foreheads. The syringo child has daily headaches still, even after decompression.
Only 1 out of all of them complained about neck pain at age 5 A LOT. That was the one with typical chiari headaches. I did recently get a call from the school where my just turned 5yr old complained of neck pain after doing a lot of coloring with sidewalk chalk. I personally believe the position of the neck affects their neck pain.
Nosebleeds in one child that I'm not sure is related but she gets them off and on for periods of time, often followed by stomach pain and headaches withing 48 hrs of onset.
So, for us our list is:
1. Stomach pains
2. Headaches
3. Neck pain
4. Muscle weakness (hypotonia)
5. Body Temperature Regulation
6. Autism/Asperger's Disorder
7. Seizures (early age only)
8. Syringomyelia
9. Periodic complaints of "not feeling well" that come and go
10. Nosebleeds
11. Sensory issues and problems with behavior (1 child)
12. Sudden onset of strange symptoms (feeling hot in certain areas on skin, sudden back pain for no reason after movement, having cold skin but hot flashes) also, saying things like "I know I have an arm but I can't feel it"or "my legs don't want to work"or "my arms are tired"
13. Throat complaints
14. To be Continued!...............
Those are all the current issues we have. Now, how do we handle them? The youngest children have the most complaints. The youngest is the one with the constant pain :( This is what we do:
1. distractions when possible!
2. extra rest
3. no activities that will bounce the head around or toys/things that can cause "whiplash".
4. heating pads and ice packs
5. fans - personal fans and keeping the house temp cooler than norm (68 in winter and summer)
6. making sure the school nurses are compliant with the 504 plans (so far we love our nurses and teachers and admin)
7. focusing on what we CAN not what we Can't do.
8. not going to the doctor as much anymore...(at this point, we know when it is urgent or not) and the years leading up to the diagnosis finally, we were at the doctor probably 3-4 times a week!
9. pain mangement - currently, we eat almost no gluten foods, drink extra water, take vitamins, use ibuprofen as needed, benadryl with it for severe headaches (that was our neurologist advice and we have only done that like 3 times) and I make sure we don't let the body temperature rise too much. At one time we took cyproheptadine daily. Right now those things work. Took hot ice packs on feet, lots of pain in head, extra water lay on heating pad on back with fan blowing on them to "pee off" extra fluids to reduce some swelling. (mom thing, and it seems to work).
10. There is no right or wrong answer when you are doing your best to help your child. Education is the key to making the best possible decisions and difference. Talk to parents, read studies, get educated on nutritional benefits, go see Chiari experts, join a support group...whatever it takes. Even if you just change a couple things here or there (because it does feel overwhelming and hopeless sometimes), everything you do counts.
Extra hugs and prayers for all the people seeking answers for their loved ones.
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