Ever since I was diagnosed I have had worries about my two daughters although I have tried to put it to the back of my mind as a person can only handle so much at one time. There is a lot of research being done about the genetics of chiari and how in some families in seems to be passed down.
Even though rationally I know it is not my fault the feelings of guilt push their way into my thinking. What if I have passed this on to my girls? Are they going to have as rough a time as I have? This is a part of why I really feel motivated to try and change things in Canada. It is not right that those of us that feel so ill and have legitimate and serious symptoms have to fight tooth and nail for every scrap of treatment that we get. This can't go on. We didn't ask to be diagnosed with a rare and little know disorder. As Canadians we are supposed to have the right to appropriate and timely access to health care. HELLO!!!.....not happening! I want this to be different for my children and everyone else's children that will be diagnosed in the future.
My oldest daughter has already seen a neurologist and a urologist. This was all before I was diagnosed. She has had frequent urinary tract infections since she was potty trained. She was late to potty train and at 8 years old still has the occasional accident. She was found to have a "cul-de-sac" on her bladder or an extra pouch where stagnant urine can collect and bacteria can grow leading to infections. The urologist put her on a potty schedule and this seems to have helped. She has a tendency to hold it all day long and this is not a good thing when you have a tendency toward infections.
She also developed different sized pupils about 3 years ago. All of a sudden one night when she had the stomach flu and was violently throwing up she looked up at me and one pupil was huge and the other pupil was tiny. As a former pediatric ICU nurse I freaked out! I was thinking the worst and was convinced she must have meningitis. I rushed her to the ER but they were not convinced and we were sent home. It didn't end up being meningitis but it has never gone away. It only seems to occur when she is upset-angry, sad or scared-then all of a sudden they will go completely different sizes. It is quite un-nerving to look at. So we got a referral to a pediatric neurologist and a pediatric neuro-ophtamologist. The medical term for it is anisocoria and after a very thorough eye exam and neuro exam it was determined that it was nothing to worry about. some people just have different sized pupils. Of course this was before my diagnosis and an MRI of the head was not done. Now I wonder.....Since it is looking pretty likely that I have dysautonomia I also wonder about her as her anisocoria seems to come on with emotional upset.
She has also always been clumsy and has complained about being dizzy. She has hurt herself several times by falling. The one time at school she fell and cut her head on a kettle drum and she said it was because it felt like the room was spinning. She has also started to complain about headaches in the last year. I try and be very careful not to talk about my symptoms in front of my children as I don't want to plant any ideas in their heads. But I don't think that this is what it is.
My youngest daughter who is 5 has had GI difficulties since birth. She screamed up to 10hours a day for 15months. I took EVERYTHING out of my diet to try and make breastfeeding work and she still screamed. I was literally eating rice and water and she was still screaming. I finally gave up at 7 months and switched to soy formula but by that time she had started on solid food and the screaming continued. At 15months we finally got in to see a pediatrician who advised us to take ALL lactose out of her diet. We did this and experienced moderate improvements. It seemed to be short lived though and her temperment was connected to her gut in a big way.
She has continued to have an explosive temperment and frequent abdominal pain and diarrhea. At ages 3-4 she frequently woke up in the middle of the night SCREAMING with tummy pain. She still has frequent diarrhea and has accidents of urine and stool. We have tried every diet imaginable. She had dairy, soy, and gluten removed for about a year. Every time we try a new diet it seems to help initially and then the effect seems to wear off.
Now, she is only on a dairy free diet and she has slowly seemed to improve over time. She often goes very pale and is doubled over after meals no matter what she eats. And she wakes up at night now screaming with leg and foot pain. I don't know anymore. It is all such a puzzle. She has seen a pediatric gastoenterologist who didn't really know what to make of it either. She has had ultrasounds, barium follow thru studies, tonnes of blood work and nothing ever comes back as abnormal. She has seen an allergist and she isn't allergic to anything. But in light of my diagnosis I just wonder.
The reason I haven't pursued a diagnosis for the two of them is that I have only been able to cope with my own health up until now and I don't think their symptoms are serious enough to have anyone do anything about it. I mean they aren't surgical candidates yet. I'm talking about Canada here people. I can't even get help and I have a lot more serious things going on. But if their symptoms continue and progress I guess I am going to have to draw on some hidden sources of energy and resolve and start fighting for them as well. Maybe I will have more luck for them and thru them get acknowlegment that I could also have tethered cord and get the surgery I need. I also have always felt much more comfortable advocating for others than myself. I think many of us feel this way. For some strange reason their is this weird guilt that comes into play when we fight for our own health and rights. But when it is for our children, our family or friends we can become real scrappers.
I pray daily that this is not the case and they don't have tethered cord or cm but with every symptom I become a little more convinced that there is something going on. I hope those researchers are researching their little hearts out so that their battles will be easier than mine. And I am trying everything that I know how to do to make that happen.
Ever since I was diagnosed I have had worries about my two daughters although I have tried to put it to the back of my mind as a person can only handle so much at one time. There is a lot of research being done about the genetics of chiari and how in some families in seems to be passed down.
Even though rationally I know it is not my fault the feelings of guilt push their way into my thinking. What if I have passed this on to my girls? Are they going to have as rough a time as I have? This is a part of why I really feel motivated to try and change things in Canada. It is not right that those of us that feel so ill and have legitimate and serious symptoms have to fight tooth and nail for every scrap of treatment that we get. This can't go on. We didn't ask to be diagnosed with a rare and little know disorder. As Canadians we are supposed to have the right to appropriate and timely access to health care. HELLO!!!.....not happening! I want this to be different for my children and everyone else's children that will be diagnosed in the future.
My oldest daughter has already seen a neurologist and a urologist. This was all before I was diagnosed. She has had frequent urinary tract infections since she was potty trained. She was late to potty train and at 8 years old still has the occasional accident. She was found to have a "cul-de-sac" on her bladder or an extra pouch where stagnant urine can collect and bacteria can grow leading to infections. The urologist put her on a potty schedule and this seems to have helped. She has a tendency to hold it all day long and this is not a good thing when you have a tendency toward infections.
She also developed different sized pupils about 3 years ago. All of a sudden one night when she had the stomach flu and was violently throwing up she looked up at me and one pupil was huge and the other pupil was tiny. As a former pediatric ICU nurse I freaked out! I was thinking the worst and was convinced she must have meningitis. I rushed her to the ER but they were not convinced and we were sent home. It didn't end up being meningitis but it has never gone away. It only seems to occur when she is upset-angry, sad or scared-then all of a sudden they will go completely different sizes. It is quite un-nerving to look at. So we got a referral to a pediatric neurologist and a pediatric neuro-ophtamologist. The medical term for it is anisocoria and after a very thorough eye exam and neuro exam it was determined that it was nothing to worry about. some people just have different sized pupils. Of course this was before my diagnosis and an MRI of the head was not done. Now I wonder.....Since it is looking pretty likely that I have dysautonomia I also wonder about her as her anisocoria seems to come on with emotional upset.
She has also always been clumsy and has complained about being dizzy. She has hurt herself several times by falling. The one time at school she fell and cut her head on a kettle drum and she said it was because it felt like the room was spinning. She has also started to complain about headaches in the last year. I try and be very careful not to talk about my symptoms in front of my children as I don't want to plant any ideas in their heads. But I don't think that this is what it is.
My youngest daughter who is 5 has had GI difficulties since birth. She screamed up to 10hours a day for 15months. I took EVERYTHING out of my diet to try and make breastfeeding work and she still screamed. I was literally eating rice and water and she was still screaming. I finally gave up at 7 months and switched to soy formula but by that time she had started on solid food and the screaming continued. At 15months we finally got in to see a pediatrician who advised us to take ALL lactose out of her diet. We did this and experienced moderate improvements. It seemed to be short lived though and her temperment was connected to her gut in a big way.
She has continued to have an explosive temperment and frequent abdominal pain and diarrhea. At ages 3-4 she frequently woke up in the middle of the night SCREAMING with tummy pain. She still has frequent diarrhea and has accidents of urine and stool. We have tried every diet imaginable. She had dairy, soy, and gluten removed for about a year. Every time we try a new diet it seems to help initially and then the effect seems to wear off.
Now, she is only on a dairy free diet and she has slowly seemed to improve over time. She often goes very pale and is doubled over after meals no matter what she eats. And she wakes up at night now screaming with leg and foot pain. I don't know anymore. It is all such a puzzle. She has seen a pediatric gastoenterologist who didn't really know what to make of it either. She has had ultrasounds, barium follow thru studies, tonnes of blood work and nothing ever comes back as abnormal. She has seen an allergist and she isn't allergic to anything. But in light of my diagnosis I just wonder.
The reason I haven't pursued a diagnosis for the two of them is that I have only been able to cope with my own health up until now and I don't think their symptoms are serious enough to have anyone do anything about it. I mean they aren't surgical candidates yet. I'm talking about Canada here people. I can't even get help and I have a lot more serious things going on. But if their symptoms continue and progress I guess I am going to have to draw on some hidden sources of energy and resolve and start fighting for them as well. Maybe I will have more luck for them and thru them get acknowlegment that I could also have tethered cord and get the surgery I need. I also have always felt much more comfortable advocating for others than myself. I think many of us feel this way. For some strange reason their is this weird guilt that comes into play when we fight for our own health and rights. But when it is for our children, our family or friends we can become real scrappers.
I pray daily that this is not the case and they don't have tethered cord or cm but with every symptom I become a little more convinced that there is something going on. I hope those researchers are researching their little hearts out so that their battles will be easier than mine. And I am trying everything that I know how to do to make that happen.