I am so frustrated!! It is not even the second full week of school and Kendra's stomach issues have come roaring back. The poor kid spent the whole night in bathroom puking and she is still so nauseated and exhausted that it looks like she won't make it to school today, even tardy.
We have had so many diagnostic tests to try to determine what is wrong and the last specialist told me "it's not logical" in response to why her symptoms are so severe and do not respond to medication. They can't find anything to explain her hyper sensitive stomach and its inability to digest proteins properly, although they all agree that she has this problem. It is the the WHY and the WHAT DO WE DO ABOUT IT? that no one has any answers to.
So we are going back to the peds and then I am having her looked at by a psychiatrist (our family psychiatrist, doesn't everyone have a family psychiatrist? we are such a triangle hole family:-)) because the gastroenterologist said that antidepressants or anti-anxiety meds might help. I am clutching at straws right now and will look into every possibility. It is very stressful to have your child sick and not have any answers, to make matters worse we have been struggling with this since she was in utero, and still no answers.
Showing posts with label illness. Show all posts
Showing posts with label illness. Show all posts
Monday, August 18, 2008
Wednesday, March 19, 2008
Back In The Flow
Last night when we got back from the hospital it felt as though we had been gone for a long time, instead of just overnight, but by this morning it feels as though we hadn't been gone at all. Right back into the flow of issues, minor crises, and tasks to be done.
The surgical procedure went well, but was inconclusive. They did not find anything specific, some anomalies, some possibilities but no answers. Now mind you I don't want them to find horrible problems, but it would be nice for them to be able to point to a specific problem and say "that is what is causing all the pain and suffering and here is how we are going to fix it". Instead we have some possible leads to follow but nobody really seems to know how to fix the problem since they can't really find the problem, although everyone agrees that there is a problem. How is that for fun?
Some background on all this. My 3rd pregnancy was a huge surprise to everyone, myself included. We had our two big boys, 9 and 7 at that point, and we were in the final steps of adopting the sibling group of 3 that we had fostered for 4 years. I was going back to work full-time for the first time in five years, and then God laughed. So we were pregnant again, as I had had a number of miscarriages before the boys came along we didn't run right out and tell everyone our glorious news.
At the first ultrasound, we got bad news, this would not be a viable fetus, as the development was all wrong, the organs were outside of the abdominal sac and there were major structural deformities. We were sent to a specialist. 2.5 weeks of nervous anguished waiting and the specialist says, oh no this baby is physically developing okay but she won't live long once born. We were like WHAT?!?! Turns out they were seeing inflammation in her bowel that led them to diagnose significant Cystic fibrosis and if the inflammation was that acute at this early stage of development then the baby would not live out its first year. None of that made sense to us, as there was no history of CF on either side of our family. My husband, the statistician that he is, began to question the doctor on his numbers and called into question his certainty. At which point the doctor got angry with us and announced that if we weren't going to follow his recommendation to terminate the pregnancy than he washed his hands of us.
We left that meeting totally stunned and in shock. There was a lot we couldn't process, but we both knew that we weren't going to terminate so we left it all in God's hands and moved on. It was scary, I had all sorts of deep, dark scary moments of unfaith, but always knew that whatever happened we would deal with it. After all that it was an uneventful and relatively easy pregnancy. I mean no problem, right?, 5 kids under the age of 10, 3 of them with special needs and a full time job and pregnant. But yeah, it was a good time for our family.
In the delivery room you could hardly move because there were so many specialists waiting around for this baby so they could do specialist things. But when she was born she was fine, no breathing issues, no deformities, nothing that anyone could find wrong, except for some difficulty keeping her temperature regulated. They sent us home on day 3.
On day 4 we were back in the NICU with a dying baby who had sepsis and needed emergency intervention. But we got through that and moved on with no apparent long term effects. Then at 4 months she was back in the hospital fighting for her life with major bowel infections. They scoped her and found many, many bleeding, infected ulcerations and she was diagnosed as being allergic to soy and was put on a special diet, as was I, since my breast milk was her only sustenance until she was over a year old when they let her have orange and yellow vegetables. Still, no one could tell us exactly what was wrong, one specialist said she had immature bowels and would grow out of it by age 2. I asked if she didn't grow out of it by then, what then? And he said, oh they would diagnose it as something else. Very reassuring, I assure you.
The first 2.5 years of her life she went from specialist to specialist, she had severe asthma and horrible eczema, we had major reflux, projectile vomiting, failure to gain weight, constant diarrhea, and yet we had no clear diagnosis or plan. One doctor would start her on something and another specialist would argue with that one and our heads were spinning. She had trial medications, she had test after test, but still no diagnosis.
Our pediatrician was the most wonderful support and gave me the best advice through this. He said "don't treat her differently than the other kids, if she wants to do something let her, let her grow to her own highest potential, do not coddle her just because she is ill" So we just acted like we had a normal life and that it was normal to do all of the hyper sterility things associated with her food prep. Somehow we did lead a normal life, we went camping (in a tent) across the country when she was 17 months old, for 6 weeks. She went to day care, she had birthday parties, she begged to signed up for dance, etc.
Then at around 3, many of her issues just subsided. We stayed on a very restricted diet and she still had asthma treatments on a daily basis as well as allergy treatments, but we went into a wonderful period of remission. Then when she was 6 or so she got worse, she became hyper allergic again to foods, her asthma got worse as did her eczema and she got pneumonia and then mononucleosis. Again with the specialists, again with the no answers, again with the remission of symptoms at about 7.5 years.
Then we went into a very nice long period of relative normalcy. I thought, ah ha that specialist was right, she grew out of it. She could eat almost everything her peers did, she started to grow to a more normal height and she became obsessed with dance and soccer and living life.
Then about 3 years ago, at age 11, things started to slide downhill again. She became unable to digest many forms of protein, her reflux became a serious issue. She had constant diarrhea, intense abdominal pain and vomiting episodes 2-4 times a week. At the same time she intensified her dancing, began performing in community theater and auditioned into the Youth Performing Arts High School as a dance major.
Which brings us up to date. Nobody knows for sure what is wrong, why her system cannot absorb food well. The pain, diarrhea and vomiting remain a mystery. Everyone agrees that they are there, that they are not symptoms of an eating disorder, etc., but nobody can tell us why this happening and more importantly what to do about it. She is missing way too much school. There are many days she can't dance and dance is her life she will tell you. She has a restricted social life because she is overly tired and often fighting off minor illnesses as her immune system is so effected she seems to get every cold etc that comes along. And she has a very restricted diet and a weird eating schedule, she has to eat 5-7 light meals a day (try fitting that into the school schedule) All this at a time when the most important thing is to fit in socially.
So we wait our 3-5 days for the test results and we hope that this time finally these new specialists have a clue for us.
The surgical procedure went well, but was inconclusive. They did not find anything specific, some anomalies, some possibilities but no answers. Now mind you I don't want them to find horrible problems, but it would be nice for them to be able to point to a specific problem and say "that is what is causing all the pain and suffering and here is how we are going to fix it". Instead we have some possible leads to follow but nobody really seems to know how to fix the problem since they can't really find the problem, although everyone agrees that there is a problem. How is that for fun?
Some background on all this. My 3rd pregnancy was a huge surprise to everyone, myself included. We had our two big boys, 9 and 7 at that point, and we were in the final steps of adopting the sibling group of 3 that we had fostered for 4 years. I was going back to work full-time for the first time in five years, and then God laughed. So we were pregnant again, as I had had a number of miscarriages before the boys came along we didn't run right out and tell everyone our glorious news.
At the first ultrasound, we got bad news, this would not be a viable fetus, as the development was all wrong, the organs were outside of the abdominal sac and there were major structural deformities. We were sent to a specialist. 2.5 weeks of nervous anguished waiting and the specialist says, oh no this baby is physically developing okay but she won't live long once born. We were like WHAT?!?! Turns out they were seeing inflammation in her bowel that led them to diagnose significant Cystic fibrosis and if the inflammation was that acute at this early stage of development then the baby would not live out its first year. None of that made sense to us, as there was no history of CF on either side of our family. My husband, the statistician that he is, began to question the doctor on his numbers and called into question his certainty. At which point the doctor got angry with us and announced that if we weren't going to follow his recommendation to terminate the pregnancy than he washed his hands of us.
We left that meeting totally stunned and in shock. There was a lot we couldn't process, but we both knew that we weren't going to terminate so we left it all in God's hands and moved on. It was scary, I had all sorts of deep, dark scary moments of unfaith, but always knew that whatever happened we would deal with it. After all that it was an uneventful and relatively easy pregnancy. I mean no problem, right?, 5 kids under the age of 10, 3 of them with special needs and a full time job and pregnant. But yeah, it was a good time for our family.
In the delivery room you could hardly move because there were so many specialists waiting around for this baby so they could do specialist things. But when she was born she was fine, no breathing issues, no deformities, nothing that anyone could find wrong, except for some difficulty keeping her temperature regulated. They sent us home on day 3.
On day 4 we were back in the NICU with a dying baby who had sepsis and needed emergency intervention. But we got through that and moved on with no apparent long term effects. Then at 4 months she was back in the hospital fighting for her life with major bowel infections. They scoped her and found many, many bleeding, infected ulcerations and she was diagnosed as being allergic to soy and was put on a special diet, as was I, since my breast milk was her only sustenance until she was over a year old when they let her have orange and yellow vegetables. Still, no one could tell us exactly what was wrong, one specialist said she had immature bowels and would grow out of it by age 2. I asked if she didn't grow out of it by then, what then? And he said, oh they would diagnose it as something else. Very reassuring, I assure you.
The first 2.5 years of her life she went from specialist to specialist, she had severe asthma and horrible eczema, we had major reflux, projectile vomiting, failure to gain weight, constant diarrhea, and yet we had no clear diagnosis or plan. One doctor would start her on something and another specialist would argue with that one and our heads were spinning. She had trial medications, she had test after test, but still no diagnosis.
Our pediatrician was the most wonderful support and gave me the best advice through this. He said "don't treat her differently than the other kids, if she wants to do something let her, let her grow to her own highest potential, do not coddle her just because she is ill" So we just acted like we had a normal life and that it was normal to do all of the hyper sterility things associated with her food prep. Somehow we did lead a normal life, we went camping (in a tent) across the country when she was 17 months old, for 6 weeks. She went to day care, she had birthday parties, she begged to signed up for dance, etc.
Then at around 3, many of her issues just subsided. We stayed on a very restricted diet and she still had asthma treatments on a daily basis as well as allergy treatments, but we went into a wonderful period of remission. Then when she was 6 or so she got worse, she became hyper allergic again to foods, her asthma got worse as did her eczema and she got pneumonia and then mononucleosis. Again with the specialists, again with the no answers, again with the remission of symptoms at about 7.5 years.
Then we went into a very nice long period of relative normalcy. I thought, ah ha that specialist was right, she grew out of it. She could eat almost everything her peers did, she started to grow to a more normal height and she became obsessed with dance and soccer and living life.
Then about 3 years ago, at age 11, things started to slide downhill again. She became unable to digest many forms of protein, her reflux became a serious issue. She had constant diarrhea, intense abdominal pain and vomiting episodes 2-4 times a week. At the same time she intensified her dancing, began performing in community theater and auditioned into the Youth Performing Arts High School as a dance major.
Which brings us up to date. Nobody knows for sure what is wrong, why her system cannot absorb food well. The pain, diarrhea and vomiting remain a mystery. Everyone agrees that they are there, that they are not symptoms of an eating disorder, etc., but nobody can tell us why this happening and more importantly what to do about it. She is missing way too much school. There are many days she can't dance and dance is her life she will tell you. She has a restricted social life because she is overly tired and often fighting off minor illnesses as her immune system is so effected she seems to get every cold etc that comes along. And she has a very restricted diet and a weird eating schedule, she has to eat 5-7 light meals a day (try fitting that into the school schedule) All this at a time when the most important thing is to fit in socially.
So we wait our 3-5 days for the test results and we hope that this time finally these new specialists have a clue for us.
Sunday, March 16, 2008
Surgeries, Special Needs, and Anxieties
I have spent the afternoon getting ready to go to the Children's Hospital tomorrow, as my 14 yo Kendra is going to have some diagnostic tests done that involve a little surgery. We won't actually have the surgery tomorrow, but the surgery is scheduled for Tuesday at 7 AM and the hospital is over 2 hours away, so we are driving up tomorrow and spending the night in a hotel.
This surgery is causing me all sorts of anxieties and I am not totally sure why. She has had this proceedure at least 3 other times in her life and it is not any more dangerous than ever going under anethesia is. I guess I am worried about what they might find.
We know something is wrong with her digestive system, we have known that since her ultrasound in utero, she has seen a multitude of specialists, had surgery several times, been on special diets all her life and yet 14, almost 15 years later not a one of the specialists has been able to give us definitive answer about what is wrong and how to fix it. WE want some answers, we want a course of treatment that will lead to an improvement in her overall quality of life, and we want it sometime before she becomes an adult.
Having parented kids with speical needs, both as an adoptive, foster and (birth, first, regular, whatever) mom I know just how elusive that diagnosis and course of treatment can be. But it is still immensely frustrating to have to go through all of this and not have answers. Especially as she is getting to the age when I fear her own issues with fitting in and being part of the peer group may make her resistant to suggested therapies, or send her seeking her own self-mediactions for the ongoing pain and discomfort.
Anyway wish us luck and I won't be around for a couple of days, I expect to be back posting on Wednesday if not very late Tuesday.
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