http://www.naspghan.org/user-assets/documents/pdf/diseaseinfo/glutenfreedietguide-e.pdf
Monday, February 11, 2013
Friday, February 8, 2013
Prayers for Brianna
Brianna really needs some prayers. The doctors still cant figure out why she is so thin. She is under 5% BMI and is dangerously underweight. She is taking 2 pediasure a day but its still not doing anything. I really dont know what else to do for her. I dont want them to put her on feeding tube, but I dont want her to be unhealthy either. :( Im stuck in a hole right now.
Monday, February 4, 2013
Hospital Care
Many families with autoimmune conditions know the dreaded stays of hospital and doctors visits. I remember my first few stays I was terrified even working in the medical field for several years didn't take the anxiousness away. Now, I guess I'm a "pro". We know when to go and when not to go. I can mostly anticipate what the treatments will be and for what is wrong. My oldest daughter is 7. We always knew there was something special about her. She walked early, talked early, grew substantially quickly and was very aware of her surroundings. We went through countless daycare situations. I will never forget one horrifying day when I went to pick up Brianna after one of my doctor appointments. I was early to pick her up because I had left work and gone to my appointment just wanted to go home with her. Brianna was not even 2 yet, I walked in to find her daycare provider sitting on her to keep her in timeout!! I was in such shock that I really did not even know what to say. Brianna was crying, screaming and I rushed over to get her. I took her out of that daycare almost immediately. I reported the lady to social services although they never did tell me what became of that. We then registered her for the YMCA. I have to say that my YMCA was great. Soon after I found out I was pregnant with our second. It was interesting to compare Brianna to other kids her age. She had a hard time adjusting with people, couldn't sit in her chair like the other kids, couldn't deal with noises or dark, or too much light. The list goes on and on. She was and still is superior to her class mates in knowledge of colors, letters, books. She was reading to her preschool class 60 page books by the time she was 4. Still we knew that there is something different about her. She stopped growing and always had been at the top of her growth chart. Slowly we noticed she had stopped gaining weight, getting sick all the time and her behavior was getting worse and worse. I've lost count of how many doctors we took her to.
We started parent interactive therapy at 4. It had become a stark difference between her and other kids her age. I wanted to get ahold of it now, so that we were equipped to handle her. Its been a hard road with her, session after session. I did so much research on the effects of diet and dyes and ant inflammatory conditions. She had an endoscopy that diagnosed her lactose intolerance and inflammation in her gut. Not knowing as much as I know now I really wasn't too familiar with what that means. I bought soy milk for her to drink, not knowing how bad soy can be especially for a little girl. She began chronically throwing up non stop all the time. I was missing tons of work, sleep, and with another little girl I was strained in every aspect of my life. My husband was working 2 hours away and was never home. It was horrid.
Long story short I had become increasingly sick and lost 45+ pounds not exercising I was living in the bathroom and doubled over pain all the time. I needed blood transfusions and b12 injections along with iron and had gotten more than my bargain of pain, arthritis and other horrible things. I knew something wasn't right. I had several tests and none of them were showing what is wrong with my gut. My biopsies showed inflammation and lymphocytosis which my gastroenterology doctor told me was nothing! I was livid, exhausted, and sick! My heart tests showed more inflammation in my heart and another of other issues. I know that something is wrong I insisted. I switched doctors and she immediately went to town with all the testing she could do. It became apparent that I had inflammatory bowel and we needed someone to help. She sent me to Richmond to MCV and the doctor up there who specialized in all gut issues. He did a test for Celiac and my blood antibodies came back negative, then he did the genetic test and biopsies which came back stating that I had Celiac disease. I was told a lot of people don't show positive antibodies, especially when they have other autoimmune conditions because immune system is wrecked. Celiac disease is thought to be triggered by leaky gut and some other interesting things.
During this whole time of going through hell with Brianna and my own health Riley was having chronic hives, swelling, crying non stop all the time. I went through a number of daycare providers with her as well and she was too young for the YMCA. She was in horrid state all the time. I finally took her to allergist who did all these tests that our insurance didn't cover. (CRAZY EXPENSIVE) and NONE of them showed anything! It was so frustrating. I had to get epi pens because her reaction was getting worse, we did food journals and every which way trying to see what was triggering her problems. When Riley was 2 she wasn't talking, very very clingy still and was very quiet. I had taken her to allergists, dermatologists out the wazoo. I had one dermatologist doctor who even tried to give her an antipsycotic medication for her hives!!!! My therapist had suggested that she may be autistic I was at my wits end with these poor kids. I knew we had to do something so when my tests came back in Sept 2011 saying that I had the genes for Celiac I immediately started the kids on a gluten free diet. I didn't start mine until Oct 2011 because I had to have my biopsies which showed I was def having Celiac and my villi were blunted and damaged. I have permanent damage to my intestines and cant absorb nutrients like other people.
Slowly Riley's hives diminished She started growing and started interacting more. I am amazed looking back at how she was then and now how much she has grown intellectually and height wise. She is still short but not as much as she was. She talks more and now she acts normal like most 4 year olds. She does seem to have some sensory issues still with noise, yelling and she has an anxiety attack when we go on rides but Im hopeful that this will be grown out of as well. Brianna still has failure to thrive and fights to stay on the chart. She is under the 5% percentile for her weight and height. It has been a very trying scenario. She was diagnosed with extreme ADHD and mild Aspergers. She does a lot of weird things and says off the wall things. Everyday is an adventure! We still do therapy and she is trying hard to do the best she can. She is on the lowest dose of medications that will help. She is still struggling with being gluten free and feeling different but she has grown a lot. She was recently in a play and while that was a very hard thing for her and me to get through she did it!
We just spent yesterday in the hospital with Brianna being sick and extremely lethargic and vomiting non stop for 2 days. We are home now resting but I was reminded of how much I appreciate not having to have chronic visits for her. She has a number of illness' right now and I remembered that she has been healthy really the past year this is the first time really getting sick. Before she was sick all the time. Since going gf the girls have rarely had ear infections. Riley's asthma had gotten a lot better until recently as well. I am hoping this is a rare time for them and next week I will be able to testify that they are well recovered. I still have many problems and live in and out of the hospital and doctors visits but I am so thankful that my kids for the most part are pretty healthy. They both have severe sleep issues which we are still trying to balance but we take everyday as it comes. Thanks for your prayers for Brianna and the rest of our family.
"
We started parent interactive therapy at 4. It had become a stark difference between her and other kids her age. I wanted to get ahold of it now, so that we were equipped to handle her. Its been a hard road with her, session after session. I did so much research on the effects of diet and dyes and ant inflammatory conditions. She had an endoscopy that diagnosed her lactose intolerance and inflammation in her gut. Not knowing as much as I know now I really wasn't too familiar with what that means. I bought soy milk for her to drink, not knowing how bad soy can be especially for a little girl. She began chronically throwing up non stop all the time. I was missing tons of work, sleep, and with another little girl I was strained in every aspect of my life. My husband was working 2 hours away and was never home. It was horrid.
Long story short I had become increasingly sick and lost 45+ pounds not exercising I was living in the bathroom and doubled over pain all the time. I needed blood transfusions and b12 injections along with iron and had gotten more than my bargain of pain, arthritis and other horrible things. I knew something wasn't right. I had several tests and none of them were showing what is wrong with my gut. My biopsies showed inflammation and lymphocytosis which my gastroenterology doctor told me was nothing! I was livid, exhausted, and sick! My heart tests showed more inflammation in my heart and another of other issues. I know that something is wrong I insisted. I switched doctors and she immediately went to town with all the testing she could do. It became apparent that I had inflammatory bowel and we needed someone to help. She sent me to Richmond to MCV and the doctor up there who specialized in all gut issues. He did a test for Celiac and my blood antibodies came back negative, then he did the genetic test and biopsies which came back stating that I had Celiac disease. I was told a lot of people don't show positive antibodies, especially when they have other autoimmune conditions because immune system is wrecked. Celiac disease is thought to be triggered by leaky gut and some other interesting things.
During this whole time of going through hell with Brianna and my own health Riley was having chronic hives, swelling, crying non stop all the time. I went through a number of daycare providers with her as well and she was too young for the YMCA. She was in horrid state all the time. I finally took her to allergist who did all these tests that our insurance didn't cover. (CRAZY EXPENSIVE) and NONE of them showed anything! It was so frustrating. I had to get epi pens because her reaction was getting worse, we did food journals and every which way trying to see what was triggering her problems. When Riley was 2 she wasn't talking, very very clingy still and was very quiet. I had taken her to allergists, dermatologists out the wazoo. I had one dermatologist doctor who even tried to give her an antipsycotic medication for her hives!!!! My therapist had suggested that she may be autistic I was at my wits end with these poor kids. I knew we had to do something so when my tests came back in Sept 2011 saying that I had the genes for Celiac I immediately started the kids on a gluten free diet. I didn't start mine until Oct 2011 because I had to have my biopsies which showed I was def having Celiac and my villi were blunted and damaged. I have permanent damage to my intestines and cant absorb nutrients like other people.
Slowly Riley's hives diminished She started growing and started interacting more. I am amazed looking back at how she was then and now how much she has grown intellectually and height wise. She is still short but not as much as she was. She talks more and now she acts normal like most 4 year olds. She does seem to have some sensory issues still with noise, yelling and she has an anxiety attack when we go on rides but Im hopeful that this will be grown out of as well. Brianna still has failure to thrive and fights to stay on the chart. She is under the 5% percentile for her weight and height. It has been a very trying scenario. She was diagnosed with extreme ADHD and mild Aspergers. She does a lot of weird things and says off the wall things. Everyday is an adventure! We still do therapy and she is trying hard to do the best she can. She is on the lowest dose of medications that will help. She is still struggling with being gluten free and feeling different but she has grown a lot. She was recently in a play and while that was a very hard thing for her and me to get through she did it!
We just spent yesterday in the hospital with Brianna being sick and extremely lethargic and vomiting non stop for 2 days. We are home now resting but I was reminded of how much I appreciate not having to have chronic visits for her. She has a number of illness' right now and I remembered that she has been healthy really the past year this is the first time really getting sick. Before she was sick all the time. Since going gf the girls have rarely had ear infections. Riley's asthma had gotten a lot better until recently as well. I am hoping this is a rare time for them and next week I will be able to testify that they are well recovered. I still have many problems and live in and out of the hospital and doctors visits but I am so thankful that my kids for the most part are pretty healthy. They both have severe sleep issues which we are still trying to balance but we take everyday as it comes. Thanks for your prayers for Brianna and the rest of our family.
"
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