Saturday, January 26, 2013

I turned 36 this week-well one week ago.  Nothing exciting,  Demi is really struggling to keep to her no gluten diet.  She is hungry all the time-not sure what that is about.  Maybe it is a 'head' hunger or more of wanting the forbidden fruit.  She had some pain earlier this week, but I found some fiber one bar wrappers on her bed.  Hmmmm.....that explains the pain-makes me wonder how long it takes for this malt allergy of hers to rear its ugly head in her system.  She told me Saturday that she had a piece of bread at her friend's house in the am. I just reminded her to not eat the wheat and can't expect perfection from a 12 year old on a life altering diet for one week.  I have to remind her that she might not have immediate reactions-but a delayed reaction to the eosinophils attacking her system.

I carry around her ALCAT test results, especially when I am grocery shopping.  I am always forgetting what she can and can't eat.  I did make her cloud bread this week-that was a hit.  I made spaghetti squash for the first time and that tasted fantastic.  I didn't get a birthday cake because of Demi not having gluten and we are not going to bring in a cake and torment her with it, but I think I will bake that 3 ingredient peanut butter cookie recipe but instead make it a giant cookie cake and then frost it with some chocolate icing and the 3 of us can have a small cake.  Eating gluten free is expensive, but it will be fine because hopefully she will have a long remission time and not ever need tube feedings.  That is a sad outcome of this disease.

Now on to Jacob, I am not seeing a huge difference in his ADHD symptoms.  I give him his medicine at 745am so that is has kicked in by the time school starts at 830am.  When I pick him up from school at 315pm the medicine is all gone.  He still can't focus on his homework at night, gets frustrated by his math and spelling.  It has only been one week, I have to give it time.

He is getting a case evaluation from school.  The first meeting is slated for February, 6.  I am a nervous wreck over this. I am afraid they will tell me he is fine and he doesn't qualify for special education services.   I  think he will benefit from it. He also has sensory issues and he needs help with that.  I am going to start writing a list of things I observe and bring it to the meeting so I don't forget things.

I have been depressed a lot lately. I am sure it is because I have special needs children and I am just way overwhelmed.  I am internalizing everything I am feeling, because sadly; I just don't think anyone can grasp my feelings over my life.  I try to talk to Jason, but I come across as sounding like a whiny bitch that can't handle her life.  I sleep 12-15 hours a day (mostly when the kids are in school).  I go to sleep around 3am, wake up at 730am, get the kids off to school-crawl back into bed until  3pm; get them and then sit on the couch and nap until 5pm.    It takes everything I have to even make dinner at night or to take my kids where they need to go, help them with their homework.  Enough about me-I am depressed and that is that.

Friday, January 18, 2013

Demi has been on her new diet a week. I did break down when we got the list of foods she can't have. Malt is one of them-malt is in every thing from maltodextrose to all purpose flour to wheat bread all the way down to caramel coloring. She just can't have it. She has to be on a wheat free/gluten free diet. I do know that there are other kids that have this disease and are much worse off. Right now, Demi is okay. Like her doctor said, even though she can have an apple now, doesn't mean next month down the road her body is like um yeah we hate apples now and she has a flare up. I have to be vigilant and always be monitoring her symptoms. So for now, she is basically eating like a cavewoman. Fresh meat, some vegetable and some fruit. She does like Glutino brand cereal bars and noodles-they are gluten AND Wheat free. They use rice flour to make their products and Demi can have rice. She has stated that since starting this diet, her pain has decreased, but swallowing is still difficult. It will take time I guess. She is back to be a loving awesome kid. 

Now on to Jacob, he took his first dose of medicine and he got really tired this morning at school. I am sure it is a side effect, but it could be that he went to sleep finally at 1030pm and was up at 6am to play on Club Penguin. He took his medicine fine and when I picked him up at 315pm, he was calm and not talking a mile a minute. He didn't make any weird noises, waited his turn to speak to me-was just a completely different child. Then he did his homework and I have never seen him have neat handwriting and it was legible. I was crying on the inside that my child got help and he concentrated hard on his homework. He then played on Club Penguin some more and sat there quietly playing and was able to stay focused. He even got out of bed to tell me his beanie tigger was ripped. HE NEVER EVER GOT OUT OF BED BEFORE WITHOUT SCREAMING FOR ME TO COME UPSTAIRS. That alone is a huge step for him.

 I am so thankful that these two awesome creature were given to me to be their mom. I am not the best mom or the perfect mom, I am the right mom for them. Tonight was the first night in a very long time that I felt calm about my life. I am okay with it. It is what it is.

Tuesday, January 15, 2013

Today is my son's turn. He was just diagnosed with ADHD. I have suspected for a while that he had issues, I just didn't want to face the truth or pull my head out of the sand. He was also diagnosed with sensory processing disorder and moderate anxiety. His therapist is not ruling out Aspergers yet, but she is hoping some of his social awkwardness will get better with the ADHD medicine.

 I went to fill his prescription and one pharmacy has no stock. They told me this other pharmacy across town does. Okay, drive 20 minutes there and hand them the script and am immediately told the doc filled it out wrong. WTF is what I thought. She didn't write the numerical dose out for the number 30. So, it won't be until Thursday that he can take his medicine, because the pharmacy person has to call and ask the doc if she can hand write the numerical number of 30. Oh well laws are laws on schedule II drugs.

 I am hoping that this medicine helps son focus in school and he can concentrate better and be better organized. He is not one of those kids that are jumping all over furniture, running around like he just inhaled 50 pounds of sugar; he just lacks focus and attention. I can live with that at home, I just him to be successful in the school environment and achieve all that I know he is capable of.

Monday, January 14, 2013

I am back to blogging under a new blog. My life has changed drastically over the last few years. The most recent changes have been for my children. My daughter has been diagnosed with a rare autoimmune disease called eosinophilic esophagitis. What this means is that she is allergic to food on the inside of her body. This all started on October 5th when she texted me while I was bowling that she was in massive pain. I came home and she had a slight fever and pain in her lower right quadrant. I took her to the ER and they ran all sorts of tests on her and said nothing was wrong and sent us on our way. I was like okay. A few days went by, and her pain was getting no better, so they sent her for a CT scan and said she is constipated on the verge of intestinal blockage. Give her Miralax and she should be fine. I give her the miralax and she still only has one bowel movement a day and still in massive pain. After a week out of school, she goes back still in pain.

 Later in the month, we go to a bowling party and the next day, daughter wakes up complaining of massive pain in her upper right quadrant. Take her back to the ped and was basically told she has a benign stomach and there is nothing wrong and that she needs to go to school unless she is vomiting and that she is using this as a ploy to get out of school. Okay, daughter is an 98% grade point student, EVEN with missing 13 days of school! So fuck that line of crap. The ped orders blood work anyway. Get the results back and the doctor says she is fine, but I looked over the results and see her bilirubin in high. This makes me go hmmmmm. Well I am not a mom to sit around and take a let see what happens approach. I have done that for a month and my child went from 144 to 128 pounds in 4 weeks and her ped was throwing around anorexia at us. Um no, my child likes to eat; eating hurts her-so why eat?

I needed to find an answer for my child. I needed to be her advocate. Anyway, found a GI doctor (not a ped GI specialist-I wanted someone to think outside of the box) and showed him the results of her blood work. He ordered an ultrasound of her entire abdominal cavity, special blood work (to rule out cancer b/c of how much weight she lost in a short amount of time). Those results came back good-thank goodness. She was still having pain and then he ordered an EGD. They scoped her esophagus and upper stomach. He told me there was ulceration and inflammation in her esophagus and stomach. She had to be on antacid medicine. Went back 2 weeks later once he got the biopsy report. We had an answer-she has high level of eosinphils in her esophagus and stomach-none are suppose to be there. His recommendation is to do an iummunoassay blood test called ALCAT. (more on this whole ALCAT test a later date) We get that test done right before Christmas. All I am thinking during this time, is that I hope for the cost of this test (I had to pay for the test upfront) they find something. Well they found a lot that she can't have, but then to spin it on the positive there is still a lot she can eat. The doctor also told us, that while this is a life long disease, there will be foods on the 'green' zone that might cause her trouble one day, so always keep on eye on her. He also asked daughter if she has trouble swallowing. Yes she does. One complication to EoE is there is trouble with swallowing and might need her esophagus dilated to prevent food from getting stuck and causing choking.

 I did get joy out of going to her ped and telling the ped that daughter does in fact have a real issue with her stomach and this was not made up ploy to get out of going to school. The ped was shocked when I told her she has EoE, but the ped didn't apologize to us for her attitude back in October and just asked Demi on how much she planned on losing???? WTF? My child is not trying to lose weight, she can't eat-she loses. She is becoming a failure to thrive child. So as of right now, Daughter has to be basically be on a gluten free diet to live. I am still confused and learning how to read labels. I had no idea how much malt is in products-she can't have malt and therefore that led to eliminating all gluten products. She also can't have bell peppers and duck. She was crushed with the peppers bc she ate those like apples. Duck-we never eat, so no big loss there.