We now have a pediatrician on our team. Yay! Her name is Dr. Melissa Seibel and she totally rocks. She has a super sweet, quiet, almost shy personality, which is in stark contrast to me so it should work out great!
Our first visit with her consisted of me going through my notebook. I don't think I have referenced "the notebook" yet in any of my posts. It's basically chock full of EVERYTHING that has ever been done on Mykaya. Test results, assessment forms, doctor reports, etc. It makes appointments like these very easy; you should see the look on people's faces when I open the book and they see what's in there. Dr. Seibel's reaction was "oh wow, you have everything!" I've learned that nobody else is going to keep track of it all in one place. It was great that I have it because even though I had requested records from several places at the beginning of February in anticipation of this appointment, not much of it had arrived. Pretty disappointing.
The first thing we did was go over the MRI results from November. The day of the MRI, we were met in recovery by a neurologist, who told us that they had found nothing concerning. We were sent on our way with a copy of the images on a CD (which I requested). I later called and got the report of the MRI and was stunned to see that it said there was a problem with her pituitary gland. It said "possible pituitary hypoplasia" due to a smaller than normal pituitary gland. I did some research on that and there isn't much out there. Your pituitary is the master gland in your brain which communicates with the endocrine system. The main thing it regulates is the hormones in your body, including growth.
Over the last year or so we have noticed that Mykaya seems to be growing "out" rather than "up". When they measured her at Dr. Seibel's office she measured 48.5" tall and weighed 66.6 lbs. She is at the 38th percentile for height and 88th percentile for weight. That was concerning to me because she has always been right at the 50th percentile for both height and weight. I talked to Dr. Seibel about that and she said she will not be worried until she goes below the 25th percentile for height. I (reluctantly) agreed. But she does want me to take her in for some bloodwork to check her thyroid function because of her rapid unexplained weight gain. We will be doing that today after OT/ST.
We are going to try out a new tactic for preparing her for the blood draw, which is no preparation. She has no idea and she won't until we get in there. I'm not sure if it's a good idea or not, but we are at a loss. Last time, she was fully prepared and still freaked out because of the anticipation. We're hoping it will happen so fast that she won't have time to really think about it too much. I didn't want it to be looming over her all day today. We will be taking her up to Dr. Seibel's office to get numbing cream put on, then heading down to the lab. The worst thing about this is that when we were preparing for the shot last month, she kept asking "are they gonna take my blood out?" and I kept reassuring her that they weren't. So what now? I'm thinking about having us both get poked at the same time so we can go through it together. I will let you guys know how things go, and the results should be back tomorrow.
The other thing we went over was the abnormal EEG. She would like to set us up with a neurologist to order another EEG and see if we get the same results again. We can then go from there as far as whether a diagnosis of a seizure disorder is appropriate, or if we can get some more information. I was very agreeable to this as we did not get a lot of information the first time. We are scheduled to meet with Dr. Siruwan (the neurologist) on April 22. The EEG will be sometime after that.
Cross your fingers for us for the blood draw today!
With love,
The Schulz's
Wednesday, March 2, 2011
Thursday, February 24, 2011
Mother Warriors
Yesterday I received 2 books in the mail that have possibly changed my life, and hopefully Mykaya's. My amazing friend, Megan (love you girl!!) sent me 2 of Jenny McCarthy's books. As you guys might know, Jenny's son is autistic and she has been a huge advocate for awareness and also non-traditional therapies and such. I have read about 2/3 of the first book, Mother Warriors, and am just blown away.
First of all, we are all hearing about the whole "do vaccines cause autism or not", and there are sooo many perspectives on this and not a whole lot of research to support it. I personally do not feel that the vaccines themselves can cause autism, I feel that it may be the irresponsibleness (is that a word?) of administering the vaccines that can hurt some children. For instance, kids should not have so many shots at the same time, so young, when they're sick, or are immuno-suppressed. They also should not be given shots that contain Thimerasol (mercury). I now ask each time the girls get a shot just to be sure. Being a young uneducated mom, I held down both my girls for the minimum vaccines required (they did not get the chickenpox vaccine until they turned 5 and have never received a flu shot) but Laney's were given in a more spread out manner than were Mykaya's. Neither child was ever vaccinated when she was sick, but they both received 33 shots just like most babies. The interesting thing about that is in 1983, the vaccine schedule was so different. I found a comparison between then and now here. Interesting. Just my 2 cents.
I also am very interested in the naturopathic manner that she has chosen to help "heal" Evan. I have always been intrigued in homeopathy and follow most beliefs of homeopathy without even knowing it. For example, I hardly EVER take medicine, nor do I give my kids medicine. I feel that it's important to find out and treat what is going on within my body before I will treat the symptoms, and allow my body to heal itself without intervention. I always just thought I was afraid of medicine, which I guess I am. I am a very healthy person, and so are both my girls. With the exception of Mykaya's aspergers, both of them are in excellent physical health. Laney was diagnosed with mild asthma around age 2, but hardly ever needs any breathing treatments (once a year if that). We eat a well-balanced diet and both kids appreciate a wide variety of foods. We do not have white bread in our house ever-I'm not even sure my kids know it exists. If Mykaya could, she would eat plain white rice for every meal! We do grapes, apples, strawberries and oranges for snacks, we try to do whole-grain whenever possible, and no sugary drinks or soda here! Laney's favorite drink is cranberry juice while Mykaya prefers water to anything else.
Because of what I have already learned and researched about this method of biomedical treatment, I would love to implement some of these things into Mykaya's plan of treatment. After discussing things with Jeremy, we've decided we will probably start with the GF/CF (gluten-free and casein free) diet. Funny thing is, Mykaya already kind of keeps herself off of almost all dairy on her own-she refuses to drink milk, she doesn't like cheese and won't even eat yogurt. Really the only stretch here will be not cooking with dairy and making sure we don't have ice cream in the house (which is a rarity anyway). Sherbet only :) The gluten-free is gonna be the hard part! I am going to switch our meal plan to the gluten-free so that will be a huge help. We are also blessed to have a wonderful school that has a dietician on staff to help with dietary restrictions. But even their normal menu is pretty darn nutritious compared to a lot of schools! Check it out here with the nutritional analysis here.
Lastly, I want a consultation with a naturopathic doctor. We have a couple here in Bismarck, but I think I've chosen this one. Since insurance does not cover these costs, I will be very careful about what we get into with her. I definitely want her tested for pyroluria as she has some of the symptoms, and several other deficiencies that I think she may have.
After reading this book and researching natural medicine a bit, I have a whole new vocabulary! I feel like a whole world is opened up that I didn't even know existed. Of course, I approach everything with a healthy amount of skepticism, so am not looking for a magic cure-all. If some of her symptoms can be alleviated, why not give it a try. One of the huge life lessons I have learned from all of this is flexibility and openmindedness. I am looking into things I would have never thought of looking into. I can't be closed-minded about anything, and I have to keep my own feelings and anxieties about certain things out of this. I will still trust my instincts but I can't let my adult jadedness stop something that could really help my daughter. It's been a hard lesson but a necessary one. I look forward to keeping you all informed!
With love,
The Schulz's
First of all, we are all hearing about the whole "do vaccines cause autism or not", and there are sooo many perspectives on this and not a whole lot of research to support it. I personally do not feel that the vaccines themselves can cause autism, I feel that it may be the irresponsibleness (is that a word?) of administering the vaccines that can hurt some children. For instance, kids should not have so many shots at the same time, so young, when they're sick, or are immuno-suppressed. They also should not be given shots that contain Thimerasol (mercury). I now ask each time the girls get a shot just to be sure. Being a young uneducated mom, I held down both my girls for the minimum vaccines required (they did not get the chickenpox vaccine until they turned 5 and have never received a flu shot) but Laney's were given in a more spread out manner than were Mykaya's. Neither child was ever vaccinated when she was sick, but they both received 33 shots just like most babies. The interesting thing about that is in 1983, the vaccine schedule was so different. I found a comparison between then and now here. Interesting. Just my 2 cents.
I also am very interested in the naturopathic manner that she has chosen to help "heal" Evan. I have always been intrigued in homeopathy and follow most beliefs of homeopathy without even knowing it. For example, I hardly EVER take medicine, nor do I give my kids medicine. I feel that it's important to find out and treat what is going on within my body before I will treat the symptoms, and allow my body to heal itself without intervention. I always just thought I was afraid of medicine, which I guess I am. I am a very healthy person, and so are both my girls. With the exception of Mykaya's aspergers, both of them are in excellent physical health. Laney was diagnosed with mild asthma around age 2, but hardly ever needs any breathing treatments (once a year if that). We eat a well-balanced diet and both kids appreciate a wide variety of foods. We do not have white bread in our house ever-I'm not even sure my kids know it exists. If Mykaya could, she would eat plain white rice for every meal! We do grapes, apples, strawberries and oranges for snacks, we try to do whole-grain whenever possible, and no sugary drinks or soda here! Laney's favorite drink is cranberry juice while Mykaya prefers water to anything else.
Because of what I have already learned and researched about this method of biomedical treatment, I would love to implement some of these things into Mykaya's plan of treatment. After discussing things with Jeremy, we've decided we will probably start with the GF/CF (gluten-free and casein free) diet. Funny thing is, Mykaya already kind of keeps herself off of almost all dairy on her own-she refuses to drink milk, she doesn't like cheese and won't even eat yogurt. Really the only stretch here will be not cooking with dairy and making sure we don't have ice cream in the house (which is a rarity anyway). Sherbet only :) The gluten-free is gonna be the hard part! I am going to switch our meal plan to the gluten-free so that will be a huge help. We are also blessed to have a wonderful school that has a dietician on staff to help with dietary restrictions. But even their normal menu is pretty darn nutritious compared to a lot of schools! Check it out here with the nutritional analysis here.
Lastly, I want a consultation with a naturopathic doctor. We have a couple here in Bismarck, but I think I've chosen this one. Since insurance does not cover these costs, I will be very careful about what we get into with her. I definitely want her tested for pyroluria as she has some of the symptoms, and several other deficiencies that I think she may have.
After reading this book and researching natural medicine a bit, I have a whole new vocabulary! I feel like a whole world is opened up that I didn't even know existed. Of course, I approach everything with a healthy amount of skepticism, so am not looking for a magic cure-all. If some of her symptoms can be alleviated, why not give it a try. One of the huge life lessons I have learned from all of this is flexibility and openmindedness. I am looking into things I would have never thought of looking into. I can't be closed-minded about anything, and I have to keep my own feelings and anxieties about certain things out of this. I will still trust my instincts but I can't let my adult jadedness stop something that could really help my daughter. It's been a hard lesson but a necessary one. I look forward to keeping you all informed!
With love,
The Schulz's
Wednesday, February 23, 2011
Stealing
Sooo...Mykaya did it. The thing all kids do at some point and usually stop after being scolded a time or two: she stole something. The circumstances are pretty sad though, and it made me wonder how many times she has actually done this and I didn't know.
The learning disabilities coordinator I mentioned in this post, Mrs. Serr (pronounced seer), took Mykaya into her office last week for a small portion of the testing they will be doing with her. I talked to Mykaya on the phone that day and she told me she had gone to see Mrs. Serr and that she had done so well, she was allowed to choose a prize. She chose a clear cube-shaped paperweight with a rose inside. When I got home that night, Mykaya had left me a note on the floor with the rose that said "Here is the rose I got from Mrs. Serr. Ainit beautiful? Love Mykaya". I thought it was really pretty but a strange prize for a child. In the morning, it was gone so I knew she had taken it to school or put it away. I didn't think of it again.
That afternoon I got an email from Mrs. Jahner. She said she had noticed Kaya with the paperweight and hadn't seen it before their field trip to the city library that morning, so she was concerned that's where she may have gotten it from. She said when she asked Mykaya where she got it, she replied "I don't know, I guess my house." I replied that she actually had gotten it from Mrs. Serr the day before for doing a good job. It was a red flag for me that she had been so excited to tell me she got it from Mrs. Serr but then told Mrs. Jahner a different story. I asked her to find out. She emailed later to say that Mrs. Serr had not given it to her and Mykaya had stolen it while she was in her room. Mrs. Serr was shocked and had no idea when she could have taken it-she was with her the whole time. Mykaya was walked down there and had to give it back. When they asked her why she stole it, she said "because it was so beautiful". If you know Mykaya, that probably just broke your heart. She is one of the most kindhearted people and obviously had no concept of the fact that it belonged to someone else. She wanted it, so she took it. I apologized and told her we would nip this in the bud.
When I got home that night, I explained stealing to her and reiterated what Mrs. Jahner and I had talked about. She told me Mrs. Serr had told her that was one of her favorite things because her daughter had given it to her. Yet, she still stole it. Sigh. I scolded and scolded and told her she would need to write her a letter to apologize. I told her what to say in the letter, and Laney helped her draw a picture of the paperweight. We sealed it all in an envelope to give to her the next time she sees her. I felt this was the most appropriate way for her to apologize because I am afraid Mykaya will have forgotten all about it by the next time she sits down with her, and I feel that Mrs. Serr deserves an apology.
Hopefully, this will not happen again. If it does, we know what to do. :)
With love,
The Schulz's
The learning disabilities coordinator I mentioned in this post, Mrs. Serr (pronounced seer), took Mykaya into her office last week for a small portion of the testing they will be doing with her. I talked to Mykaya on the phone that day and she told me she had gone to see Mrs. Serr and that she had done so well, she was allowed to choose a prize. She chose a clear cube-shaped paperweight with a rose inside. When I got home that night, Mykaya had left me a note on the floor with the rose that said "Here is the rose I got from Mrs. Serr. Ainit beautiful? Love Mykaya". I thought it was really pretty but a strange prize for a child. In the morning, it was gone so I knew she had taken it to school or put it away. I didn't think of it again.
That afternoon I got an email from Mrs. Jahner. She said she had noticed Kaya with the paperweight and hadn't seen it before their field trip to the city library that morning, so she was concerned that's where she may have gotten it from. She said when she asked Mykaya where she got it, she replied "I don't know, I guess my house." I replied that she actually had gotten it from Mrs. Serr the day before for doing a good job. It was a red flag for me that she had been so excited to tell me she got it from Mrs. Serr but then told Mrs. Jahner a different story. I asked her to find out. She emailed later to say that Mrs. Serr had not given it to her and Mykaya had stolen it while she was in her room. Mrs. Serr was shocked and had no idea when she could have taken it-she was with her the whole time. Mykaya was walked down there and had to give it back. When they asked her why she stole it, she said "because it was so beautiful". If you know Mykaya, that probably just broke your heart. She is one of the most kindhearted people and obviously had no concept of the fact that it belonged to someone else. She wanted it, so she took it. I apologized and told her we would nip this in the bud.
When I got home that night, I explained stealing to her and reiterated what Mrs. Jahner and I had talked about. She told me Mrs. Serr had told her that was one of her favorite things because her daughter had given it to her. Yet, she still stole it. Sigh. I scolded and scolded and told her she would need to write her a letter to apologize. I told her what to say in the letter, and Laney helped her draw a picture of the paperweight. We sealed it all in an envelope to give to her the next time she sees her. I felt this was the most appropriate way for her to apologize because I am afraid Mykaya will have forgotten all about it by the next time she sits down with her, and I feel that Mrs. Serr deserves an apology.
Hopefully, this will not happen again. If it does, we know what to do. :)
With love,
The Schulz's
Tuesday, February 22, 2011
Psychological Assessments
Last night I went through all the paperwork - forms, assessments, etc. that we have to fill out for various agencies and sat down for a good hour and filled them all out. It was sorta exhausting but obviously worth it. The 2 assessments that the school psychologist, Jessica, gave us I was calling "Mykaya's checklist". It was weird, it was like the questionnaires were made for her.
The first one was called the BRIEF assessment, which is a test of Executive Functioning. Apparently she must have quite a few deficits in that area :( You can read more about EF and what it is here. I felt a little weird because looking back at all the answers, I mostly answered with 'often a problem'. 68 times out of 86 questions, to be exact. 13 of them were 'sometimes a problem', which leaves 5 out of 86 answers being 'never a problem'. A few examples: "When given 3 things to do, remembers only the first or last" (Often-actually always, but that's not an option on this test), "Forgets to hand in homework, even when completed" (again, this is always. 'Often' gets the point across though), and "Needs help from an adult to stay on task" (Often). Now if that's not somebody taking the time to pay attention and using the appropriate assessments, I don't know what is. Yay Jessica!
The other form was the Social Responsiveness Scale. This assessment was basically 65 questions about how Mykaya does in different settings. I had to choose between 4 different levels on this one: 1.Not True, 2.Sometimes True, 3.Often True and 4.Almost Always True. For example, "seems much more fidgety in social situations than when alone" (4) "has trouble making friends, even when trying her best" (4) or a huge one, "offers comfort to others when they are sad" (1). When someone is sad, Mykaya is clearly bothered and uncomfortable but is unsure what to do about it. She usually just walks away.
Honestly, some of this stuff probably pertains to a lot of kids, some of the time. But in Mykaya's case, this is our reality, all of the time. When her OT eval showed her to be 3 years behind, after I got past the initial shock, it was like yeah that's about right. It's like she was growing and changing up until about 3-4 years old, then just STOPPED. You look forward to that part of being a parent; watching your kids grow, mature and become more independent. Sure, she's grown, but she really hasn't matured at all since she was about 4 years old. To accurately describe my feelings, it's like my baby is trapped somewhere and can't find her way out, and I can't find her either.
Hopefully we are that much closer to the keys which will unlock her prison.
With love,
The Schulz's
The first one was called the BRIEF assessment, which is a test of Executive Functioning. Apparently she must have quite a few deficits in that area :( You can read more about EF and what it is here. I felt a little weird because looking back at all the answers, I mostly answered with 'often a problem'. 68 times out of 86 questions, to be exact. 13 of them were 'sometimes a problem', which leaves 5 out of 86 answers being 'never a problem'. A few examples: "When given 3 things to do, remembers only the first or last" (Often-actually always, but that's not an option on this test), "Forgets to hand in homework, even when completed" (again, this is always. 'Often' gets the point across though), and "Needs help from an adult to stay on task" (Often). Now if that's not somebody taking the time to pay attention and using the appropriate assessments, I don't know what is. Yay Jessica!
The other form was the Social Responsiveness Scale. This assessment was basically 65 questions about how Mykaya does in different settings. I had to choose between 4 different levels on this one: 1.Not True, 2.Sometimes True, 3.Often True and 4.Almost Always True. For example, "seems much more fidgety in social situations than when alone" (4) "has trouble making friends, even when trying her best" (4) or a huge one, "offers comfort to others when they are sad" (1). When someone is sad, Mykaya is clearly bothered and uncomfortable but is unsure what to do about it. She usually just walks away.
Honestly, some of this stuff probably pertains to a lot of kids, some of the time. But in Mykaya's case, this is our reality, all of the time. When her OT eval showed her to be 3 years behind, after I got past the initial shock, it was like yeah that's about right. It's like she was growing and changing up until about 3-4 years old, then just STOPPED. You look forward to that part of being a parent; watching your kids grow, mature and become more independent. Sure, she's grown, but she really hasn't matured at all since she was about 4 years old. To accurately describe my feelings, it's like my baby is trapped somewhere and can't find her way out, and I can't find her either.
Hopefully we are that much closer to the keys which will unlock her prison.
With love,
The Schulz's
Monday, February 21, 2011
First OT Goal: Brushing Teeth - Conquered!!
Mykaya has been doing so good with brushing her teeth! It used to be a battle to even get her in the bathroom to brush them because she had such a hard time. Then usually I would end up brushing them for her because we both would be frustrated. Brandi, her OT, just had 3 sessions devoted to toothbrushing and she now goes into the bathroom and does it all on her own with just a verbal cue! We have a visual chart hung up on the mirror front and center that has pictures and words to go step by step through it. Because of the amazing difference this has made for Mykaya, we will probably be implementing the same idea into her learning plan. So exciting! We found something that works :) Love OT!
Mykaya tries so hard; I'm glad she is finally getting to reap the rewards of her efforts and she can (hopefully) see the light at the end of the tunnel like we can. :)
Next goal on the agenda: showering/bathing!
With love,
The Schulz's
Mykaya tries so hard; I'm glad she is finally getting to reap the rewards of her efforts and she can (hopefully) see the light at the end of the tunnel like we can. :)
Next goal on the agenda: showering/bathing!
With love,
The Schulz's
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