I have been meaning to do an update on Abby since January when it marked a year of her being diagnosed with her auto-immune disease Dermatomyositis. I knew this would be a LONG and emtional post for me so I have kept putting it off. Well, today is the day ~ I'm just doing it! I have several pictures of Abby with her doctors and so I thought I would go through each doctor and give their latest report. If I don't have a picture of a particular doctor I will take one the next time I see them and add it in later. So here we go...
Dr. Aleta DaSilva ~ Abby's Pediatrician
This lady is truly a blessing in our lives. I was perfectly happy with the pediatrican we had at the Gilbert office of Mesa Peadiatrics - Jennifer Wallace. When they opened the San Tan office it was closer to us but about the same distance time wise as the Gilbert office - one with freeway and one without - and I decided to just stay where I was. However, I ended up taking kids to the San Tan office a few times when I was trying to get a same day appointment and that office was the only one with an opening. We saw Dr. DaSilva those few times and I decided I liked her too and had us switched over. Totally simple and random. This was probably in 2006. When I took Abby to the doctor in Nov. 2008 for the pain in her legs we did not see Dr. DaSilva as again I was making a same day appointment and had to take whoever was available. Dr. Lassak assured me that it was probably just growing pains but did the standard blood work and x-rays to be safe. Everything came back fine (I remember them saying, "She doesn't have leukemia." I was happy about that!) By the end of December Abby could not get up and down off the floor so I called Dr. DaSilva and explained what was going on. This was Dec. 29, 2008. She told me on the phone that what was coming to her mind was a disease called Dermatomyositis that caused immflamtion of the muscles. She only knew this because a doctor friends of hers had the disease as a child. December 30th we were in the office getting more blood work done and New Years Eve she called to tell me that certain enzymes in Abby's blood were elevated and that she had talked to a rheumotologist at Phoenix Children's Hospital. We would be meeting with him January 2, 2009 and if he confirmed the diagnosis then Abby would be hospitalized for 3 days to start on heavy doses of medication. I remember her saying, "The good new is that this is not fatal." Right then I knew we would be able to handle it. Why this is all so amazing to me is because this disease is so rare (3-5 kids out of a million) that most pediatricians have no clue about it. Kids are sent to neurologists for testing and then to rheumotologists for biopsys, etc. It takes months and months to diagnose. Here we had a diagnosis in 3 days. I will forever be grateful that I decided to change doctors. She is always asking about Abby and when she sees Abby will give her a big hug. We go back to see her for Abby's 8 year well check this month.
Dr. Michael Shishov ~ Abby's Rheumotologist
This guy is one of the top children's rheumotologists in the country and he happens to work here at Phoenix Children's Hospital. Another blessing!! He treated Abby's case aggressively from the start. First with the hospitalization and then with an IVIG treatment (which pumped immuno-globulins into her body through an IV once a month). We started the IVIG a month after she was diagnosed. Dr. Shishov said that usually he didn't start the IVIG until 6 months into it but he could tell she would need it so started it sooner. I was also told that most patients needed 6 treatments - Abby only needed 3!! As for other medications she was put on Prednisone, Methotrexate, Plaquenil, Prevacid (later switched to Prilosec) , Folic Acid, and Calcium/Vitamind D pills. 3 medicines treated the disease and the other 3 treated the side effects of the first 3. I was told sometimes you don't know what is worse - the disease or the medication - but in order to get better they have to be on the medicine. She constatnly complained about not feeling well. She was not a happy girl. Abby gained 30 pounds in 4 months due to the side effects of the Prednisone which was started at 60 mg. He started tapering the Prednisone after only a few months and she was off it, as well as 3 other of her meds, by December 2009. Now she only takes her folic acid every morning and has her methotrexate shot once a week. Before each appointment - which occur about every 3 months - she has her blood taken. As of her last appointment in April of this year there is no sign of the dermatomyositis!! She is running and playing like normal. She is so happy to be able to do the monkey bars again and has the blisters to prove it.
Juevenile Dermatomyositis falls under the arthritis category. It is not curable and it could come back.
What is intersting - and another tender mercy- is that with how rare this disease is (the arthrisits isn't particularly rare - just this form of it) I was able to meet someone who has a daughter with it. Her name is Lisa and she works in my Uncle Paul's dental office as a hygenist. Her daughter, Jordyn, was diagnosed with dermato a year and a half or so before Abby. She was in 4th grade when diagnosed - Abby was in 1st. The treatment plans were so different - no hospitalization, no IVIG, no shot for Jordyn. It's strange how much more knowledge they can have about what helps in so short a time. It has been nice to have someone to compare notes with about all this. This is also how I know about how long it can take to get a diagnosis as they had to go through quite the process. Abby was able to meet Jordyn shortly after she was diagnosed.
This is a picture of Abby and Laura - the nurse who gave her her IVIG. It was taken in May 2009 on the day Abby learned she didn't have to have any more treatments. This was a very happy day!!
Jessica ~ Abby's Physical Therapist
Dr. Shishov wanted us to start physical therapy right away. Lisa told me it took them about 2 months before they were able to get Jordyn started. It took us a week - another blessing!! Abby LOVED physical therapy. Jessica had all kind of stretches and exercises planned to help her get stronger - but it was all fun and games to Abby. One that I remember them doing is playing Connect 4. Jessica would spread Abby's pieces out over the room and Abby would have to skip or crab walk or walk backwards, etc. to get her pieces. They also played basketball, beanbag toss, balance beam, kicking exercises...again she LOVED it. We were done with physical therapy in June 2009.
Dr. Salevitz ~ Abby's Pediatric Eye Specialist
Dr. Shishov also started having us go see a pediatric eye specialist. One reason is because of side effects of the medication affecting her retina and possibly causing cataracts and also because the disease itself can cause inflammation of the eyes. We see him every 4 months and he always tells me how everything is just fine.
Dr. Shishov also started having us go see a pediatric eye specialist. One reason is because of side effects of the medication affecting her retina and possibly causing cataracts and also because the disease itself can cause inflammation of the eyes. We see him every 4 months and he always tells me how everything is just fine.
Heidi Knoblock ~ Psychologist through LDS Family Services
Abby has always been difficult. I have a lot of thoughts on why this is but whatever the reason she is HARD. I remember after Abby's 5 year well check Dr. DaSilva telling me that if I thought I was doing my best but that it just wasn't working that maybe I should take Abby to a child psychologist. I thought - you don't put a 5 year old in therapy!! However when Abby was 6 and cutting her clothes because she was mad at me for not listening to her I reconsidered the matter. I still wasn't 100% sure that that was what I wanted to do until shortly after she came down with her dermato. I figured that with all the changes that were going on inside and out it would be good for her to have someone to talk to and I made an appointment with LDS Family Services. Heidi was good. She helped me realize that Abby's behavior problems had 3 possible reasons - 1. her and I don't "mesh" well (no kidding!) 2. she was at an age where she was wanting more control and it was normal to push the limits some 3. she was SO out of control with her body that she was trying to control anything she could. This made sense. Heidi also shared with me stories of her and her daughter's relationship and I saw that even psychologists don't always know what to do and their children are not perfect. However I felt she spent way too much time talking to me (which was great for me as I got to vent) and not enough time talking to Abby. The appointments kind of just fizzled out and while I've contacted her to see if she'd like to see us again she hasn't returned my calls. Heidi is the one who started us down the sensory processing disorder path which I am grateful for. Funny story about the picture of Heidi and Abby; or I guess not so funny really ~ they are each holding up a piece of gum because in their session that day Abby snuck a piece of gum and then lied about it so they were able to have a nice little discussion on the topics of honesty and repentance. Ü
Abby has always been difficult. I have a lot of thoughts on why this is but whatever the reason she is HARD. I remember after Abby's 5 year well check Dr. DaSilva telling me that if I thought I was doing my best but that it just wasn't working that maybe I should take Abby to a child psychologist. I thought - you don't put a 5 year old in therapy!! However when Abby was 6 and cutting her clothes because she was mad at me for not listening to her I reconsidered the matter. I still wasn't 100% sure that that was what I wanted to do until shortly after she came down with her dermato. I figured that with all the changes that were going on inside and out it would be good for her to have someone to talk to and I made an appointment with LDS Family Services. Heidi was good. She helped me realize that Abby's behavior problems had 3 possible reasons - 1. her and I don't "mesh" well (no kidding!) 2. she was at an age where she was wanting more control and it was normal to push the limits some 3. she was SO out of control with her body that she was trying to control anything she could. This made sense. Heidi also shared with me stories of her and her daughter's relationship and I saw that even psychologists don't always know what to do and their children are not perfect. However I felt she spent way too much time talking to me (which was great for me as I got to vent) and not enough time talking to Abby. The appointments kind of just fizzled out and while I've contacted her to see if she'd like to see us again she hasn't returned my calls. Heidi is the one who started us down the sensory processing disorder path which I am grateful for. Funny story about the picture of Heidi and Abby; or I guess not so funny really ~ they are each holding up a piece of gum because in their session that day Abby snuck a piece of gum and then lied about it so they were able to have a nice little discussion on the topics of honesty and repentance. ÜDr. Mark McOmber ~ Abby's Gastroenterologist
Abby frequently complains of tummy aches and has since she was 4 or 5. It has definately gotten better - a lot better. I took her to the doctor several times about it. The first time Dr. DaSilva thought it was probably just a way to get attention. The 2nd time she said it was due to constipation. When Abby was diagnosed with her dermato it says right there in the paperwork that one of the symptoms in stomach aches. Well there you go I thought. But she continued to complain and continued to complain. It was because hard because her behavior was very inconsistant with what she was telling me. I knew the Prednisone could cause stomach issues but she was on medication to counteract that. Dr. Shishov couldn't see any reason why she should be having these frequent tummy aches so he sent us to a GI doctor. Dr. McOmber ran all kinds of tests and even performed a colonoscopy and endoscopy on her at the end of June 2009.
Everything came back normal. He does have her take Miralax as needed because she can struggle with constipation as a side effect of stress and changes in her body. The only other reason we can come up with for her tummy troubles is anxiety. We go back to see him in June and I'll be happy to tell him that the stomach aches are much less.
Tracy ~ Abby's Occupational Therapist
As I mentioned Heidi suggested Abby might have some problems with sensory processing. For example ~ hair brushing, teeth brushing, baths, noises, touch, ect. See that's the thing with Abby. It's not that Abby just struggles with being too loud and rough, or just struggles with not liking to wear sock and shoes, or just struggles with not following instuctions, or just struggles with sneaking and lying, or just struggles with not knowing how to get along with others, or just struggles with knowing how to act in different situations, or just struggles with remembering things, or just struggles with licking her hands and feet, or just struggles with defiance and manipulation...she struggles with ALL of it!!! I started looking into sensory processing disorder and read a great book called the Out of Sync Child (that several of you reccommended). It kind of all made sense to me and while I did not think Abby was an extreme case I came to realize that if you aren't processing things quite right it's going to affect your behavior. We were referred to a developmental pediatrician, Dr. Timoty Jordan. That appointment was one of the worst experiences of my life. He told me there was no such thing as sensory processing disorder and that it was all made up by occupational therapists to meet their own needs. I was very flustered and felt we weren't given the chance to explain our situation very well. He said Abby just got too much attention for her misbehavior and that we needed to pick one or two of her behaviors that bothered us most. When she did those things we were supposed to lock her in an empty room for a half hour. If that didn't work the we were to lock her in for an hour. And then we were to come back and see him in a month. We did not go back. He did do some testing and said that Abby did not have autism or any developmental delays which is great but that is not why we were there.
As I mentioned Heidi suggested Abby might have some problems with sensory processing. For example ~ hair brushing, teeth brushing, baths, noises, touch, ect. See that's the thing with Abby. It's not that Abby just struggles with being too loud and rough, or just struggles with not liking to wear sock and shoes, or just struggles with not following instuctions, or just struggles with sneaking and lying, or just struggles with not knowing how to get along with others, or just struggles with knowing how to act in different situations, or just struggles with remembering things, or just struggles with licking her hands and feet, or just struggles with defiance and manipulation...she struggles with ALL of it!!! I started looking into sensory processing disorder and read a great book called the Out of Sync Child (that several of you reccommended). It kind of all made sense to me and while I did not think Abby was an extreme case I came to realize that if you aren't processing things quite right it's going to affect your behavior. We were referred to a developmental pediatrician, Dr. Timoty Jordan. That appointment was one of the worst experiences of my life. He told me there was no such thing as sensory processing disorder and that it was all made up by occupational therapists to meet their own needs. I was very flustered and felt we weren't given the chance to explain our situation very well. He said Abby just got too much attention for her misbehavior and that we needed to pick one or two of her behaviors that bothered us most. When she did those things we were supposed to lock her in an empty room for a half hour. If that didn't work the we were to lock her in for an hour. And then we were to come back and see him in a month. We did not go back. He did do some testing and said that Abby did not have autism or any developmental delays which is great but that is not why we were there.
In the meantime we got a script from our pediatrician to have an occupational therapy evaluation in October of 2009. It was decided that Abby could benefit from therapy. While physical therapy was easy to get into occupational therapy took us 4 months. We attended occupational therapy from February to May 2010. Abby learned about her "body machine" and that sometimes we can run on "high speed" and sometimes we can run on "low speed" but in order to function and do the things we are supposed to our body needs to be running on "just right speed". She learned about all different movement activities and things she can do with her hands, mouth, eyes, and ears to help get to just right speed if she is too high or low. It was all great information and Abby really enjoyed going. Tracy agreed that Abby had some mild sensory issues and told us that these kids usually learn to regulate themselves around 8 years old. Also these kids are usually 1 or 2 years behind socially but eventually catch up once they get better at reading social cues. I find that the things we learned at therapy are really hard to implement at home - mainly because of all the other demands on my time and her time. Now that she is out for summer break I want to do better. If anything it gave us some terminology to use. Abby's favorite thing to do at therapy - the thing she found most soothing - was swinging.
Dr. John Barton ~ Psychologist through Phoenix Children's Hospital
After the awful Dr. Jordan experience and before we got into occupational therapy Dr. Shishov could tell I was really overwhelmed. At one of our rheumotology appointments he sat and watched Abby tear the paper on the bench, blow it around the room, and talk to herself in a baby voice. He said, "Is this behavior normal?" I said yes more or less. He decided I needed a "quarterback" to take charge of the whole situation. He sat up an appointment with a pediatrician through Phoenix Children's hospital named Dr. Shaw. Dr. Shishov felt Dr. Shaw could point us in the right direction. After meeting with her Dr. Shaw felt that Abby did have some sensory issues but was also dealing coping issues and with behavior issues. I creid. It's not fun hearing that your child has behavior porblems. Kind of makes you feel like a failure. She wanted us to see a psychologist through Phoenix Children's Hospital. I told her we'd already been through counseling but she felt we would benefit from some therapy with a counselor specifically for children coping with disease. We've had 3 meeting with Dr. Barton. He is very pleasant and interacts with Abby so well. He had us fill out a behavorial questionaire and Abby fell above or below the normal range for almost every category. She was too high in aggression, hyperactivity, etc...too low in social skills, emotions, etc. She scored in the normal range for communication and leadership (now if only we can point those skills in the right direction). He believes Abby may be depressed "with a lower case d". Just what every parent wants to hear. We're going to talk more about the results of the behavioral assessment at our next visit. In the meantime we are starting on behavior charts where she can earn smileys, treats, and privileges for following directions at mealtimes, bedtime, etc. I'm not a big fun of sticker charts and would rather be getting into the why she is doing what she is doing but according to a book Dr. Barton had me read called "The Kazdin Method for Parenting the Defiant Child" you worry about changing the behavior first before you worry about the why. We're supposed to deinfe what we want her to do in a positive way, practice the behavior at times when the behavior wouldn't occur, praise like crazy, and not expect perfection. We're plugging along.
So there you ago. How was that for an update? Do you think that is enough doctors for an almost 8 year old? At the same time I know some kids struggle with so much worse and we are thankful that everything has gone as well as it has. Some days Abby behaves so well and I think ~ what is our problem - she is fine. Then there are other days where things are not so fine. I just want her to be happy and know how much we love her. She's had quite the journey.
January 2009 ~ in the hospital ~ 6 years old
March 2009
October 2009
January 2010
May 2010
March 2009October 2009January 2010May 2010
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WOW!!!!!!!!!!!!!!!! That is amazing!! I hope all of these doctors have made a difference in Abby’s life. Obviously the medical issues are much improved now. That is a great thing! Hopefully, the other issues will smooth out eventually. Other than not liking to take a bath, does she like water play? I found that to be great with kids who were hyperactive in preschool. Water play can be very calming and therapeutic. Sending love your way!!
Happy storytelling!
Aldine Allen
I go back and forth so often on whether sending Abby to all these doctors is the right thing. I'm trying so hard to fix whatever is wrong with her - but maybe it's nothing. Maybe she's perfectly fine and there's something wrong with me and I need to be the one is counseling. I just get so overwhelmed.
But at the same time her medical doctors are refering her to these other doctors - its not just my idea.
Today she wore her Sunday shoes outside and then went into the one part of the backyard that was muddy. Totally kid stuff right? Of course it had to be when my mom was here - thats always lovely.
But its just stuff like this ALL the time. One thing after another. Well, probably not all the time. I'm supposed to be catching her being good. Sometimes its hard. She does try so hard to be good. Its almost like - she can't.
Today was a hard day.
I am so sorry that you had a bad day. Yes, it is totally kid stuff to get mud all over your shoes. There is nothing wrong with you. You are a wonderful mother to your children. It is hard to stay focused and positive all the time. There were times when I totally lost it and screamed at my kids. Hopefully, they don’t remember those times too often. Some children try your patience to the “nth” degree and there isn’t much you can do about changing them. I have one of them too. You just keep loving them and praying for their best welfare. Love ya!!!!
Happy storytelling!
Aldine Allen
Ben pulled the curtain down on top of him and patiently waited while I grabbed my camera Ü
picnic at Thatcher park
Tyler was gone to a business conference in Denver, CO from April 28th to May 4th. He was especially excited to go on this trip because Denver is where he is from. He grew up in Arvada, CO and still has 1 brother and 3 sisters who live in the Denver area - along with our 15 nieces and nephews. He got to see all of them while he was there. These are the few pictures he took. Our kids had fun drawing pictures for all their cousins. We love and miss you!!
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