The dog survived and is improving every day. He was so emaciated when we brought him home from the hospital. He was very near death and I'm amazed that he was able to fight the poison he'd ingested. Of course, now we're more broke than before, but we have our dog back. Elise seemed to acknowledge his return somewhat. I'd be more alarmed by her lack of response to his return if it wasn't for the fact that her neurotypical twin was even less interested in the dog's return home than Elise was! At least A was happier to see the dog and gave him a hug.
The saga of securing therapy for Elise continues...We contacted our lawyer about the offer we received for occupational therapy services. She contacted the school district's psychologist who drafted our mediation agreement. We discovered that Elise is supposed to have her services with a non-public agency (NPA). Hubby contacted the office that will set this up for us today. We will be able to use an NPA for Elise's occupational therapy. That will allow us to fill the hours we have been granted. We selected Elise's old therapy center from when she was in early intervention services. We would love it if we could have the same therapist. She was such a tremendous help to us with Elise, connected very well with Elise and was very supportive during the time we were learning to accept Elise's diagnosis, which must have been obvious to her from day 1. I'd be thrilled if she has some availability for Elise. The secondary bonus is that the facility is literally across the street from my work, so I could be more involved in Elise's therapy, instead of it all being handled by her wonderful nanny.
Speaking of which, we are so lucky to have her working with us. She embraces all of the therapy techniques that she sees for Elise. She genuinely celebrates Elise's little successes and pushes her gently to continue progressing. Today, she took Elise to the mall and made sure to stop in the bathroom there. Elise has become fearful of public bathrooms and the only way to improve this is to gently expose her to the situation. Not only did she get her into the bathroom, she had her dry her hands under the hand dryer. Elise is terrified of the hand dryers, but she trusts her nanny so much that she did it with only slight protest. Score one for the nanny. Her help in gently challenging Elise makes things so much better for our situation.
Elise has been stimming a lot lately. Today, she weirdly became scared in the pool and on a swing at the park. It's so frustrating to not know what is setting her off so often. She is becoming somewhat responsive when I tell her to close her mouth or that her verbal stimming is not appropriate. She's slowly developing some awareness that the behavior is not socially acceptable. We just have to keep working on it.
This Friday and Saturday Elise is having a potty party. She will have consultants working with her from 8-5 each day potty training her. I am so excited! I hope more than anyone could imagine that she will be mostly potty trained after this weekend. Please, please, please, please, please....I want to be done with diapers. She's rapidly approaching 4 - it's time.
Wednesday, August 18, 2010
Wednesday, August 11, 2010
What a Nightmare!
For once the nightmare doesn't involve anything with Elise - hooray for that. She has been having a pretty good week so far. Today, she went to a park with her nanny and had a picnic lunch. She spontaneously pointed at a dog and said "dog". Then, she pointed again and said "big dog." Then, she pointed at a tree and said "Tree". This is huge not just because she said words without prompting but because by pointing and engaging with her nanny, she also shared an interest using both verbal and nonverbal cues. Crazy that I know this and don't take any of it for granted. Having a child with autism gives me a whole different perspective on the world.
We're calling the lawyer tonight to see what we can do with the whole occupational therapy thing. From what we understand when we read our agreement, we are to have a non-public agency provide her therapy. When I call this therapist that Elise was supposed to see, her phone number calls into a school district office and she is titled "School Occupational Therapist" on her voicemail. She sure doesn't seem to be part of a non-public agency. I think they're playing another weird game with us - sigh...maybe someday she'll receive the therapy we agreed to receive. Hopefully before she turns 4!!!
The reason this week has been a nightmare is that our dog was poisoned on Monday morning. He was on a walk and picked up something to eat from the grass before we could stop him. About 10 minutes later, he became unable to move well. I took him to the vet and he has been in the hospital since. He's improving some, but is still unable to walk or sit and has not wanted to eat. He was and possibly still is very near death. We all love that dog so much and are devastated by this. The pain he's been in is horrible to see. I pray that he's not going through these horrible days only to lose his battle in the end. We miss him so much! On the other hand, it has been strange not to focus only on Elise these past two days. I just wish our focus wasn't on a worse situation than our usual obsession with Elise's healing.
We're calling the lawyer tonight to see what we can do with the whole occupational therapy thing. From what we understand when we read our agreement, we are to have a non-public agency provide her therapy. When I call this therapist that Elise was supposed to see, her phone number calls into a school district office and she is titled "School Occupational Therapist" on her voicemail. She sure doesn't seem to be part of a non-public agency. I think they're playing another weird game with us - sigh...maybe someday she'll receive the therapy we agreed to receive. Hopefully before she turns 4!!!
The reason this week has been a nightmare is that our dog was poisoned on Monday morning. He was on a walk and picked up something to eat from the grass before we could stop him. About 10 minutes later, he became unable to move well. I took him to the vet and he has been in the hospital since. He's improving some, but is still unable to walk or sit and has not wanted to eat. He was and possibly still is very near death. We all love that dog so much and are devastated by this. The pain he's been in is horrible to see. I pray that he's not going through these horrible days only to lose his battle in the end. We miss him so much! On the other hand, it has been strange not to focus only on Elise these past two days. I just wish our focus wasn't on a worse situation than our usual obsession with Elise's healing.
Monday, August 9, 2010
Emotional Times
We're back on the rollercoaster that is life with an autistic child, or maybe it's just life in general. Elise began stimming a lot last week. I found her to be much more withdrawn and distant and much less focused. We had increased her Abilify dosage, so I was hoping to see positive changes. Instead, we saw that the things Abilify is supposed to help were becoming worse. Sigh...I actually think the two are unrelated this time. I haven't figured out why we're seeing the worsening symptoms, but I still suspect yeast overgrowth sparked by the antibiotic she was on 2-3 weeks ago. Our parent trainer also noted in our weekly meeting that they were seeing a lot more stims. The example she used was that they were increasing from 20% of the time to 70-80% of the time. Given my suspicion of yeast overgrowth, I increased her probiotic to a full capsule instead of her usual 1/2 capsule. She's returning to her usual self now, thank goodness. She's no longer irritated looking in her bottom area, the dry spot on her back is disappearing (eczema?) and she's no longer engaging in inappropriate laughter. She's still stimming, but it's mellowing. She's engaging with us better than last week, but maybe not quite as well as she has been other weeks. I believe that she is coming back.
This lastest downturn has driven me to get back on track with going gluten free again. I'm also beginning JuicePlus so that we can improve Elise's immune system. My hope is that she'll get sick less and avoid needing antibiotics. Then, we won't have to go through this constant cycle of sick, antibiotic, worsening symptoms and less ability to learn. If we can keep her healthy more often, she'll be in a learning state much more often. I had a 15 minute conversation with the Queen of Health about JuicePlus last week. It was a complete sales job, but I think there is a lot of sincerity. I trust Elise's doctor and feel that she wouldn't lead me into a scam. Plus, there is research being done at great universities that supports JuicePlus claims. Elise tried it today and really liked it. I'm not sure of the cost. I'm hoping that we can manage to get samples to start and make sure it works well for Elise. B could also really use it since he doesn't eat all that well and he's always been somewhat sickly.
I've been working really hard to set up services for Elise AGAIN. I found a speech provider that I had a really good feel about. It's an hour from our home, but the owner is willing to accomodate our restricted time availability, so we're going for it. She'll attend 2 hours per week, once on Friday morning and again on Monday or Wednesday from 5-6pm. For the Friday morning, we're hoping for the 9-10 time slot. Then, we'll just drive her to her nanny's house and the nanny will take her to speech. It's only about 5 miles (20 minutes) from her nanny's house to the speech center. It would be stupid for our nanny to come all the way out to our place only to drive an hour back towards her house to get to the speech center. We're also going to continue with her current speech provider using our insurance. Her current therapist is much more medically, clinically based which Elise really needs right now. This new place claims that they're open to working with our other speech therapist, so we'll see how that goes.
Now, OT services are a completely different story. I've been back and forth with the school district trying to find out how to get started with OT. Mind you, per our mediation agreement, Elise was supposed to spend much of the summer receiving OT. Hmmm...that really happened. Anywho, I have alarm bells going off about what is being provided now. Our agreement states that we are to have a non-public agency provide her services. They had an OT call me to schedule a time. I didn't click with the therapist on the phone. She seemed impatient and rude. Just the kind of person who would be perfect working with a young, non-compliant autistic 3 year old (this statement is laden with sarcasm). Something just didn't seem right to me, so I cancelled our first session tomorrow until I spoke with our lawyer. Well, when I called to cancel, I discovered that the therapist's phone number is the school district's office. I'm confused because our agreement says we're to have a non-public agency (NPA). The lawyer said I should ask this therapist if she is an NPA. If not, then the agreement is not being followed. She can step in at that point if we need her. This just sucks. The lady from the school district that set this up reminds me of the original one we worked with who pushed us into the most restrictive environment for Elise and pretended that she was doing us a big favor. Like I said, alarm bells are going off all over the place for me. I have to trust my intuition on this. We're being screwed. They waste so much of Elise's precious healing time with this crap and they never win. I mean, this is my child's future, I'm not going to back down from what we legally agreed to have. Anyway, this is up in the air for the time being.
That's kind of all that is happening right now, as if that's not enough. Tonight I was logged onto a Biomed Mammas group for mom's of kids with autism who are using biomedical interventions. There is a new member who posted a bit about her story. She said that until 18 months, her daughter was not autistic. By 2, she was diagnosed. She is still mostly non-verbal at the age of 4. She posted pictures of her beautiful little girl, one when she was not yet autistic and a current picture. It was like looking through old pictures of Elise. She wrote "I love her so much but I miss the sparkle and light in her eyes and face. She is still a very happy little girl but it's like part of her is missing and I would gladly give whatever I can to get even half of it back." I ache for this mother because it's exactly how I feel about Elise. What is happening to these children. Above are my pictures of Elise before and after.
This lastest downturn has driven me to get back on track with going gluten free again. I'm also beginning JuicePlus so that we can improve Elise's immune system. My hope is that she'll get sick less and avoid needing antibiotics. Then, we won't have to go through this constant cycle of sick, antibiotic, worsening symptoms and less ability to learn. If we can keep her healthy more often, she'll be in a learning state much more often. I had a 15 minute conversation with the Queen of Health about JuicePlus last week. It was a complete sales job, but I think there is a lot of sincerity. I trust Elise's doctor and feel that she wouldn't lead me into a scam. Plus, there is research being done at great universities that supports JuicePlus claims. Elise tried it today and really liked it. I'm not sure of the cost. I'm hoping that we can manage to get samples to start and make sure it works well for Elise. B could also really use it since he doesn't eat all that well and he's always been somewhat sickly.
I've been working really hard to set up services for Elise AGAIN. I found a speech provider that I had a really good feel about. It's an hour from our home, but the owner is willing to accomodate our restricted time availability, so we're going for it. She'll attend 2 hours per week, once on Friday morning and again on Monday or Wednesday from 5-6pm. For the Friday morning, we're hoping for the 9-10 time slot. Then, we'll just drive her to her nanny's house and the nanny will take her to speech. It's only about 5 miles (20 minutes) from her nanny's house to the speech center. It would be stupid for our nanny to come all the way out to our place only to drive an hour back towards her house to get to the speech center. We're also going to continue with her current speech provider using our insurance. Her current therapist is much more medically, clinically based which Elise really needs right now. This new place claims that they're open to working with our other speech therapist, so we'll see how that goes.
Now, OT services are a completely different story. I've been back and forth with the school district trying to find out how to get started with OT. Mind you, per our mediation agreement, Elise was supposed to spend much of the summer receiving OT. Hmmm...that really happened. Anywho, I have alarm bells going off about what is being provided now. Our agreement states that we are to have a non-public agency provide her services. They had an OT call me to schedule a time. I didn't click with the therapist on the phone. She seemed impatient and rude. Just the kind of person who would be perfect working with a young, non-compliant autistic 3 year old (this statement is laden with sarcasm). Something just didn't seem right to me, so I cancelled our first session tomorrow until I spoke with our lawyer. Well, when I called to cancel, I discovered that the therapist's phone number is the school district's office. I'm confused because our agreement says we're to have a non-public agency (NPA). The lawyer said I should ask this therapist if she is an NPA. If not, then the agreement is not being followed. She can step in at that point if we need her. This just sucks. The lady from the school district that set this up reminds me of the original one we worked with who pushed us into the most restrictive environment for Elise and pretended that she was doing us a big favor. Like I said, alarm bells are going off all over the place for me. I have to trust my intuition on this. We're being screwed. They waste so much of Elise's precious healing time with this crap and they never win. I mean, this is my child's future, I'm not going to back down from what we legally agreed to have. Anyway, this is up in the air for the time being.
That's kind of all that is happening right now, as if that's not enough. Tonight I was logged onto a Biomed Mammas group for mom's of kids with autism who are using biomedical interventions. There is a new member who posted a bit about her story. She said that until 18 months, her daughter was not autistic. By 2, she was diagnosed. She is still mostly non-verbal at the age of 4. She posted pictures of her beautiful little girl, one when she was not yet autistic and a current picture. It was like looking through old pictures of Elise. She wrote "I love her so much but I miss the sparkle and light in her eyes and face. She is still a very happy little girl but it's like part of her is missing and I would gladly give whatever I can to get even half of it back." I ache for this mother because it's exactly how I feel about Elise. What is happening to these children. Above are my pictures of Elise before and after.
Sunday, August 1, 2010
Good Day
We had a good week with Elise overall. She has settled nicely with her nanny's return and seems to be working really hard in her DTT (discrete trial training) sessions. On Weds, I took her to see her psychiatrist. Elise was actually quite "off" during the visit. She was fussy and fairly non-compliant. However, although she tantrumed, they were more whiny than full tantrums and she was easily comforted by me out of them. I noted that she wasn't feeling all that well, so her doctor suggested that we start using JuicePlus to boost her immune system. She also provided the name of someone doing a research study on boosting the immune system of kid's like Elise. I will be contacting this person to see if it is open for us to join. We decided to up her Abilify to .35 ml. We have seen really significant progress with the .25 ml which is a very miniscule dose. The dose she was using initially when she was falling asleep all the time was .5 ml. We're hoping that the .35 ml will really benefit her and not lead to increased side effects. We began the new dose tonight, so we'll see how it goes. Initially, the Abilify seemed to help her sleep through the night, to focus better and to improve her eye contact. We've seen a decline in these positive effects. They're still way better than they were, but not as great as after we first started using Abilify. Perhaps her body does need a bit more. We'll see. So far, I'm very pro-Abilify. It is making a huge difference for Elise and my hopes are really high for her.
On Thursday, I met with our parent trainer. She also had really positive things to say about Elise this time. She noted that Elise is verbalizing much more for them. She is recognizing and saying colors, her tantrums have declined and she is progressing well through most of her drills. They have decided to modify a couple of drills. One of these is to modify the non-verbal imitation drill where Elise is supposed to imitate two consecutive actions. Elise is not mastering this and becomes quite frustrated with it. I asked whether this was a motor planning issue. The trainer said that no, it was more of an executive planning problem. In my words, Elise's brain is just wired wrong - it's so sad. However, she's a really clever and determined girl, so I'm hopeful that we can re-wire some things since she's still so young. If not, I'm hopeful that Elise will teach herself work arounds for her "shortcomings". When I think of it this way, it bothers me less. I mean, we all have areas where we have to teach ourselves work-arounds because it's not where our talents lie. Elise's seem to be much more numerous than most, but I'm confident that she will be able to teach herself a lot, especially with all the support she is receiving while she is so young. The second modification is in teaching Elise how to play some of the preschool games, like tag. They've noticed that Elise just gets very stimulated when she runs and loses the object/purpose of running. Therefore, tag is pointless for her. She begins to chase someone and then gets excited and just aimlessly runs. They are going to have our nanny stand still and teach Elise how to "tag" her, rewarding her each time. Then, she will move some and Elise will "tag" her, and so on and so on.
Today Elise had a session with a fill-in consultant that she's never met. The woman was really excellent. We had her work with Elise for an hour in her room. Then, we went to a nearby indoor playground with her brothers. The consultant was awesome about gathering kids to play with Elise. We played duck-duck-goose, tag, ring around the rosies, follow-the-leader and other things. It was hard for Elise to wait her turn and follow along, but she was so HAPPY. It was such a joy to us to see how happy she was to be able to play with the other children. I've never seen her try so hard and enjoy herself so much in this situation. It's a beginning and hopefully a start to being able to develop some relationships with peers. During duck-duck-goose, she would get really smily and excited anticipating the "goose". I loved seeing her like this!
We finally received our letter from the school district about starting speech services. We have yet to receive anything about the OT services. I spoke with her current speech therapist and contacted the vendor she noted (she didn't "recommend" as I think she can't do that, but she did note one in particular). I am meeting with that provider at 9am on Tuesday. It's really far from where we live, like a 45 minute drive. I find it suspicious that there is no one closer. I also find it suspicious that we received the letter on 7/29 and the vendors close during the month of August. I think the school is working to ensure that we don't have the opportunity to use all of the hours we agreed to in mediation. I do sympathize with the situation that these school districts are facing. Federal mandates require much in regards to special needs children yet provide a very low actual percentage of the funding for these requirements. The state is broke and the county is also in bad shape. The number of autistic children is growing rapidly. The system is very stretched. While I understand this, I refuse to let Elise fall through the cracks. I battle the selfishness of how hard I'm working to ensure that Elise gets everything knowing that many other children like her are not receiving the same. However, if Elise gets less, it's not like those children will get more. There would just be that much less given. At least this is how I rationalize. This autism crisis is just bad. I have no answers. I just hope that there are others who are coming closer to having answers.
On Thursday, I met with our parent trainer. She also had really positive things to say about Elise this time. She noted that Elise is verbalizing much more for them. She is recognizing and saying colors, her tantrums have declined and she is progressing well through most of her drills. They have decided to modify a couple of drills. One of these is to modify the non-verbal imitation drill where Elise is supposed to imitate two consecutive actions. Elise is not mastering this and becomes quite frustrated with it. I asked whether this was a motor planning issue. The trainer said that no, it was more of an executive planning problem. In my words, Elise's brain is just wired wrong - it's so sad. However, she's a really clever and determined girl, so I'm hopeful that we can re-wire some things since she's still so young. If not, I'm hopeful that Elise will teach herself work arounds for her "shortcomings". When I think of it this way, it bothers me less. I mean, we all have areas where we have to teach ourselves work-arounds because it's not where our talents lie. Elise's seem to be much more numerous than most, but I'm confident that she will be able to teach herself a lot, especially with all the support she is receiving while she is so young. The second modification is in teaching Elise how to play some of the preschool games, like tag. They've noticed that Elise just gets very stimulated when she runs and loses the object/purpose of running. Therefore, tag is pointless for her. She begins to chase someone and then gets excited and just aimlessly runs. They are going to have our nanny stand still and teach Elise how to "tag" her, rewarding her each time. Then, she will move some and Elise will "tag" her, and so on and so on.
Today Elise had a session with a fill-in consultant that she's never met. The woman was really excellent. We had her work with Elise for an hour in her room. Then, we went to a nearby indoor playground with her brothers. The consultant was awesome about gathering kids to play with Elise. We played duck-duck-goose, tag, ring around the rosies, follow-the-leader and other things. It was hard for Elise to wait her turn and follow along, but she was so HAPPY. It was such a joy to us to see how happy she was to be able to play with the other children. I've never seen her try so hard and enjoy herself so much in this situation. It's a beginning and hopefully a start to being able to develop some relationships with peers. During duck-duck-goose, she would get really smily and excited anticipating the "goose". I loved seeing her like this!
We finally received our letter from the school district about starting speech services. We have yet to receive anything about the OT services. I spoke with her current speech therapist and contacted the vendor she noted (she didn't "recommend" as I think she can't do that, but she did note one in particular). I am meeting with that provider at 9am on Tuesday. It's really far from where we live, like a 45 minute drive. I find it suspicious that there is no one closer. I also find it suspicious that we received the letter on 7/29 and the vendors close during the month of August. I think the school is working to ensure that we don't have the opportunity to use all of the hours we agreed to in mediation. I do sympathize with the situation that these school districts are facing. Federal mandates require much in regards to special needs children yet provide a very low actual percentage of the funding for these requirements. The state is broke and the county is also in bad shape. The number of autistic children is growing rapidly. The system is very stretched. While I understand this, I refuse to let Elise fall through the cracks. I battle the selfishness of how hard I'm working to ensure that Elise gets everything knowing that many other children like her are not receiving the same. However, if Elise gets less, it's not like those children will get more. There would just be that much less given. At least this is how I rationalize. This autism crisis is just bad. I have no answers. I just hope that there are others who are coming closer to having answers.
Sunday, July 25, 2010
It's been a long time.
It's been a long time since I last posted. We spent a few weeks where I didn't have computer access in the evenings. Then, it had just been so long that writing a catch-up seemed an insurmountable task. I guess I'll just keep this to bullet points.
- Elise has overall continued steady improvement. Again, no major gains, but still moving upward. I'll take it.
- Elise had a follow-up research study assessment in June. She did great. I was really excited for the report and hoped to see vast improvement in her scoring. Well, I was bitterly disappointed to see that she still scores REALLY low. It's just frustrating to see that her language skills still score like a 15 month old. Really??? I know for an absolute fact that she understands much more than a typical 15 month old child. I hope that some day these awful assessments will reflect the truth. It seems that the assessments are really made for a typical child and one who processes information differently has a difficult time scoring well. That's my theory and I'm sticking to it.
- Elise has begun doing jigsaw puzzles and she is amazing at it. I mean, she pretty much does only the 25 piece ones. She has done a few 60 piece ones, but she needs help initially for those. We have this Dora puzzle that has a 3D image on it. Since the image changes depending on how you look at it, it takes me around 8 minutes to complete it, 5 minutes if I'm lucky. A couple of days ago, Elise started playing with it and I sat down with her to watch. No kidding, she had it completed in no more than 3 minutes. She has quite impressive visual perception skills in my opinion.
- Elise has been improving in the area of speech, but this is very slow. She now listens for the Give x AND y command and responds appropriately. She used to get very confused by a request for more than 1 item. She finished the flute easily and moved on to the harmonica. She finished the harmonica quickly and is now using a slide whistle. The force with which she attempts to speak is improving since she started using the instruments. It's wonderful to see her in speech therapy and see how hard she is trying. When she can't get a word out understandably (this would be most of the time), her therapist will instruct her to watch her. Elise will stop and study her therapist's mouth saying the word so intently. Often, she will then reproduce the word much better than before watching her therapist. Elise has a strong desire to speak and this is how I know without a doubt that she WILL speak one day.
- The school district has not complied with providing us information for beginning speech and occupational therapy. It's really frustrating, but seems to be par for the course. We have very low expectations of them at this point. However, we document all contact and all of these delays. At this point, it seems to me that they are not in compliance with the mediation agreement, but I unfortunately didn't see anything in writing in the agreement about how long it would take to get the letter with the agencies we could use for speech and occupational therapy. It's not explicit, but given the expirations of use and writing that this is to provide support during the summer months, it seems that the implication can easily be interpreted to be that we would not have waited until mid-summer before even receiving the D*#n letter.
- Elise has regressed slightly in one area. She has become much more fearful when we are out in public. She went through a long period recently of basically hiding in corners and jumping when we're out in public. She seems to be pulling through this a bit, but she still does not eagerly play like she used to do. Poor girl. It seems like her life would be so lonely. I don't believe that she wants to be so alone. I think that she would love to be included with the other children. She just has no tools to do so at this time.
- Elise did well with her grandparents. She threw some doozy of tantrums for her abuelos a handful of times and that was difficult. For the most part, she became attached to them and was happy. She was more thrown by my mom visiting because I think she was confused about why her abuelos and her babysitter had all left and because my mother was only in for 5 days with her. She didn't throw major tantrums for my mom, but she was kind of lost about what to do. She was also more lost than typical when her abuelos were visiting. She started looking through her cards from her ABA therapy all the time. Needless to say, she was beyond thrilled by her nanny's return. She does care for her grandparents, but she was super excited to have her routine back.
That's about it for now. Things have been relatively slow for the first time since last August. They are picking up again this week. She has a doctor appointment on Wednesday with her psychiatrist. Then, I have to firm up her schedule for the fall so that her ABA hours can be scheduled. This will be a challenging, time-consuming task since I don't even know her school hours and days yet or even who will be providing her speech and OT. Busy times are coming.
Before I forget to mention, the Abilify seems to be a wonder drug for Elise. She is much more even tempered and much more focused for learning. Her eye contact has improved dramatically. This may also be due to the fact that her ABA has been working on eye contact with her. I'll never know for sure why it's improving, but I'm staying the course with Abilify and with the therapy.
Until the next post which I promise will be sometime this week.
Friday, June 18, 2010
Some Resolution
I no longer have much access to my computer, since it's in my bedroom which is now my in-laws bedroom, so that's why I haven't posted in a long time. We have continued with Elise on Abilify. We changed to a liquid form of medication so that we could reduce the dose further. We also switched to giving it to her at night. This has helped the sleepiness some, although it's still a side effect for her. The constipation side effect seems to be improving also. On the big plus side, we have seen much better behavior from her in the last week. Her tantrums have decreased and she is attending to her therapy sessions better. Augh! Time to change a disgusting diaper. I'll see if I get an opportunity to complete this another time.
Saturday, June 5, 2010
Continuing the Fight
Just when things seemed like they were at their worst last Saturday, things became worse. Elise spent all day Sunday & Monday behaving like a wild animal. She would stand in front of me screaming and lifting her arms up to me asking to be picked up. When I would pick her up, she'd stiffen her body, and arch her back to escape my touch. I'd have to put her down and she'd then begin pulling her hair and screaming "Maaamaaaa!" in this tortured sounding voice. She would get so out of control that I'd have to shut her in her room since she could accept no comfort from me and was physically attacking me. When I'd hear the awful screaming slow, I'd re-enter her room and find her naked with scratch marks all over her body from clawing herself. It was beyond horrible and I hope that never experience meltdowns like that ever again from her.
On Sunday, we took the kids to the beach. The beach is not a good place for a child who is going sensory crazy - lesson learned the hard way. She was unreachable at the beach. She ran back and forth, spinning and jumping constantly. She seemed completely unaware of the people around her. When it was time to leave, she threw a major tantrum. I had to squeeze her between my legs in order to put on my beach coverup and pack a bag to carry back to the car. She broke free once and ran straight back to the water. I had to chase her down and start the process over. I grabbed the cooler bag and Elise's shoes and carried her as she struggled and screamed all the way back to the parking lot and the car. No one offered any help, but before I had a child like Elise, I wouldn't have either. Now, I'd recognize a meltdown and take the person's bag for them. Life experience changes you. I honestly don't blame anyone for not helping, it just made me realize this change in understanding I now have. By the time I got to the car, I was physically exhausted. I had to sit on the door opening for probably 5 minutes just to gather myself. Elise settled as soon as she got in the car, instantaneously. The meltdown was complete and utter sensory overload.
On Monday, we had planned to go to the zoo. We decided that Elise couldn't handle that, an excellent decision since even at home she spent the day in several major meltdowns like what I described above. Hubby took the boys while I stayed home with Elise. Again, it was just an awful day. We did manage to get out long enough to buy her some new shoes since her old shoes barely would go on her feet. During one of the day's last meltdowns at bedtime, I was just wondering how I would ever manage to make it through another 40 hours until her psychiatrist's appointment, my hope for help.
On Wednesday afternoon, we met with the doctor. Fortunately her behavior had improved dramatically on Tuesday and Wednesday. Elise's doctor is one of the kindest people I know. She's seemingly an unlikely candidate on the surface for this designation, but thankfully it's true. When we described what we had been experiencing, we expected a medical assessment. We got that, but first we received a heartfelt, "That must have been horrible for all of you." Such a simple statement, but it means so much. She thinks that it could have been the B12 that was causing the extreme behavior as some children cannot handle the B vitamins. However, she admitted that, while definitely possible, this would be an EXTREME reaction to B12, especially considering the small dose Elise was taking. However, she did think this was possible and that we should definitely not include B12 supplements for Elise again. She also said that some children react to the removal of gluten initially, but again, she felt that Elise's reaction would also have been extreme for this too. She agreed that we should wait longer to remove gluten and do so very slowly. She also told us, unprompted by anything we had said, that "This is not a regression, Elise will come back." I can't even begin to explain how much that statement met to me and how much that statement is helping me continue to push forward. She provided Abilify for Elise. We are to try it for 7 days, 1/4 tablet in the morning. The tablets are tiny, so cutting up the tablet into quarters is a challenge, but can be done.
Our inclination was to wait until Elise stabilized for a period of time before trying the Abilify. After talking about it, we decided that we should try it this weekend because, if she had a bad reaction to it, our babysitter would be better equipped to identify it and handle her than her abuelos will be. We didn't want to experiment when we didn't have either hubby, myself or the sitter to handle Elise and observe her. She took her first pill Friday morning. We didn't notice much affect at all, although she had a good day. When I arrived home, the sitter told me that Elise was tired. In fact, Elise was so tired that she fell asleep in my arms by 7:15. She didn't awaken until after 8 this morning. A lot of sleep, but no alarm bells yet. I again gave her a dose this morning. She had therapy sessions from 11-2 & from 2-4. We planned to take her to an indoor playground for the latter half of the first session. She played there but was very lathargic and spacey. Earlier when her therapist brought her out for lunch, she mentioned that Elise seemed unusually tired. I thought it might be allergies since I'd heard her sniffle and we're all experiencing allergy issues right now. I gave her some Claritin and we left for the playground. When we returned home, I was shocked to see that Elise had dozed off in her carseat (it's a 3 minute drive). I brought her inside and she began her second session. This therapist noticed that Elise was very tired and spacey also, unusually so. Around 3, she came to find me and asked if I would sit and watch Elise work because she was concerned about her. Elise sat at her work table. When asked to perform a task, she acted very out of touch, leaned her head backward and nodded off to sleep. I put her to bed and she was out in less than a minute. Needless to say, her session ended there. I paged the doctor. While waiting for her return call, I began reading about side effects and found that sleepiness can be one. The doctor asked that we give her the medicine tomorrow night instead of the morning and call her on Monday to let her know how Elise was doing. I'm ready to give up this trial, but I want to give it a fair chance. I don't think this is going to work for her. I don't want a zombie, but I don't want a child raging uncontrollably either. I imagine that we'll end up pulling this medication. Hubby and I would like to remove almost everything and see what the real Elise is now like. We can then slowly start again. I hate "experimenting" on her little body, but as autism is so greatly varied, there is no other way to determine what will help your child. Obviously, Elise has an incredibly sensitive system. My poor angel baby.
Oh, I forgot to mention the moment of extreme panic I felt when I realized I had given her Claritin and didn't even think to verify that there is no drug interaction with the Abilify. I ran to the computer and fortunately, there is not. However, it was a terrifying moment to think that she could be harmed by my carelessness.
Another side effect of Abilify is constipation. Elise hasn't had a bowel movement since Wednesday. That's the worst she's ever been. You know, I'm starting to talk myself in to ending the Abilify experiment.
We also visited the chiropractor again today. Her adjustment is holding. She is no longer cooperative with the chiropractor, so I don't know how useful it'll be to continue the appointments. We cut a large chunk of hair (over 2 inches) from the underneath part of her hair to send into a lab that analyzes the hair. It's not a particularly accurate test, but it does help to point one in the direction of possible problems. I think it's possible that Elise has been exposed to too much mercury. I had a mouthful, literally, of silver amalgams when I was pregnant with the twins. Concurrently, I moved into our house when I was 17 weeks and began enjoying the lime/lemon tree in our backyard. Apparently lemon & limes can seep the mercury from the amalgams through my body. On top of this, I had frequent teeth cleanings while I was pregnant to help the risk of pre-term labor, as infection is the leading cause of that and many infections come from bacteria in the mouth. Cleanings also leach the mercury from the amalgams. In addition, I have had 4 or 5 MMR shots. My titter for this must be very high and this can also possibly be linked to increased chance of autism. In addition, at the time frame I had my last 2 or 3 (can't remember how many) MMR shots, thimersol would have been a component. Elise also received a flu vaccine when she was a bit over one and that still contains a small amount of mercury. With all of this little things, I want to verify that Elise's mercury levels are not elevated. It's just for information at this time. I'm skeptical of this as it's not scientifically proven and chelating can be very hard on a body. I don't know if that's a line I would ever cross with Elise. There would have to be a very strong case made for doing so and I'd only look into the mildest forms of it. That would be long ahead in the future. In the meantime, I need to get Elise a haircut to even her hair. I wanted to cut it shoulder length for the hot summer anyway.
I just want to thank all my friends and family who read this and have offered their support and kind words. It is so important to me and it means a lot.
On Sunday, we took the kids to the beach. The beach is not a good place for a child who is going sensory crazy - lesson learned the hard way. She was unreachable at the beach. She ran back and forth, spinning and jumping constantly. She seemed completely unaware of the people around her. When it was time to leave, she threw a major tantrum. I had to squeeze her between my legs in order to put on my beach coverup and pack a bag to carry back to the car. She broke free once and ran straight back to the water. I had to chase her down and start the process over. I grabbed the cooler bag and Elise's shoes and carried her as she struggled and screamed all the way back to the parking lot and the car. No one offered any help, but before I had a child like Elise, I wouldn't have either. Now, I'd recognize a meltdown and take the person's bag for them. Life experience changes you. I honestly don't blame anyone for not helping, it just made me realize this change in understanding I now have. By the time I got to the car, I was physically exhausted. I had to sit on the door opening for probably 5 minutes just to gather myself. Elise settled as soon as she got in the car, instantaneously. The meltdown was complete and utter sensory overload.
On Monday, we had planned to go to the zoo. We decided that Elise couldn't handle that, an excellent decision since even at home she spent the day in several major meltdowns like what I described above. Hubby took the boys while I stayed home with Elise. Again, it was just an awful day. We did manage to get out long enough to buy her some new shoes since her old shoes barely would go on her feet. During one of the day's last meltdowns at bedtime, I was just wondering how I would ever manage to make it through another 40 hours until her psychiatrist's appointment, my hope for help.
On Wednesday afternoon, we met with the doctor. Fortunately her behavior had improved dramatically on Tuesday and Wednesday. Elise's doctor is one of the kindest people I know. She's seemingly an unlikely candidate on the surface for this designation, but thankfully it's true. When we described what we had been experiencing, we expected a medical assessment. We got that, but first we received a heartfelt, "That must have been horrible for all of you." Such a simple statement, but it means so much. She thinks that it could have been the B12 that was causing the extreme behavior as some children cannot handle the B vitamins. However, she admitted that, while definitely possible, this would be an EXTREME reaction to B12, especially considering the small dose Elise was taking. However, she did think this was possible and that we should definitely not include B12 supplements for Elise again. She also said that some children react to the removal of gluten initially, but again, she felt that Elise's reaction would also have been extreme for this too. She agreed that we should wait longer to remove gluten and do so very slowly. She also told us, unprompted by anything we had said, that "This is not a regression, Elise will come back." I can't even begin to explain how much that statement met to me and how much that statement is helping me continue to push forward. She provided Abilify for Elise. We are to try it for 7 days, 1/4 tablet in the morning. The tablets are tiny, so cutting up the tablet into quarters is a challenge, but can be done.
Our inclination was to wait until Elise stabilized for a period of time before trying the Abilify. After talking about it, we decided that we should try it this weekend because, if she had a bad reaction to it, our babysitter would be better equipped to identify it and handle her than her abuelos will be. We didn't want to experiment when we didn't have either hubby, myself or the sitter to handle Elise and observe her. She took her first pill Friday morning. We didn't notice much affect at all, although she had a good day. When I arrived home, the sitter told me that Elise was tired. In fact, Elise was so tired that she fell asleep in my arms by 7:15. She didn't awaken until after 8 this morning. A lot of sleep, but no alarm bells yet. I again gave her a dose this morning. She had therapy sessions from 11-2 & from 2-4. We planned to take her to an indoor playground for the latter half of the first session. She played there but was very lathargic and spacey. Earlier when her therapist brought her out for lunch, she mentioned that Elise seemed unusually tired. I thought it might be allergies since I'd heard her sniffle and we're all experiencing allergy issues right now. I gave her some Claritin and we left for the playground. When we returned home, I was shocked to see that Elise had dozed off in her carseat (it's a 3 minute drive). I brought her inside and she began her second session. This therapist noticed that Elise was very tired and spacey also, unusually so. Around 3, she came to find me and asked if I would sit and watch Elise work because she was concerned about her. Elise sat at her work table. When asked to perform a task, she acted very out of touch, leaned her head backward and nodded off to sleep. I put her to bed and she was out in less than a minute. Needless to say, her session ended there. I paged the doctor. While waiting for her return call, I began reading about side effects and found that sleepiness can be one. The doctor asked that we give her the medicine tomorrow night instead of the morning and call her on Monday to let her know how Elise was doing. I'm ready to give up this trial, but I want to give it a fair chance. I don't think this is going to work for her. I don't want a zombie, but I don't want a child raging uncontrollably either. I imagine that we'll end up pulling this medication. Hubby and I would like to remove almost everything and see what the real Elise is now like. We can then slowly start again. I hate "experimenting" on her little body, but as autism is so greatly varied, there is no other way to determine what will help your child. Obviously, Elise has an incredibly sensitive system. My poor angel baby.
Oh, I forgot to mention the moment of extreme panic I felt when I realized I had given her Claritin and didn't even think to verify that there is no drug interaction with the Abilify. I ran to the computer and fortunately, there is not. However, it was a terrifying moment to think that she could be harmed by my carelessness.
Another side effect of Abilify is constipation. Elise hasn't had a bowel movement since Wednesday. That's the worst she's ever been. You know, I'm starting to talk myself in to ending the Abilify experiment.
We also visited the chiropractor again today. Her adjustment is holding. She is no longer cooperative with the chiropractor, so I don't know how useful it'll be to continue the appointments. We cut a large chunk of hair (over 2 inches) from the underneath part of her hair to send into a lab that analyzes the hair. It's not a particularly accurate test, but it does help to point one in the direction of possible problems. I think it's possible that Elise has been exposed to too much mercury. I had a mouthful, literally, of silver amalgams when I was pregnant with the twins. Concurrently, I moved into our house when I was 17 weeks and began enjoying the lime/lemon tree in our backyard. Apparently lemon & limes can seep the mercury from the amalgams through my body. On top of this, I had frequent teeth cleanings while I was pregnant to help the risk of pre-term labor, as infection is the leading cause of that and many infections come from bacteria in the mouth. Cleanings also leach the mercury from the amalgams. In addition, I have had 4 or 5 MMR shots. My titter for this must be very high and this can also possibly be linked to increased chance of autism. In addition, at the time frame I had my last 2 or 3 (can't remember how many) MMR shots, thimersol would have been a component. Elise also received a flu vaccine when she was a bit over one and that still contains a small amount of mercury. With all of this little things, I want to verify that Elise's mercury levels are not elevated. It's just for information at this time. I'm skeptical of this as it's not scientifically proven and chelating can be very hard on a body. I don't know if that's a line I would ever cross with Elise. There would have to be a very strong case made for doing so and I'd only look into the mildest forms of it. That would be long ahead in the future. In the meantime, I need to get Elise a haircut to even her hair. I wanted to cut it shoulder length for the hot summer anyway.
I just want to thank all my friends and family who read this and have offered their support and kind words. It is so important to me and it means a lot.
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