Tuesday, November 18, 2014

Blake - Update

Going back to the beginning of September, we had a few issues with Blake. First, we started noticing that he seemed to not be hearing very good. He was asking "what" a lot. A few days after school started, his teacher emailed me and stated she had concerns about his hearing. So we went to the pediatrician. Turns out he had fluid in his ears. I also mentioned to the doctor that he breathes quite loud and raspy at night. The doctor thought this could be related to the ears. Scheduled a hearing test just to be sure. Hearing test came back normal. The doctor prescribed Flonase and Zyrtec to clear up the fluid in his ears and any congestion. He needed to be on these for 4 to 6 weeks. No serious issue. We were grateful.

After the first week of school, we were contacted by Blake's teachers telling us Blake has been refusing to do his work and has just had a bad attitude. I also had noticed that he seemed a bit more mouthy lately. He always seems to have a difficult time adjusting to school in the Fall, so we all thought that was the issue. I had a good talk with him explaining that he had to do his schoolwork and be respectful to his teachers. We were hoping things would improve in a week or two. I was still a bit concerned because his behavior had improved so much during the Summer. He was respecting authority and tutoring went exceptionally well.

Over the next two weeks, things were not improving. At the very end of the third week of school, I received a phone call from his teacher and an email from his skills support teacher. Blake had a major meltdown - kicking, screaming, hitting desks, flailing temper tantrum, all over something minor. During his flailing, he hit his teacher. After two teachers were able to calm him down, he was sent to his skills support teacher and had another tantrum while talking to her about the first one. He received a "write up" at school which meant he had to apologize to his teachers, fill out a questionnaire on making good choices, and miss two recesses. A school "write up" was a new experience for me.

I was shocked at his behavior. Blake had not had one of these tantrums in almost two years. He had several of them during his first few months home. After Bruce returned home from work, we had an initially very calm talk with him. We asked him if anything was bothering him at school. No issues that we could decipher. We explained his school consequences to him, and he accepted them fairly well. We had talked a head of time and decided that he would lose all privileges for the weekend at home. We felt he needed to know that this behavior is not acceptable. When we told him about his consequence at home, the gloves came off. Another major 30 minute long tantrum ensued. He finally calmed down and the rest of the weekend went fairly well.

Bruce and I were still concerned about this drastic behavior change, as were his teachers. We just didn't think it could be related to starting school. We began reviewing any other changes that went on with him during that first week of school, since this is when the change in behavior started. Then Bruce asked if I thought it could be his medication. I double checked and we started him on the Flonase and Zyrtec shortly after the school year began. I went on the Internet to look at potential side affects of Zyrtec. Now Nicole had taken Zyrtec at some point when she was younger and Emery had also taken it hto clear up fluid in her ears awhile back. Never had any issues. I immediately found several people who said that their child had severe reactions to Zyrtec, including dramatic demeanor changes and violent outbursts. We immediately discontinued the Zyrtec. We had absolutely no issues with Blake the following week at school. His attitude was very good and he was doing his work as requested. At home, his behavior and respectfulness were every bit as good as they were during the Summer. Whew! I was very glad to have that resolved. We have not had any behavior issues with Blake since. I guess you never know how any medication is going to affect your child. I know we will not be giving him any Zyrtec anymore. Grateful we are back to normal in this house!


Sunday, November 16, 2014

Neurology - Emery

Post #3 for the weekend and I will finally be caught up with everything regarding Emery. I think I previously posted about Emery's visit last June-ish with the first neurologist. We were not at all happy with this doctor because he did not ask any specific questions about Emery. He believed she didn't talk due to anxiety and wanted us to put her on prozac. We decided at that time to get a second opinion and ended up seeing a neurologist in the Detroit area that specialized in children from orphanages. We had a 10 minute conversation with this doctor and he though Emery's issues were all attachment related. He did agree that we could try prozac and see what happens. He was very adamant that it was a safe drug to try. He also referred us to The Imagine Center where Emery finally received an official diagnosis. So despite our extreme disappointment in our 10 minute consultation, we are very grateful for the referral. We did decide to try Emery on prozac beginning with 1/20th of a normal dose and small weekly increases. We continued consulting with this neurologist via phone regarding the medication. We did not notice any significant changes in Emery while she was taking prozac. She may have been a bit more giddy and less likely to get upset about things, but the difference was minimal. It was becoming difficult having a doctor out of Detroit (2.5 hours from us) managing Emery's medication. We obtained another referral for a neurologist in Grand Rapids. This doctor runs a facility similar to The Imagine Center. This facility is CACN - Children and Adolescent Center for Neurology.

Our consultation at CACN was extremely thorough. The neurologist spent nearly 2 hours asking me questions and observing Emery. He stated that the more therapy we could get for Emery, the better. He understood that due to lack of insurance coverage, ABA therapy was not attainable. He also wanted us to ween Emery off the prozac and see if we notice any negative changes. He felt this was the only way to determine with any certainty whether or not the prozac was helping. He also ordered a 24 hour EKG to completely rule out any seizure activity. We were 100% satisfied with this consultation.

We weened Emery off of the Prozac over a 4 week period and did not notice any significant or negative changes. I spent 24 hours with Emery at CACN for her EKG. It went much better than I expected. I was very concerned about how I was going to keep Emery entertained for such a long time period. But Emery surprised me and did exceptionally well. Bruce brought the kids for a visit and we had take out dinner together to break up the time a bit. Emery slept well and we were back home by 9:00 the next morning. We received the EKG results 2 days later and the results showed no seizure activity.

For now, we are monitoring Emery's progress while attending the autism program at school and keeping her off any other medication. We will have another consultation with her neurologist in January to discuss progress made in her areas of need. It is possible we might have to try another medication for Emery at some time in the future. The doctor wants to wait and see how much she improves being in school full time.

So that is my Emery update. I have some pictures to post but for some reason blogsy will not let me upload them. I now have to wipe up several large puddles in my kitchen that arrived via 4 pairs of snowy kids boots. Apparently, Blake, Emery, Avery, and a friend desperately needed a snack while still in their snow gear! Ah, the joys of living in Michigan. Gotta Love It.

More Emery Updates

As I mentioned in my last post, Emery started school full time on October 14th. She absolutely loves going to school. Her autism class room consists of one autism teacher and two aides. Emery is one of six kids in the class. The maximum number of kids allowed is 7. So the teacher to student ratio is near 2 to 1 at all times. This is a perfect set up for Emery. The classroom is very sensory friendly. Emery receives occupational, speech and sensory therapy during the week. Her therapists provide necessary instructions to the teacher and aides so she is working on her therapy needs throughout her day.

We just had teacher conferences and the teacher and therapists were very excited at how well Emery has adjusted to her new routine. The first week she struggled a bit with following such a set schedule. By the second week, she was right up to speed with her classmates. They were having some trouble with her pushing other kids to engage them in play. I talked to Emery about not pushing kids. Each morning I remind her "no push" and push my hands forward. She began repeating and copying me the first day I did this with her. We also showed her a picture of someone pushing another with an "X" through the picture. Over the next 3 days, the pushing continued to decrease. So we think we have it fairly under control now.

Emery's school is dismissed at the exact same time I am picking up Blake, Conner and Avery from school. So for the first two weeks, Ashley walked to Emery's school to pick her up and walked her back home. With the Michigan Winter season fast approaching, we knew this method was not going to work for long. We decided to have Emery ride the school's special needs bus. Since we live so close to her school, Emery is the last one to be picked up in the morning and the first one to be dropped off in the afternoon. She is not on the bus very long at all, but she absolutely loves riding the bus. She patiently waits in our garage as the bus pulls up until it stops, and then she scoots out to get on, giggling all the way.

I am still taking Emery for her one hour of therapy at Horizons because we are paid up through December. With drive time, Emery has to miss a full afternoon of school to go to Horizons. As much as we love Horizons and Emery's therapist of two years, we will probably discontinue these therapy sessions. If our insurance covered more than one hour of private therapy per week, we would consider continuing. But one hour just doesn't seem worth it.

We did not notice any adjustment issues at home with Emery. She is happy each morning to go to school. Her teacher and therapists thought she would be coming home completely exhausted from having such a structured day. I told them that Emery is rarely exhausted. I promised them I would treat them all to a Starbucks coffee, if she came home tired during her first week. As I expected, I did not have to buy any coffees. Emery is like the energizer bunny!


Saturday, November 15, 2014

Catch Up - Emery

I am so behind on blog posts. I will attempt to get caught up over the weekend.  So, my first catch up post will be about Emery.

We had our follow-up meeting with The Imagine Center in September. Emery received a diagnosis of ASD - Autism Spectrum Disorder.  They recommended getting her as much therapy as our insurance would cover and to get her evaluated and placed in our public school system.  We were beyond relief to finally have a diagnosis for Emery.  Since Michigan is one of the states that mandates autism benefits, we thought this diagnosis would definitely get Emery more therapy than the one hour per week she was currently receiving.  Finally, we would be able to get her the help she so desperately needed. The neuro-psychologist recommended speech, occupational, and ABA (applied behavioral analysis) therapy.

Then we were hit with our first disappointment.  The Michigan autism benefits mandate is not applicable to self-insured companies.  Self-insured companies are regulated by the federal government, therefore making them not subject to the state mandate.  Wouldn't you know, Bruce's employer is self-insured.  No additional benefits for the autism diagnosis were available.  I was crushed.  It seemed like every time we thought we had something in place for Emery, it ended up not working out.

We were then directed to MIChild.  MIChild is a Michigan program that helps families cover the cost of medical treatments not otherwise covered by insurance.  Autism therapy treatments are included.  So this was great news.  I had renewed hope.  Then was disappointment #2.  Unfortunately, the MI autism program only applied to children through the age of 5.  Ugh!

We were then directed to CSHCS.  CSHCS (Children's Special Health Care Services) is a program in Michigan that helps cover the cost of services for children with special needs.  The program is available to all ages.  So Emery would qualify, or so we thought.  One of the qualifications is that your child's diagnosis is included in the program.  Out of more that 2700 diagnoses covered by the program, autism is not one of them. 

Emery was caught in limbo.  She didn't qualify for one program due to her age and the program that she met the age requirements, didn't cover her diagnosis.  Yet another disappointment.

We were left with whatever our local public school could offer her.  I can't remember whether or not I ever blogged about my conversation back in January with Special Education Director from our public school.  He had told me that I would have to enroll Emery in a regular class before I could have her evaluated.  I did not see this as an option.  Emery could not be in a regular classroom even if it was only for a month or two.  She would not be able to handle a regular classroom for a day or two.  I tried to explain this to the director, but he was insistent that I needed to enroll her first.

Well, we never did enroll her.  So she was not evaluated.  The professionals at The Imagine Center
informed me that as a resident within the school district, the school was required to evaluate Emery for special needs placement regardless of her current enrollment.  So I obtained a lot of information regarding Emery's rights and contacted the director again.  He again began insisting that I enroll her.  Once he realized I understood our rights, his attitude changed.  We scheduled an evaluation for Emery. 

I was a little wary of the special needs program based on my conversations with the director.  However, I knew we needed to get Emery as much therapy as possible and this was basically our only choice other than private therapy at $200 per hour. 

As it turns out, Emery's evaluation went extremely well.  She was evaluated by the school speech therapist, occupational therapist, psychologist, and social worker.  I was also informed at the evaluation that our district had an elementary autism classroom within walking distance of my house.  This was quite contrary to what the director had told me in January.  He said that Emery would have to be bussed to another district and would most likely be on the bus for one hour each way.  I was so excited to finally be getting some good news.

After the evaluations and recommendation that Emery be placed in the Autism room, the team at the school completed Emery's IEP (individual education plan) and Emery started school full-time on October 14th.  School for Emery is going far better than I ever expected.  The best thing we ever did for Emery was to obtain a diagnosis.  I will give more updates on school in another post.