The dreaded EEG…

Our neurologist is awesome and so is the person (Ramsey) he sends to your house for an EEG.  Sean has had a few EEGs in his 9 years.  This is the second one done at home.  The first one went way better than I expected to be honest.  This latest one was harder than I anticipated.  Meeting in the middle of those two experiences would have been nice.

It took about an hour to get it all on him.  Poor Kelly took the brunt of Sean’s displeasure. Kelly literally had to sit in front of him on a chair and have Sean wrap his arms around him.  When Sean would get too upset, he would try (and too often succeed) at butting Kelly’s back with his head. This would cause some of the connections to jar loose and we’d be back at square one. We got through it though, but all four of use were sweating by the time it was done. If Kelly hadn’t been there this time, it would have been nearly impossible to get done.

The doctor wanted it hooked up for up to two days.  Having him wear it while sleeping would have been important. Ramsey said that he had hoped we’d get an hour of reading out of this EEG.  Kelly and I took Sean to DQ right after because not only would it take his mind off of it all for a bit, but he also deserved a treat.  He was pretty tough to handle during it all, but I am sure he was uncomfortable and scared too.

I took the other kids to finish their school clothes/supplies shopping and received word that Sean had pulled half of it off.  He lasted and hour and 45 minutes with it all on.  WE pretty much knew that unless we strapped him down, he wasn’t going to keep it on.  Fortunately, we weren’t having the EEG done because of a suspected problem. Hopefully, the doctor can get some sort of data from this one because I’m not thinking we’re going to do that again anytime soon! 😉

 

 

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Interesting or infuriating, you pick…

Personally, I’m going to go with infuriating. You be the judge for yourself.

I posted for help yesterday and I’m really glad that I did.  Networking and gaining knowledge on anything that might help Sean is just one of the many reasons I started this blog. Maybe someone will read something and tell us about a new therapy, medication, service, etc. Yesterday, a friend put me into touch with a friend of his who has fought to get her child help and has been an advocate for other children in Michigan.  This is just the connection I needed! Thank you Andrew!!

She told me where to call and what to say.  She told me that they would deny that he could get help and give me the run around.  Yep. That happened. I’m not giving up though.  I’m going to push it further at this level and then if I don’t get anywhere I’m going to be vocal publicly.

The lady I spoke with today was very nice, unlike some of the other CMH/DHS people that I’ve spoken to in the past.  She did seem compassionate about our situation.  However, I don’t think she was completely informed and I’m not going to just take today’s answer from her as my final answer. Community Mental Health says right on their site that they help children and adults with developmental disabilities.  Well if Sean doesn’t have a developmental disability then I don’t know who does!?

She did tell me something that honestly should infuriate every single tax payer. (bear with me for the backstory)

I told her about how I applied for Medicaid as part of the waiver program.  I had to apply for Medicaid, be denied, and then apply for the children’s waiver. When I did that the state mistakenly didn’t use mine or Kelly’s income on our application, even though it was listed.  Therefore, pretty much instantly (like a matter of minutes) our whole family qualified for Medicaid.  We were a family of six with ZERO income according to the state.  I, of course, didn’t realize it was because of this error.  They had asked me a whole bunch of questions on the phone about Sean and I figured we qualified based on his disability. WRONG!

I told the person that did the intake interview that day last August that I was a teacher more than once.  She knew I had an income, but it still happened.  I even told her that I didn’t think I would qualify because of our income.  She assured me that I qualified that I just needed to continue to the next step.  She had me choose doctors on the plan for all of us, etc.  I went to the pharmacy to pick up Sean’s medicine and had NO COPAY to pay.  I couldn’t believe it.  It happened so quickly. It was relatively easy.  We were getting help! I should have and could have just left it, but I knew that it was an error.  It had to be, so I called to check on it.  The person who answered the phone listened and then asked me if I had a job.  I told her that I did and how much I made.  She literally laughed at me and said that it was definitely a mistake. 😦 So then it took my almost 6 weeks to undo Medicaid in error.  It was a nightmare.  I knew it was too good to be true and it was unfortunately.

The lady today told me that I should have kept the Medicaid.  I told her that I didn’t really qualify and didn’t feel right about taking advantage of an error like that.  She reiterated to me again that I should have kept Medicaid in error.  ARE YOU KIDDING ME? People do you see the problem here?

Let’s recap what some of the government offices in our state have told my families and others too…

Families with special needs children in Michigan have been advised to get divorced on paper to qualify for help. 

Families with special needs children in Michigan are told to quit their jobs and get government assistance and Medicaid to help receive services. 

Families with special needs children in Michigan are told to take Medicaid and other services in error to receive help. 

Doesn’t this make you REALLY wonder what else is going on with these programs?  

I find this infuriating.  You might find it interesting.  You might not even care because it doesn’t affect you, but you never know if one day it will . 😦 

If I’m honest…

If I’m honest…

I would admit that I’ve been in a bit of a funk regarding Sean’s autism/PANDAS journey.  I would admit that I haven’t been feeling too hopeful over the last couple of weeks either. I think I do a pretty good job staying positive, but lately it has been a struggle.

I think this is due to a few different factors.

The first being that I haven’t been going to church on a consistent basis since last fall.  I’m the kinda girl whose favorite day of the week is Sunday because of church.  However, last fall Sean started into a really bad flare of his PANDAS.  What that means is his infection level and inflammation were both elevated.  He was miserable at home and therapy.  Kelly and I were literally beside ourselves trying to make things better for him. It was a pretty helpless feeling and it went on for 3-4 months.  He was on a strong antibiotic and steroid burst at one point which made things even worse for him. (I’m going to make a different post to share what and who has been able to help him get on a much better path.) At any rate, church for Sean was definitely out of the question in the fall.  Leaving the house with him except out of necessity was pretty much the only thing on our agenda with Sean during those months. It hasn’t changed all that much since then in that respect.  He’s going through a pinching, spitting, and incessantly touching people’s faces phase which has made it difficult to too much outside of our house and therapy.  Thank goodness for our pool because that keeps him greatly entertained!

A couple of weeks ago, we received notice that our insurance company was only partially approving his ABA therapy.  I’m used to the insurance company not wanting to cover the expensive therapies or treatments.  The part that felt like a kick to the gut was the fact that they stated the reason for denying full coverage is because he’s not making enough progress.  According to the guidelines, he needs to meet 50% of his goals.  He met 67% in this time period, but apparently that isn’t enough for BCBS – MESSA. Sean is nearly 10, but is performing at the age of a 3 year old.  They expect the gap to be closer.  Gee, wouldn’t we all? However, I used to hear that Sean was like a 6 month old, so he has DEFINITELY made progress.  I can’t tell you how badly I wish it was more, but I am super proud of how hard he works and how far he has come.

For some reason, this really knocked me down. In addition, the same week we found out that Sean’s amazing neurologist was closing his practice. This is the doctor who diagnosed Sean with PANDAS.  This is the doctor who didn’t just try to cover up his symptoms with ADHD medicine or Zoloft.  This doctor wanted to dig deeper and did. He looks at the whole child. He is an integrative neurologist who takes insurance and is brilliant. He helped us so much and I was pretty upset to hear the news of the closing and that it was due to health issues for him. This knocked me into feeling even worse.

Sean is adorable.  Sean can be very lovable.  However, Sean can also be aggressive and difficult too.  He surely has a stubbornness about him that may or may not come from me. 😉  Either way, on good days and bad,  life with Sean is extremely exhausting as he can’t be left alone and we are constantly cleaning up after him. I am praying that with continued biomedical intervention and daily therapy, life will get easier for him and for us too.  His spitting obsession has been pretty disgusting, rivaled only with the poop smearing which he still does from time to time. Like I said in my first entry, I’m keeping this blog real.  If I share the real struggles it will make sharing the real triumphs that much sweeter.

So, needless to say,  I spent about ten days feeling pretty hopeless and sorry for myself and for Sean too. That’s the longest stretch for me– that I can remember anyway.  Even the most positive and faith filled person can feel weak at times. I’m working on leaning on my faith and staying hopeful.

Fortunately, this feeling has passed (I think) and I’m ready to be a Warrior Mom once again!