Still no sleep but the kids are alright
Can’t believe we have an 8 year old! Holy cow! Where did time go? Lizzie turned 8 and wanted to spend her birthday with her cousins in Victoria.
Lizzie is doing great. Loving the third grade. She will start a program soon called Girls on The Run. Both her and Cooper are still taking swim lessons.
August has been a bit of a whirlwind for us. After a few days on the medication the neurologist put Cooper on, we noticed a complete difference in his behavior. He did start sleeping better but that slowly stopped as well and he was visiting us at 3 am.
Cooper had his 4 year check-up. His doctor questioned why he was on the medication and we told her what we knew: they saw spikes on his EEG, his EEG was abnormal and it was to prevent seizures…that he wasn’t having. We all agreed he didn’t need to be on this medication. (He was also one of several children she had seen with the same folder from the same neurology facility with the same diagnosis)
I called the neurologist to ask about another medication and to see why he was on this one. I also mentioned after talking to his pediatrician, we have concerns. The neurologist tried to explain but as soon as I mentioned his pediatrician, the neurologist got very defensive and said that she went to school for neurology and a lot longer than she did. That upset me - she didn’t seem to have my kid’s best interest and more of a contest of who knows more.
After talking to his therapists and hearing from the elementary schools psychologist apparently he is one of MANY kids that was told have EEG, MRI, medication, genetic testing and hours and hours of ABA therapy. This did not sit well with me.
We decided to start weaning him off the medication. We still have an MRI scheduled and not sure if we should cancel it or not. He will NOT being doing any ABA therapy. We also contacted another neurologist for a second opinion.
Cooper also started PPCD (Preschool Programs for Children with Disabilities) at a nearby elementary school. (The school that Lizzie goes to doesn’t have the program and they feed into the near by school.) He goes from 11:55 to 2:55 to big school and loves ever minute of it. He has the best teachers and we are so glad he is in the program. We are started to see differences in his behavior already.
He will be also starting his MDO Preschool (3 year old class) next week on T, TH, F from 9:00 to 11:40. We feel that this is the best for him. He also is still doing private therapy on Mondays.
So as of now Cooper loves school, is back to not sleeping through the night (even with the help of melatonin) and is thriving. We still don’t know what to do about the MRI. Sometimes we still don’t know what to do when it comes to Cooper. And the guilt of having to put Lizzie second at times is always there. But we do our best and make sure they know we love them more than anything.
EEG Spikes and Cooper
Note: I wanted to let everyone know how grateful for all the prayers, good thoughts and vibes. We write this blog to keep all our family and friends updated in one easy swoop. We aren’t by any means looking for pity. Things could be much, much worse. We are beyond grateful and blessed for our little boy that God gifted to us. We are also grateful and blessed to have all of you. I am under the opinion (my own) that God puts people in your path for a specific reason, sometimes you find out those reasons. I don’t think that the people you meet are by change or circumstance. And that includes all of you that have supported us.
Last Thursday (July 25) we got a call from the neurology center. They found something on the EEG and asked if we could come in as soon as we could. That happened to be today. (Tuesday, July 30) We were going to see a different doctor at the practice. The one we saw before specializes in autism and ADHD.
The new doctor explained that she had seen spikes on the EEG. They happened randomly and they are commonly seen in children with autism. The spikes were on both sides of the temporal lobe region (on the sides of the head.) The weren’t constant. They were sporadic and it wasn’t like there were a ton of them.
After meeting Cooper, she saw some of his “autistic” mannerisms, covering his ears, flapping his arms. She also saw some of his ADHD, anxiety and behavioral issues - running around the room, jumping, walking on chairs, dancing and asking questions.
She also had a plan of action for us. And this is where we are right now. Two of the three things I was going to ask about if they didn’t bring up, were mentioned. The first one is a genetic test. However I didn’t realize Dustin, Cooper and I were all going to have a genetic blood test done. This will take 4-6 months to get results. It is a full panel that is going to see what we all have. Cooper did have a genetic test done involving salvia but that came back normal and showed he had no signs of autism or ADHD.
The blood test was awful for Cooper…well really all of us. Dustin had to sit and hold him down. I had to come in front and keep him pinned to Dustin. I watched as all his moving around caused the needle to come out and blood spurted all over. I watched as the nurse found another vein and moved the needle around until blood started flowing into the tube. It killed me to see.
The second thing she suggested that I was going to ask about was an MRI. She really wants to take a look at his brain and make sure everything is normal. I think she may also want to check for any trauma his brain may have endured during childbirth. I think that he had some damage done when they delivered him. And it is quite possible. That will be done in a week or two with a 3-4 day turn around on the results.
She also is putting him on a low dose medication to stop the spikes. It should also help him concentrate as well. So we are going to try it and see. Also she suggested ABA therapy again, but we really want to wait and see how he does. I don’t like the idea of my child going 7-8 hours of therapy a day. Plus we need to do more research. And we want the medicine to work before we start throwing things at him.
This is our game plan for the time being. He is still enrolled in the preschool he attended last year for the fall. We are also waiting to hear back from he school district on any what he qualifies for and if he is going to start this year.
Thanks again for reading and supporting us!
Cooper and his bandage from the blood draw.
Let's start at the beginning
It’s a very good place to start.
Dustin and I started dating at the end of 2003. We both worked for a newspaper. Eventually we went to work for a paper in Katy and moved. We eventually got engaged and married in 2010.
We had Lizzie on August 23, 2011. She had a milk protein allergy. But other than that a pretty good baby.
We had a miscarriage at 8 weeks, followed by a chemical pregnancy and then lost another pregnancy, Luke, at 16 weeks.
After being told that we shouldn’t have anymore children by a genetic counselor, we found out in October of 2014, that we were expecting.
I was brought in for testing, blood work and monitoring because of pregnancy history and because I was 37. We were going to have a boy and everything was going great.
Cooper wasn’t a rough delivery. But we did have problems pulling him out. But he came out.
Cooper ended up with a milk protein allergy, eczema and reflux. But he still hit every single milestone. He was climbing before he could walk!
When he was 18 months, he vomited for 54 days straight. After numerous testing, Cooper was found to have severe silent reflux. During this time he stopped taking and his speech became delayed.
Over the next few years and struggling in his 2 year old daycare class, we had him tested for speech and occupational therapy. There we found that Cooper is delayed in speech and has pervasive developmental disorder and is a sensory seeker.
He ended up having an endoscopy to check his reflux and was found to have ulcers and some reflux. He also had tubes put in his ears in November of 2018. (One has already fallen out – drats!)
We had him genetically tested by a neurologist and it was found he didn’t have any issues. However, we have yet to do an EEG on him.
He was tested by the school system and was found to have speech issues and autistic.
So this is where we are today.