New Tests, New Diagnoses, New Pills

It’s been an absolutely crazy busy month which is why I haven’t posted anything in so long.  Andy graduated from Kindergarten on Friday and the last day of school was Monday.  We are trying to find a house to buy (if we get approved) while also looking for a place to rent just in case we can’t get everything closed by our lease end (hello, NOT paying $2200 a month to stay here!).  Add to all of that a job search for summer and a teaching job hunt and I’m already exhausted.

Andy has once again added something to the mix of his symptoms for us to dig into.  Back in February when he was having those bad lows, I started noticing some unusual behavior.  He would just stop all of a sudden whatever he was doing, stare into space and his eyelids would flutter.  This all would take place within about 5-10 seconds and then would be over as fast as it started.  The first one happened when he was having a low so I thought it might just be a reaction to his low blood sugar.  But when it continued to happen off and on at varying times, I started to get suspiscious.  One day, I happened upon a documentary while channel surfing called “Autistic-Like” and many of the symptoms of this little boy were very similar to Andy.  When they mentioned having an EEG and finding out that he was having Absence Seizures, the light bulb clicked over my head.  As I listened to them describe what they saw as the EEG recorded the seizures, it sounded just like what I had been seeing in Andy.  Since Epilepsy is part of the syndrome he has (DEND syndrome) it has always been in the back of my mind, but I always just equated epilepsy with the grand mal type of seizures that were very obvious.  I had never heard of any other kind.

So I put on my research cap again and got down to finding out as much as I could about it.  When he had his yearly check-up in April, I mentioned it to the pediatrician.  She said it wasn’t an emergency, but that we should get it checked by the neurologist when we see him next.  I’ve mentioned it to our Neonatal Diabetes support group and got a few other parents responding that they have seen and/or been diagnosed with varying types of seizures.  So now, we are checking into it.  The neurologist told us that we needed to do an EEG to get a better picture of exactly what type of seizure activity he could be having since the treatment for different types can actually make one worse if you get it wrong.  So off to another test we go.  We are scheduled for Monday right now, but it may change as I have to coordinate with dear hubby with his job.  I also think he would be better as a support for Andy during the placing of the probes as he is much better at calming Andy down.  I’ll update when I can.

We are also starting Andy on some medicine for ADHD tomorrow.  After a year in Kindergarten and a discussion with the IEP team and all of Andy’s doctors, we have decided it is time to explore some medicine to help him calm down a little so he can focus.  Of course, with Andy’s reaction in February to the amoxicillin, the endocrinologist is very cautious about trying any new meds.  I’m a little scared too so we have decided to get him hooked up to a continuous glucose monitoring system (CGMS) for about a week.  It’s a pretty small sensor, but we do have to go to the clinic for the nurse to insert it somewhere on his body.  Andy hasn’t had anything permanently attached to his body since he was 21 months old so I’m curious as to how he will react.  He’s now 20 pounds heavier and much more muscular so I hope it won’t be too much of a struggle.  But it will give me peace of mind and that’s the most important thing.

With all of that going on, we are also finally starting some speech therapy for Katie.  It’s actually a class we are attending for 8 weeks this summer so I’m hoping to learn a lot.  Luckily, they were more than happy to have Andy join in and yesterday’s class seemed to go well.  At least the kids group leaders didn’t have to come get me in the middle of class, so I’m thinking that’s a good sign!  We are also attending a playgroup on Thursdays for toddlers.  Katie has been going for 2 weeks now and is doing well and the great ladies at the hospital agreed that Andy could come in too.  Today will be the first day for that.  We’ll see how it goes.  The main think I worry about is his size compared to the toddlers in the class.  Hopefully he can behave and maybe even learn a few things about social interaction.  Say a prayer for me to have patience.

Summer Has Begun! 🙂

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About Christy

Christy Vacchio is a former teacher and now Science Instructional Coach in Cincinnati. She is an avid reader and researcher. While she has her bachelor's and master's degrees in education, she plans to get her PhD in Neuroscience in the future. She hopes to participate in research on Neonatal Diabetes and Developmental Delays one day.

5 thoughts on “New Tests, New Diagnoses, New Pills

  1. Hi Christy-

    You may not have a choice, but the Daytrana patch has been the best ADHD medicine we have used. It is a slow release of a stimulant which gives a slow intake of the medicine and “let down” of the medicine.

    The other thing is it last all day!! So our son has it literally from 7 am – 9 pm. He can’t function without it. 🙂

    We are going to see an endocrinologist for the first time for our daughter in 2 weeks. I am really hoping she can give us some answers!

    🙂
    Warrior MAMA Lisa

  2. Thanks Lisa. I will put that on my list of questions for the doctor next time we see him. So far the Focalin has been OK, but I think we will wait until school starts to really see if it’s working. I’ve tried so hard to get him to do “work activities” to no avail this summer. I’m momma and not teacher to him so I finally just gave up and let him play. Good luck at the endocrinologist with your daughter.

  3. Dear Christy,

    My name is Carolina Lahmann and I am a PhD student at the University of Oxford studying the V59M mutation. I was wondering if you would mind getting in contact with me as it would be really useful for me to get your insight on iDEND. Thank you very much!

  4. Would like to know more about Dend. We just found out my granddaughter has this. We understand that this is very uncommon

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