Tuesday, June 9, 2009

What a great day!!

Today all three kids went to a Moms Day out until 3pm. I was not sure what to do with myself not having to take Chase to therapy or pick up kids at 2 different schools. Well I did find something to do. I went shopping!!! And to lunch with a good friend!!

Chase has not slept more than a few hours in teh past three days. Not napping either. Today he was really strange after I picked him up from Moms Day out so wondering if he got ahold of something he is not supposed to eat. Maybe I'll call teh preschool to ask in the morning.

Last week we went to the new neurologist down in Gainesville, FL. After waiting almost 3 hours to see him in the tiny little patient room with a not so patient toddler. He came in and said that Chase has "myoclonic epilepsy with a severe communication delays". At this moment he said that he did not appear to have Autism. He said several of his toddlers have these type of rare seizures at this age and he has found that they all are about a year and a half behind the average child. Which is about right because we are between a 6-9 month old level with communication still.

He also stated that recently a neuro up north has discovered that a small group of these kids have an abnormally low glucose level in the spinal cord which could drop with certain foods which then would cause the seizures to occur. So he said it was not unlikely that glutens could cause him to have the seizures. It is the first time a doctor did not make me feel crazy for saying that he goes into a seizure after having lets say saltine crackers. He wants to stay off anti-seizure meds for now and re-evaluate in 3 months. Apparently the seizure meds we were put on are the wrong type for his seziures and that is why he got worse. He does want us to run one more genetic test but it is 4K out of pocket so won't be doing that one for awhile as we are still paying off the last set of tests. I am just thankful that I followed my gut instinct and took him off.


The progress we have made in the past 3 weeks with our new in home speech therapist and our new occupational therapist have been huge. He still smiles at us but we are working on more eye contact when we are demanding him to do something. Whether it is asking for a snack which we are not there yet but close. He has played with a toy appropriately a few times this week. Which you would not think such a big deal but it is a huge milestone for him.

Thanks to all of you who have supported us through this year as it has been a tough one!

3 comments:

  1. I'm glad you're getting answers. I swear Gainesville is the place to be Michele. I love it there. Joshua's doctors are amazing, not to mention the campus itself.

    Stick to your gut.

    Blessings~~~~

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  2. It was good to hear that your gut instincts were confirmed. I know that Mom's are not always right--but I do think that dr's should put a little more stock into what we say--after all, we are "treating" our special little patients 24/7 while they only see them for maybe 30 minutes. I will continue to pray for you and your entire family, for your physical, emotional and financial well being.

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  3. sounds like you are getting somewhere!!
    That picture of him is so cute!
    I know what you mean about certain things not being a big deal to most, but for him huge. :)
    You are a great mamma and he is going to get better and better!
    Miss you all....and praying!

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