Land of Confusion…

After yesterdays trip into the city, I can say I am now totally confused about ….

well…

everything.

I thot I had a grip on a lot of it after our first appt. with ESAM (Epilepsy & Seizure Association of Manitoba). Phyllis spoke to us and made both Dennis and I feel like we werent crazy about all that we have seen over the last 3 years! She agreed that Sam probably HAS been having AT LEAST partial seizures all along (since his accident in 2008). She told us that the shaking of his arms and legs are all partial seizures. She told us that we will need to make an IEP (Individual Education Plan) for him at school  so that it works with his seizure activity. Phyllis offered to come to the school meeting for this to help us to get the teachers to understand that this is SERIOUS and not just us.
We also learned that with dietary changes we can work on reducing the seizures. Adding a few things to everyones diet and eliminating other things will help Sm and give him the support needed. (this is going to be a tricky one since he IS 15 and knows everything… and does NOT want to lose the sugar and salt from his diet!)
I had done a bit of research before going in to talk with ESAM and found out that there are service dogs available for people with epilepsy. The dog can be trained to do quite a few things like getting help, alerting Sam to a seizure coming, keeping him safe during a seizure. So I asked about this and Phyllis said “YES! Start that process now! It is a 2-3 yr process to get a service dog so start now!” (side note — if someone would have listened to me in the last almost 3 years we could have almost been to that point of receiving a dog — **sigh** but I am over it now!lol) So I am going to be busy on the phone with the local Lions Club to see about getting it all started.  They can help to get the funding for this around $22,000.00 for the dog!
So after over an hour talking with ESAM and learning all we did and collecting a TON of info to bring home to read … we left for our doctor appt. with the ped….

That where things went a bit … out of my loop.

We were talking with the Dr. and he seemed a bit put off that we had been to ESAM. (too bad for him) and then when we asked for a referral to an adult neurologist — these 2 are also epileptologists who are specialized neurologists (and I gave him the names of the 2 we would like to see — names we got from ESAM) he seemed a tad miffed that we were calling shots. (again too bad for him) When I tried to ask WHY we have not see a neurologist he never really answered me. He was not too concerned with Sam’s partial seizures or helping us to get things set on a more seizure free path– other than taking his meds. (which are now up’d) Sam has also been sundowning much more earlier than in the past 3 years now that he is on these meds and even more so now that they have increased the levels. So he DID tell us to switch up the dosages t 3X a day instead of 2. (he will take 2pills 3X daily instead of 3 pills 2Xdaily) and he hopes that will help with that issue.
We informed the doc that we had not heard from the neuropsych yet or the sleep lab and he basically seemed to indicate it was out of his hands…but he did get me their number to call and see where things are going with those areas.
He finally agreed to send a referral to our first choice of neuro/epilep but warned us that if Sam has another seizure we will we sent to Wpg and they will put him in to the Childrens Hosp. and we will see a ped. neurologist.

When we left the doctors office I was more confused and frustrated… but I am praying that NOW finally things are moving in a right direction.

We had a very unexpected phone call when we got home from Winnipeg but right now I can’t say anything about it as I am not sure what it will all do or not do for us…

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3 Comments

  1. Wow Jodi just one right after the other. U are doing amazing to keep on top of it all. My prayers are with u for continued strength.

  2. In 15 years no one has ever mentioned diet to us for our son's epilepsy. Can you please tell me what you were told.I have often wondered about a service dog for our son but everyone always dismisses it as too expensive. You've got me thinking again.I'm sorry your day was confusing but your post has been enlightening for me, thank you for sharing.

  3. I feel your pain, over a year after my fathers accident we were left with no neuro-psych they kept giving us the run around about catchment areas etc. Our local hospital wouldn't deal with him because he had been in Sunnybrook in Toronto, Sunnybrook wouldn't deal with him because we didn't live in Toronto. We finally wrote a letter to the president of Sunnybrook voicing our frustrations, got an meeting with him, and them two options for a neuro-psych. Anyone suffering from brain injury in Ontario please look into Ontario Shores in Whitby, they did wonders for my father. Dr Ghaffar and his team in the NRS are great. I know without them my father would be drugged in a psych ward somewhere. Shannonelnoradesigns@rogers.com

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