Philly...

It's been a few weeks since we have gone to Philly, so sorry for the late update! First off, the city was beautiful! We went a day early to enjoy the 6 hour drive...lol. There was so much to see, and Landon was a complete angel all day!

I must say even the EEG was much better than in the past! The lady was sooo comforting to Landon. If he fussed she would stop and sing to him! I was amazed at how caring she was! After the EEG we were sent to a waiting room waiting for the appointment with the doctor. I was AMAZED when the doctor himself came to the waiting room, introduced himself and took us to the room!!!! I have never seen any doctor do this...EVER! He didn't rush us, and was more than happy to answer any questions! Unlike the past, you could tell he definitely did his research on Landon's case! It was so nice to only verify the history for him! As for his diagnosis...He feels Landon has 2 types of seizures...the partial seizures, and his myoclonic seizures. Although he does have a irregular EEG without seizures...it is not hypsarrhyethmia. He also gave us hope tht Landon could possibly still outgrow these!!!! We were sooo happy to hear this! It's nice to have some hope to hold onto! He took Landon off 3 of the 6 meds he was on, and tried to ween him off a 4th. However, Landon started getting much worse so he bumped it back up for now. He said we will try again once things seem to improve. I was relieved to hear "delete" some of the current meds! It was a 2 hour process to sort, and prepare his meds each day! I had spreadsheets, calendars, and dry erase boards around the house to make sure I knew the correct days to refill, and each increase/decrease. It was overwhelming to say the least. We will be back in Philly in 2 weeks for another EEG, and visit with the doctor.

I also asked about his seizures possibly caused by immunizations. He said no, but hesitated. He then said there isn't really a way to prove it. I am not convinced, but understand there isn't a way to prove it. So, Landon won't have immunizations unless we find a cause.

Landon had a bad 2 weeks after we left Philly. I did some research, and thought it could possibly be from Trileptal withdrawal? He was on it for 6 months, and we just pulled it "cold turkey." It needed done because it wasn't helping, and with myoclonic seizures it can make them worse sometimes! But I am SOOOO happy to say today will be day 5, seizure FREE!!! That is the longest span, and I'm hoping it is for good!

Landon has learned to babble, all the time. (which I LOVE) He says DaDa, BaBa, and BlahBlah! (The doctor said that was his main concern was for Landon to babble.) He still hasn't rolled, crawled, grabbed anything or really sat for a long period by himself. We are still waiting for the OT, PT, and Speech to start! This process is also frustrating! We keep losing months at a time! If we had the therapies I can imagine how great he would be doing! I am thankful that he has been progressing in the last few days. We are catching back up from the bad 2 weeks, but we will get him where he needs to be!

Hope all is well with all of you!!!

Xoxo,
Heather