So tomorrow will be a week since Landon has started steroids. Things don't really seem any different? We are staying optomistic things will start falling in place. Soon we will be back in Philly...
Therapy is going great! The therapist are amazing, and we have already started to see improvement! So exciting for us!
Landon had his 9 month well checkup today which was great! He is 90% for height and 75% for weight...he is starting to thin out! The doctor thought he looked great, but delayed in fine/gross motor skills as well as very low muscle tone. He also said he thought Landon's low muscle tone could possibly be from the actual cause of the seizures. I haven't been able to get those words out of my head. The thought of not knowing why he is having seizures scares me to death! (or knowing the cause scares me to death) Needless to say I haven't had the best or most optomistic day today. I try to always say it could be worse, but I'm allowed to have a day when I'm fed up...right? Tomorrow is a new day, and I plan on making the best of it!
Hope all is well with everyone! Still saying prayers for all!
XOXO,
Heather
Tuesday, May 25, 2010
Sunday, May 23, 2010
2nd Philly Trip
So we have returned from Philadelphia again. We had a routine EEG done before the appointment. At the appointment our doctor informed us, Landon now has developed pre-hypsarrhythmia. Meaning he has hypsarrhythmia, but it isn't full blown yet. His EEG has worsened, but the good thing was he seems to be fighting full blown hypsarrhythmia. Landon has now been started on intense steroids for the next two weeks to hopefully help him become seizure free? We will again return to Philly to see how his EEG looks at that point. He had a few good days after we started the steroids, but today he has had two seizures. The doctor said Landon isn't the typical Infantile Spasm child...he is very active, which isn't the norm. The doc seemed extremely optomistic, and of course couldn't give us much information on what to expect. Each child will write their own story. All 3 of us had blood drawn to become part of a study to see if they can finally find some answers to why children have infantile spasms. Wouldn't that be nice?
We did have some fun on our way to Philly. We stopped at the Hershey factory and Bass Pro Shop! It was fun, but a very long 2 days, considering we were in the car 6 hours each way! It's a long trip, but we are finally getting some answers! Landon is such a trooper when we go, he just watching dvd's.
Thinking and praying for everyone! Hope all is well!
XOXO,
Heather
We did have some fun on our way to Philly. We stopped at the Hershey factory and Bass Pro Shop! It was fun, but a very long 2 days, considering we were in the car 6 hours each way! It's a long trip, but we are finally getting some answers! Landon is such a trooper when we go, he just watching dvd's.
Thinking and praying for everyone! Hope all is well!
XOXO,
Heather
Tuesday, May 11, 2010
8 days
Well at least we made it 8 days seizure free. I had such a good feeling about it, and I am somewhat shocked to be back to daily seizures. I shouldn't be...but I am. We had a GREAT week, and for that I am thankful. Hopefully new meds will be the answer. We return to Philly next week and will choose a new med. I am uncertain which path to take with his meds. The doctor mentioned depakote, or prednisone. Does anyone have any suggestions about either med? On a good note we are starting OT today, or at least the evalutation is today! I'm so glad we will finally have therapist watching and helping him now.
Hope all is well with everyone, still praying for you all!
Xoxo,
Heather
Hope all is well with everyone, still praying for you all!
Xoxo,
Heather
Friday, May 7, 2010
Leaps and bounds...
What a change I can see in our little guy. He is babbling non-stop these days. It is music to my ears. On top of all the "talking" it seems he may be trying to finally roll. It's amazing to see the things he can do when he doesn't have seizures! I am SOOO HAPPY TO SAY...We are 1 WEEK SEIZURE FREE today!!!! Wahoo! That is such a great things to say, because it is the longest seizure free period we have had in 6 1/2 months. I am starting to see how people with healthy children have it...(minus the medicine twice a day) I am so greatful to see him making all this progress. I was really starting to get worried about all his delays, but I think we will move forward quickly as long as the seizures are controlled. Next week we are starting all the therapies.
God has really blessed us in many ways, most of all with our precious Landon! Hope all is well with everyone! I am still praying for everyone!
Xoxo,
Heather
God has really blessed us in many ways, most of all with our precious Landon! Hope all is well with everyone! I am still praying for everyone!
Xoxo,
Heather
Wednesday, May 5, 2010
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
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
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