EEG results and more...

I feel like I'm writing the same thing every time I write now. We haven't seen any results with IVIG and we are, for lack of of a better word, disappointed. Can you tell I'm waning in my energy with all of this? (READ AHEAD AT YOUR OWN RISK.... I AM GOING TO RANT NOW!!!!)

I know I have to keep going, there isn't another choice, but I have so much anger in me to the point that I feel like I'm not myself anymore. Some days are better than others, and I know I can survive this, but this is with out question the MOST painful thing I have ever had to face. I can tell you why... I know what it's like to have someone you love be so sick and dying. I know that kind of grief, and although Dray isn't dying in the sense that we won't have his physical body here. I FEEL like he is dying in a different way. He is being taken away from me... he can't be himself, he can't interact with us and others with out great difficulty, he can't understand everything around him and grow with what he is learning. He is stuck inside of himself and can't get out. I remember my sister dying and just thinking that she can't go on like this because she was so sick. Watching someone suffer and not knowing how long you have to see them suffer was really painful. When she died, we were of course devastated, but it was such a relief to know that she wasn't going to have to suffer anymore. With Dray I have to watch him struggle everyday, and I have no idea when or even if it's going to stop. I know the seizures will stop at some point, but I have no idea what kind of damage will be done in the end of this. I have lived with this for several years now. How long do I have to watch him suffer? He may end up being fine or he may not be able to ever totally recover and have a normal life. Everyday I can't help the head games that go on in my head of which it will be for him. The torture those games play on me is what really gets to me day in and day out. I think I could come to grips with this much easier if I just knew what am going toward. I know what my end goal is, but I know the statistics on these things, and I am not naive to the odds Dray has. If I knew that spoken language was never going to happen for him, I could take that and run with it. Not that I wouldn't have grief over it, but I would know exactly what his capacity is. Or, if I knew he would be fine eventually, I could have peace with knowing that he will be able to communicate someday. The short term communication issues would not bother me as much. But, this in between garbage of a 50/50 shot of making it...torture!! I will say that I am not totally with out gratitude. I am aware that I have an amazing son. As frustrated as he does get at times he copes beautifully with it. He can still talk! Demands on him to communicate are only going to get tougher, so I pray that he can remain so sweet and wonderful. Sorry for the drama. I have to let it out, or I may go completely insane!

So, here are the options Dr. Thompson has put out there. Most likely we will try an intense steroid approach where he goes to the hospital for 3 days straight on an IV with high doses of steroids. He would have 3 days on the IV 4 days off, and repeat that cycle 3 times. So, that means 9 days at the hospital with an IV in him. I hope they have a mental hospital to check me into when we're all done. Because, for those of you who don't know, Todd is deployed to Quatar until April 13. How will I do this with 3 kids? A very supportive family....thank goodness for them. I would never make it with out them! Dr. Thompson is still considering just trying the oral steroids everyday, again. We will make a decision on Wednesday, he just wanted more time to get as many opinions as possible... to make the best decision possible. So, I'm glad I got my ranting out of my system. Don't worry about writing statements of sympathy... I will spare you all of that. I know you are all praying and praying. What more can you do? And thank you for doing just that... it means a lot!

Quick Update...

We did another dose of IVIG over this weekend (Jan. 30-Feb. 1). It went well on the first day because he slept through a lot of it and we had a lot of visitors. Thanks to Jill and Carson for their visit and my mom and dad. Dray's sisters, Kate and Elle, got to come this time for a little while before my parents took them home. This made the day go by more quickly. We came in the next day on Monday for the next dose. We needed to talk to Dr. Thompson because we have noticed a change with Dray. He is now, several times a day, blinking and spacing out. Signs of absence seizures (pettit mal). So, after a long time with IVIG we went over to neurology to do a quick EEG. Dray was so great through it all. He charms and flirts with every nurse there. He has all of them wrapped around his little finger by the end of his visit. They all gather around him to talk to him, and then he calls out so confidently as we leave, "I love you!" and all the nurses go, "aaaah... he is so cute!!" Dray knows how to win them over.

So, lately I have been thinking he has been doing a little bit better. Better is a very relative term and usually is combined with some other symptom or habit that is not as good. But, he has been able to repeat new words back to us. Which, for him is the most difficult thing to do. I was feeling so depressed because he is now having these little seizures all the time. I just don't want to take steps backwards... ever!! Dr. Thompson called me the next day to discuss his EEG findings. He said they are indeed absence seizures, and now Dray will have to be on yet another medication. We have IVIG, steroids, and now ethosuximide (don't try too hard to say it). But, here's the encouraging part. He told me that his awake EEG overall (other than absence seizures) looked much better than his November awake EEG. Yeah!!! I'll take any good news I can get. Dr. Thompson sounded encouraged by that news. He also added that the absence seizures is in no way an indication that he has taken a turn for the worse, but that it may indicate the opposite. Who knows? I'm just glad that his awake EEG looked at all better. We will do an overnight in 3 or so weeks. I will keep you posted on that.

We are now for sure that Dray has a very violent and nauseous reaction to IVIG. I thought we were in the clear because he reacted so well to the first dose, but no. Tuesday was a disgusting mess of a puke day. I was cleaning puke messes ALL day. Poor guy. He spent all day in the shower and did not ever want to get out. I'm just sorry that he went to school. He just wanted to go so badly!! Next time we will get some medication for that... why should he suffer more than he already has to?

IVIG News and Details...

We are all done with his IVIG treatments this week. Which, had it's ups and downs, but overall went great. On Wednesday he was all smiles and happiness at the hospital. One of the nurses could sign really well and he appreciates when any strangers can sign to him. He lights up and gets so excited. So, the only thing to put him in a bad mood was getting his IV put in. He cried and held on for dear life to Todd. But, as soon as it was done he was over it. We are consistently amazed at his behavior through all the needles, EEG hats, and medications... he just cries at the appropriate time, and then he calms down and does whatever is asked of him. We had to sit for 3.5 hours for the blood infusion, and he did that so great. He got a little bored at the end of it, but was still so patient. He always tells me that he can't take out his IV yet, "the doctor has to take it out... I have to wait". We are writing books for him that are simple, but are effective in teaching him how to read by sight mostly. He knows almost all of his letter sounds, but sound gets very confusing for him a lot of times. So, we looked through the book we made him at the hospital and he is reading it the first time we show him the word. He even can understand fingerspelling if it's a name we've fingerspelled several times. So, the visual understanding is very strong and is in tact. We've got a long way to go on the auditory though... which scares me.

So, we were at the hospital from about 2-8:30 the first night. He slept fine and woke up feeling fine and eating. We didn't think anything about the way he felt until we got into the car to drive up to Primary's again. He almost immediately started telling us that he was going to puke. So, we got out some bags and towels. Bless his heart, he kept trying to stop it from happening. But, out it came. Fun to have that on top of his IV still stuck in his hand from yesterday. Which, was starting to hurt him. So, he looked awful all the way up. I had a new shirt for him, luckily. We got there and he couldn't even walk, or didn't want to. He just laid down in his hospital bed just looking miserable. The doctor came into check him, and she got to have him throw up on the bed while she was checking him out. After that the little guy just klonked out into a very deep sleep. We weren't sure if they were going to go ahead with his treatment because of the nausea, but the doctor checked with the pharmacist and an immunologist (that does IVIG a lot) and they all said it shouldn't be from the IVIG. Yeah right... too much of a coincidence, but that meant they would go ahead with the next dose.

He slept until they got the IVIG set up, and would have kept sleeping, except for that his IV spot was getting so tender. When they flushed the line out he woke up screaming, and kept screaming after the IVIG started going because his hand hurt. Anyway, he finally calmed down. It was a mellow evening for him. He looked miserable and uncomfortable, but we got through it. Today we see no signs of nausea and he seems very happy. I keep asking if he is sick and he says "no," and then opens his mouth wide to give evidence that there is no puke inside. We will have an EEG in 3 weeks and see if this been helpful. If there are any improvements will keep doing it. If not, we'll dump it and move on to just trying several different anti-seizure meds.

Todd and I keep talking about how well he takes everything that he is going through. He seems to calm down fairly easily through it all. I know how painful all of this must be, but he remains so calm and collected through the majority of it. Two cute things: He told me yesterday that his IV is going to help him get better. But, then he also said in his prayers at night, "thank you for the doctor that they took this thing out of my hand." I am continually humbled by Dray that he is going through so much, not fully understanding all of it, and he remains such an obedient, loving, and for a child with his condition, very talkative. It's hard to be grateful that he can communicate this well when there are so many serious deficits in his language and understanding. We just know there will come a day when we can be in the recovery phase, and START to put this behind us. I am his mom, so I cannot imagine him not coming out of this an awesome "in tact"person living a normal life. So, as much as I know the facts, I like to imagine Dray at 100%. I'll take 95% though... I'm not greedy!!

Dates and Times

Just so everyone will know we have our IVIG dates set. Dray will be going up to Primary Children's on December 30 & 31st for his blood infusions. I am hoping to know more details about this process when I call up there. No fun for needles... poor boy, it breaks my heart. But, he really is a tough guy. We got his blood drawn yesterday, and he did put up somewhat of a protest, but overall he took it like a man. He is just so sweet and tries to do everything we ask of him. He has gotten very good at giving himself his own medication. I give him the syringe and he takes care of his business, and that is impressive because he takes a lot of different things. Steroids, fish oil, and some other nutrients that help with various aspects of his condition.

Oh, and just FYI Dray had an awesome Christmas!! He knew exactly what was going on. He told everyone that Santa Claus was coming to his house to give him presents. He remembered to put out cookies and milk. Actually, that was the first thing he noticed in the morning, not the presents, but that Santa ate the cookies and drank the milk. He is really into airplanes, rockets, etc. Anything that moves fast. So, we got him a 3 foot rocket. He loved it and told me he wanted to hug it. I will have to put up some pictures of our Christmas. What a sweet little boy!! Keep him in your thoughts and prayers this week. We just keep praying to find something that will help him. I know so many of you already do... so thank you!

Here's the plan...

I talked to Dr. Thompson last week and we decided on a plan for Dray going forth. My biggest concern expressed to him was that at least on the steroids he has been able to maintain some stability. He hasn't lost his ability to talk completely, which has happened before. He struggles so much to understand us, but for whatever reason he has maintained a manageable level of expressive language. Like for example we'll ask him in a book where Santa Claus is and he'll change the subject or give us the blank stare. But then 2 seconds later he'll say, "That's Santa Claus," so he can say the words, but not understand others when they say it. So strange what's going on in that brain. Anyway, I didn't want to lose that speech again. So, the next step was IVIG (intravenous immunoglobulins). It's a blood infusion that they will do once every 3-4 weeks. I was just freaking about trying it and having any worse results than we are currently having. Dr. Thompson said that we could keep him on the steroids and do IVIG simultaneously. Thank goodness and what a relief!!

Dr. Thompson has become such a source of peace for me. He is never discouraged and always gives me encouragement. One thing in particular that he said was great. I asked him what I'm looking at for the seizures ending, jr. high or high school. His reply was, "Good heavens no. You're looking at months to a couple of years". He also added that we'll have to see what pieces we are left to pick up after the seizures are done, but at least I can look forward to that part being in under control in a reasonable amount of time. Anyway, he is awesome, and makes himself so available by giving me his cell phone number. I don't think anyone can appreciate that until you need to talk to a doctor on a regular basis and you're left leaving messages with an office assistant every time. We'll have another EEG after the holidays... just to be sure, and then we'll do the IVIG after that. We need lots of prayers that something will work for Dray. Thanks to all who offer constant support and prayers for Dray... it is very appreciated!

It's about time...

Finally an update. Life has been crazy... and with Dray it's had some ups and downs. We have tried really hard to stay happy and positive no matter how he is doing, and it does make a big difference. He wakes up everyday so happy. He helps Kate with getting her breakfast, he tells all of us he loves us everyday (many times a day), and he just laughs and smiles no matter what. The past couple of weeks have been tough though. He doesn't seem to understand ANYTHING we are saying to him. It's almost to the point that we have been completely reliant on signing to him. Luckily, he is still able to verbalize his wants and needs, and depending on the day will say quite a bit. So, at least he isn't to the point he was about a month ago when he couldn't even get a few words out. The other night we were working on some "why" questions. We looked at baby faces with different expressions and he had to tell me why they were sad, happy, etc. So, when I got to the scared baby, and asked him why the baby was scared his answer had me laughing pretty hard. He said "That baby is just like Dray, he's got robots in his room. They are in his closet. Is the fan a robot? Is it going to get me?" He just went on and on about the robots scaring the baby, and him for that matter. Such a strange relationship he has with robots... he is both admiring, but fearful of them. Every now and again I get a good glimpse into his thoughts. It is amazing because I can see that there is a lot of imagination and words in his mind, but it is so difficult to get them out and express them to us.

We laugh so hard at his creativity though. Here are some funny Dray creative moments:

• Taking all of my Halloween pumpkins and putting them in the dirt because it's his garden
• Attaching a rake to his bike because he is working in his garden with his trailer
• Taking a vacuum out to the dirt because he needs to "clean the dirt" (can you tell he likes to play in the dirt)
• Turning a diaper genie into a washing machine by putting clothes in it and then almost successfully putting water and soap in it too (good thing I caught him and there was no dirty diapers)
• Dray and Tyson turning the shop vac into a vehicle and riding it down the street

Needless to say our neighbors are always telling me new ideas and projects he has going on outside. Seriously, he does something everyday that is so funny.

EEG results: Dray had an EEG on November 19th. We just got the results today that nothing has changed. We are pretty disheartened. Dr. Thompson is going to call us tomorrow to make some decisions on his treatment. We continue to be hopeful and just try to enjoy what a blessing Dray is in our home. He really is such a joy... despite it all. I can't lie and say that isn't frustrating for us. Kate told us the other day, "you need to stop yelling at Dray," that really made us stop. It is just so hard to get him to respond and get his attention. So, we are going to work on that,and just ALWAYS try to stay positive, have patience, and just adore every wonderful part about him.

More Progress... and even giving Kate speech lessons!!

We are still enjoying the progress that has come with the steroids. Everything he says now is understandable and clear. He is so much happier, and that is always the most welcome of any change we could have. We are almost back to where he was, but we'll take what we've got and be grateful.

So, these are cute pictures from the other day when Dray decided to share his speech therapy experiences with Kate. He got out a bunch of picture cards and laid all of them out. He got a chair for Kate and sat her down. After that he proceeded with his lesson. He would say, "Kate which one is for eating," and she would point, "Good job! Which one is up in they sky?"and on,"Which one drives on the street?". It was so cute and he was so excited to be in charge and teach Kate a few things. Kate was a trooper and played right along with her brother's game. So fun to have him doing so well!

Knock on Wood... we see some progress!

Dare we even say it... we are seeing some improvements in Dray. He is still a happy kid, he doesn't talk incoherent sentences (maybe once in awhile), but he really is responsive to any comments and questions. He answers our questions!! I can understand MOST everything he says and doesn't have to work so hard to get the words out of his mouth. Also, he is saying and mimicking new words every now and again. Which is awesome for him. We are still trying to push the sign language, so that he has that as a back up, and he does awesome with it. He can understand a lot in sign and uses more and more everyday. He knows his entire alphabet and a lot of numbers (he knows those better than me). He is starting to spell out words (by signing what the word starts with). Especially people's names. It has really been helpful and we get so excited to see the confidence he has in being able to understand us all the time. So, Dr. Thompson has switched to the "pulse" method of steroids. He will only take his dose on Friday night and Saturday morning with a dose on Wednesday night as well. We pray this will yield the same progress we have been seeing. It has made such a difference in our home to have him finally able to communicate better. What a sense of peace that prevails when our little guy is doing better. Everyone can sense the change... it is a very tangible thing to all and we are so thankful to see any and all changes for the better. He takes it all so well and continues to fight to speak and communicate. We have decided that Dray is a fighter and does not give up on trying... he is always trying!!

Friday night he got to stay at Grandma and Grandpa Russell's house for a sleep over. I told him he got to go to BYU (which he signs very well) and he was so excited. He told Grandma, once he got in the car to go, where she should turn and which direction to go. He told her she was doing a good job when she followed directions correctly. Grandpa took Kate and Dray swimming in the "scuba diving pool," that is the diving pool with boards, and he went off the high dive all by himself! He just climbed right up and jumped off. Swam all alone to the edge to get out and do it again. He is so brave!

Interesting day!

Yesterday was an interesting day. I was having a bad day, not unusual, but not just feeling sad or down I was feeling so physically weak along with that. I felt such fatigue from everything: physically, emotionally, etc. I was trying to just get through another day, and right at that sad moment a very interesting phone call came. It was Dray's school teacher, Jamie Miller. She was so sweet and told me that she was going to miss Dray so much that she wanted to come see him once a week. This was so fascinating to me. I love Dray to death, but someone else having such a love for him was beyond anything I ever expected. We talked about him and at the end of our conversation she told me what an incredible and special little boy he is.... and how blessed I am to have him. I just broke down to this new stranger on the phone because of how blessed I felt at that moment that Dray had made such an impression and that someone could just love him like that for who he is... even with how hard it is to communicate with him at times. I know he is definitely a unique little guy and I do feel blessed, but sometimes I take him for granted because I am so focused on trying to get him better. I want him to be his old self so bad that I don't appreciate what I have right in front of my eyes.

Jamie and her 4 year old son, Kade came over later that day. Jamie is amazing and Kade was such a doll and played so well with Dray. I was so overwhelmed at this experience and so grateful for people in Dray's life that love him for who he is. After they left he was so full of life and energy. He was saying things he hadn't said in so long. You cannot ever underestimate what an impact love and acceptance can mean to this little boy. I know he feels that from Jamie and it made such a difference to Dray. Thank you Jamie and Kade!!

Progress update

Dray's progress has been slow, actually non-existent, I should say. He has really taken a huge nose dive in his ability to speak. He has moments where he talks very clear and I have some hope. But, most of the time it is either jibberish, repeating the same word or phrase, or just out of breath from trying to say a word or phrase. When he goes through these periods of regression he sounds like a deaf child when he talks. It's crazy how much things can change when he is in a better phase. I feel like I'm going crazy trying to be patient with him because I cannot even imagine how difficult this must be for him, but I feel so frustrated. He tries so hard to talk. I don't want him to not try, so I can't let it show how painful it is for me to hear him talk like he does. It does bring me to tears just listening to how strange he sounds and how awkward all of his words come out. I just know and remember him so differently and I'm finding it difficult to reconcile the two different Drays.

We took him swimming yesterday. He went off the diving board with all of the big kids. He ran and took a big jump off the edge. Everyone watching was amazed and kept asking us how old he was because he could swim so well by himself. He has definitely put his efforts into physical things that he can learn visually. He excels and becomes a whole new child in these activities. We love to find things that he can find confidence and happiness doing.

He is still on the same dose of steroids (prednisone). I talked to Dr. Thompson about his progress yesterday and he assured me that I needed to give it more time. He probably gets tired of over anxious parents that want results right away. It's not so much me wanting results as it is that I don't want to waste valuable time on meds that don't work!! Today I started his picture board for his schedule. He has really taken to it and puts in his own things for his schedule. Like tonight after his dinner picture he put in the trampoline picture. So, we let him go out and jump before bath time. It's fun to see him understanding orders of things and what's coming next. It gives him a sense of confidence in his ability to make decisions and in what's going on in his crazy world. I hope my next entry will be about how I am seeing progress in him. I will say he is staying happy and that is all I can ask for at this point. He is laughing and smiling. His teachers at school just adore him for his sweet temperament. Today was his last day, because we are having home services now. Dray and his bus driver have become quite close in just a few days. Dray looks at him adoringly and the bus driver just adores him right back. They gave each other a big hug good-bye today. It was very sweet.

Good Riddance!!!

Dr. Dray making ME a "hat"

Good riddance to valium is all I have to say. I have part of my boy back again. I say part because he still can't understand anything I say and he struggles with all of his heart to say anything, but he is happy! He is happy and focused again. We can read books again, do his speech therapy assignments (with out it being at all painful), he falls asleep easily, and he is smiling and laughing more. It is so great. Hopefully these things will stick around. I was going crazy trying to get him to do ANYTHING.

The steroids haven't really made much of a difference in his communication, but he is doing great in other areas again. We have really relied heavily on the signing for now, and everyday he picks up more signs. The school district sent me everything I need to get in-home services. I was trying to explain Dray's condition to them, and of course they have no idea what Landau-Kleffner is, nobody does. But, they are willing to do the in-home services, so that's all that matters. Hopefully we'll be able to hear Dray talk normal again soon. We hope and pray always!

EEG News...

We have had a difficult past month. Dray has been completely slipping down hill again from responding well to the valium. Although the effect of the valium only lasted about a week or so, it was nice to see him doing well again for that short time. Dray's side effects from the valium and keppra have been difficult. He is so jittery, can't get to sleep at night, and is just generally unable to calm down for most of the day. It is exhausting to watch him. I talked to his doctor (Joel Thompson) about switching his meds... and he wanted to see Dray's EEG that was coming up before doing so. He had his EEG on August 24th. He was such a sweetie about getting his "hat" put on. Usually he just cries and is in a panic over all of the glue and suctions being put on his head. But, now he is completely okay with it all. He sat so still like a pro and played with some toys.

Dr. Thompson called me on the 28th and said that his EEG had looked just like his first and it was time to go to steroids. So, it's disheartening, even though I basically knew what the result would be. I hate to see him on steroids. The doctor is going to have him taking them everyday (35 mg) and if he responds well we can put him on the "pulse" method of taking steroids. The "pulse" method is taking them just over the weekend on high doses. Until we can do that he needs to stay away from school because of how steroids suppresses the immune system. So, now I need to get the school district to send some in-home services to help Dray. I just hope that won't be an issue.

Dray has been doing well and working hard at his speech therapy. Every time he goes his attention span gets longer with the activities. Sign language is also coming along for him. Last night we had a pretty good conversation in sign language. Dray told me about driving a blue car with dad, and we teased back and forth about the color because it's really a black car. But, he signed most of the words and it was fun to see him communicate clearly that way and understand my signing when I asked him some questions. His neuropsychologist gave us an idea for doing picture boards with him. Which is EXACTLY what he

needs to be able to understand his schedule and surroundings... just making sense of what is happening around him. I am very excited to show him that, and I'm grateful for all the good advice we get from people around us. So nice to have such good and capable people looking after Dray and helping him.

Tomorrow he starts the steroids. We pray that his body will be able to respond quickly and that he will be able to make progress, go to school, and communicate better with us. Thanks to everyone who continues to offer help, love, and prayers for us and Dray.

Getting Started...

I started this blog for my son, Dray, after getting the diagnosis that he has Landau-Kleffner Syndrome. I'm hoping this will be therapeutic for me... because this is a difficult and serious diagnosis to cope with. But, also I would love the opportunity of having someone else to learn from and be able to read about their experiences, so who knows if this blog might be helpful for someone... some day. I hope that some family will one day benefit from our experiences with Dray. He is a sweet and loving little guy. I always thought of him as a smart, engaging little boy that related so well with others because of his smile and his sweet nature. This syndrome has taken much of that away, and we hope that we can get all of him back to us some day.
We are getting started with everything! Dealing with his diagnosis and his regressions, finding new resources to help us (which is a joke), this blog, and medications to help Dray. As of July 31 he has been on valium every night (8mg). Which I saw some good things starting to happen after a few days on it. But, then a slip back to some old problems: talking jibberish, unresponsiveness, and more anxiety than usual. So, after trying for several days, and having both his doctors out of town, we finally got a doctor to put him on keppra. As of August 14 (Saturday) we haven't seen any progress in him. One noticeable difference is that he seems to be bouncing off the walls and very floppy (that's the only word I can think of to describe him). We will give it until August 24th when he has his next EEG over night and then we will re-evaluate his medication.

We had a bad night with him last night. We tried to play "direction games" with him. He was so very unresponsive and frustrated with instructions. He couldn't understand "under" and he couldn't understand the concept of picking 2 puzzle pieces, rather than just one, when we asked. Things he would have known before his regression this summer. It ended in my tears because we feel like he refuses to respond to any of our help. He gets too overwhelmed and frustrated. We get to the point where we sit and wonder if we just have to watch him disintegrate right in front of our eyes and we can't stop it. Right when I get so discouraged I realize I have to be stronger than that and have more hope for him. That, for sure, is much more difficult than it sounds!!