New info!

Finally I have some news to update everyone! We got the results back from Zoey's Rett genetics test and it came back negative!! While I'm so happy that I don't have to worry about that particularly bad diagnosis we still don't know why Zoey has to have these nasty seizures. 

We had a friend who gave us information to see a new neurologist who ended up being Zoeys original doctor at primary's! We met with him this week and finally got a little more detail about what is going on with Zoey and where she is at. I'm happy to report that everything we have tried up to this point is exactly what we should have been doing. However, he was able to explain things to me that were a little more user friendly to understand. I showed him videos of my Zoeys seizures and he new exactly what kind they were. First time I have had a name to her seizures. Myoclonic. Then he was able to tell me right away that of course Zoeys doesn't have Rett syndrome, wish we could have that information before we spent so much money on genetics and travel, but nice to have yet another person validate she doesn't have it. 

The bad news we received was that Zoeys types of difficult seizures, being myoclonic and having been diagnosed with LGS, we were at a 3-5% chance of gaining total control of her seizures. Not what we wanted to hear. I wanted them to stop and see if we could get her to learn and grow without seizures interrupting things. We also had only a 20-30% of gaining some control with meds. So not great news, but we really don't have much choice so on we go. I was also able to understand more about the scary rash medicine that I have been putting off for months. Turns out once explained, yes it can be a problem, but not nearly as bad as what I was originally thinking. Back on meds my Zoey goes. Not too happy to have her back on the pharmaceuticals, but charlottes web (CBd oil) just isn't cutting it. It has helped in so many ways, helping her focus, being happy and playful, and finally learning things again, but not helping the seizures. Our plan is to continue doing CW until the new med is in full effect ,somewhere around July, then take her off. We will see if there is any difference in behavior and personality, if no we will be done with it. If however, we do think it helped we will switch to Hayley's hope. Another form of CBD oil. If we have luck with this medicine then yay! If not, we will hopefully have more leverage to get my insurance to cover some of these other meds. For now I am feeling like we are back into action. It's been an awful few months watching her scream in pain 3-4 times a day suffering with her seizures and if I can give her even a few days break from them I will take it! Keep Zoey in your thoughts and prayers, and we will keep fighting for our baby girl ;)

Touchy subject

It has been a really long time since I have updated! December is always busy and with both my kids birthdays squished in there too, it makes it all the more rushed! We had a great Christmas and as always children and the earth gave us a fantastic Christmas for the kids! Warm clothes and shoes, toys and candy too! What giving people we have in this beautiful state! 

After such fun holidays some topics started to show up in the news that have had me really upset. Let me emphasis that I know not everyone will agree with me. I'm okay with that! However I do want people to get all of the facts before making an opinion on medical marijuana. As most of you know Zoey's story I will just quickly review. Zoey had infantile spasms at 5 months old. After pumping some crazy meds into her (prednisilone, vigabatrin, and ACTH) we finally got that under control. As awful as those meds are, they did their job and I'm grateful for it. All though not the 75,000$ price tag on 1 vial of ACTH. Let me tell you we used more than 1 vial! 

So next her seizure episodes start. No one knows what kind they are and/or what Zoey's new diagnosis is. After so many testing we still don't know. So we treat it as generalized seizures and start her on pharmaceutical seizure meds. After over a year of trying so many meds we were winding down on options. The last 2 I was given, one would cost me 500$ a month. That was with insurance. And because I had insurance I couldn't get the financial aid available. Or option 2 take this med, if she gets a rash she will die from it. Wow amazing options right? Let me also mention here that every single pharmaceutical med she has been on has had crazy side effects with it. Look up any seizure meds and most have a long list, some quite serious! Zoey walked around like a grumpy zombie. Couldn't sleep but tired all of the time. Personality was there but dim. She wasn't progressing in her learning. She wouldn't focus on people or activities she was doing.

So we as Zoey's parents did what we always do, we started looking at any other options. Things like diet changes, or surgery. Surgery wasn't an option for Zoey because her seizures occur all over. Diet wasn't working so well either. We started looking in on charlottes web. This is cbd oil. Cannabid oil from marijuana with hardly any thc( the hallucigenic part of marijuana). It is already LEGAL in Utah. Our neurologist has done paperwork to fill out and we must get a certificate and also the lab work telling all about the specific bottle of charlottes web we have. If I could show a before/after video of Zoey! All of her therapists have said how well she is focusing, learning, and how her little personality really started to come out! No it hasn't stopped her seizures. Neither did any of the pharmaceuticals she took. Only now she is enjoying her life more which means we are happier to see her happy.

Next part I want to talk about is the part that scares everyone. THC. A news article just came out saying that there were studies showing cbd oil doesn't work and causes damage to the brain. She is already having damage to her brain from the relentless seizures that I cannot stop! Also they never actually showed the study! I have found quite a few studies online showing how cbd oil has helped! 50%of seizure kids who took it saw improvement! 25% of those kids stopped having seizures all together! This is cannabis oil with different levels of thc in it. Not charlottes web. So that really makes me wonder... If I have already seen such improvements in Zoey now could this be the thing to stop all these seizures? Maybe maybe not but I sure would like to give it a chance to work! Now I'm not saying that I want full legalization, but I don't understand why someone wouldn't want to give these kids a chance. If you have never seen someone you love go though it, you wouldn't understand. Get to know us. See what we go through every day. Have you ever checked on your kid at night and thought I really hope they live through the night? I do. Every night I check on her before I go to bed and I make sure she is still breathing. I make sure that I have made her room as safe as possible, and hoping that her mattress doesn't smother her if she happens to have a seizure during the night. I'm so grateful at 6a.m. When I hear her chattering on the monitor because I know we made it through another night. I understand the fear of having another gateway drug that can lead to worse things. I understand that people will abuse even medicinal marijuana. But why can we have tobacco and alcohol which are also gateway drugs to be so easy to access and have very few if any health benefits. Ask me questions before you create an opinion that will affect my family. At least look into it and get both sides of the story before making a decision. If you want the studies I found? Ask and I will show you! 

The waiting game

Okay time for the update! We made the decision to tak Zoey off all meds about a month ago. We made this choice because our doctor is still not convinced she is having seizures, and we have tried so many meds and the ones that were left to try either cost a fortune or else had side effects along the lines of ," if you get a rash it will kill you" type things... So off she has come. Most days she has the same, but other times I worry her seizures are worse or at least more frequent. Not enough of a difference to make me put her back on the meds! 

We are still at a loss for what Zoey actually has. After feeling frustrated I posted on a Facebook page a video of my zoeys episodes and had many moms comment that what she was doing was extremely similar to their daughters situation. Their daughters all have Rett syndrome. Now technically we already went down this path a year ago. The doctor had mentioned she thought it might be Rett syndrome and so after many tears and a genetic test we waited for results. It can back positive.... Then negative! So let me explain why that was. They did I test that looked at all of zoeys dna to try and find something wrong. At first the section that causes Rett syndrome looked off. That was where the positive came from. They then looked more closely at that strand and said it looked normal so that was the negative. So we let that be our answer. Now I'm a little frustrated because I feel like we should have said that because we got 2 opposite answers we should look a little closer! At the time I was just relieved that we didn't have retts so we moved on. 

Coming back to our time now, we are waiting in a year long line to do a more detailed test of both Rett syndrome and Angelman syndrome. We believe she will be negative for Angelman, but there are similarities I'd like to have checked anyway. Rett syndrome she does fit into by looking at symptoms. However, she doesn't have them all. If you don't know what Rett syndrome is I suggest you look it up because as much as I want the word out on what Zoey goes through its a pretty hard diagnosis to get and i have done enough crying! Now I just want my answers! 

Our next step is to wait for the genetics people to meet with us. This will take a waiting period of about a year. Trying to figure a way to get in quicker, but it's rough! So while we wait we will be working on getting a hemp card and ordering charlottes web. Hopefully in the next week or so? It will still be expensive but at least it is a different option than what any of the horrible medications did to her. Very excited to see if it will be of help to her! Still waiting on getting an occupational therapist on board with us, but that too should be coming soon. 

Last but not least, Zoey was accepted to a preschool here in town and will start in January! Twice a week, for 2 hours I not sure how that will go down for me or her, but I think it will be a good thing for both of us! 

3day EEG

This month has been such a crazy one! I finally met up with the neurologist again and we made a plan for Zoey and what are next steps would be. She gave me a list of meds that we can try since the last one isn't working...again! After finding out that my insurance wouldn't cover any of the meds, I tried to track down some type of pharmacy card. I did find some that said I would only pay 25$ a month I thought I was finally on a good path! Of course those sneaky cards tricked me. Reminding me once again things aren't always what they seem. He they would pay... Only 50$. When meds cost 500$ 50 isn't going to cut it. I hate that I can't give my daughter a potential successful medication just because of my insurance.    2 of 3 meds were that way and I had tried the third option already we were back to square one. 

Our next item on our plan was to get Zoey a 3 day EEG. We were hoping to get some answers about if Zoey still suffered with infantile spasms or  not. We also wanted to know if her seizures were happening all over like we thought they were or if they were focalized in one spot. And also what type of seizures she was having (tonic,clinic, or mixture). After 3 days of fighting and lack of sleep we took those wires off and waited for results... Or lack there of... Even though Zoey had probably 50-70 seizures in those 3 days the EEG didn't catch any of them. She showed a type of brainwave that only kids with epilepsy have in between the seizures but didn't catch the actual seizure. So what do we know? Not much more. The only answer we received from doing the EEG was that she doesn't have infantile spasms which is great but I was hoping for more information. 

After that disappointing information I dug around and found a video of a little boy that looks a lot like Zoeys type of seizures called myoclonic seizures. I sent that info to the neurologist and she says that if Zoey looks like that, then she must have myoclonic seizures. As much as I love doctors and do believe they do a lot of good, this would be the 2nd time me or my family has diagnosed my daughter with a huge diagnosis. So what to do now? I have no idea! I cannot afford medications that could help my daughter and am on a list waiting for a trial of cannabis oil. I don't know what else to try for her medication... Anyone else know how to get proper medicinal cannabis oil legally to Utah???  In the mean time Zoey still has seizures!! As you can tell I'm kind of a confused and mad mess. I'm hopeful to get her into an occupational therapist finally and see if we can help her with her sensory issues(biting herself, rocking) and we also think she may have motor stereotype which she may or may not grow out of, but doesn't really affect her too bad. When she gets happy,excited or frustrated she flaps her hands in the air and makes a panting noise. Again isn't a problem, but explains some of the things she does:) through all of this torture, she remains a happy and excited girl! Loves people and also to tell you "no".  She is happiest when you sing songs and dance with her! 

Finally, I wanted to send out a huge thank you to those who helped us out with donations, items, and support for the children and the earth fundraiser! We did great and I wanted to let you know what we are doing with those items. We are on a list to receive a special watch that Zoey will wear and it will send messages to us when she is having a seizure. Most of the time I am close enough that I know when she is having one or not, but night times make me nervous. She doesn't make noise and they don't last long that I would hate for her to have a big one and I wouldn't know about it. Also with the amount of testing she has done we have quite the big medical bill up at primary's and the rest will all be going to that! I just wanted to tell you all I know how hard it is to give up money because we can always use it elsewhere, but I really do appreciate it and will be grateful for the kindness of family and friends for the rest of our lives. We have been so lucky to be part of children and the earth, they do such great things for kids who don't normally get to do them. Thank you!!

Ride the brainwave!

So we are at that time of year when we hope to get everyone to save the date! June 13 will be here soon and we would love you all to come and support my little Zoey bug! For those who haven't read the whole blog, Zoey was diagnosed with infantile spasms at 5 months old. The cause of her spasms is unknown. This disease is a harsh one! It is deteriorating the brain with every spasm. She was having spasms in clusters. Back to back to back for 15-20 minutes. Sometimes 4-5 times a day. Most kids get misdiagnosed. Zoey was one of those kids. If I had not done the research and show videos of my daughters spasms, and really push to get answers, I don't know if Zoey ever would have gotten a diagnosis. 

Most kids diagnosed don't get to learn how to sit up, crawl, or walk. Zoey has been lucky to have accomplished this. She is seeing 3 types of therapists all trying to get her caught up to her age group. This is through the state right now, but as soon as she turns 3. We will be on our own. We have been lucky with Zoey and haven't had her to be hospitalized this year, but even with all the other costs of MRIs, EEGs, doctor visits, medicines, and bloodwork

that has to be done, we are spending up into the ten thousands in 1 year. We are doing okay don't get me wrong, but it's a lot to take. What we are mostly trying to do is to get the word out!!! We went to many doctors who hadn't even heard of infantile spasms!!! That is why it gets misdiagnosed all the time. The best thing for a child with infantile spasms is to get diagnosed early and get the spasms to stop. We need this to get out for all to know and understand what it looks like and how it is diagnosed! The funds we earn will go half to medical expenses and half to the neurology foundation for more research to be done on this crappy condition. 

Join us for a 5k run/walk. Seriously walking is going to happen.. We have kids with all types of disabilities joining in. It's all about the kids! There is also a motorcycle ride that you can do!! For any of these activities make sure you go to www.childrenandtheearth.com register and sign up under team Zoey!!!! You will never meet such an amazing little girl who has a way of touching your soul and yet she can't speak. Spend the rest of your June 13 day having fun with concerts, train rides, food, tons of games for kids and adults! It is a day that you can enjoy as a family and doing something so beneficial as well. Service that would mean so much to my family and yet you and yours get to have a fun time as well. If you can't make it but would like to donate, go to children and the earth website and donate. Make sure to put in the comments that it is for team Zoey! Of course we would love to see you at the race. We will be there. Zoey my little 2 year old princess will be there. Now come join us!!!!!

Holiday fun time

Did not realize it had been so long since I updated! That is a good thing, means I do t have much to write about. Zoey has been changing meds about every 6 weeks or so, but now we are hopeful that topamax is her med! She still has a few break through small, almost unnoticeable ,seizures. That is huge for her! She was having the small ones before, but they were in clusters. Now she may have 1, but it's by itself. Topamax has also seemed to have stopped whatever else was making her have seizures every morning between 4-6 a.m. Hopefully this means we are finally headed in the right direction for her meds.

 The holidays were really nice! We moved into our new home, and were able to have thanksgiving and christmas at our house to enjoy it. This kids had a blast playing and finding out where buddy the elf had moved everyday. Both joe joe and Zoey celebrated birthdays in December as well, making it a busy busy month. Joseph had a transformer party, Zoey had a ladybug party. Both parties we were able to have nanny come all the way from England to join in on the parties!

I don't want to sound all negative in my posts. That isn't my intention, but I also know that there are parents out there who are just starting the journey of dealing with infantile spasms and I want them to know that others struggle with the same emotions. Zoey has been doing extremely well. She loves to run and climb and even recently started saying "Dixie". Dixie is my mom and dad's dog, sooo not sure why she learned that one, but we will take it! That puts her total vocabulary words to 3.  She is learning facial expressions and is getting some attitude. She knows what NO means and doesn't like be told it. It's very cute and hard to keep a straight face when she gets all mad. She will also give kisses, but must be in a good mood and most importantly WANT to give kisses or again she will just get mad at you. These are all good positive signs for her growth and development. When it's just me and her I love it! I don't think about anything else except she is happy and cheeky. 

 The outside world likes to take that away. I seem to think that everyone else must see that for a 2 year old, she just isn't developed enough. I find myself having to explain to people what she has been through and make them understand why. I don't need to do that. Most of the time I don't believe people even think about it. It's just me. Don't get me wrong I am proud of what she has already accomplished. She is a little miracle. The odds of her having this type of a life of walking and running isn't common. Like only 10% chance. However, I also see how cruel people can be. People who don't know and don't understand. They make a comment that is devastating to the parent and the child. Ignorance... I don't look forward to having those kinds of encounters. I'm not a confrontational person, but don't poke mama bear!

 Now that that is out there, I can resume the positivity! I have a 4 year old and a 2 year old! Cannot believe it... Also my crazy birthday/christmas month is done which means I can relax for a bit. Remember no news is good news!

Genetic testing

I haven't mentioned this because we didn't have official results. Now that we do I thought I'd share!  We did a bunch of genetic testing to see if we could have a reason for zoeys infantile spasms/epilepsy. We got the news that she may have a disease called Rhett syndrome. Not a disease that we wanted to deal with. Basically she would regress. No hand movements, no walking, no speaking.  It was devastating. We then ordered more genetic  testing to see how bad it could be. 

Sometimes you can miss part of your DNA and it won't affect you. So we did a lot of family time, praying, fasting and a lot of talking. What we had was a miracle. We recieved an email today from the doctor telling us that the first test was a false positive. She is not missing any part of any gene. No Rhett syndrome. While it is annoying not to have a reason why Zoey had infantile spasms, we are glad to not have a genetic disorder that could impact future kids either.  What a relief!  Zoey has come so far this last year, and is a beautiful happy child. To think she might have lost that was devastating. I know life is still going to be hard for her. It will still be hard for us, but I'm happy. We are happy!  

This family needed some good news!