Update on Brodie's Epilepsy

Brodie had his 6 month post-op check yesterday. It's more like 7 (well, it will be next week!)

The Neurologist and the Neuropsychologist are very happy with his progress and the fact that he is still seizure free. In fact it has now been 8 months since Brodie's last seizure!

Unless anything changes with Brodie (ie: he has a seizure) they don't need to see him until August, the 12 month mark!

Brodie's Post Op Follow Up

It's been three months since Brodie had his brain surgery. Today we head into the city to the Austin Hospital to start a three day series of visits as part of his post-op follow up.

Today there's an MRI scan to be done. For the life of me I cannot work out why he has to have it done on a Sunday but that's when he was booked in.

Tomorrow there is a visit with the Neurosurgeon and then the Neurologist. On Tuesday Brodie has a visual perception test done to see if his vision has been affected by the surgery. After that we see the Neuropsychologist.

So far Brodie is still seizure free, which is amazing considering they did tinker with his brain. It's been just over four months since his last seizure and three months since his surgery. Brodie's pretty chuffed about this because it means, provided his vision test is fine, that he will be able to get his learners permit back from Vic Roads. I too am very happy with how things are going in regards to his epilepsy. I am not too sure about him getting his learners permit back though. I don't know if I am ready for him to be back behind the drivers wheel (o_O)

Brodie's Post Op Check Up

 I took Brodie to the Austin Hospital yesterday for his first Post Op check up. I thought we only had two appointments but we actually had three.

Brodie saw the Neurosurgeon, Neuropsychologist and his Neurologist.

All three were very happy with his healing progress. He was given the all clear to begin his regular activities again, such as walking, going back to church and seeing his personal trainer. Even though he is allowed to start going back to 'normal' he will need to be careful to not overdo things.

I'm not sure that Brodie realises that he will still get tired and that things may still overwhelm him. He is still hypersensitive to some sounds and light but it is slowly improving.

We wont need to go back to the Austin until November. We will need to stay there for three days in order for Brodie to have several tests repeated (the same ones he had prior to surgery) such as an MRI, visual perception test and I think there is another one that I can't think of right now. While we are there he will also see his neurologist and the neuropsychologist.

All that matters is that Brodie is healing and he is still seizure free! He hasn't had a seizure since early July. It's been five and a half weeks since his surgery.

Brodies Surgery - Right Frontal Lobectomy

Brodie had his surgery yesterday.

Poor kid isn't doing  so well. 

Sadly I am on my phone sharing this and cannot see the screen properly. 

I will share more another time. 

Off To The Austin Hospital

I probably wont be posting much at all this week. Brodie and I leave for the Austin Hospital in about an hour. He has his BIG surgery on Thursday. The neurosurgeons will be removing his right frontal lobe.

Brodz has a few scans and tests that need to be completed before Thursday. So we are staying in the city.

As I am only taking my phone with me I may be unable to do any blog posts. In uninstalled Blogger a while back as I was having problems with it.

Wish us luck!

An Update on Brodie's Epilepsy Study

Poor Brodie, he's been in hospital now for 9 days now and they still haven't been able to get all the information they want about his epilepsy.

He is so distressed most afternoons and is desperate to come home. In fact, sadly enough, he has wished he was dead. Of course when he told me that I phoned the hospital within a few minutes and spoke to someone on the nursing staff on his ward and told them exactly how he was feeling. They needed to know so that they could encourage him, soothe his nerves or whatever else they needed to do to help him.

I'm not too sure how they helped but Brodie has not said anything like that again & that was Saturday afternoon. The staff did unhook him from all the wires for a while and let him have a shower, something he hasn't been allowed to do since Monday morning before he was admitted. I know he felt a lot better after that.

He has all these wired glued to his scalp so that his brain waves can be recorded. He is on 24/7 video monitoring. When he has a seizure there is a box, you might be able to see it on the cupboard behind him with a black button, that needs to be pressed and that time stamps the video. There is also a yellow button on the wall, you can just see it behind all of those wires, it kind of looks like a light switch. You hit that button when a seizure starts as well. It alerts the nurses and within 5 second 4-5 staff members come running in to the room. 

This button is what's called a ceretec button. It's actually the name of the injection that will be given to Brodie BUT only if the seizure occurs during office hours. The reason it can only be done then is it's needed for a SPECT scan. Now the scan can only be done during 'office hours' as there is no staff available before 9 am or after 5 pm. 

The sad thing is Brodies seizures seem to occur any time from 1 am to 6 am. Far too early. The ceretec injection lasts only for 3 hours. You can see the problem now can't you? I am finding it very frustrating that there is no technician on call. You would think that with something as important as this, when you know that seizures are completely random, that there would be someone who can be called in to perform the scan. Seriously I can see how Brodie is as upset as he is.

Poor Brodie has 5 more days before he can come home. I know this may sound horrid, sad, shocking BUT I have been praying for Brodie to have a seizure during office hours. At least up until 4 pm because if it's too late they wont do the scan either AND they wont give the injections on the weekend because there is NO staff to run the scan.  

I feel like I am rambling on here. Brodie wanted this study done. Both Mark and I believed that he didn't need to do it but he insisted. I just hope that the doctors gather enough information. This is all in the hopes that surgery may be an option down the road.

I have to admit though, that we now know two parts of his brain is affected by the seizures. To be honest I cannot remember which ones but I believe that explains why he has two forms of epilepsy. Tonic clonic and temporal lobe. The doctors are not sure exactly where they start from or if one part starts and it jumps to another part of the brain and fires it up.

I just hope that all of this stress and frustration gives the results and information that is needed. My poor boy just wants to be home and I don't blame him!

Epilepsy Video Monitoring

Brodie went in to hospital on Sunday night. Well, to the Medi-hotel on Sunday and he was admitted yesterday for his two week video monitoring study.

They have lowered his epilepsy medication doses in the hopes that he will have seizures and they can inject him with a radio active dye to see which part of the brain the seizures are coming from. The poor thing has had two seizures today. One in the early hours of the morning and the other one this afternoon.

Brodie is very scared about having the seizures. To be honest I don't blame him. I would be concerned as well. That being said I know he is in the best place right now. The nurses will look after him and I am sure the neurologist will visit him again on the ward very soon.

I'll be joining him tomorrow for a couple of days. I just hope that I can hold it together when he has a seizure. I'm not all that good when they happen. I tend to cry a because it distresses me so much when I see them. He needs me to be there for him so I had better be strong.

Hi Ho Hi Ho It's Off To Hospital We Go

Don't panic it's not a bad thing. Well, it sort of is but it isn't. Ah that doesn't make sense does it? Let me explain ... Brodie has to have three scans done before he is admitted to hospital next week for a video monitoring study of his Epilepsy.

He's having an MRI, a SPECT scan and a PET scan. I'm not exactly sure what the last two are but they are all being done to check his brain. I guess they want a before and after look at his brain after the video monitoring is complete.

Next week when Brodie is admitted to hospital for the video monitoring they will be taking him off his epilepsy medication in the hopes of bringing on his seizures. He needs to have a support person with him 24/7. The support person will need to call the nurse if/when Brodie has a seizure and the nurse will inject him with a dye which will show which area of the brain is affected by his seizures.

This is all being done in the hope that surgery is an option in the future especially if the medication doesn't work as well as it should. Brodie is very keen to be rid of these seizures and wants the operation if he can. In his words "I want my life back!" plus he wants to be able to continue to learn to drive. Something he is not allowed to do because his seizures aren't controlled.

Sadly I am unable to be with him the whole time. Luckily we have volunteers and paid helpers (we need so use some of his DHS disability funding to help us out with that) but we only have the roster filled for the first week *sigh* I don't know what we will be doing for the second week. It's stressing me out big time.

So tonight, Brodz and I will drive the two hours from home to reach the hospital. He has his MRI around 6:45 pm. We shall be staying at the medi-hotel overnight then he has the remaining two scans tomorrow; one at 11 am and the other at 1 pm. Poor thing has to fast for 6 hours for the second scan. He's not very good at fasting. He will need to have breakfast early or he will miss out altogether.

Seriously though. As I mentioned all of this stuff is stressing me out. The neurologist has no idea how much stress he has caused our family with this video monitoring. It's so difficult to do this when you don't have family living in this state. My family, who I know would help out, live 800 kms away. I can't expect them to come over and stay with Brodie at the hospital when I can't. I feel like such a bad Mum being unable to stay with him the whole time but I am Mark's carer and I have to take Angus to an ENT specialist during the first week of Brodie's hospital stay. I need to be home for them as well.

I just want April to be over.

Sleep Deprived EEG

I've actually scheduled this post as I wont be home for most of the morning. I am taking Brodie into the Austin Hospital for a Sleep Deprived EEG. He wasn't too happy about having to stay awake all night. This kid really enjoys sleeping in nowadays. Something he was unable to do for such a long time. At least he has a friend who will be joining us and helping him stay awake.

Anyway, we have to leave before 7 am to hopefully get there for 8:30 am. The perks of living in the country. Just as well it's only meant to be about 1 hour and 20 minutes away. Although I have no idea what the traffic will be like. Thankfully we are going on Eastlink. Perhaps that might make things easier for us. It's a toll road so some research is required on how to pay and the cost. Since it's for Brodie he can pay (yep I am that mean) and he can pay for the parking too (yep still a mean Mum).

Let's hope that this EEG will show the neurologist what is going on in that complicated brain of Brodies. It would be nice to know why he keeps getting these facial spasms. The Neurologist said that it might be Temporal Lobe Epilepsy. It will be nice to know if that is what it actually is. Poor Brodz suffers a lot when he has them. 

Wish us luck with the test and the travel. Oh and finding parking!

Purple Day March 26th - Raising Epilepsy Awareness

snagged from Epilepsy Foundation on Facebook

I support purple day because Mark and Brodie have epilepsy. Thankfully their epilepsy is well under control. Neither of them have had a seizure in a very long time. It's such a relief and a blessing to know that they are okay and that the medication they are taking is doing it's job. 

If you wish to find out more about purple day you can check out their website HERE

They have some super cute plush animals for sale. I just love their teddy bear and elephant. Of course I totally LOVE the colour PURPLE! So anything purple is very appealing to me. If you get the chance go check their online store.

Random Photos

Just some random photos that I had taken with my phone. The helicopter is a medivac chopper. It was 'parked' at the hospital where I took Brodie for an MRI the other week.

This afternoon I take Brodz for an EEG. He thinks it's to see if he has a brain but truthfully his neurologist wants to find out what kind of epilepsy he has. I'll make sure I take some knitting or crochet once I actually decide what project I am actually going to make. I've been searching for days to find just the right project but no luck yet. Cross fingers that I find something soon.

Almost forgot. A quick update on my computer. It seems the graphics card has died. I have ordered a new one. All I need to do is wait for it to arrive. Thank goodness Mark gave me the netbook to use :)

Respite & Epilepsy Management Plan

I've never heard of an Epilepsy Management Plan before but apparently Brodie needs one or he cannot go on the next overnight camp. Funny thing is they let him attend the last one at Maffra without needing a plan.

When I mentioned that Brodie never had an action plan before not even for school the lady from respite questioned me. It kind of made me think that she doubted me. She said that when she was teaching that kids had them for school. So I mentioned that I was a teacher and in all the years that I worked in school we NEVER had a child with one. Although I don't recall having a kid in my class with epilepsy but that wasn't the point.

I am organising one but I have never heard of it before. I have heard of the asthma plan & one for kids with severe allergies but not one for anything else. Of course our GP happens to be on a bit of a break so we can't see him & they respite ppl want this done sooner rather than later. So I had to make an appointment for Brodie after school on Thursday to see another doctor in our clinic. Hopefully they will be able to fill out the plan without any problems.

I am no impressed with the respite mob. If it was there policy to have action/management plans for everything they should have made it extremely clear from the beginning when they accepted us into the ROADIES program. That way I wouldn't have been surprised when they asked for it now. All of this could've been solved ages ago.

Weaning Off

We were meant to be weaning Brodie off one of his medications these holidays, the tegretol to be more precise, as he has been seizure free for two years and two months. Well we wont be doing that now as he had a seizure this morning due to his missing last nights medication.

I've just come back from checking on him. He's feeling awfully sad and sore right now. Mark & I have encouraged him to go back to sleep but he's sort of crying at the moment so he might not.

My Poor Baby

The big fella didn't start the day too well. I woke up when I heard something tapping on the wall in the boys bedroom this morning at around 6:45 so I went to have a look to see what it was when I discovered the big fella having a seizure. All I could think to do was to wake Mark. He went in and stayed with the big fella until the seizure was over. My poor baby what a way to start the day. He is going to feel exhausted when he finally wakes up. Thank goodness he isn't going to school today because of that GCAMHS appointment or I would be worried that he would have a seizure at school.

I tried to go back to sleep for a little while but I gave it up as a bad joke. So I decided to get and check my emails and stuff. I've been thinking since the big fella had this seizure as to whether he has been taking his tegretol properly and I'm not too sure if he has. I'm going to phone his paediatrician this morning and mention that he's had another fit and let the Dr. decide whether we need to increase the dosage or not. I just hope that he doesn't follow the pattern of his previous seizures of having another one three hours after the first one.

Our Meeting With The Bishop

He was running a little late but that isn't anything new because he is a very busy man.

It started off with a prayer which of course would be the usual thing huh.

You can tell he's done this sort of thing before because he went straight into getting us to talk about ourselves. How we became members. What ward we were in. How long we stayed before becoming inactive. How we met, etc. We had a few good laughs. He is such a nice Bishop. You can really trust him.

Then we went into the nitty gritty kind of stuff .. The stuff you kind of dread *sigh*

He really went into Bishop mode ...and spoke about the Word of Wisdom and the chastity stuff. I'm not allowed to have any pizza!! Well I can but that would be naughty. This is one thing I'm going to struggle with.

He also asked us how strong our testimony is. I was honest, at least I think I was. I said that I have one but I don't think it is very strong. And I explained about the invitations I have received to other churches over the years and how I have turned the invites down because if I was going to church it was my church or it was NO church!

He also asked about our living arrangements etc and what were our future plans. Mark's plans .. Was to go to temple and to be married there. Bishop said he was behind us 110% where that was concerned because he wants us to be happy. So he asked what Mark needs to do to be divorced. I was best able to explain that one because I've been there done that. It really is too easy to divorce, especially after you've been separated for at least a year. However things may have changed a little with the new laws that the federal government have brought in.

Where was I? .. Oh yes my plan as I said to the Bishop was to get Mark divorced and keep him for myself. I explained that I had waited for so long to snag him I wasn't letting go!
He suggested that we get stuck into getting him divorced and then to have a temporal marriage before we even think about going to temple.

Then it came to the temple ... He went through the questions that you are asked to see. I told him I wasn't ready. Mark said the same thing. The Bishop agreed which of course I knew he would.

He gave us a few suggestions that would help us become temple ready.

We even went through our budget and he saw how tight it is for us. He said make sure your rent is paid and that you pay tithing and the rest if you run short of money we will be here to help you.

And we went through our budget with a fine tooth comb. He also wants us to make it more inclusive with things like medical (prescription expenses etc), car maintenance and I can't remember the rest. Mark knows what we need to add. Then Bishop would like a copy of the revised budget. That way he can help better.

We did discuss the fact that we don't want to have a continuous supply of help from the Church. That we would like help to set ourselves up as becoming more self-sufficient by growing our own vegetables etc. He said he will help with that also.

Oh and not to forget .. We spoke about the boys. The big fella mostly. He wanted to understand his medical conditions better. So we explained about the Aspergers, the ADHD and the epilepsy. To be honest I can't remember everything he said about the boys just that he has asked the others to be more tolerant of them because they are new to the ward.

Oh and he also suggested that we come and visit him again separately if we want to so that we can talk about the things that we need to confess basically. So that we have total repentance especially in preparation for going to temple. The Bishop also mentioned that there are classes we can go to before we get to temple so that we are better prepared etc.

I felt a bit bad when he asked me to do the closing prayer and I just couldn't. I'm not very good at them and I certainly don't like saying them out loud not even at home. I know that it is something that I have to work on. Especially since the boys are more willing to say prayers than I am .. the put me to shame.

This morning I was thinking about that blog entry I did when I felt so awful about being in Church and being such a hypocrite. I believe that my heart was just so full of sorrow that I was just begging to be asked for forgiveness. I think it was the beginning of being truly repentant. Now I just need the courage to talk with the Bishop about it.
I never realised just how much I wanted to go to temple. Even though I know I am no where near ready right now I believe that I can make it.

What a busy afternoon!!

Once we got our act together and got moving we were flat out all afternoon. The big fella had his paediatrician appointment this afternoon. Which we just managed to get there in time because we called into the supermarket first. I just had to get the new Harry Potter DVD, The Goblet of Fire, as it was finally released here today.

Anyway back to the big fella's appointment. The Doctor was running about 30 minutes late. He apologized for making us wait. We found out that the big fella now needs to take a 200 mg tablet of epilim instead of the 2 x 100 mg tablets. That will make it easier for him rather than the two tablets. Mark also asked that if the big fella does happen to have another seizure does he need to go to hospital or not (not his exact words but the meaning is the same) The answer is no we don't need to take him unless he really hurt himself but we do need to contact his paediatrician if he does have another one so that his medication can be adjusted. So it's all good really. He does need to have a blood test to check his liver function and for the levels of epilim in his system but that isn't for about another 6 weeks.

Since we were late getting into seeing the Dr. we were late in picking up the little dude. Of course I panicked (like I always do) I truly hate being late when it comes to collecting the boys from school or the bus stop. I was constantly checking the time on my watch thinking how upset he must be having to wait for me by the gate. In fact Mark said that it wont hurt him. So I thought about it for a bit. I think in all the time that they boys have been at school I think I have only been late to collect them 4 or 5 times. So one day wont hurt. I still don't like being late though. It's not like it was our fault though it is a 15-20 minute drive down the freeway from the clinic, which is near the hospital, to the primary school.

After we collected the little dude we had to go back into town to drop off the big fellas new prescription, go back to the town where the hospital is to go to Medicare to get some of my money back for the doctors visit. I wish he would bulk bill us having to find $73 per visit really puts a strain on our budget which is really tight as it is. ( I know what you are thinking Mark, you wanted me to ask him to bulk bill us but you know me I don't ask for help and I don't ask for things like that ~ I'm sorry I didn't, you were right). Then it was back to pick up the big fellas meds and off home.

I was totally pooped by the time we got home. Even though I didn't really feel like I did much. In fact I was pooped before we got home and Mark ended up driving the rest of the way for us. I'm so glad that he did.
I do know one thing though Mark seems to be extra concerned for me lately. I don't know why I feel the same as I usually do. Mark says I seem extra tense and on a shorter fuse than normal. I feel the same. I dunno. I know he is right though I do worry about EVERYTHING! I know I shouldn't but I do. I can't help it! I know my GP was worried yesterday about my blood pressure (it was 110/98 ~ not my worst BP reading in fact the top number was the best I had seen it in ages!!) so this extra worry I have wont help that but honestly how can you 'calm' yourself down and not stress about something?

I guess I shall have to work on reducing my stress levels. I'm not sure how I can do that but there has to be a way to do it. Oh how weird .. I just typed this and there was something on tv about a news item for tomorrow night's news that will be dealing with how to reduce your stress. I guess I had better watch it then.

I think I'll go make a nice cuppa. Perhaps a chamomile tea .. that's supposed to be soothing & calming isn't it??

Stress, Stress & MORE Stress!!

Things have been so hectic at home these last few days. We've ALL been under a great deal of emotional stress. Even more than the usual holiday stress.
Where do I begin .. .. ..

Let's see .. Sunday started off as a beautiful day. We got up early and prepared to go to church. Something I hadn't done for almost two years. I'm not sure exactly why I wanted to go again but I did. We all dressed in our Sunday best and headed off to Moe. Which is about a 30 minute drive from home. Mark & the boys looked so good dressed up in their shirts & ties. They looked really handsome.
The drive was a pleasant one. In fact I drove there this time. I'm beginning to feel more and more confident about driving Lily now. We arrived at church with a few minutes to spare.

We had such a hard time the night before trying to find out the time that sacrament started. We searched the LDS sites and had no luck trying to find the information we needed. We checked the phone books both the hard copy we had and online. I was about ready to give up but Mark hadn't. Anyway on Sunday morning it was Mark who was the one who said perhaps we should leave it for this week and we should go next week instead. This time I was the one who didn't want to give up and said No we'll go today. I just had this feeling that we should go.

Once at church we went in for sacrament. I can't believe that I actually enjoyed it this time. I did NOT find it boring which is how I normally feel at times while I'm there. After sacrament we spoke to some of the Brothers and the Bishop of our ward. He was really nice. I felt so welcomed that I knew we had made the right decision to go after all. We didn't stay for Sunday school or priesthood/relief society. I didn't feel up to it neither did Mark. Also the boys hadn't taken their meds and were bouncing off walls extra hyped up.

After we left church we had Maccas. Something I don't normally eat but since it was a special day for us to I decided I would put aside my feelings & beliefs about eating maccas and just go with the flow. All was good.

Our day went really well until just after dinner, around 7 p.m. I heard a bang in the computer room like something had fallen and went rushing in to find the big fella on the floor about to have a seizure. I panicked. I called for Mark. He came in and took over so I left the room. There really isn't a lot of room where we keep the computers. Next thing I know Mark says call an ambulance which I did. Now this isn't;t the first time that the big fella has had a fit. He had two while we were on holiday in Adelaide over Christmas & he spent the night in hospital there and had a CAT scan and an EEG before we left to come home to Victoria. It's been three months since this happened and I thought we had gotten over it .. the big fella was fine!!

I know I shouldn't have panicked but all I could think of was 'NOT again! Not my baby!!'

The big fella was taken straight to A&E (the emergency room) and I followed down in the car. We had no idea if he was coming home that night or not. He was alert and starting to be back to his old self about 3 hours after the fit. The nurse who was looking after him said to me that if he is fine after 4 hours he will most likely be able to go home. I said I don't think he will make that.
The Doctor had come in to see him at about 10 pm and had only just lest the cubicle when the big fella had another seizure. So she and 3 nurses plus another doctor rushed back in to help. I knew then that there was NO WAY he was coming home after that. He was admitted to the children's ward and I wanted to make sure he was all settled in before coming home. I finally got home at about 12:40 a.m. It certainly made for a long day.

The big fella stayed in for two nights. I am sure that he was driving the nursing staff crazy. He was back to his normal self by yesterday morning. All hyped up and raring to go! Thankfully he never had any more seizures but he has now got to take Epilim (medic8.com) an anti-convulsant.

I had never been so worried about the big fella like I had been over these past few days. I was beside myself half the time trying to be strong when all I wanted to do was cry. I felt a lot better after Mark managed to track down the phone number for the Bishop from church. Well he kind of got the number .. he phoned someone who contacted him and they organized for the big fella to have a blessing. Blessings are such a wonderful thing. I knew that after the big fella received a blessing yesterday he was going to be okay. That things would be manageable.

I still feel awful about how everything has happened. I still feel that somehow it is MY fault. That there must've been something I could've done to make things better or even prevented it. I feel like I should wrap him up in cotton wool to protect him. Oh I know that none of that will help. I know that worrying over it wont do me any good but what Mum doesn't worry about her children?? I'm just glad that he is okay for now and is at home with us.
I just hope & pray that things will improve for all of us because we sure do need a break from our run of bad luck.