Well, we had an appointment today. It was with ACETS, which is a communication device that Katha can use as her symptoms get worse. It will be a great help but this was just the first step in several. All of which we're hoping to complete by the end of June.
So, Katha has her medication and the pharmacist assured me that she has never heard of anyone being denied coverage after getting on the compassionate grounds program with any medication, not just this one. Which was great to hear that it's more than likely that we won't have to worry about this medication again.
We talked briefly to the doctor about trying medications with the Zavesca. However, because there has been no research done on how anything else will react with her current medication he doesn't feel that's a risk we should be willing to take. Considering how much he goes above and beyond for us, I was more than willing to take his advice on the subject. Also, he knows a lot more about it than I do.
Katha has show signs of regression again. She has started falling down a lot more again, her speech is slurred and she is having problems going to the bathroom on time. She has also had a couple more panic attacks.
We are hoping she is just having a bad few weeks and will bounce back better than ever. This probably isn't going to happen but it doesn't mean it's straight down hill from here either. She will have good days and bad days like she always has.
With any luck we will hear from the psychologist soon so that we can at least have some idea if we can do anything to help her with panic attacks. Simply because they are so draining on her and when she has them it's impossible to send her to school because they usually end with her getting physically ill.
With the other issues, unfortunately there is nothing the doctors can do but sit back and see what happens. We could put her on medications for the cataplexy (which is when she falls down because of an emotional outburst) but I have asked that we wait and see because it's not happening enough to put her on another medication.
Katha is continuing to draw back into herself like she always does when her speech slows down again. It's sometimes hard to remember that she won't include herself in anything unless you make a point to get her to participate. Even then, she doesn't often have the energy to participate long. I find she has the most energy right before bed and then ends up staying up later than she should.
Symptoms:
Enlarged Liver and Spleen: As far as I know this hasn't changed.
Ataxia (unsteady gait): Katha uses her walker now whenever we leave the house. Although, when out, if she finds something that excites her, she will run off, leaving her walker behind. When this happens it's kind of fun to watch other people's faces. I think that they think they just witnessed a miracle, ha ha ha.
Dysarthria (slurred speech): Katha has started speaking very quietly and slowly again. Because of this she doesn't like talking to very many people unless they are willing to take the time to listen to her. (If they can understand her at all).
Dysphagia (trouble swallowing): When drinking Katha will often choke briefly. However, this hasn't effected her eating at all.
Basal Ganglia (holding limbs at awkward positions): Katha sometimes does this. You can see it if you're looking for it but it is far from constant.
Dementia (memory loss): Katha still forgets things but is easily reminded. If she hasn't seen you fairly constantly, she won't remember you. So, don't take it personally, it's just part of the disease.
Seizures: Still seizure free!
Gelastic Cataplexy (falling down in response to a large emotional outburst): She has had a couple really bad falls, not always from this, but this doesn't help. However, it is not frequent enough that I feel she needs to be medicated for it.
Sleep related disorders: Katha loves to sleep, however, she has a tough time going to sleep and a rough time waking up.
Vertical Supranuclear Gaze Palsy (Trouble moving the eyes up and down): Katha has a difficult time looking up and I'm starting to wonder if when she does it can cause a panic attack. (Her last panic attack was after she had fallen down the stairs and then after recovering looked up to take her ski pants down and then started screaming "MOM! I'M FREAKING OUT!" Which scared me but made me giggle when I though about it later.
Friday, 17 January 2014
Saturday, 14 December 2013
Quick update on medication
So, today I heard from Standard Life. They are willing to cover Decembers medication on compassionate grounds. For January we have another $15,000 before we reach the limit, which should cover us for that month. Until then they have a representative working tirelessly trying to find other coverage through either the government or the drug company itself.
Also, there was a computer error and that is the reason they covered us so much above the limit they were supposed to cut us off at. They could, legally ask us to repay them the money they over spent on Katha's medication. Thankfully, both Evraz (the company Amory works for) and Standard Life have decided not to make us repay because of their error.
Honestly, this is a best case scenario. I didn't think I was going to get any other answer than you are being denied, good luck on finding other coverage. Hopefully the government approves us for coverage even though Niemann-Pick Disease is not a disease they cover so far.
Standard Life has informed us that sometimes the drug company as a compassionate use program as well. So, even if the government says no, we are not completely out of options.
I won't go through the symptoms again as they haven't changed in the last two days. Keep us in your prayers because they are definitely working!
Also, there was a computer error and that is the reason they covered us so much above the limit they were supposed to cut us off at. They could, legally ask us to repay them the money they over spent on Katha's medication. Thankfully, both Evraz (the company Amory works for) and Standard Life have decided not to make us repay because of their error.
Honestly, this is a best case scenario. I didn't think I was going to get any other answer than you are being denied, good luck on finding other coverage. Hopefully the government approves us for coverage even though Niemann-Pick Disease is not a disease they cover so far.
Standard Life has informed us that sometimes the drug company as a compassionate use program as well. So, even if the government says no, we are not completely out of options.
I won't go through the symptoms again as they haven't changed in the last two days. Keep us in your prayers because they are definitely working!
Thursday, 12 December 2013
December 12, 2013
So, it's been a while and a lot has happened. Let's start off with some good news because I like good news better than bad. Katha has been measured for both a wheelchair and walker of her own. We have already gotten the walker and she uses it at school. We took the walker she had at school and brought it home. We keep it in the car and because of the almost 3 feet of snow we have already gotten, she uses it a lot.
Onto the bad news. Standard Life has decided to discontinue covering Katha's medication. Actually, they have cut off all coverage for Katha. They have told us that we have reached the $30,000/3 years limit.
Since she has already been on the medication for a year it means she won't be covered for anything for 2 more years. Considering her life expectancy is 2 to 4 years, that leaves us with a serious problem.
We immediately contacted her doctor in Calgary and he has started the process of getting the government to cover at least part of the cost.
What this means for Katha is simply she would start going downhill quickly. She has already started to backslide slightly even still being on the medication.
Like I said, Katha now uses her walker a lot. She is having trouble being understood again, even by me. She is also exhausted almost all of the time. Doing little tasks has been very difficult for Katha lately and we only have about 30 days more of her medication.
The doctor seems to think we may be able to get some kind of answer from the government before we run out of medication because he has recommended that we don't lower her dosage until we find out if we will be able to get more.
The most confusing part about this is that Katha's medication is $10,000/month. Which means we hit the limit that the insurance company has said we reached within 3 months, but they paid for the medication for a year. Also, if you look back, we were never told about this limit until now. At the time of getting approved for coverage for the medication they told us that there is no limit on the coverage for this medication.
Even after getting denied I got in contact with the drug company who again conference called the insurance company with me and again they told us that there is no limits on the coverage for the medication and that we simply hadn't filled out the correct forms yet and then coverage should continue. After speaking with the drug company representative some more they informed us that it could be the company Amory works for that is telling the insurance company to deny the coverage.
The day before I was on the phone with the drug company Amory found out from his union representative that Evraz has to pay Standard Life back for all prescription coverage so they get to change which medications get covered with absolutely no notice to the employees. So, if something costs too much they can discontinue coverage and there is absolutely nothing we can do.
In the meantime I also found out that if we were to go through something like Alberta Blue Cross, they won't cover her medication, so that is pointless. However, there is a government program that will help us with things like nursing and child care for when Katha gets really bad or if she has an appointment we can still send the boys to school and they will send someone to look after the boys until I can get home.
Also, if we do get approved for government assistance with the medication but they will only cover 70% of the cost, this other program will help us with the other 30%.
We found out that the recommendation for an assessment for Katha's behaviour issues, her possible dyslexia and her exhaustion has been given to Aspire. The cost of this assessment is $1400 and because Katha has no medical coverage this is all out of pocket. So, I called Dr. Khan and he will try to get someone to come to the children's hospital to do the assessment so that the cost can be covered through Alberta Health Care. They didn't do this initially because the psychiatrist that usually does this is no longer at the children's so they didn't think it could be done this way. Hopefully they find a way to do this. If not, we will use some of the donations that people have already generously given us for Katha's medical expenses.
Onto the symptoms:
Enlarged Liver and Spleen: This hasn't been checked since my last blog, but we have no reason to believe that it's not different. That is the Liver is normal but the spleen is slightly enlarged.
Ataxia (unsteady gait): Like I said previously, Katha has started using a walker whenever she's not in the house. In fact, when going out she actually asks to use it. This is unlike her, she has always wanted to be very independent. However, if she doesn't use it in the snow we can almost guarantee she will fall down at some point. Also, she like to hit me in the back of the legs with the walker while we are shopping.
Dysarthria (slurred speech): Katha speech has become very slurred. She is very difficult to understand and sometimes I can't even understand her. Unless she has a lot of energy and they she becomes more articulate and will tell long stories.
Dysphagia (trouble swallowing): Katha has had a bad cold for about 2 weeks now. She has trouble coughing hard enough to get the phlegm out and it's really affected her sleep. However, both her brothers got the flu and she didn't. I was very impressed considering she's the one with the auto-immune deficiency. She still drools a little when not paying attention and will often choke on any fluids. But she can still get a 16 oz. steak down in under 15 minutes. So, she's not letting that get to her.
Basal Ganglia (holding limbs at awkward positions): Katha does this but not constantly.
Dementia (memory loss): Katha's concept of time is completely off. She will think something that happened weeks ago happened yesterday. For example, we took her cousin Emma to Dominik's birthday party in Alix 2 weeks ago and she asked last night when we were going to pick up Emma for Dom's party. She had completely forgotten all about it, until she was reminded and then it will come back to her.
Seizures: Katha still has not had a seizure and hopefully she won't because any mediation will no longer be covered.
Gelastic Cataplexy (falling down in response to a large emotional outburst): This still happens but it's a lot easier to handle with the walker because Katha can catch herself before she falls down completely. She has also started crying randomly for no reason. When asked why she is crying she honestly does not know.
Sleep related disorders: Katha sleeps a lot. She will take naps at school, then come home and just want to go to bed. Even on weekends she will get up to eat and if we go out to do something she will but she would prefer to stay in bed. We try to make her get up and get active as much as we can, though because otherwise she will lose the ability to get up and get going.
Vertical Supranuclear Gaze Palsy (Trouble moving the eyes up and down): Katha can still do this occasionally but it's extremely difficult for her to look up. Down doesn't seem to be as much of a problem.
Onto the bad news. Standard Life has decided to discontinue covering Katha's medication. Actually, they have cut off all coverage for Katha. They have told us that we have reached the $30,000/3 years limit.
Since she has already been on the medication for a year it means she won't be covered for anything for 2 more years. Considering her life expectancy is 2 to 4 years, that leaves us with a serious problem.
We immediately contacted her doctor in Calgary and he has started the process of getting the government to cover at least part of the cost.
What this means for Katha is simply she would start going downhill quickly. She has already started to backslide slightly even still being on the medication.
Like I said, Katha now uses her walker a lot. She is having trouble being understood again, even by me. She is also exhausted almost all of the time. Doing little tasks has been very difficult for Katha lately and we only have about 30 days more of her medication.
The doctor seems to think we may be able to get some kind of answer from the government before we run out of medication because he has recommended that we don't lower her dosage until we find out if we will be able to get more.
The most confusing part about this is that Katha's medication is $10,000/month. Which means we hit the limit that the insurance company has said we reached within 3 months, but they paid for the medication for a year. Also, if you look back, we were never told about this limit until now. At the time of getting approved for coverage for the medication they told us that there is no limit on the coverage for this medication.
Even after getting denied I got in contact with the drug company who again conference called the insurance company with me and again they told us that there is no limits on the coverage for the medication and that we simply hadn't filled out the correct forms yet and then coverage should continue. After speaking with the drug company representative some more they informed us that it could be the company Amory works for that is telling the insurance company to deny the coverage.
The day before I was on the phone with the drug company Amory found out from his union representative that Evraz has to pay Standard Life back for all prescription coverage so they get to change which medications get covered with absolutely no notice to the employees. So, if something costs too much they can discontinue coverage and there is absolutely nothing we can do.
In the meantime I also found out that if we were to go through something like Alberta Blue Cross, they won't cover her medication, so that is pointless. However, there is a government program that will help us with things like nursing and child care for when Katha gets really bad or if she has an appointment we can still send the boys to school and they will send someone to look after the boys until I can get home.
Also, if we do get approved for government assistance with the medication but they will only cover 70% of the cost, this other program will help us with the other 30%.
We found out that the recommendation for an assessment for Katha's behaviour issues, her possible dyslexia and her exhaustion has been given to Aspire. The cost of this assessment is $1400 and because Katha has no medical coverage this is all out of pocket. So, I called Dr. Khan and he will try to get someone to come to the children's hospital to do the assessment so that the cost can be covered through Alberta Health Care. They didn't do this initially because the psychiatrist that usually does this is no longer at the children's so they didn't think it could be done this way. Hopefully they find a way to do this. If not, we will use some of the donations that people have already generously given us for Katha's medical expenses.
Onto the symptoms:
Enlarged Liver and Spleen: This hasn't been checked since my last blog, but we have no reason to believe that it's not different. That is the Liver is normal but the spleen is slightly enlarged.
Ataxia (unsteady gait): Like I said previously, Katha has started using a walker whenever she's not in the house. In fact, when going out she actually asks to use it. This is unlike her, she has always wanted to be very independent. However, if she doesn't use it in the snow we can almost guarantee she will fall down at some point. Also, she like to hit me in the back of the legs with the walker while we are shopping.
Dysarthria (slurred speech): Katha speech has become very slurred. She is very difficult to understand and sometimes I can't even understand her. Unless she has a lot of energy and they she becomes more articulate and will tell long stories.
Dysphagia (trouble swallowing): Katha has had a bad cold for about 2 weeks now. She has trouble coughing hard enough to get the phlegm out and it's really affected her sleep. However, both her brothers got the flu and she didn't. I was very impressed considering she's the one with the auto-immune deficiency. She still drools a little when not paying attention and will often choke on any fluids. But she can still get a 16 oz. steak down in under 15 minutes. So, she's not letting that get to her.
Basal Ganglia (holding limbs at awkward positions): Katha does this but not constantly.
Dementia (memory loss): Katha's concept of time is completely off. She will think something that happened weeks ago happened yesterday. For example, we took her cousin Emma to Dominik's birthday party in Alix 2 weeks ago and she asked last night when we were going to pick up Emma for Dom's party. She had completely forgotten all about it, until she was reminded and then it will come back to her.
Seizures: Katha still has not had a seizure and hopefully she won't because any mediation will no longer be covered.
Gelastic Cataplexy (falling down in response to a large emotional outburst): This still happens but it's a lot easier to handle with the walker because Katha can catch herself before she falls down completely. She has also started crying randomly for no reason. When asked why she is crying she honestly does not know.
Sleep related disorders: Katha sleeps a lot. She will take naps at school, then come home and just want to go to bed. Even on weekends she will get up to eat and if we go out to do something she will but she would prefer to stay in bed. We try to make her get up and get active as much as we can, though because otherwise she will lose the ability to get up and get going.
Vertical Supranuclear Gaze Palsy (Trouble moving the eyes up and down): Katha can still do this occasionally but it's extremely difficult for her to look up. Down doesn't seem to be as much of a problem.
Thursday, 3 October 2013
Oct. 3, 2013
Today was another fun-filled doctor today. Although, to keep completely up to date, I should start at the beginning of the week. (It's been a long week!) On Monday Katha's teacher called in the middle of the day to let me know that they have been having issues with Katha's behaviour lately. Apparently she hasn't been listening, getting very frustrated and crying a lot. She also hit her EA.
If you have ever met Katha you will understand why I was shocked to learn this. I could probably count on one hand how many times she's hit her brothers and she has never hit anyone else. When I asked about it when Katha got home (after trying to lie about it) she finally admitted it by starting to cry and PROMISING never to do it again. I told her the next day she must apologize to her poor teacher and promise her never to do it again. She agreed and I was hoping that was that.
Long story short, it wasn't and we now have a system in place that will hopefully curb this behaviour quickly. It involves her teacher or EA giving her a rating on her behaviour that day and putting it in her agenda. Then I will reprimand her or reward her based on that rating.
At the doctor today we learned several things. He is going to refer Katha to the Children's Hospital Psychologist. This is because of a few things. First, the "panic attacks" at the pool. Second, I have suspected for a while that Katha might have dyslexia, so they will look into that more. Third, her drastic change in behaviour.
He also mentioned that just because she is doing so well on her medication it doesn't mean that it will improve the quantity of her expected life-span. He reminded me that when she went on the medication he advised that it wouldn't quantity but quality of life. In other words, the life expectancy he gave us as 3-5 years is down to 2-4. Yes, on October 24th it will have been a year since her diagnosis.
But, Katha continues to do well. Which we are thankful for everyday especially since realizing we've already gone through a year. The great part is that this disease is so unpredictable that we have every hope that Katha will prove all of the doctors wrong and far exceed their expectations.
Onto the symptoms:
Enlarged Liver and Spleen: Katha's liver is still normal sized. However, according to the last ultrasound her spleen has actually grown slightly which has led the doctor to believe that maybe the medication isn't doing as much for Katha as we had previously hoped.
Ataxia (unsteady gait): Katha has refused to use her walker at school lately (which has been part of the behaviour problems). She falls down approximately once every other day which is better than the several times a day it was.
Dysarthria (slurred speech): Katha is still difficult to understand, however, today at the doctor she was in a very talkative mood and I never had to translate for her once. She would even clarify her stories (when telling a story about her cousin Emma she would stop and explain who Emma was to her).
Dysphagia (trouble swallowing): Katha hasn't choked in a while. According to the doctor this is one of the things that the medication is supposed to specifically help with. It seems to be working.
Basal Ganglia (holding limbs at awkward positions): Katha still does this but it is very subtle most of the time. She also has a slight tremor but it has actually gotten better in the last few months. This mostly effects her with eating.
Dementia (memory loss): Katha will still forget what she is saying mid-sentence but generally she just laughs it off. I haven't noticed a drastic improvement in her memory but it's not getting worse either.
Seizures: Katha still has not had any seizures.
Gelastic Cataplexy (falling down in response to a large emotional outburst): This still happens when Katha is getting tired and being silly. They are very aware of it at school and are constantly on the lookout for it.
Sleep related disorders: Katha still has a hard time getting to sleep and generally wakes up in a panic. However, she does seem more energetic more often.
Vertical Supranuclear Gaze Palsy (Trouble moving the eyes up and down): She looked up today! It was really noticeable and very exciting.
So, yeah, I'll probably think of more later because there has been a lot lately. I'll try to include whatever I think of on the next update!
If you have ever met Katha you will understand why I was shocked to learn this. I could probably count on one hand how many times she's hit her brothers and she has never hit anyone else. When I asked about it when Katha got home (after trying to lie about it) she finally admitted it by starting to cry and PROMISING never to do it again. I told her the next day she must apologize to her poor teacher and promise her never to do it again. She agreed and I was hoping that was that.
Long story short, it wasn't and we now have a system in place that will hopefully curb this behaviour quickly. It involves her teacher or EA giving her a rating on her behaviour that day and putting it in her agenda. Then I will reprimand her or reward her based on that rating.
At the doctor today we learned several things. He is going to refer Katha to the Children's Hospital Psychologist. This is because of a few things. First, the "panic attacks" at the pool. Second, I have suspected for a while that Katha might have dyslexia, so they will look into that more. Third, her drastic change in behaviour.
He also mentioned that just because she is doing so well on her medication it doesn't mean that it will improve the quantity of her expected life-span. He reminded me that when she went on the medication he advised that it wouldn't quantity but quality of life. In other words, the life expectancy he gave us as 3-5 years is down to 2-4. Yes, on October 24th it will have been a year since her diagnosis.
But, Katha continues to do well. Which we are thankful for everyday especially since realizing we've already gone through a year. The great part is that this disease is so unpredictable that we have every hope that Katha will prove all of the doctors wrong and far exceed their expectations.
Onto the symptoms:
Enlarged Liver and Spleen: Katha's liver is still normal sized. However, according to the last ultrasound her spleen has actually grown slightly which has led the doctor to believe that maybe the medication isn't doing as much for Katha as we had previously hoped.
Ataxia (unsteady gait): Katha has refused to use her walker at school lately (which has been part of the behaviour problems). She falls down approximately once every other day which is better than the several times a day it was.
Dysarthria (slurred speech): Katha is still difficult to understand, however, today at the doctor she was in a very talkative mood and I never had to translate for her once. She would even clarify her stories (when telling a story about her cousin Emma she would stop and explain who Emma was to her).
Dysphagia (trouble swallowing): Katha hasn't choked in a while. According to the doctor this is one of the things that the medication is supposed to specifically help with. It seems to be working.
Basal Ganglia (holding limbs at awkward positions): Katha still does this but it is very subtle most of the time. She also has a slight tremor but it has actually gotten better in the last few months. This mostly effects her with eating.
Dementia (memory loss): Katha will still forget what she is saying mid-sentence but generally she just laughs it off. I haven't noticed a drastic improvement in her memory but it's not getting worse either.
Seizures: Katha still has not had any seizures.
Gelastic Cataplexy (falling down in response to a large emotional outburst): This still happens when Katha is getting tired and being silly. They are very aware of it at school and are constantly on the lookout for it.
Sleep related disorders: Katha still has a hard time getting to sleep and generally wakes up in a panic. However, she does seem more energetic more often.
Vertical Supranuclear Gaze Palsy (Trouble moving the eyes up and down): She looked up today! It was really noticeable and very exciting.
So, yeah, I'll probably think of more later because there has been a lot lately. I'll try to include whatever I think of on the next update!
Sunday, 1 September 2013
Sept. 1, 2013
So, in a couple days Katha starts Grade 2. We had a very busy and fun summer. Last Sunday we went swimming. While there, Katha had 4 episodes. I could only describe them as panic attacks. Now, these panic attacks aren't uncommon for Katha. However, these ones were completely unprovoked. It finally ended with her vomiting in the pool.
Honestly, they scared the crap out of me. Especially since she had spent 2 days begging going to the pool and by the time she went through the fourth episode she cried and asked to go home "where it's safe".
Monday morning I called both her metabolic specialist and her neurologist. The nurse from her metabolic specialist immediately told me that it was probably nothing and to keep monitoring her in case it happens again. The nurse at the neurologist told me she would speak with the neurologist on call (because Katha's neurologist has already left the hospital) and get back to me in a couple days.
In the meantime, the children's hospital called to ask if we could come on Tuesday for the swallowing assessment because there had been a cancellation and if we didn't take it, it would probably be another six months before we could get in.
So, by the time the neurologist nurse called me back I already knew I was spending Tuesday in Calgary. I heard from her first thing on Tuesday morning and the neurologist wanted to do another EEG to see if the panic attacks were caused by a seizure.
So, Tuesday we headed to Calgary to do the two tests. The swallowing assessment went really well. We found out that she tends to let food sit on the back of her tongue and that is why she tends to choke went drinking. There is not much we can do about that and will go back for another swallowing assessment when she starts to choke more.
Then we went over to the EEG. Now, because we didn't know that she was having an EEG until that morning she wasn't properly ready for the test. Usually they want her to sleep through the test and be very sleep deprived, which usually helps bring on a seizure. They couldn't get Katha to go to sleep during the test, but still got pretty good results considering everything.
Katha's brainwaves are slow, which is to be expected. However, her EEG looked exactly the same as it did a few months ago. So, while they cannot guarantee me that she didn't have a seizure, it doesn't look like she did.
Going forward they want me to video tape an episode when it happens again. But, it's been a week and it hasn't happened again. In fact, she has been acting perfectly normal, which makes me hope that it was an isolated incident.
Other than that Katha continues to improve as she has been doing all summer. While in Idaho and Montana she even started to jump into the pool all by herself. It was amazing and we are so blessed to see the old Katha starting to re-emerge. She hasn't been so "with-it" in years and we thank God everyday that we have been given the opportunity to make as many memories with her as we can. We know it won't last forever, but we are so grateful to have this amazing time with her while it lasts.
So, we will go onto the symptoms:
Enlarged liver and spleen: Still the same. Slightly enlarged but doing really well.
Ataxia (unsteady gait): Katha has been walking really straight (for her). Falling down isn't inevitable right now. Don't get me wrong, she still falls down but it has reduced a lot. Where she used to fall 4 or 5 times a day, now she only falls every other day. In fact, while we were in Idaho this summer at an amusement park we were waiting to use a handicap entrance and they tried to tell us it was for people who were actually handicapped. Amory kind of snapped at the guy that said it but the rest of us took it as a compliment on how well Katha is doing.
Dysarthria (slurred speech): I find that a lot of people are understanding Katha more and more. She still speaks really slowly (in fact one of my nieces was just asking my mom why Katha speaks so slowly) but the fact that almost everyone can get an idea of what Katha is trying to communicate is a huge accomplishment for her. I even find she is speaking louder. In fact, in the past few weeks I have said that she has two volumes whisper and ear drum shattering loud. But, the fact that I have to tell her to stop yelling is amazing.
Dysarthria (slurred speech): As I mentioned above, she had her swallowing assessment. She is doing well and hopefully that trend will continue .
Basal Ganglia (holding limbs at awkward positions): I notice this every once in a while where a few months ago it was almost constant.
Dementia (memory loss): We still battle with this and I'm sure we always will but we like to laugh at it. (What else are you suppose to do with an 8 year old who forgets what she is trying to say in the middle of saying it?!) Katha's sense of humour has been an amazing blessing to help cope with everything.
Seizures: We will continue monitoring for more panic attacks but hopefully there are still no seizures in sight.
Gelastic Cataplexy (falling down in response to a large emotional outburst): This still happens quite a bit but she still catches herself most of the time.
Sleep related disorders: Katha still has trouble getting to sleep a lot and gets up early. On days that it's really bad she tends to have a pretty bad day that day. The start of school will be interesting.
Sensitivity to touch: This has all but disappeared. I have not noticed any sign of this symptom in a while. In fact, I will probably take it off the list until it starts reappearing.
Vertical Supranuclear Gaze Palsy (Trouble moving the eyes up and down): While this is still hard for Katha to do it is happening more and more. In fact, at the neurologist she was mentioning that she blinks before looking up. Which is apparently a coping mechanism for this particular symptom. I found that interesting at least.
Honestly, they scared the crap out of me. Especially since she had spent 2 days begging going to the pool and by the time she went through the fourth episode she cried and asked to go home "where it's safe".
Monday morning I called both her metabolic specialist and her neurologist. The nurse from her metabolic specialist immediately told me that it was probably nothing and to keep monitoring her in case it happens again. The nurse at the neurologist told me she would speak with the neurologist on call (because Katha's neurologist has already left the hospital) and get back to me in a couple days.
In the meantime, the children's hospital called to ask if we could come on Tuesday for the swallowing assessment because there had been a cancellation and if we didn't take it, it would probably be another six months before we could get in.
So, by the time the neurologist nurse called me back I already knew I was spending Tuesday in Calgary. I heard from her first thing on Tuesday morning and the neurologist wanted to do another EEG to see if the panic attacks were caused by a seizure.
So, Tuesday we headed to Calgary to do the two tests. The swallowing assessment went really well. We found out that she tends to let food sit on the back of her tongue and that is why she tends to choke went drinking. There is not much we can do about that and will go back for another swallowing assessment when she starts to choke more.
Then we went over to the EEG. Now, because we didn't know that she was having an EEG until that morning she wasn't properly ready for the test. Usually they want her to sleep through the test and be very sleep deprived, which usually helps bring on a seizure. They couldn't get Katha to go to sleep during the test, but still got pretty good results considering everything.
Katha's brainwaves are slow, which is to be expected. However, her EEG looked exactly the same as it did a few months ago. So, while they cannot guarantee me that she didn't have a seizure, it doesn't look like she did.
Going forward they want me to video tape an episode when it happens again. But, it's been a week and it hasn't happened again. In fact, she has been acting perfectly normal, which makes me hope that it was an isolated incident.
Other than that Katha continues to improve as she has been doing all summer. While in Idaho and Montana she even started to jump into the pool all by herself. It was amazing and we are so blessed to see the old Katha starting to re-emerge. She hasn't been so "with-it" in years and we thank God everyday that we have been given the opportunity to make as many memories with her as we can. We know it won't last forever, but we are so grateful to have this amazing time with her while it lasts.
So, we will go onto the symptoms:
Enlarged liver and spleen: Still the same. Slightly enlarged but doing really well.
Ataxia (unsteady gait): Katha has been walking really straight (for her). Falling down isn't inevitable right now. Don't get me wrong, she still falls down but it has reduced a lot. Where she used to fall 4 or 5 times a day, now she only falls every other day. In fact, while we were in Idaho this summer at an amusement park we were waiting to use a handicap entrance and they tried to tell us it was for people who were actually handicapped. Amory kind of snapped at the guy that said it but the rest of us took it as a compliment on how well Katha is doing.
Dysarthria (slurred speech): I find that a lot of people are understanding Katha more and more. She still speaks really slowly (in fact one of my nieces was just asking my mom why Katha speaks so slowly) but the fact that almost everyone can get an idea of what Katha is trying to communicate is a huge accomplishment for her. I even find she is speaking louder. In fact, in the past few weeks I have said that she has two volumes whisper and ear drum shattering loud. But, the fact that I have to tell her to stop yelling is amazing.
Dysarthria (slurred speech): As I mentioned above, she had her swallowing assessment. She is doing well and hopefully that trend will continue .
Basal Ganglia (holding limbs at awkward positions): I notice this every once in a while where a few months ago it was almost constant.
Dementia (memory loss): We still battle with this and I'm sure we always will but we like to laugh at it. (What else are you suppose to do with an 8 year old who forgets what she is trying to say in the middle of saying it?!) Katha's sense of humour has been an amazing blessing to help cope with everything.
Seizures: We will continue monitoring for more panic attacks but hopefully there are still no seizures in sight.
Gelastic Cataplexy (falling down in response to a large emotional outburst): This still happens quite a bit but she still catches herself most of the time.
Sleep related disorders: Katha still has trouble getting to sleep a lot and gets up early. On days that it's really bad she tends to have a pretty bad day that day. The start of school will be interesting.
Sensitivity to touch: This has all but disappeared. I have not noticed any sign of this symptom in a while. In fact, I will probably take it off the list until it starts reappearing.
Vertical Supranuclear Gaze Palsy (Trouble moving the eyes up and down): While this is still hard for Katha to do it is happening more and more. In fact, at the neurologist she was mentioning that she blinks before looking up. Which is apparently a coping mechanism for this particular symptom. I found that interesting at least.
Sunday, 21 July 2013
July 21, 2013
So, we've had a couple of appointments in the last couple weeks. The first one was not fun. It was the appointment with the ophthalmologist. It would have been no big deal, but they had to lean Katha's head back to put drops in her eyes to get them to dilate.
For those of you who don't know, Katha can't look up. For some reason tilting her head back causes her to go into a panic attack. So, at first the nurse and I tried leaning her chair back and that didn't work. So, then we tried laying her on the floor but she didn't like that either. Finally we laid her down on the chairs with her head in my lap.
We ended up holding her down while she kicked and screamed and had a look of sheer terror on her face. All the while she was screaming "I want my mommy" while I'm trying to hold her down.
After we had finally got some drops into her eyes we were told to go back out into the waiting room to wait for the drops to take effect. While we were waiting I realised that Katha had bit into her lip so hard that she was actually bleeding. Once I realised this I broke down in the middle of the waiting room. Luckily, they were having a pre Stampede parade parade for the kids at the hospital and it was going by the windows in the waiting room. Everyone was so pre-occupied with that that I was able to have myself a little cry while everyone was watching the parade.
Once we got all that done the doctor told me that Katha's eyesight has gotten slightly worse but nothing bad. Also, there is some damage done to her ocular nerve which is the reason her eye movements are so slow. She also said there is nothing they can do for that. However, they want to see her again in October when the school can voice their concerns for Katha's eyesight as well. The doctor also recommended we get an I-Pad so we can enlarge it or put it up to where Katha can see it for school.
The other appointment we had was a physio assessment. That went really well because it was basically an adult playing with Katha. She loved it. They let me know to keep her active as much as possible, gave me a few exercises that we can do with her and told me that she is very good at knowing her own limits, but don't be afraid to push her a little. They also probably won't be able to get her into their regular cycle until after school starts.
Other than that we have just been enjoying summer. We had a trip out to Manitoba to see Amory's dad, Don and we will be going to Montana next month. We are very excited for that trip!
Onto the symptoms:
Enlarged liver and spleen: Still the same, liver is good, spleen is slightly enlarged.
Ataxia (unsteady gait): Katha is running more, which is nice to see. She doesn't fall down too much but is still has a very heavy walk.
Dysarthria (slurred speech): I find most of the time people need me to help them understand Katha. Even with myself I get one or two words and can figure out from there what she is trying to say.
Dysphagia (trouble swallowing): Katha is choking more on water and other liquids. We should hopefully be hearing from Occupational therapy in the next few months so that we can get a swallowing assessment done.
Basal Ganglia (holding limbs at awkward positions): I haven't noticed a lot of this lately, although she has started turning in her feet almost all of the time.
Dementia (memory loss): I find Katha forgets things fairly quickly now. When we go out to a restaurant and she has to go to the bathroom, by the time we get out of the bathroom she will have completely forgotten where we were sitting. She also forgets people she's only met once or twice or hasn't seen in a long time pretty quickly as well.
Seizures: Katha still has not had any seizures.
Gelastic Cataplexy (falling down in response to a large emotional outburst): We are always looking out for this. It still happens mostly when she is tired.
Sleep related disorders: She still has a hard time going to sleep. Although, she tends to be able to wake up not to badly.
Sensitivity to touch: I haven't noticed any signs of her being sensitive to touch in the last few weeks.
Vertical Supranuclear Gaze Palsy (Trouble moving the eyes up and down): Some days are better and some days are worse. However, even on her good days she can't look up as high as someone normally would.
For those of you who don't know, Katha can't look up. For some reason tilting her head back causes her to go into a panic attack. So, at first the nurse and I tried leaning her chair back and that didn't work. So, then we tried laying her on the floor but she didn't like that either. Finally we laid her down on the chairs with her head in my lap.
We ended up holding her down while she kicked and screamed and had a look of sheer terror on her face. All the while she was screaming "I want my mommy" while I'm trying to hold her down.
After we had finally got some drops into her eyes we were told to go back out into the waiting room to wait for the drops to take effect. While we were waiting I realised that Katha had bit into her lip so hard that she was actually bleeding. Once I realised this I broke down in the middle of the waiting room. Luckily, they were having a pre Stampede parade parade for the kids at the hospital and it was going by the windows in the waiting room. Everyone was so pre-occupied with that that I was able to have myself a little cry while everyone was watching the parade.
Once we got all that done the doctor told me that Katha's eyesight has gotten slightly worse but nothing bad. Also, there is some damage done to her ocular nerve which is the reason her eye movements are so slow. She also said there is nothing they can do for that. However, they want to see her again in October when the school can voice their concerns for Katha's eyesight as well. The doctor also recommended we get an I-Pad so we can enlarge it or put it up to where Katha can see it for school.
The other appointment we had was a physio assessment. That went really well because it was basically an adult playing with Katha. She loved it. They let me know to keep her active as much as possible, gave me a few exercises that we can do with her and told me that she is very good at knowing her own limits, but don't be afraid to push her a little. They also probably won't be able to get her into their regular cycle until after school starts.
Other than that we have just been enjoying summer. We had a trip out to Manitoba to see Amory's dad, Don and we will be going to Montana next month. We are very excited for that trip!
Onto the symptoms:
Enlarged liver and spleen: Still the same, liver is good, spleen is slightly enlarged.
Ataxia (unsteady gait): Katha is running more, which is nice to see. She doesn't fall down too much but is still has a very heavy walk.
Dysarthria (slurred speech): I find most of the time people need me to help them understand Katha. Even with myself I get one or two words and can figure out from there what she is trying to say.
Dysphagia (trouble swallowing): Katha is choking more on water and other liquids. We should hopefully be hearing from Occupational therapy in the next few months so that we can get a swallowing assessment done.
Basal Ganglia (holding limbs at awkward positions): I haven't noticed a lot of this lately, although she has started turning in her feet almost all of the time.
Dementia (memory loss): I find Katha forgets things fairly quickly now. When we go out to a restaurant and she has to go to the bathroom, by the time we get out of the bathroom she will have completely forgotten where we were sitting. She also forgets people she's only met once or twice or hasn't seen in a long time pretty quickly as well.
Seizures: Katha still has not had any seizures.
Gelastic Cataplexy (falling down in response to a large emotional outburst): We are always looking out for this. It still happens mostly when she is tired.
Sleep related disorders: She still has a hard time going to sleep. Although, she tends to be able to wake up not to badly.
Sensitivity to touch: I haven't noticed any signs of her being sensitive to touch in the last few weeks.
Vertical Supranuclear Gaze Palsy (Trouble moving the eyes up and down): Some days are better and some days are worse. However, even on her good days she can't look up as high as someone normally would.
Sunday, 30 June 2013
June 30, 2013
We had an appointment with Katha's neurologist on Thursday. Katha was having a bad day and was finally able to show the neurologist her Cataplexy. However, she also looked up really well. The neurologist was extremely pleased with Katha's progress since starting the medication. She is walking better, even her reflexes are better. She said that she believes that mentally Katha is stable and she doesn't need to see us for a year.
The bad news is that she is transferring hospitals and is not allowed to take any patients with her. Which means, that by the time we go back (as long as there continues to be no seizures) we will have a different neurologist. The reason this is bad news is this is the one doctor Katha would be excited to go see. I hope her new doctor will be as awesome as this one was.
Katha has finished school for the year along with Dominik. On Wednesday Katha and I went on her field trip. She had a lot of fun, but is definitely excited to be done school.
She has also been getting up really early and not going to sleep again until late. I thought this was straightening itself out as insomnia is a side effect of the medication like lactose intolerance which has been going away slowly but surely.
Katha is able to eat pizza again, along with pancakes and bagels. She is a very happy girl. I would like to try ice cream, but am a little worried on how her stomach would react. However, if we could do this, she wouldn't really have any eating restrictions anymore. It would make her very happy.
We leave for Manitoba on Friday or Saturday. Last year right after we got back from Manitoba was when they started testing for NPC. It will be the first time Don and Patty have seen her since she was diagnosed. We usually would let them come here this year, but we figure this will probably be the last time Katha will be able to make such a long trip, so we'd better do it while she still can.
Onto the symptoms:
Enlarged liver and spleen: Still the same, liver is good, spleen is slightly enlarged.
Ataxia (unsteady gait): Katha is still Katha. She falls down, and she gets back up. Her walk, I don't think, will ever be normal, but she makes do.
Dysarthria (slurred speech): Katha has good days and bad days. Sometimes, people seem to understand her, other times I have to translate for her.
Dysphagia (trouble swallowing): She still chokes on water. She has an appointment in mid-July with the people who will be doing a swallowing assessment.
Basal Ganglia (holding limbs at awkward positions): She still does this and still, unless your looking for it, I don't think you would ever notice it.
Dementia (memory loss): Same. We're continuing to play memory games, but her memory will still slip a lot.
Seizures: Katha still has not had any seizures.
Gelastic Cataplexy (falling down in response to a large emotional outburst): This happens quite a bit, especially when she is tired.
Sleep related disorders: Like I said before, she has trouble going to sleep and is often up early
Sensitivity to touch: Katha doesn't show much signs of this other than the puppy. His general fluffiness doesn't sit well with Katha, but she does try. She still likes to cuddle Oreo if he is wrapped up in a towel or something.
Vertical Supranuclear Gaze Palsy (Trouble moving the eyes up and down): Katha has been doing fairly well with this. She looked up at an air balloon the other day and said there was two of them. So, even when she can look up, she sees double. She FINALLY has an opthamologist appointment in July.
Hearing: I still wonder if she has sensitive hearing. When I get the opportunity I will have this tested.
The bad news is that she is transferring hospitals and is not allowed to take any patients with her. Which means, that by the time we go back (as long as there continues to be no seizures) we will have a different neurologist. The reason this is bad news is this is the one doctor Katha would be excited to go see. I hope her new doctor will be as awesome as this one was.
Katha has finished school for the year along with Dominik. On Wednesday Katha and I went on her field trip. She had a lot of fun, but is definitely excited to be done school.
She has also been getting up really early and not going to sleep again until late. I thought this was straightening itself out as insomnia is a side effect of the medication like lactose intolerance which has been going away slowly but surely.
Katha is able to eat pizza again, along with pancakes and bagels. She is a very happy girl. I would like to try ice cream, but am a little worried on how her stomach would react. However, if we could do this, she wouldn't really have any eating restrictions anymore. It would make her very happy.
We leave for Manitoba on Friday or Saturday. Last year right after we got back from Manitoba was when they started testing for NPC. It will be the first time Don and Patty have seen her since she was diagnosed. We usually would let them come here this year, but we figure this will probably be the last time Katha will be able to make such a long trip, so we'd better do it while she still can.
Onto the symptoms:
Enlarged liver and spleen: Still the same, liver is good, spleen is slightly enlarged.
Ataxia (unsteady gait): Katha is still Katha. She falls down, and she gets back up. Her walk, I don't think, will ever be normal, but she makes do.
Dysarthria (slurred speech): Katha has good days and bad days. Sometimes, people seem to understand her, other times I have to translate for her.
Dysphagia (trouble swallowing): She still chokes on water. She has an appointment in mid-July with the people who will be doing a swallowing assessment.
Basal Ganglia (holding limbs at awkward positions): She still does this and still, unless your looking for it, I don't think you would ever notice it.
Dementia (memory loss): Same. We're continuing to play memory games, but her memory will still slip a lot.
Seizures: Katha still has not had any seizures.
Gelastic Cataplexy (falling down in response to a large emotional outburst): This happens quite a bit, especially when she is tired.
Sleep related disorders: Like I said before, she has trouble going to sleep and is often up early
Sensitivity to touch: Katha doesn't show much signs of this other than the puppy. His general fluffiness doesn't sit well with Katha, but she does try. She still likes to cuddle Oreo if he is wrapped up in a towel or something.
Vertical Supranuclear Gaze Palsy (Trouble moving the eyes up and down): Katha has been doing fairly well with this. She looked up at an air balloon the other day and said there was two of them. So, even when she can look up, she sees double. She FINALLY has an opthamologist appointment in July.
Hearing: I still wonder if she has sensitive hearing. When I get the opportunity I will have this tested.
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