I've got to say that I have never had such a sick household. What was thought to be bacterial infections for me, Mike & Raquel, turned out to be viral, just like Gabby's, so the antibiotics did nothing. Friday afternoon and Saturday, I was completely bedridden, and very fortunate that Raquel wanted to do nothing but sleep, because there was no way I was slightly capable of taking care of her. Thank you, Mom & Dad, for making enough soup to feed all of us for several days and bringing it down with all the other goodies you packed. We really appreciate it - and the last place I wanted to be was in the kitchen.
Raquel has to stay out of school again this week because of her lingering cough. The inhaler does seem to really help, but because she's in the special education class where they have weakend immune systems, she can't expose them to her illness. And the last thing I'd want is for any of those adorable kids to catch what she had. Nurse Janice called to check on her last Friday, concerned that she was having a reaction to the Depakote. She was very surprised when I told her she'd developed pneumonia.
Speaking of Depakote, I had to lower the dose while she was on the course of antibiotics because she was becoming way too lethargic and it was getting really hard to distinguish whether or not it was illness related or medicine related. I did notice that her night-time sleeping changed a bit once I stopped giving her the nightly dose. She seemed very unsettled in her sleep. I'll continue to document the changes I'm noticing as she gets back on track.
I also received the book I ordered on LKS. Since the condition is so rare, information on it is pretty limited. This book - called The Official Parent's Sourcebook On Landau-Kleffner Syndrome by James N. Parker, M.D. - is basically just a reference manual for self-directed research. It provides web listings and directories that do not come up during regular internet searches. Looks like I've got a lot of reading and searching and learning to do.
One of my concerns so far is her speech therapy. If she does in fact have LKS, the main thing that is stressed is the importance of productive speech therapy. This obviously is not happening at school, where she wants absolutely nothing to do with her therapist. So, I'm beginning to wonder about resuming in-home sessions. Guess I need to call Regional and see how I would go about doing so.
Besides all that, I'm very happy that things are getting somewhat back to normal around here - and love seeing all the smiles and bright faces on my girls.
Wednesday, May 27, 2009
Thursday, May 21, 2009
At Least The Pediatrician Is Close By
This morning, Raquel woke up very happy and looking much better. But as the morning progressed, she became very congested and was coughing a lot - to the point where she was choking. When I was unable to feed her lunch without gagging, I called the nurse at the pediatrician's office to see if she recommended a decongestant of some kind. She could not because Raquel is under the age of 4. What she did recommend was bringing her right in to have her oxygen count checked again. So, I grabbed her shoes and off we went - fortunate to get the last appointment before the office closed for lunch.
Raquel wasn't very cooperative with the blood oxygen test. It seems simple enough compared to other tests she's had done. They just attach a little device to her finger and after about 45-seconds have the results. If she's cooperating, that is. Today, the doctor tried both hands, both feet, and her earlobes to no avail. I finally had to turn on my cell phone and play her music, while pinning her down with the other arm so she couldn't move. We finally got a reading of 95, just one point higher than the test taken on Tuesday. So, the doctor wanted to give her an oxygen treatment and then do the test again.
What good times that was. They placed her in my lap and I had to literally put this oxygen mask over her mouth and nose for SEVEN minutes, while she kicked and screamed and scratched. It seemed like an eternity. Once that was done - and she was beyond upset - we had to wait another ten minutes for the oxygen to get working in her system. She was too upset to participate in another oxygen test, but the doctor heard a loosening in her lungs and phoned in a prescription for an inhaler so I could pick one up on the way home. She was too upset for me to stop and the reality is I don't know how the doctor thinks I'd be able to give her one - have her inhale, hold for 10 seconds, then exhale? Not. I have to pin her down just to do nose drops!
The oxygen treatment did seem to help. She was breathing much better this afternoon. Tomorrow morning I take her back to the pediatrician - my 4th day in a row of being there - so she can make sure her lungs are healing the way she had planned, and give her another oxygen test. Wish me luck...
Raquel wasn't very cooperative with the blood oxygen test. It seems simple enough compared to other tests she's had done. They just attach a little device to her finger and after about 45-seconds have the results. If she's cooperating, that is. Today, the doctor tried both hands, both feet, and her earlobes to no avail. I finally had to turn on my cell phone and play her music, while pinning her down with the other arm so she couldn't move. We finally got a reading of 95, just one point higher than the test taken on Tuesday. So, the doctor wanted to give her an oxygen treatment and then do the test again.
What good times that was. They placed her in my lap and I had to literally put this oxygen mask over her mouth and nose for SEVEN minutes, while she kicked and screamed and scratched. It seemed like an eternity. Once that was done - and she was beyond upset - we had to wait another ten minutes for the oxygen to get working in her system. She was too upset to participate in another oxygen test, but the doctor heard a loosening in her lungs and phoned in a prescription for an inhaler so I could pick one up on the way home. She was too upset for me to stop and the reality is I don't know how the doctor thinks I'd be able to give her one - have her inhale, hold for 10 seconds, then exhale? Not. I have to pin her down just to do nose drops!
The oxygen treatment did seem to help. She was breathing much better this afternoon. Tomorrow morning I take her back to the pediatrician - my 4th day in a row of being there - so she can make sure her lungs are healing the way she had planned, and give her another oxygen test. Wish me luck...
Wednesday, May 20, 2009
Let's Throw In Some Viral Tracheitis, Shall We?
Gabby's cough from yesterday seemed worse today, so thinking she was ready to start her own course of pneumonia, I decided to take her to the doctor. Turns out that her lungs were clear and she showed no cold symptoms besides her cough. The doctor said that she appeared to have viral tracheitis - or an inflammation in her windpipes. He didn't put her on antibiotics, but said that since Raquel's pneumonia could have started from the same thing, he wants Gabby to lay low for several days, drink plenty of fluids, and REST. That didn't go over too well with her - especially the no playing with friends and drinking mostly water.
Raquel is doing pretty well. I still have fever "issues" and went out and bought a new digital temple thermometer this afternoon, which is currently my new best friend. Fortunately her fever hasn't gone past 101 today, so that's a really good thing - even though I've been giving her Tylenol every 4-5 hours and think she should be completely normal temperature wise and have major anxiety when she becomes lethargic and wants to sleep. I have to keep reminding myself that that is her way of healing, as hard as it is to watch.
Let's see what tomorrow brings. Hopefully the family will be feeling much better and that I continue to feel like a million bucks!
Raquel is doing pretty well. I still have fever "issues" and went out and bought a new digital temple thermometer this afternoon, which is currently my new best friend. Fortunately her fever hasn't gone past 101 today, so that's a really good thing - even though I've been giving her Tylenol every 4-5 hours and think she should be completely normal temperature wise and have major anxiety when she becomes lethargic and wants to sleep. I have to keep reminding myself that that is her way of healing, as hard as it is to watch.
Let's see what tomorrow brings. Hopefully the family will be feeling much better and that I continue to feel like a million bucks!
Tuesday, May 19, 2009
Not Expecting This One
Just when I thought the week is off to a great start ... another curve ball got thrown our way.
Raquel woke up last night at 11pm with a high fever. I don't do fevers very well at all. I understand it's our body's way to fight infection and stuff, but they just really freak me out. I get out every thermometer I can find to make sure I have an accurate reading, and pretty much make a bad situation worse. I even woke up Mike - who spent the majority of last night at Urgent Care due to a lung/sinus infection - to make sure she didn't feel overly "warm." I'm beyond paranoid for some reason. I gave her Tylenol and tried to get her comfortable, but she was pretty miserable until 3am, when she finally went back to sleep. This morning she wasn't any better, so off to the doctor we went.
I really expected the pediatrician to say that her sinus infection had returned and that we would need to start up the antibiotics again. But that's not what happened. Instead, I was told that she has the start of pneumonia!! Both of her lungs were infected, and they had to give her an oxygen test to see if she needed to be hospitalized. Fortunately, she scored a 94 (under 90 = hospital) and was given a 5-day dose of medicine to help fight the infection. I take her back on Friday morning so the pediatrician can hopefully hear clear lungs and she won't require any additional treatment.
As I was driving to the pharmacy, I realized the importance of having a sense of humor during times like this. Yes, I wanted to cry - how much more does my little angel really need to go through? - but, again, it could be much worse. Fortunately the pneumonia was caught at the early stage and can be treated at home. And fortunately, she continues to be a real trooper throughout it all. She is a constant reminder of how resilient children can be.
Get well, Raqi. We love you!
Raquel woke up last night at 11pm with a high fever. I don't do fevers very well at all. I understand it's our body's way to fight infection and stuff, but they just really freak me out. I get out every thermometer I can find to make sure I have an accurate reading, and pretty much make a bad situation worse. I even woke up Mike - who spent the majority of last night at Urgent Care due to a lung/sinus infection - to make sure she didn't feel overly "warm." I'm beyond paranoid for some reason. I gave her Tylenol and tried to get her comfortable, but she was pretty miserable until 3am, when she finally went back to sleep. This morning she wasn't any better, so off to the doctor we went.
I really expected the pediatrician to say that her sinus infection had returned and that we would need to start up the antibiotics again. But that's not what happened. Instead, I was told that she has the start of pneumonia!! Both of her lungs were infected, and they had to give her an oxygen test to see if she needed to be hospitalized. Fortunately, she scored a 94 (under 90 = hospital) and was given a 5-day dose of medicine to help fight the infection. I take her back on Friday morning so the pediatrician can hopefully hear clear lungs and she won't require any additional treatment.
As I was driving to the pharmacy, I realized the importance of having a sense of humor during times like this. Yes, I wanted to cry - how much more does my little angel really need to go through? - but, again, it could be much worse. Fortunately the pneumonia was caught at the early stage and can be treated at home. And fortunately, she continues to be a real trooper throughout it all. She is a constant reminder of how resilient children can be.
Get well, Raqi. We love you!
Monday, May 18, 2009
Noticing Subtle Changes
I'm trying not to get ahead of myself with Raquel being on medication, but I've got to say that I am noticing little things that I would really like to believe are directly related to the Depakote.
For starters - her naps. These have coincidentally gone from roughly 45-minutes per day to 2 - 2 1/2 hours. And she sleeps hard. I used to make background noise because she'd wake up if the phone rang, the trash pick up came, or because Gabby was playing loudly in her room. Not anymore. When she goes to sleep, she's down for the count. Instead of tippy toeing around the house, I've been able to go about doing things as usual.
Because of this, I am assuming that she is also sleeping heavier at night, especially since she is given a dose right at bedtime. This morning, she woke up at 3am because she needed to be changed. Anxiety set in because once awake, regardless of the reason, 3am means she's up, I'm making coffee, and doing my best to keep her quiet so everyone else can sleep. But this morning seemed a little different to me and once I changed her, I put her back in bed, rubbed her head a few times, and back to sleep she went. I was shocked.
The other thing I'm noticing is a change in her meltdowns. They are shorter in duration, more manageable and she is easily redirected. Yesterday I ventured out to the grocery store during a very difficult time - right before nap. As soon as we approached the entrance, she started in and I headed back to the car not wanting to deal with it. But then I changed my mind - I only needed a couple things and knew that I wouldn't feel like going back once she woke up hours later. So I told her to stop it, that we would go really fast and be home soon. And she stopped. Her teachers commented on this today when I picked her up. She had one incident but they said she snapped out if it after just a few short minutes and didn't escalate. That is wonderful news. The school week is off to a great start.
I know we are at the very early stages of all this, but am really thankful that she hasn't experienced any adverse reactions so far. I'll continue to keep my fingers crossed and pray for a positive week.
For starters - her naps. These have coincidentally gone from roughly 45-minutes per day to 2 - 2 1/2 hours. And she sleeps hard. I used to make background noise because she'd wake up if the phone rang, the trash pick up came, or because Gabby was playing loudly in her room. Not anymore. When she goes to sleep, she's down for the count. Instead of tippy toeing around the house, I've been able to go about doing things as usual.
Because of this, I am assuming that she is also sleeping heavier at night, especially since she is given a dose right at bedtime. This morning, she woke up at 3am because she needed to be changed. Anxiety set in because once awake, regardless of the reason, 3am means she's up, I'm making coffee, and doing my best to keep her quiet so everyone else can sleep. But this morning seemed a little different to me and once I changed her, I put her back in bed, rubbed her head a few times, and back to sleep she went. I was shocked.
The other thing I'm noticing is a change in her meltdowns. They are shorter in duration, more manageable and she is easily redirected. Yesterday I ventured out to the grocery store during a very difficult time - right before nap. As soon as we approached the entrance, she started in and I headed back to the car not wanting to deal with it. But then I changed my mind - I only needed a couple things and knew that I wouldn't feel like going back once she woke up hours later. So I told her to stop it, that we would go really fast and be home soon. And she stopped. Her teachers commented on this today when I picked her up. She had one incident but they said she snapped out if it after just a few short minutes and didn't escalate. That is wonderful news. The school week is off to a great start.
I know we are at the very early stages of all this, but am really thankful that she hasn't experienced any adverse reactions so far. I'll continue to keep my fingers crossed and pray for a positive week.
Friday, May 15, 2009
Nice End To A Long Week
Last weekend, my in-laws were very gracious in offering to watch both the girls so Mike and I could enjoy a weekend in Las Vegas. All of us knew from the beginning that this was going to be really hard on Raquel being away from not only her parents but also the comfort of her own home, and we did our best to make it as easy for her as possible. Mike's parents spent most of the week baby proofing their house, buying new toys to keep things interesting, and stocking up on her favorite foods. I brought her boombox so she'd be able to play her music, and felt pretty confident that Gabby would be able to distract her if and when needed.
Unfortunately, it didn't turn out as well as we had hoped. She didn't want to nap, which meant she didn't want to sleep at night. She had meltdown after meltdown and by the time we picked them up on Sunday afternoon, everyone was exhausted, and his parents kept commenting on how much work she is. Thanks Mom & Dad for doing this for us. We know how hard it was on you and really appreciate it.
I kept Raquel home from school on Monday to try to get her settled back in a daily routine. She was very happy and content, and seemed to really enjoy being home and having things back to normal.
Then Tuesday came. I took her to school and it started out just like a typical morning ... until Nurse Janice called me at 10am to ask me to come get her. I was really surprised because even when Raquel has had meltdowns in class before, the room is equipped with all kinds of stuff - the ballpit, padded barrel things, etc. - which allow them to easily deal with it. Nothing they were doing seemed to work so she was forced to call me. We were asked to pick her up early on Wednesday to help try to wean her back into a school setting, letting her go a little longer each day until she was able to tolerate the entire class period. That sounded good at the time.
But Thursday was much worse. The meltdown started as soon as she got to class and I received the dreaded "come get her" phone call at only 9:30am, right after I got off the phone with the drug store pharmacist who informed me that her medication was ready to be picked up.
After speaking with Janice - as well as getting a lot of feedback from Raquel's ABA Team regarding Depakote and other kids they know of who are on it - I stopped at the store on the way home from school to pick it up, and immediately gave her a dose once we walked through the door. Then I basically just watched her for any adverse reactions.
I have to say that it did seem to slightly calm her. She took a 2-hour nap and slept really good last night. She's been in a great mood and today was able to stay the entire time at class. This weekend we should really be able to see how its affecting her.
I am still struggling with giving her traditional medicine and worry about the possible side effects. But then I think about what if this works, that maybe this is going to bring my girl out of her shell and how wonderful it will be to have her functionally communicate. When I look at it that way, what kind of mom would I be to not even try what a neurological specialist was recommending? It's frustrating because after everything we've experienced over this last year - all the tests, the appointments, the therapy, the sleepless nights - it comes down to giving her a pill twice a day. Again, if I knew then what I know now...
So glad we made it to Friday and that she seems to be settling down a bit. Looking forward to the weekend and am very hopeful that I'll be noticing positive changes in her over the next few days and weeks.
Unfortunately, it didn't turn out as well as we had hoped. She didn't want to nap, which meant she didn't want to sleep at night. She had meltdown after meltdown and by the time we picked them up on Sunday afternoon, everyone was exhausted, and his parents kept commenting on how much work she is. Thanks Mom & Dad for doing this for us. We know how hard it was on you and really appreciate it.
I kept Raquel home from school on Monday to try to get her settled back in a daily routine. She was very happy and content, and seemed to really enjoy being home and having things back to normal.
Then Tuesday came. I took her to school and it started out just like a typical morning ... until Nurse Janice called me at 10am to ask me to come get her. I was really surprised because even when Raquel has had meltdowns in class before, the room is equipped with all kinds of stuff - the ballpit, padded barrel things, etc. - which allow them to easily deal with it. Nothing they were doing seemed to work so she was forced to call me. We were asked to pick her up early on Wednesday to help try to wean her back into a school setting, letting her go a little longer each day until she was able to tolerate the entire class period. That sounded good at the time.
But Thursday was much worse. The meltdown started as soon as she got to class and I received the dreaded "come get her" phone call at only 9:30am, right after I got off the phone with the drug store pharmacist who informed me that her medication was ready to be picked up.
After speaking with Janice - as well as getting a lot of feedback from Raquel's ABA Team regarding Depakote and other kids they know of who are on it - I stopped at the store on the way home from school to pick it up, and immediately gave her a dose once we walked through the door. Then I basically just watched her for any adverse reactions.
I have to say that it did seem to slightly calm her. She took a 2-hour nap and slept really good last night. She's been in a great mood and today was able to stay the entire time at class. This weekend we should really be able to see how its affecting her.
I am still struggling with giving her traditional medicine and worry about the possible side effects. But then I think about what if this works, that maybe this is going to bring my girl out of her shell and how wonderful it will be to have her functionally communicate. When I look at it that way, what kind of mom would I be to not even try what a neurological specialist was recommending? It's frustrating because after everything we've experienced over this last year - all the tests, the appointments, the therapy, the sleepless nights - it comes down to giving her a pill twice a day. Again, if I knew then what I know now...
So glad we made it to Friday and that she seems to be settling down a bit. Looking forward to the weekend and am very hopeful that I'll be noticing positive changes in her over the next few days and weeks.
Wednesday, May 6, 2009
Follow-Up With The Neurologist
This morning we had our follow-up with Dr. Mower, Raquel's neurologist, to go over all the tests and blood screenings she has taken. As I mentioned previously, the MRI showed no brain abnormalities whatsoever, and it turns out that all of her chromosome blood work came back completely fine as well. I was a little surprised by that because of my history of miscarriages, plus losing a preganancy at 5 1/2 months due to Trisomy 18. I kind of thought things were leaning towards that direction.
Not the case. Turns out that my 24-hour Smurf provided some big results in the EEG department instead. Dr. Mower said that the EEG showed a lot of abnormal brain discharges, especially at night. He then got out his chart and showed us how a typical EEG reading looks, then showed us how Raquel's was different. He said that it appeared that she was having some type of epileptic seizure - reminding us that there are many types and ranges and when you hear the word "seizure", you immediately think of eyes rolling back and uncontrollable jerking of body parts, which is obviously not the case with Raquel. He said that her EEG is consistent with a very rare syndrome called epileptic aphasia, also known as Landau-Kleffner Syndrome, or LKS. Again, Raquel continues to be a difficult piece of work because apparently in most LKS cases (I think), the speech delay is also accompanied by not understanding words, which, again, is not the case with Raquel.
The neurologist is recommending that we put her on a seizure medication for 3-months, and then do another EEG to see if it provides different results. His theory is that these abnormal discharges her brain is setting off is interfering with her speech progression, and that her lack of communicating is a huge frustration factor with her. Once she's able to effectively communicate, growth continues. But that's my take on it. All of this brain stuff is extremely confusing and today is the first day I've even googled epileptic aphasia or LKS.
As many of you may know, I am a huge advocate of holistic medicines and chiropractics and putting her on medication is not something I am taking lightly. Her doctor addressed this rather well, simply stating that as her neurologist, he is required to recommend treatments that have been studied, used with placebo trials, etc., but has also heard of the positive results from the GFCF diets, B-Vitamins, supplements, etc. He really does have a great bedside manner and I like him a lot. His frustration was pretty clear when he apologized for not being able to give us the answers we so badly wanted to hear.
But, I'm looking at this as a positive. The MRI was normal, the blood work was normal, pretty much all severe diseases, illnesses, syndromes, etc. have been ruled out. And that's a really great thing. It's still hard not being able to "know" how or what or where or when something went wrong, but I refuse to beat myself up over it anymore. Some things are just out of your control, and I am fortunate to have such a beautiful, affectionate little girl - and a neurologist who continues to be very optimistic!
Not the case. Turns out that my 24-hour Smurf provided some big results in the EEG department instead. Dr. Mower said that the EEG showed a lot of abnormal brain discharges, especially at night. He then got out his chart and showed us how a typical EEG reading looks, then showed us how Raquel's was different. He said that it appeared that she was having some type of epileptic seizure - reminding us that there are many types and ranges and when you hear the word "seizure", you immediately think of eyes rolling back and uncontrollable jerking of body parts, which is obviously not the case with Raquel. He said that her EEG is consistent with a very rare syndrome called epileptic aphasia, also known as Landau-Kleffner Syndrome, or LKS. Again, Raquel continues to be a difficult piece of work because apparently in most LKS cases (I think), the speech delay is also accompanied by not understanding words, which, again, is not the case with Raquel.
The neurologist is recommending that we put her on a seizure medication for 3-months, and then do another EEG to see if it provides different results. His theory is that these abnormal discharges her brain is setting off is interfering with her speech progression, and that her lack of communicating is a huge frustration factor with her. Once she's able to effectively communicate, growth continues. But that's my take on it. All of this brain stuff is extremely confusing and today is the first day I've even googled epileptic aphasia or LKS.
As many of you may know, I am a huge advocate of holistic medicines and chiropractics and putting her on medication is not something I am taking lightly. Her doctor addressed this rather well, simply stating that as her neurologist, he is required to recommend treatments that have been studied, used with placebo trials, etc., but has also heard of the positive results from the GFCF diets, B-Vitamins, supplements, etc. He really does have a great bedside manner and I like him a lot. His frustration was pretty clear when he apologized for not being able to give us the answers we so badly wanted to hear.
But, I'm looking at this as a positive. The MRI was normal, the blood work was normal, pretty much all severe diseases, illnesses, syndromes, etc. have been ruled out. And that's a really great thing. It's still hard not being able to "know" how or what or where or when something went wrong, but I refuse to beat myself up over it anymore. Some things are just out of your control, and I am fortunate to have such a beautiful, affectionate little girl - and a neurologist who continues to be very optimistic!
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