Fear of Seizures

The biggest transition we have had to make going into a new school setting is dealing with the fear and perceptions of seizures and epilepsy. This is a whole new group of people who are responsible for Gracie during the day. This is a whole new set of people with their own fears and perceptions coming into play. It is obvious to me that Gracie's new school is taking her medical condition seriously. They are concerned about prevention and procedures in the event a seizure happens at school. It is also becoming evident that they are afraid of that next seizure happening on thier watch.

At the end of her first day, one of the teachers in her classroom declared, 'whew one day down; 189 more to go.'. I immediately thought Gracie was acting up and the teachers would be glad to have her move on. Instead, the teacher was watching her like a hawk and her count-down was for how many more days to make sure nothing happens to Gracie on her watch. Maybe daycare was just used to it and we didn't think of the burden that those responsible for her well-being feel while they are in charge of her and her care. This teacher is so afraid that Gracie will have a seizure while in her care and she will not do something right. In some ways I smile at the sweet naivete of this teacher but it also takes me back to the place where we had those same fears and worries.

We got to watch while things ratcheted up for Gracie - first fever triggered seizures only; then seizures without a fever; and then seizures that seemingly came from no-where and were quite difficult to stop; and seizures that were the start of serious illnesses. We got to adjust with each development and then move on. These teachers are coming in now. We have been over a year seizure free but they are aware of the potential of what can happen. For a while, we were mercifully spared from what-if scenarios. We dealt with what came and didn't look for more. In discussing Gracie's medical history with the school nurse, I had to tell her where we have been so she could be prepared. She in turn shared that with Gracie's teachers and the administrators. Understandable, they are afraid of what can happen. I wonder now if I should have warned the nurse that Gracie will sometimes start to turn blue during a seizure and this is a good thing - her body is diverting oxygen from lips and hands to her brain and key organs. I wonder now if I should have warned the nurse that Gracie tends to have status seizures when they strike - ones that don't stop easily. In warning the nurse and these warnings being passed on, we have created a whole school of worried people.

On the upside, Gracie is being treated like a princess. When asked about preventive measures, I mentioned that we give her daily medications and she is on the ketogenic diet. When asked how the diet works and what is needed for that, I mentioned her meals, snacks and her special drinks. When asked about the drinks, I mentioned that hydration is important. Gracie now gets a special juice bottle that she can take with her anywhere she goes - just in case she wants a drink at gym or in the library or in the computer lab! They want to make sure that she is fully hydrated. I have tried to say that this might be just a bit of overkill and I am told to let it go. Obviously, her teachers have latched onto something tangible that they can do and feel empowered to help prevent a seizure. I think they are helping to make my sweet little imp into a monster!! But, I am so grateful for another wonderful group of people to help Gracie through her day!

The first photo was taken during Gracie's China Travel Group reunion over the summer. She is the darling in the pink dress with the wand. The cutie pie on the right is her friend Lili. The second photo was taken this week - Gracie at the end of the day from school.

We're Back = First day of school!

Today was the long awaited first day of kindergarten for Gracie. She has been waiting to go to kindergarten - on the school bus - since the day she watched Rita head off to kindergarten three years ago. For Gracie this is the fulfillment of her life-long dream today.

She woke up at about 6:20 this morning and wanted to know if today was the day she gets to go to kindergarten. She squealed with delight as we told her yes.

Here are some photos from the first day of school. She came hope wiped out from her early start and the first day without a nap. She needed to close her eyes for a bit when she got home.

I will try to keep this blog current now with updates on school, mainstream school with a special diet and how we are managing life with epilepsy. And of course photos!

Transitions

I mentioned that Gracie was having seizure on Friday nights and she switched to Monday nights!

Grace had a 30 minute seizure last night. This was the first prolonged seizure since January 29th. The frequency of the seizures has picked up but with few exceptions, the duration of the seizures is down. Last night was an exception. Her medication levels are at the right place. She is right where they want her to be on the meds. THat is no longer the cause of the increased seizure frequency. Now we need to try to figure out what else could be causing the increase in seizures.

Tom and I are thinking that it may have to do with her diet. Grace is on a lower ration of fat to protein and carbohydrate that most people on the ketogenic diet. Grace is about 2 to 1; whereas the standard starting point is 4 to 1. We are wondering if it is time to re-tune her diet and get more restrictive again. At least maybe if we let her continue to eat unlimited protein, we may need to give her more fat to compensate.

As a result, her breakfast this morning was chicken kiev (a chicken breast drenched in butter) and fried egg with cheese. She also had her juice (keto-koolaid) with a helping of heavy cream mixed in. This is actually very delicious. Her juice is orange flavored and it ends up tasking like an orange creamsicle - at least to us!

What is it about Friday nights?

Gracie seems to be having seizures routinely on Friday nights now. For a while it was every other Friday night and now we seem to have slid into weekly. Somewhere about 8:00 PM - give or take, she has a seizure.

We have tried giving her meds a bit earlier, no change. She has had three of the seizures at the Friday night session of gymnastics. However, she has had many more away from gymnastics. We have tried to think through many of the possible scenarios and get ahead of this but we are just running out of ideas - good ones anyhow!

It is getting harder to watch her have seizures now when I know that regardless of how small, they are taking something from her. The more of these there are, those little backward steps start to add up.

I have been in touch with her doctor and I am waiting to hear back. About 18 months ago, we looked into a drug called steripinitol. This drug is used in conjunction with her Depakte and has had great results with kids with SMEI (Severe Myclonic Epilipsy of Infancy)/Dravet's Syndrome. However, at the time, Gracie was not a good candidate for this drug as it works with the Depakote to raise the levels of it in her blood. She was already at near-toxic levels at that point so the medicine would not really help her. I am hoping that since her situation is the reverse now that this drug may be helpful to her. I have yet to hear of anyone using this drug and the ketogenic diet. The drug is still not cleared for sale in the US. We would have to have the hospital order if from Canada for us.

Thanks for checking in. Please hold Gracie in your prayers. She can use every little bit of help she can get these days!
Marie

Evaluation Update

At Grace's three year old physical, I discussed with her pediatrician where she was in comparison to the three-year old milestones. Grace was fairly close and we had trouble determining if the things that Grace did not do well were a lack of ability or interest. I discussed this with her day care teachers at the time as well. I guess the general feeling was that she might be starting to lag behind a bit so we should have her evaluated at the Intermediate Unit (the kindergarten/school readiness program for children ages 3 to 5). I submitted the paperwork and learned that the first step in the process is a screening. Depending on the results from the screening, she would or would not be referred for an evaluation. Then if there was a full evaluation, the result of that would determine if she required therapies or services or not.

We did Grace's initial screening in April 2009. At that time, Grace's raw score fell below where it should be but the woman conducting the screening felt that the score did not truely reflect where Grace was at. The school phychologist was called in to give her opinion. Grace's evaluation was scheduled just a few weeks after she was in the hospital in spetic shock so there was some concern that her recent illness was negatively influencing her score. Coupled with the fact that Grace did not do as instructed but gave her own version of the response which was scored as incorrect. For example, there was an exercies to see how she did making all of the sounds, she was given sentences to repeat so they could check how she did making specific sounds. Grace repeated the sentences paraphrasing and leaving out the sounds/words they were testing for but essentially repeating the meaning of what she was asked to repeat. We all agreed that maybe it was best to give her 6 more months and do another screening at that time.

Well, I didn't call to reschedule her until November instead of October and then when she was finally scheduled to go back in, she was in the hospital. When I called to reschedule, they decided that they would skip the screening (since she basically already failed it!) and just go for the evaluation. I finally got that scheduled for February 1, 2010.

The evaluation process was very well organized and amazing to watch. Grace just 'played' with all of the folks evaluating her and never once seemed ill at ease. The team were obviously quite skilled. She had a school phsycologist, a speech therapist, and occupational therapist and a physical therapist participate in the evaluation process. When I rescheduled the screening, I listed concerns in cognative abilities and speech. However, when I first submitted it, I had listed her motor skills as a concern - both fine motor skills and gross motor skills. Since they were still going off the first screening, they evaluated her for all of it.

It took a lot longer than I expected to get the results back from the evaluation. Basically, when I called to find out when to expect to hear back, I was scheduled for an IEP (Individualized Education Plan). I made the comment that I guessed that meant she was recommended for some services. The scheduler only confirmed that and said it would all be reviewed with us.

Her speech which was of a concern to us, was slightly behind where it should be but not enough to warrent speech therapies. However, they did give us strategies to help her with some little things. Her cognative abilites are behind where they should be and she was recommended for services for that. Her fine and gross motor skills were very much behind. Her adaptive skills (dressing herself and feeding herself) were on target. And her social skills were well above average. I guess I was right on when I speculated that she is covering up for her gaps by being cute and charming! Anyhow, she will receive three therapy sessions a week - one for cognative skills, physical therapy and occupational therapy for her motor skills.

The best part of her therapies is that she recieves them right at her day care. She is in an environment where she is safe and comfortable and surrounded by all things familiar. The IU has a classroom in the daycare to work with the kids requiring therapies. So Grace gets to go from one classroom to the other and they therapists send us notes home and show her regular day care teachers what they can do to help her work on her needed skills. This is just one more reason why we love our day care :-)

I was somewhat upset by the results. Not that she needs services (that she is getting them I am glad) but more that the seizures have taken so much from her. When Grace was 18 months old, she was one of the best talkers in her group. She was tiny but she kept up with all of the kids. I liked being naive about the damage the seizures were doing to her. Now my eyes are opened. We have to fight for control of these seizures and be as vigilant as we can possibly be. We also need to keep working with her to try to help her catch up to where she should be. Afterall, she is scheduled to start kindergarten in September 2011!

Keto 'Happy Meal'

Fried pork rinds - I will readily admit to an aversion to this food. I don't think it ever appealed to me. I could not believe my eyes, when last summer, on a trip down south, Tom came out of a gas station convenience store with a few bags of fried pork rinds - and he was excited about it. I imagine my curled lip and sneer very clearly gave away my opinion on the food. However, Tom said the one thing that was guaranteed to change my mind - there are no carbs in them!

Fried pork rinds are all protein and fat and not a single carbohydrate. This makes them great ketogenic diet food. Tom had several flavors so he could try them with Gracie and see if she liked them. She was absolutely thrilled when he handed her a bag of 'chips' that looked like potato chips and actually said she could have some. I think the idea of her own 'chips' appealed to her for a bit but them she realized that they just were not potato chips! It takes Gracie about two weeks to tire of a new food and that was what happened to the fried pork rinds.

However, our imaginations were then fired up about them. We now use them as the basis for keto-bread crumbs. We crumble some non-flavored fried pork rinds and then blend in some parmesean cheese, onion powder, garlic powder, salt, pepper and any combination therein. We use these breadcrumbs the same as any other. We dip bits of chicken into an egg and coat with the keto-bread crumbs and then fry them up. Voila, chicken nuggets that are carb-free! We mix that with some eggplant french fries and we have a keto-happy meal and a happy keto-child.

The eggplant fries are very good. We take a regular eggplant and cut it into pieces resembling shoestring french fries. This gets fried up in oil - either a mix of canola and peanut or olive oil. The eggplant picks up the flavor of the oil - just as french fries do.

Once a month in Gracie's day care class, they have a Chick-fil-A lunch. Basically, it's the Chick-fil-A kids meal. Gracie used to love this. She also likes to be like all of the other kids. We knew about the eggplant french fries before but we just recently started pairing them with the keto-chicken nuggets. Gracie is content that she is getting the same meal that everyone else is eating!

It's been a while...

I have not posted here in quite some time. That leaves me wondering where to begin again. Here goes....

Gracie has had an increase in seizure activity since the start of the year. Her medication levels had dropped and one medicine (the Depakote) was increased the end of January. Her levels were still not to where they need to be and the seizures continued. Just this past week, both of her medications were increased (Depakote and Keppra). Hopefully, this will help Gracie get some control over her seizures.

The medication changes also seem to be helping with the headaches. Gracie has been complaining of headcahes on and off but much more frequently of late. We were told that the headaches are a bit of a warning that her medication levels have dropped. One of the side effects of Depakote is that is helps with headaches. Since she is so used to it, it seems that when there is not enough of it in her system, she gets headaches. She can now clearly communicate when she has a headache so hopefully, this will help us to know when her level need to be adjusted in the future.

Grace managed to put on some weight. She is up to 32 and a half pounds! It is great to see her making some strides in this as she has continued to grow. It is most likely a combination of her gaining a bit of weight and having been sick earlier that impacted her metabolism and how she is processing her medications. We are hopeful that this latest adjustment will last her for a while.

I'll try to post soon with some updates from her evaluations.

Almost a New Month

Things seem to be getting worse for Gracie this month in terms of seizures. Pretty much since she started the ketogenic diet, all of her seizures have been explained. Basically, they had an explanable cause such as an active illness or the onset of an illness. All until this month.

She has another seizure last night - this is the third presumably un-provoked seizure this month. The seizure lasted 25+ minutes. She was taken to the ER via ambulance. While there, she started seizing again and it lasted about 5 to 7 minutes. She had blood drawn in between seizures.

Imagine our surprise when her Depakote level (Valproic Acid) came in at 43. Her theraputic dose is between 100 and 120. She has been as high as 150 before. But never this low. The last time she was seizing out of control like this, her Depakote level was in the 80's.

They gave Gracie an IV form of the medicine to bring up her level. Unfortunately, this caused her blood pressure to tank and her heart rate to go up. Fortunately she was holding her oxygen levels on her own or I would have been in a full-blown panic. This reminded me of when she went into septic shock. Thankfully, this was not a repeat of that episode!

She got transferred to CHOP when they did a full work up on her as well. By then, all of the Valium and Adavant given to stop the seizures were starting to wear off and the effect of the IV Depakote was wearing off so her blood-pressure stabilized. She was given the all-clear and sent home a mere three hours after arriving at CHOP! When Grace recovers, she rebounds quickly.

We have instructions to up her Depakote and to add an additional sedative for the next few days to cover her while her blood levels rebound. I am hoping that by the time the calendar page turns to a new month, that we will be stable again and working on the next one hundred day span of no seizures.

One Year Anniversary

Today marks one year since Gracie began this journey known as the ketogenic diet. Wow.

When we first started this diet, I wasn't sure we could last one week, and one month seemed like a long shot. Here we are one year in and it was no where near as bad as I feared it would be at the start. We are at a manageable point with the diet. The benefits are still there.

First and foremost, Gracie has had far fewer seizures in this past year than in prior years. She went six months seizure free and that had not happened at any point prior. The seizures she has had have been much shorter in duration than in prior years. She has much better balance, speech articulation, social interaction and language skills than she did a year ago.

The pictures keep loading out of order. I'm just going with this order - sorry! The first picture is last June when Grace was refusing to eat. The second picture is Grace on her third birthday (January 2009). The third one is from her fourth birthday (January 2010). There is not much difference from one birthday to the next - she regainged the weight she lost last summer.

Too Much Information?

Is there such a thing as too much information? Maybe! Grace went for her ketogenic diet blood work last week. The lab sent a 'courtesy' copy of the results to the house. Of couse I opened it and reviewed them. There were a lot of out og range results. So I looked all of the tests up on the internet.

Of course, what I saw on the internet freaked me out. By the time I actually sent an e-mail off ot the neurologist and the keto team, I was in a full-blown panic. I was starting to make a list of all of the things I would need to pack for a stay in the hospital - as I was certain that all of this meant she was very ill.

Gracie's neurologist and the whole team are wondeerful (I'm sure I mentioned that before!). I have two responses back within 30 minutes - one from the doctor and one from the nurse practitioner. The nurse practitioner replied that everything was fine - nothing to worry about. If the vitimin D levels stay low, we may need to add a supplement. The neurologist replied with a much longer e-mail - explaining what the test could indicate (addressing the fears of what I read on the internet) and how those were ruled out for Grace. Many of the results were where they want her to be given the diet she is on. And he ended with 'nothing to worry about'!

I realized somehwere mid-panic that this was the first time the lab sent us a courtesy copy of her results. Interestingly enough, Tom had lab work done the same day at the same lab and there were no courtesy results for him. The fleeting thought crossed my mind that these results may be exactly what she is getting each time she is tested - I am only seeing them unfilted this time. Of course, that thought just flitted through my head and I went back into full panic - until everyone replied - nothing to worry about.

Happy Birthday Gracie

Today is Gracie's 4th birthday. She is very excited about it. We had a birthday dessert and candles and presents with some family on Sunday. The pictures are from that.

The birthday dessert was something Tom whipped up that morning using heavy cream, cream cheese, Splenda and vanilla extract flavor. It tasted a bit like cake batter. The key was that everyone had a spoonful of the same thing! It also helped that it had enough consistency to support the candles!

I didn't get to posting all though the past month. Everyone has been relatively healthy, we have just been busy! Thanks for checking in on us.

New Traditions

December through to January is a busy time for Gracie and for that matter all of us! Gracie's family day (the anniversary of when she was placed in our arms in China) is December 12th, then we have Christmas, and her birthday on January 3rd. There are all of her big occassions for the year. This year, I want to start new traditions that do not involve hospitals!!

Last year for family day and for Christmas, Gracie was in the hospital. For Family Day, she was in with pneumonia and we discovered she was allergic to sulpha drugs (of course, after having received two doses of them!) We totally skipped over celebrating her day. For Christmas, Grace had a seizure in the early afternoon. She had excellent timing as she got to open all of her presents from Santa before needing to leave the house and prior to us putting the dinner in the oven! We spent the remainder of Christmas in the ER. We celebrated her birthday with no problems - but as we said that was her last birthday cake for a while as she was starting the ketogenic diet the next week.

This year, we need to celebrate family day in a new way - the traditional Chinese meal will have to change as she can't eat many traditional Chinese dishes - too many carbs! We did purchase gifts for both girls from China to give them on their family day. We will be able to give that to Grace and maybe go out for crab legs (or as Grace calls them, 'crap'.)

For Christmas, we are looking forward to just simply staying at home this year! We promised the staffs at the local ER and at CHOP that we would not be seeing them until Easter. We gave each other our holiday greetings before Gracie left the hospital last week!

For Gracie's birthday, we are trying to figure out something that does not involve food. Gracie knows about birthday cake and candles. Tom has been working on some recipies for cheesecake so that we can try a keto-cheescake with candles for her. It has to be something that we can serve to everyone as Gracie catches on right away if she gets something different! I think the cake and candles will be the key thing - and of course the singing :-)

The pictures are of recent hair cuts and a picture of Rita and Gracie with Rita's classroom project, Kingston. Kingston came to stay for two nights in the middle of November.

Thanks for checking in!

Back Home

Gracie did her miraculous turn-around thing again and we are back home tonight. We were given the option to take her home or keep her longer for observation. We opted to take her home and just keep an eye on her here. She was drinking just fine so dehydration was not an issue. She was pretty much back to baseline (aka what she was like prior to the seizure). The only lingering issue was her balance. In the past, this returns but it takes a bit longer. The doctors were actually concerned about what germs she could pick up while still in the hospital. They felt she would be better off at home if we were comfortable taking her home. She is currently tucked in and sleeping safe and sound at home.

This was a rough ordeal for Rita this time. Rita likes to get to see her in the hospital and see for herself that Gracie is alright. We didn't have her do that this time. First of all, if she got to the hospital right away, I'm not sure it would have reassured her any. Secondly, Rita would be confined to the room Gracie was in rather than get to explore the play rooms (this is often a perk she enjoys while Gracie is in the hospital). Thirdly, there is no need to expose Rita to more possible germs. Her school was closed today and tomorrow due to a water main break so Rita had a lot of time to think about Gracie today. Rita also caught her seizure and I think it scared her - she did amazingly well, but it scared her nonetheless. Tonight, Rita was clingly and emotionally needy. I think it will be good for her to be home tomorrow with Gracie and a parent. It should help her to settle back down.

Thank you for checking in. Please keep praying for Gracie and Rita. Thank you!

Back in the hospital

Gracie is back in the hospital tonight. She has pneumonia - again.

She had a seizure this afternoon while outside playing with Rita and two friends. Apparently, Grace felt it coming on and just sat down in the grass. She then laid down and started to shake. Rita came running in the house yelling that Grace was laying down just staring up at the sky and she was shaking. I grabbed the Diastat, the medicine to stop the seizure, and ran out while Tom just ran. We took her inside and gave her the medicine - the seizure did not react. After 5 minutes we gave her another dose and called for the ambulance. Gracie's seizure lasted about 25 minutes total and she did not wake up afterwards. The doctor and medical team at the local ER were quite concerned. When Tom and I got to grace in the yard, her head was on a piece of wood (for landscaping). We don't know if she hit her head or not. She had a CT scan and everything was fine - although it did confirm sinus congestion. She had a chest x-ray and it confirmed pneumonia - in both lungs.

Apparently there was some concern that she was in septic shock again. The transport plan to move from the local hospital to CHOP called for her to go to the PICU. By the time the transport team from CHOP arrived to get her, Grace had finally woken up a bit - enough to alleviate some of the fears the doctors had. She was taken to 7-West - Neurology. As she arrived at the room, she finally started to speak again - my sign that things will be alright. She is being treated for pneumonia and there are plans to start respitory therapy in the morning.

Thanks for checking in on us and please take a moment to say a quick prayer for Gracie's healing.

All's Well That Ends Well

Just as I though things were starting to settle back down into some semblance of normal, more chaos hit! I was finishing up lunch when my cell phone rang. It was Rita's teacher calling to tell me that her school was being evacuated and someone needed to come pick her up right away. Apparently, there was a gas leak in the vacant building next door. I called Tom to see what he was up to and to see if he was able to pick Rita up. Tom asked if I had the message from day care about Gracie; she was having a low sugar episode and they were worried she was sick. I said I would pick up Gracie after I got Rita.

I didn't think about the fact that the entire area of Rita's school would be bedlam and streets would be shut down! They had evacuated the students to the gymnasium of the high school across the street - which was also being evacuated as best I could tell. There were emergency workers and vehicles everywhere - police, fire and ambulances. Despite the chaos, they were very well organized and were keeping very close track of every student. Rita was brought out and the minute she saw me she burst into tears. I guess she held it together and then just lost it. It took a little while to convince her that this was all just safety precautions and that everything would be alright. She was very worried about all of the ambulances sitting around. Rita was also upset that she had to leave her back pack in her classroom. At six years old, it was just a bit too much for her.

Rita and I got settled and managed to get out of the area. We got to Gracie's day care just at the end of nap time. We gathered up her things and picked her up off her nap mat to carry out. I could see just how nervous they all were about Gracie - the medicine to stop a seizure and a pair of rubber gloves were right on her mat and the teacher was laying down right next to her. Day care gets an A+ for preparedness! Gracie seemed to have several things going on - she wasn't eating and appeared to have a low sugar episode - hence the shakiness. They gave her a few cc's of apple juice and then got her to eat some peanut butter and some turkey. This seemed to have solve that problem. She appeared warm to them so they took her temp. She was just at the 100 degree mark. Somewhere in the midst of all of this (and Gracie's version of the story varies with each retelling), she was either pushed or hit. She had a black eye and a cut on her eye. In addition, she has a chesty sounding cough.

I got both kids home and we had a nice snuggle in front of the TV for a bit. Rita seemed to have calmed down and was fine and Gracie woke up the rest of the way and wanted to eat! We met Tom and picked up Rita's new glasses (see the photos!) and then we took Grace to see the doctor. Notice that Gracie is also now wearing glasses; albiet sunglasses. She wants to be just like Rita!

The doctor was satisified that Gracie's lungs remain clear. She was concered that the congestion had gotten into her lungs but that does not seem to be the case - just a sniffle and a cough. She had no elevated temp or fevers in the doctors office. Gracie had eaten - pigged out actually - so there was no point in testing her blood sugars. Basically, Gracie is fine. She was in full imp mode in the doctor's office - so much so the doctor laughed and said a child with that much energy was not feeling too sick!

As the saying goes, all's well that end well!

Interesting Flu Study

One interesting note about Gracie's recent hospitalization to share. While we were in the ER, someone came in to ask if we wanted to participate in a study. They are tracking the level of a certain protein in the blood stream and following up on the patient outcome to see if the level of this protein is a marker for the severity of the resultant flu and the eventual patient outcome. It required exactly one drop of Gracie's blood. They were able to take that drop of blood from the blood in the lines when they took Gracie's blood for other blood work - basically blood that had no other use and was about to be disposed of.

The protein in question is the Lactate protein. The theory is that the higher this level is in the blood stream the more severe the flu will be. If I remember correctly, it is something about the body's reaction to the flu virus, produces this protein. Thus the more severe the flu; the more of this protein that will be produced. It sounds like an interesting theory.

CHOP is the regional children's hospital handling the majority of the flu cases during this pandemic. They are seeing many, many children a day with the flu. I was impressed that someone was ready with this study. This may be one very good thing that comes out of all the negatives of this flu. We were happy to be able to participate. This may actually be something that helps Grace out in a few years if she gets the flu again. It would be really handy to know at the onset how severe things are going to get.

Thanks for checking back in on us!

Gracie is home!

It is with great pleasure that I report we are all sleeping under the same roof tonight! Gracie was discharged late this afternoon.

Gracie was definatively diagnosed with the H1N1 virus. The doctors wanted to make sure that there was a cause related to her increased seizure activity and the high fevers assocaited with the H1N1 virus are clearly the cause. Her lungs remain clear so there is no respiratory factor for Grace. In my mind this was one of the most worrisome symptoms as this was the factor cited with so many of the childhood deaths assocatied with this flu. Thankfully, Gracie was not hit with this complication.

Gracie is generally miserable and cranky. I would expect this from any sick three-year old. She is getting headaches from the flu and an upset stomach from the TamiFlu and the anti-seizure sedative. It is not plesant for her - but not life threatening either. She can be comforted and wants to snuggle up and be carried about. It is nice to be able to do something to ease her.

Gracie was not drinking enough and she would not be released until she was taking sufficient fluids on her own. Last night, I was in the kitchen area and noticed the infant bottles. I took one in to her and filled it with her 'juice' (keto version) and she lit up. She quickly sucked down a full bottle - all two ounces of it! That is how we got her to drink enough fluid on her own. She went to bed tonight with her little bottle and a small smile.

To complicate matters, Grace was discharged while I was off with Rita to her eye doctor appointment. Rita started having problems with blurry vision from time to time. She got checked out at the pediatrician and then recommended for follow-up with the eye doctor. Well, Rita is getting glasses. She was very pleased about that. Anyhow, while she was getting her exam done and picking out her new frames, Tom was calling to have us come pick he and Gracie up at the hospital. Rita and I finished up and raced down to get them. Gracie needed some prescriptions filled but we missed the pharmacy at the hospital - they closed about 15 minutes before we all arrived. We took her prescriptions to the local pharmacy but they don't have any TamiFlu - let alone at the dose she needs. We managed with the other scripts. So we need to run back down to the hospital in the morning to get the TamiFlu prescription filled. She needs the next dose by 10:00 AM. The drug store said flu medicines are very hard to get and to keep stocked. Fortunately, we can get them at CHOP.

Thanks for checking in on us!

Hangin' with our friends at CHOP

Gracie is still here at CHOP. Once they got her fever down, it seems to be staying down. She is on TamiFlu for the flu; IV antibiotics for the bacterial infection; and a sedative to prevent additional seizures. Basically, she is under control. She is very tired and not very interested in food or drink. She is on IV fluids again tonight since she is not drinking enough.

Grace remembered the child life specialists here and perked up this afternoon to paint. She was so pleased to get to paint. It was great to see her wake up and play. The IV is in her right hand (and she is right-handed) so she had to paint with her left hand. Despite that, she thoroughly enjoyed painting!

This is the ketogenic diet initiation week at CHOP. It is ironic because the last time Gracie was inpatient, it was initiation week as well. Last time, Tom spoke to the other parents. If we stay, he may put in another cameo :-)

The Flu has struck

Well, Gracie's illness turns out to be the flu. We were giving her Motrin and Tylenol every few hours - the maximum allowed doses. She was still running a fever - up and down. With one of the spikes today, it triggered another seizure. We did not call 911 and rush her to the hospital as we were not sure what they would do for her. We called her pediatrician and left a message. When she called back the message was, these symptoms sound like the flu that is going around. Grace needs to be at CHOP. Are you comfortable taking her or shall we send an ambulance? (We drove on our own - no need to wait for an ambulance - I am faster :-) )

We expected very long lines at CHOP but there were very few people in the ER waiting room when we got there. Grace was triaged rather quickly and then seen rather quickly as well. It was quickly determined that she had the flu. The big question was how her fever was so high when she was on full doses of Tylenol and Motrin, back to back. It turns out that she may have a secondary bacterial infection. We were given the option to take her home after a dose of IV antibiotics or to leave her there for observation and monitoring. We chose to have her stay there at least for the night. For me, this was too much of a reminder of what we went through in March with the pneumonia that turned into septic shock - we don't need a repeat of that. Grace got a room in 7-West - the Neurology floor. It was a good thing because the first thing they did was order the sedative that will help prevent additional seizures while she battles these fevers.

Grace is in good hands. We hope that she bounces back quickly and does not experience any additional seizures.

"Where Rita?"

That was the sweetest thing I heard for a long time. It set my mind at ease in a huge way.

Gracie had a seizure Friday night. It started out as a tonic-clonic (full-body seizure) and then morphed into an absence seizure. It was a relatively short seizure by Gracie's standards - only about 12 minutes - but it was not her normal seizure. Her breathing was shallow and she seemed to be fighting to come out of the seizure. We had already called for an ambulance and they were on their way when she came out of the seizure. Grace was out of the seizure enough to try to pull her arms away as they tried to check her vitals and run an IV. Typically, when she is that alert, she will also tell them NO as she swats at them. I usually take that as my sign that she will be alright - when she is alert enough to fight.

The folks at the ER checked her out and tried several times to get her to respond but she could not get any words out - she could only grunt. It looked like she was trying to talk but nothing was coming out for her. Several times they tried to rouse her and get her to respond but she was not very responsive. I must admit that I was starting to get a bit worried. After we were in the ER for about 2 hours, I picked her up so we could change her and change the bed. She was fairly limp. And then out of nowhere, she perked up, picked up her head, looked at me and then looked at Tom and said, 'Where Rita?'. Grace was going to be OK. Rita was asleep in the chair curled up in a pile of coats and jackets.

We stayed a bit longer in the ER to make sure that Grace was back to normal, or as they call it, baseline. In no time at all was Grace up and asking for something to drink and something to eat. We were all back home shortly thereafter.

Grace has no fever Friday night. As sometimes happens, the seizure is a warning that the illness is coming. By Saturday morning, Grace was running a fever and was congested. She was tired, cranky and miserable but she was going to be alright! We will watch this cold to make sure it doesn't get much worse. We have been pumping her full of Tylenol and Motrin to keep the fevers from spiking. Fortunately, it seems to be a cold that has invaded our house and not the flu - something else we are quite grateful about!!