I *heart* Jack Handey

"I can't stand cheap people. It makes me real mad when someone says something like, "Hey, when are you going to pay me that $100 you owe me?" or "Do you have that $50 you borrowed?" Man, quit being so cheap!”

Randomness...

I want to take a road trip. Anyone want to join me? I thought about maybe renting a car and just going for a few days. Will $300 that I made garage saling cover this trip? Hmmm....

All joking aside(oh wait, I wasn't joking) I really do want to take the kids somewhere. I'd love for them to be able to see the mountains so I thought about driving out to Yellowstone but last time I was there I saw a massive snake and I can't get that picture out of my head so now I'm skeered.

How long do you think it takes to drive to New York?

Speaking of not wanting to leave for a week...

Got a letter from Emeric's doctor today in Houston. It's called an "Interdisciplinary Plan of Care" to give to his doctors, use at the ER, etc...


Allergies: NO LACTATED RINGERS

Emeric has a suspected metabolic disorder. Individuals with metabolic disorders have decreased tolerance to minor illnesses and fasting states and are prone to rapid decompensation. Any change in Emeric's condition should be taken very seriously as he can quickly become fatally ill.

Metabolic disorders are genetic diseases that result in a deficiency of metabolism. All cells need appropriate metabolism to function and metabolic disoders may involve any organ system: brain, muscle, nerve, eyes, hearing, endocrine, cardiac, hepatic, immune, renal. Symptoms become severe during ordinary infections, with exercise(exertion), with stres, or even with heat. Any of these conditions may precipitate a "metabolic crisis". During a "crisis", the patient's organ systems begin failing one at a time. A crisis can develop as slowly as over several weeks or as rapidly as over several hours and a patient with a metabolic disodrer may go from talking and walking to intubated in the ICU within a very brief period. Very few patients survive a metabolic crisis, but with early intervention and supportive care, it is possible.

Emeric's symptoms include: Epilepsy, macrocephaly, GI dysmotility, nystagmus, developmental delay, autonomic dysfunction, reflux, aspiration, dysphagia, poor temperature regulation with easy overheating, decline in neurologic status even with minor illness. so much for helping in the care of this complicated child.

My mind is real at ease now. Not that I didn't know this all before but because seeing it written down makes it more real.

It's gonna be a long two weeks...

First I have a garage sale this weekend and I'm pretty sure I'm getting sick. Jake was sick, his mom is now sick and I just feel like you feel before getting sick. Lovely.

Next week Emeric has a doctor appt, Kylie's birthday is on Friday and then I leave for a week to be a counselor at our church summer camp. I have never left my kids that long. I've only ever left Emeric overnight and the girls for a few days during out of state doctor appt's.

I am so nervous/worried to leave the kids. Mostly Emeric because he has so many medications and needs liquids thickened and can't get overheated and.... what if someone forgets? And especially now that Kaydence is on a bunch of meds too. Plus we just decreased one of Emeric's seizure meds due to side effects and what if he starts having seizures again?

Sigh.

I plan on keeping myself very busy during camp to keep my mind off it all. Or at least I'll try.

I'm opening a pharmacy...

After leaving the doctor's office yesterday with three prescriptions for Kaydence I might as well open my own pharmacy.

Kaydence saw an allergist yesterday and we spend FOUR AND A HALF hours there. He's also a pulminologist and deals with lung issues so we discussed her asthma. He wasn't thrilled that she'd had previous allergy testing done because he said the type they did is not that accurate in kids so he wasn't going to take it at face value. He also didn't seem to be fully convinced that she had asthma.

He recommended doing a chest xray, sinus xray, nasal swab, spirometry(breathing test for lung function) and scratch testing for allergies. I was completely against the scratch testing because she was so tramautized by the skin testing they did before but he said this was different and not painful so I agreed to it.

The sinus xray showed chronic sinusitis. He figures she's had a sinus infection for a very long time. He wants her on antibiotics for 6 weeks(yuck), nasal washes 2x a day and Nasonex 2x a day. He said it will likely takes 6 months for the infection to fully clear.

The spirometry showed decreased lung function and proves she has asthma. The chest xray was cloudy and indicates asthma. She needs to take Flovent through an inhalor 2x a day.

The scratch testing showed a mild reaction to dairy and peanut. They aren't sure of the accuracy of the test because even the hystamine, which is what they use for a control, didn't react very much. They want to repeat it in 6 months. For now they took some blood to see if there's a reaction to milk and peanut and he assumed they would be normal(I hope!) but we should know something next week.

I can't tell you all the thoughts that ran through my head when he gave me the results of those tests. Mostly, "Why do I have more than 1 sick kid?" "How crazy will I go giving up to 10 medications a day to 2 different kids EVERY SINGLE DAY?" and more questions along those lines.

Poor Kaydence though. She must be so miserable and probably doesn't even know what it's like to feel good. She's never complained about her sinuses which makes me think she's probably dealt with it for such a long time.

Right now insurance doesn't want to pay for the Flovent or the nasonex. The Flovent comes through an inhalor. She could also take Pulmicort but that's through a nebulizer and it's really much more time consuming to use a nebulizer 2x a day vs. just 2 quick puffs on an inhalor so I'm really hoping insurance gets over it.

I guess the positive side is that I've made a lot of new friends at the pharmacy and bettered my math skills by counting and multiplying doses!

Epilepsy questions answered...

Thanks for those that asked questions about Epilepsy. I'll try to answer them as thoroughly as I can...

What exactly causes a seizure?
A seizure is caused by an abnormal electrical response in the brain. There are lots of causes of seizures which include structural brain abnormalities, metabolic disturbances like low blood sugar, infection, brain injury...


Is it your brain shutting down?

No. A seizure happens when there is an abnormal electrical surge.

In Emeric's case, are seizures the main symptom of epilepsy or are there other attributes of the disease?

I hope I'm understanding this correctly... Epilepsy is defined as having 2 or more seizures that are not provoked by something like a fever. People with epilepsy are more likely than the general population to have learning disabilities, mental retardation or other health problems and these can be a direct result of the seizures affecting the brain but it may also be due to side effects of medication.

In Emeric's case the Epilepsy is considered symptomatic which means there's something causing the seizures. You could also say he had a seizure disorder because really seizure disorder and Epilepsy are pretty interchangeable. Emeric's other symptoms like low muscle tone, heat intolerance, reflux, etc. are not caused by the seizures but by a metabolic condition. This metabolic condition also causes his seizures.

I hope I understood this question correctly and answered without too much confusion! :)

Can a person with Epilepsy live on their own, or do they need to be supervised?

A person with Epilepsy can live on their own and many do. It really depends on how well their seizures are controlled with medication and the type of seizure they have. For example, if someone has brief absence seizures that last 10 seconds or so and don't cause a loss of consciousness there wouldn't be a real danger posed by being alone. However, if a person frequently experienced tonic clonic seizures or drop seizures which causes a person to lose muscle tone and fall to the floor there's a bigger risk for injury.

Mental retardation of varying degrees is common in Epilepsy and would be a factor in determining if someone could live alone. Mental retardation is very poorly understood and some people with mental retardation can live independently.

Also, are there different types of Epilepsy?

There are many different types of Epilepsy and many different seizure types.

Symptomatic Epilepsy is when there's an underlying cause for the seizures.
Idiopathic Epilepsy is the term used when no cause for the seizures is found.

Seizures are either generalized or partial. Generalized seizures occur when the entire brain is affected. Tonic clonic, absence(staring spells) and myoclonic seizures are generalized. There are many other types of generalized seizures but those are the most well known types. Emeric has atypical absence seizures which are also generalized and similiar to absence seizures but, you guessed it, not typical! :)

Partial seizures occur when one part of the brain is affected. Sometimes it's a very specific area of the brain and sometimes it's the temporal lobe or a larger area of the brain but not the entire brain. Partial seizures are sometimes referred to as "petit mal" and include complex partial seizures.

-----------------------------------------------------------------------------------

Those are pretty brief answers but hopefully will explain a bit more about Epilepsy as I think most people have very limited knowledge of even what a seizure is. I know I did!!

Emeric's new bed

Emeric's bed was brought out yesterday and set up for us. They accidently ordered a full instead of a twin but were encouraging us to take it because they were already there and I don't think they wanted to send it back and reorder another one. So, they said if we had room to take it. It's HUGE. They had it ordered with padding which we didn't ask for but it seems easily removable and we'd asked for both sides to come down instead of having a solid wood panel on one side like you see. They might be able to fix that though. The head and foot also go up and down.