I have been in the throes of medical records again. When you see a new doctor, they always want to know what has been done in the past, what meds, what tests, etc. etc. Digging through the last 6 years has been sobering. What Cole's body has been through, the meds that he has tried, the hospital admissions...it really is too much for anyone that hasn't even entered Kindergarten. However, I look back and see how strong we are. We should have had at least two nervous breakdowns by now!!! :)
So, for the future and to be able to access it quick via the nice, old friend the Internet-I present a history of the treatments tried for my son:
Anti-Epileptic Medications (including atypical treatments)
Phenobarbitol
Versed-rescue (Buccal and Intranasal)
Ativan-rescue
Propofol-rescue
Keppra
Diastat-rescue (rectal suppository and tablet)
Ketogenic Diet
Klonopin-rescue and daily
Depakote
Topamax
Low Glycemic Index Diet
Potassium Bromide
Rocephin
N-Acetyl Cyestine
Clobazam
Verapamil
Prednisone
Diazepam tablet-daily
Phenobarbitol-rescue and daily
Zonegran
Ativan
Stiripentol
*Note: Some medications are listed twice. This is due to a reintroduction after many years of discontinued use. Rescue meds, used as needed, are also listed.
Adjunct Medications
Acetaminophen
IB Proufen
Amoxicillin
Potassium Phosphate
Carnatine
Magnesium
Calcium
Centrum Multi-vitamin
Nano VM Multi-vitamin
Vitamin D
Mirilax
Cefdinir
Sennakot
Lactulose
Metamucil
Multivitamin Supplement (Carnation Instant Breakfast)
Magnesium Citrate
Treatments and Equipment
Oxygen
Pulse Oximeter
FL-41 Lenses
g-tube
Feeding Pump-IV pole, Feeding Bags, Syringes
SPIO-Stabilizing Pressure Input Orthosis
Therapy Swing
Helmet
Cooling vest
Wheelchair
Enemas
Seizure Alert Service Dog (he really is listed as Durable Medical Equipment in the law)
Suction Machine
iPad
All equipment required to administer medication-pill crusher, syringes, g tube extension, etc.
Additional Therapies and Treatments
Homeopathy
Neurofeedback
Speech Therapy (also including feeding therapy)
Occupational Therapy
Physical Therapy
Aquatic Therapy
Anat Baniel Method Therapy
Craniosacral Therapy
Sensory Integration Therapy
Behavioral Therapy
Specialists
Neurology-6 different ones
Epileptology
Genetics
Dietician
Opthamology
Gastroenterology
Anesthesiology
Surgery
Cardiology
Orthopaedist
Podiatry
Orthotics
Neuropsychology
Nephrology
Endocrinology
Developmental Pediatrician
G-Tube Nurse Practicioner
Bone Health Specialist (Ortho)
Pulmonology
Pediatric Dentist
Behaviorist
Hospitals
PCMC
IMC
CNMC
MCH
IFX
CCHMC
SCH
I was getting my hair done the other day and I spent the entire time I was "processing" on the phone making doctor's appointments. My friend asked me if I felt like we lived at the doctor. I had to be honest and say, "Yes". Looking at it all listed out is a little overwhelming. I am positive that I have missed something (probably more than just one something). No wonder we are tired! All I know is Cole is worth it. We will keep fighting.
Showing posts with label Therapy. Show all posts
Showing posts with label Therapy. Show all posts
Tuesday, July 30, 2013
Monday, July 8, 2013
Dropped Off
Hey Friends-
Sorry it seems like we have dropped off of planet earth.
Our little world has been chaotic, to say the least, these last few months.
The extreme Reader's Digest version:
* Make A Wish was awesome. Cole struggled. We had fun in between the seizures and took over 400 pictures
* Cole has been in ICU 3 times and was almost taken via air ambulance to Miami
* I can't count how many times we have changed and tweaked meds
* Normal tonic clonic count right now is around 15 to 20 daily. Mostly at night. Never thought that could be normal
*We drove to Florida and stayed inpatient for 6 days. Had to detox Cole and have some tough decisions ahead
* I don't have lupus! YAY! I do have fibromyalgia, and possibly osteo arthritis. I've tried a few things and think that maybe I found something to help with the pain
* We are taking Cole to Seattle for a week to have an in depth Mitochondrial study done
* Brian and I got to go to Hawaii for a week with my parents and siblings; something that has been planned for 6 months. By the skin of our teeth and with the help of 7 nurses, two good friends and a pack of teenage boys (our friend's sons), Cole was taken care of. Sometimes we had a ratio of 3 adults to 1 kid, but it happened and we are grateful! I have missed my Hawaii home so much
* We don't sleep. At least for more than 2 or 3 hours at a time
* Showering has become totally optional
* Our finances are more than a little strapped
* Slugger is still awesome
* If you are our friends "In Real Life" we are so sorry that we are neglecting you
* We are glad that we didn't switch jobs last month. Brian's co-workers have been awesome about our crazy schedule
* I have over 300 e-mails in my inbox
* We got "fired" from therapy because Cole has not been attending over 80% of his sessions (due to seizures, mind you). I am not sure I have the strength to pull out Tiger Mama and fight this one
* I don't watch TV any more
* I gained 7 pounds in Hawaii and it was totally worth it!
* ESY Summer school started today and I am really pumped about his IEP and the goals for the next year
* It is very hot and humid around here. Or it is pouring rain
* Cole has a new kiddie accordion and it is hilarious to watch him play it
* Had a Neuropysch eval and found that Cole is still severely delayed in a lot of areas, but has made awesome progress in others
* We are grateful for insurance
There are a lot of Grand Canyon sized gaps in there. All in all, we are tired, we are stressed, we are still married, we are still happy and trying to find the good in every day. We live minute to minute and that means things like dishes, blogging and changing our clothes don't happen on a regularly scheduled basis. Our lawn looks like a jungle, our hair is unkempt, but we are trying to do what is best for our boy. Sometimes that means just sitting back and letting go of the things that you thought were important and realizing that they really weren't that important at all. Or maybe I am just trying to make myself feel better about not vacuuming? :)
Peace and Blessings, Friends! One of these days I will jump back on the bandwagon.
Sorry it seems like we have dropped off of planet earth.
Our little world has been chaotic, to say the least, these last few months.
The extreme Reader's Digest version:
* Make A Wish was awesome. Cole struggled. We had fun in between the seizures and took over 400 pictures
* Cole has been in ICU 3 times and was almost taken via air ambulance to Miami
* I can't count how many times we have changed and tweaked meds
* Normal tonic clonic count right now is around 15 to 20 daily. Mostly at night. Never thought that could be normal
*We drove to Florida and stayed inpatient for 6 days. Had to detox Cole and have some tough decisions ahead
* I don't have lupus! YAY! I do have fibromyalgia, and possibly osteo arthritis. I've tried a few things and think that maybe I found something to help with the pain
* We are taking Cole to Seattle for a week to have an in depth Mitochondrial study done
* Brian and I got to go to Hawaii for a week with my parents and siblings; something that has been planned for 6 months. By the skin of our teeth and with the help of 7 nurses, two good friends and a pack of teenage boys (our friend's sons), Cole was taken care of. Sometimes we had a ratio of 3 adults to 1 kid, but it happened and we are grateful! I have missed my Hawaii home so much
* We don't sleep. At least for more than 2 or 3 hours at a time
* Showering has become totally optional
* Our finances are more than a little strapped
* Slugger is still awesome
* If you are our friends "In Real Life" we are so sorry that we are neglecting you
* We are glad that we didn't switch jobs last month. Brian's co-workers have been awesome about our crazy schedule
* I have over 300 e-mails in my inbox
* We got "fired" from therapy because Cole has not been attending over 80% of his sessions (due to seizures, mind you). I am not sure I have the strength to pull out Tiger Mama and fight this one
* I don't watch TV any more
* I gained 7 pounds in Hawaii and it was totally worth it!
* ESY Summer school started today and I am really pumped about his IEP and the goals for the next year
* It is very hot and humid around here. Or it is pouring rain
* Cole has a new kiddie accordion and it is hilarious to watch him play it
* Had a Neuropysch eval and found that Cole is still severely delayed in a lot of areas, but has made awesome progress in others
* We are grateful for insurance
There are a lot of Grand Canyon sized gaps in there. All in all, we are tired, we are stressed, we are still married, we are still happy and trying to find the good in every day. We live minute to minute and that means things like dishes, blogging and changing our clothes don't happen on a regularly scheduled basis. Our lawn looks like a jungle, our hair is unkempt, but we are trying to do what is best for our boy. Sometimes that means just sitting back and letting go of the things that you thought were important and realizing that they really weren't that important at all. Or maybe I am just trying to make myself feel better about not vacuuming? :)
Peace and Blessings, Friends! One of these days I will jump back on the bandwagon.
Friday, March 16, 2012
Just Keep Swimming, Just Keep Swimming...
We watch a lot of Finding Nemo around here. Dory's mantra gets stuck in your head, but it is also a really good life lesson. When life gets you down, "What do you do? You SWIM!"
After an interesting week seizure-wise, these pictures make me smile. For anyone wondering what goes into an aqua therapy session with a 4 year old, here is a glimpse.
Swimming with a Wonder Board. Going to the wall to retrieve it.
Cole's therapist brought her waterproof camera and shared these pics with me.
Crawling up and down an incline. Sometimes with weights, sometimes without.
Cole just being Cole and sticking his head under.
He throws these blocks, then has to swim or walk through the water to get them. Then it starts all over. Like an intense game of fetch.
Just a little piece of a 45 minute session. Thank you Lead Changes Therapy!
After an interesting week seizure-wise, these pictures make me smile. For anyone wondering what goes into an aqua therapy session with a 4 year old, here is a glimpse.
Swimming with a Wonder Board. Going to the wall to retrieve it.
Cole's therapist brought her waterproof camera and shared these pics with me.
Crawling up and down an incline. Sometimes with weights, sometimes without.
Cole just being Cole and sticking his head under.
He throws these blocks, then has to swim or walk through the water to get them. Then it starts all over. Like an intense game of fetch.Just a little piece of a 45 minute session. Thank you Lead Changes Therapy!
Tuesday, March 6, 2012
The Fish
I have been trying to get Cole into aqua therapy for over 8 months now. Turns out, it is hard to find a therapist in our area. Add that to finding someone who has an opening when Cole is not in school or not on Sunday and it makes it even more difficult. I can't even start on the Reader's Digest version of what it took to get into finding someone who takes our insurance and the process it was to actually try and get an "alternative therapy" approved!
SO, like other things that we have tried including homeopathy, neurofeedback, SPIO and other stuff that has been considered "alternative", aqua therapy is not seen from an insurance point of view as something that is useful (aka-should be covered). However, we took the plunge hehe. I think I might get it 60% covered...maybe. We'll wait and see.
Cole has not had formal therapy for a year now. In a Dravet kid's world, that is just crazy talk. WHAT?!! Just plain crazy. The majority of children Cole's age who have a Dravet diagnosis have global therapies (mainly physical, occupational and speech). He needs it, but with the move and starting school, Slugger and everything else that went on last year, adding dragging him around to various clinics to get maybe 30 minutes a week of therapy just didn't happen. So, I put the pedal to the metal at home and we did a lot of stuff that would qualify as therapy. Everything from fine motor to gross motor to speech, feeding, occupational, social...you name it. His left side is weaker than his right. He still runs sideways and leads with his head. He still toe-walks occasionally. Still needs deep pressure therapy. Still working on jumping, but man we have come a long way for just the two of us (and Slugger)! Still, Cole can only benefit from me so much. He has Occupational and Physical Therapy built into his IEP at school but let's be honest, it is not a real session. Remember when I went to school every day for 4 months? I saw the therapists and the time that they spent with my son. It was not really their fault, since they have to see an entire classroom of kids once a week for 30 minutes, but nothing they did with Cole could lead to progress.
That said, I have started dragging the boy an hour each way for 45 minutes of physical therapy, in the water. He loves it! Just like I knew he would. His seizure activity has dropped during the sessions now that he is used to his environment and his therapist. He really pushes himself because he is having so much fun. The car ride is hard on him. Add to that half a day of pre-school and he is one tired boy by the end of Tuesday.
Aquatic Therapy is a good fit for Cole since it strengthens his core, hopefully slowing ataxia and the crouched gait that a lot of Dravet kids get. His limbs are also supported by the water, so he can work twice as hard, using the resistance and support of the water to exercise his muscles instead of just using weights-which he hates. It's also fun for him, so it keeps his attention a lot longer than traditional therapy.
Things like having him crawl with weights in his hands would take a lot of cajoling from a therapist in a regular PT session.
Slugger gets a lot of attention while we are there. You really don't expect to see a dog at an indoor pool!
It is really hitting us hard in the financial department-over $100 a week out of pocket; but I know that it is really helping! I can already see him using his left side better. Plus, it is one of those things that gives me a "pinch-me" moment. Last year at this time, we could not even take him near chlorine. Let alone to an indoor pool that has other people in it! Talk about overstimulation :) temperature, new environment, light, noise, the works. We could not have spent two hours in the car, eaten a meal on the road (geez keto, I am glad you are gone!), or have therapy and school in the same day. We certainly did not have a nurse to help me drag everything around and keep an eye on Cole while we are in the car, and we did not have a hairy, lovable pooch to cart around. So yes, it is hard work. It costs a lot of money. But man is it worth it! Look at that smile :)
I think he may even be ready for hippotherapy...and when that happens, I am going to break out bawling; I just know it.
SO, like other things that we have tried including homeopathy, neurofeedback, SPIO and other stuff that has been considered "alternative", aqua therapy is not seen from an insurance point of view as something that is useful (aka-should be covered). However, we took the plunge hehe. I think I might get it 60% covered...maybe. We'll wait and see.
Cole has not had formal therapy for a year now. In a Dravet kid's world, that is just crazy talk. WHAT?!! Just plain crazy. The majority of children Cole's age who have a Dravet diagnosis have global therapies (mainly physical, occupational and speech). He needs it, but with the move and starting school, Slugger and everything else that went on last year, adding dragging him around to various clinics to get maybe 30 minutes a week of therapy just didn't happen. So, I put the pedal to the metal at home and we did a lot of stuff that would qualify as therapy. Everything from fine motor to gross motor to speech, feeding, occupational, social...you name it. His left side is weaker than his right. He still runs sideways and leads with his head. He still toe-walks occasionally. Still needs deep pressure therapy. Still working on jumping, but man we have come a long way for just the two of us (and Slugger)! Still, Cole can only benefit from me so much. He has Occupational and Physical Therapy built into his IEP at school but let's be honest, it is not a real session. Remember when I went to school every day for 4 months? I saw the therapists and the time that they spent with my son. It was not really their fault, since they have to see an entire classroom of kids once a week for 30 minutes, but nothing they did with Cole could lead to progress.
That said, I have started dragging the boy an hour each way for 45 minutes of physical therapy, in the water. He loves it! Just like I knew he would. His seizure activity has dropped during the sessions now that he is used to his environment and his therapist. He really pushes himself because he is having so much fun. The car ride is hard on him. Add to that half a day of pre-school and he is one tired boy by the end of Tuesday.
Aquatic Therapy is a good fit for Cole since it strengthens his core, hopefully slowing ataxia and the crouched gait that a lot of Dravet kids get. His limbs are also supported by the water, so he can work twice as hard, using the resistance and support of the water to exercise his muscles instead of just using weights-which he hates. It's also fun for him, so it keeps his attention a lot longer than traditional therapy.
Things like having him crawl with weights in his hands would take a lot of cajoling from a therapist in a regular PT session.
Slugger gets a lot of attention while we are there. You really don't expect to see a dog at an indoor pool!
It is really hitting us hard in the financial department-over $100 a week out of pocket; but I know that it is really helping! I can already see him using his left side better. Plus, it is one of those things that gives me a "pinch-me" moment. Last year at this time, we could not even take him near chlorine. Let alone to an indoor pool that has other people in it! Talk about overstimulation :) temperature, new environment, light, noise, the works. We could not have spent two hours in the car, eaten a meal on the road (geez keto, I am glad you are gone!), or have therapy and school in the same day. We certainly did not have a nurse to help me drag everything around and keep an eye on Cole while we are in the car, and we did not have a hairy, lovable pooch to cart around. So yes, it is hard work. It costs a lot of money. But man is it worth it! Look at that smile :)
I think he may even be ready for hippotherapy...and when that happens, I am going to break out bawling; I just know it.
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