Tuesday, July 30, 2013

Sobering

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.


6 comments:

  1. I should do the same thing...although I don't think our list would be quite as impressive as yours :) What new doctor is Cole going to see?
    Also, I'm wondering about that app that you mentioned using as a monitor for Cole.
    Bless you guys!

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  2. When little John was younger, I counted over 30 appointments in a single month. Hang in there--we love you!

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  3. Hoping that the new doctor is offering something that would give all of you a little rest from the insanity of this disease. I am in awe of what you all are facing and the amazing attitude you all have. I thought of Cole as I read about little Charlotte Figi on CNN-hoping that one day maybe I'll be reading about Cole responding to something new that the doctors come up with! Sending lots of strength to all of you and hugs to Slugger and just wanted to say I think you are incredible Niki.
    Lots of woofs and whinnies from an admirer,
    Sue

    ReplyDelete
  4. Am One of the happiest woman on earth since my son was cured from the problem of seizure,which he has been having for eight years now,he do have the attack two to three times a week,which is affecting is education and his life.i got the contact of a doctor from the post of one Mr paul thanking him for curing his seizure problem,i got the contact and contacted him then he made me to know that the medication is a permanent cure, and that was how i got the medication which i used on my son,and for six month now there have been no sign of seizure in him again.any one with such problem can contact him on his email drwilliams098765@gmail.com

    ReplyDelete
  5. WOW ALL THANKS TO DR WILLIAMS I HAVE NEVER BELIEVE IN HERBAL REMEDIES.
    my son have been a patient of epilepsy . I had tried a lot of anti viral med prescribed to me by doctors over how many years now but I could not see any improvements in my son symptoms. One day while going through the internet , i got to know about this great Herbal Dr who uses his herbal remedies in curing people from epilepsy,quickly i contacted him and he prepared a herbal medication for my son which i received and he used it as instructed by dr williams. After few weeks the improvement were very visible. the sleepiness and the abnormal behavior stooped ,on thing now he is so full of life. I would recommend this to all my friends,families,around the globe suffering from epilepsy.you can contact him through his email on drwilliams098675@gmail.com.for advice and for his product THANKS TO YOU ONCE AGAIN DR WILLIAMS

    ReplyDelete
  6. I am Sophie from Canada, I once suffered from a terrible and Chronic epilepsy ,since i was bone , the doctor told me there was no permanent cure i was given medications to slow down its progress, i constantly felt my health was deteriorating as i constantly go out of breath,and this illness was really terrible especially when am going out with my friends, i have this constant disorder for about 31 years, this was really a terrible illness ,on thin one day that i was going through the internet,and i came across a post of Mrs Kate on how his son was been cured from epilepsy through the help of Dr Williams herbal product, I contacted this herbal doctor via his email and explain everything to him and make purchase of his product,few days later he sent me the herbal medicine through courier service, when i received the herbal medicine i used it for 4 weeks as prescribed and i was totally cured of epilepsy within those week of usage,on thin now i have not experience any sign of seizure.if you need his help you can Contact this herbal doctor via his email drwilliams098675@gmail.com for help

    ReplyDelete

 
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