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.


17 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!

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

    ReplyDelete
  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
  7. I am Shelley from Los Angeles,California, I want to testify on how i got cured from seizure, I have suffered from seizure since the year 2011 with so mush anxiety ,that i have to spend so mush money getting pain relief in the hospital, and I have visited several doctor ,but all to no avail, my world was gradually coming to an end because of the fainting and muscle spasms , until i saw a post in a health forum about a herbal Dr Williams who use herbal portion in curing people from different kind of diseases including seizure, at first i doubted if it we be able to cure my Generalised tonic-clonic seizure , but i decided to give it a try, when i contacted this herbal doctor via his email, he prepared a herbal portion and sent it to me via courier service, when i received this herbal medicine, he gave me step by step instructions on how to apply it, when i applied it as instructed, i was completely free from seizure just for 1 months of usage,i we recommend this to all my friend family in the world today who still suffering from seizure you can contact him through his email on drwilliams098675@gmail.com for help.

    ReplyDelete
  8. "With Dr Williams,herbal medicine I felt very empowered after my son started his medication and the results came very quickly I might add. Contrary to what my doctor had recommended for my son, (that epilepsy have no permanent cure) I have succeeded in less than 4 weeks to treat all the symptoms associated with my son epilepsy (including the anxiety , and the abnormal behavior ) and within 4 weeks, my son epilepsy was completely gone. Thank you so much for this terrific publication. I also my son have recently experienced a symptom-free of headache , which was nothing short of remarkable, considering the awful state my son was in before I was introduced to dr williams life changing medication,for more information on how to get his medicine you can email him in drwilliam098675@gmail.com

    ReplyDelete
  9. I am Shelley from Los Angeles,California, I want to testify on how i got cured from seizure, I have suffered from seizure since the year 2011 with so mush anxiety ,that i have to spend so mush money getting pain relief in the hospital, and I have visited several doctor ,but all to no avail, my world was gradually coming to an end because of the fainting and muscle spasms , until i saw a post in a health forum about a herbal Dr Williams who use herbal portion in curing people from different kind of diseases including seizure, at first i doubted if it we be able to cure my Generalised tonic-clonic seizure , but i decided to give it a try, when i contacted this herbal doctor via his email, he prepared a herbal portion and sent it to me via courier service, when i received this herbal medicine, he gave me step by step instructions on how to apply it, when i applied it as instructed, i was completely free from seizure just for 1 months of usage,i we recommend this to all my friend family in the world today who still suffering from seizure you can contact him through his email on drwilliams098675@gmail.com for help.

    ReplyDelete
  10. CURE TO EPILEPSY WITHOUT ANY SIDE EFFECT: My son was diagnosed with epilepsy. My son epilepsy was something i don't understand he cry so bad that he was usually in bed for about 8 hours and soreness killers (even prescription strength) don't stop the crying (except taking him out) even if he take triple the dosage. my son symptoms was really so bad,that we have to make hospital our home, and all the doctors would do is monitor it, prescribe him countless of control pills and pain medication with no positive result. until recently I contacted a Doctor who put an end to this problem. If you are having same problem with epilepsy son contact Dr. William for advice and possible solution without any side effect (drwilliams098675@gmail.com

    ReplyDelete
  11. Just wanted to say a huge thank you to Dr Williams for everything he have done in my life. I have been in tears for so many years now, having found that my only son is suffering from seizure, lesion after some years of being under extreme stress., . I spent 24 hours freaking out and finally calmed down after reading some testimony on here about Dr Williams herbal medicine to seizure. The moment came and I mumbled out to my husband about Dr Williams product (with a few tears) and he was AMAZE – . He was just worried about our son been free from this disorder that was how will order for Dr Williams product on line , after my son finish taking Dr Williams medicine for just within a period of one month. Will went to the doc together who confirmed that he was seizure free.
    Thank you again for being upfront, truthful and taking this pain away from my family for more information about his product you can email him on drwilliams098675@gmail.com i hope you can also help other terrified people in a similar situation.

    ReplyDelete
  12. I recently have some difficult conversations and I did what a lot of people do when they want to know how to do something. I googled it. I came across Dr Williams herbal medicine on YouTube so many people thanking him about his good work. I also have epilepsy. I wasn’t running all over God’s creation with every man I could find but here I am. I have felt bad about myself for so many years now because of my epilepsy status. I obviously still have some self-accepting to do but I want to thank Dr Williams for everything he have done for my family ,after taking Dr Williams medicine i was completely free from epilepsy within one month of usage, I think what you are doing is so admirable. you have helped me a lot! I want to definitely reach out to you and thank you for your amazing work. You are a good person, and an extremely talented man. You have helped millions with your herbs, and have really inspired me,and i pray you still continue doing the good work.you can also email him on drwilliams098675@gmail.com for help

    ReplyDelete
  13. With Dr Williams herb i was completely free from epilepsy.You are an amazing doctor.Matching diagnosises aside, I just want to be your friend. Lol You inspire me on a feminist level. On an intelligence level. you are a good man doing so much for mankind, level.Thank you for being you.For keeping a lot of us . For reminding us that we aren’t a fucking statistic or a status, we are still PEOPLE. With brains and personalities and jobs and lives.I’ve been diagnosed for so many years now with epilepsy, and the roller coaster of emotions is all too real.I’m sure I speak for everyone here when I say thank you. From the deepest part of my soul. THANK YOU.You give us all an indescribable level of comfort and absurdness in sharing our diagnoses and, almost a green light to continue to celebrate our lives,for you always been there.For every jerk who throws you hate, there are hundreds of us thanking the universe for you.for more information about Dr Williams product to epilepsy you can email him on drwillliams098675@gmail.com

    ReplyDelete
  14. Thanks to Dr Williams I am so happy today, my wife have been suffering from epilepsy for so many years now, and i have spent a lot on western drugs which has all proved abortive, i have tried all means in life to get my wife out of this , but there was no answer until i decided to try herbal solution and i found Dr Williams online and i contacted him and after she took his medication as instructed, my wife is now completely cure from epilepsy within one month of usage, i am so much happy, thanks to Dr Williams for helping me get my wife life back again without any form of crisis, i promise to tell your name and good deeds to the whole world,if you have someone with epilepsy you can email him on drwilliams098675@gmail.com for more information .

    ReplyDelete
  15. 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 when 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
  16. 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
  17. ALL THANKS TO DR WILLIAMS FOR THE GREAT DEED HE HAVE DON FOR MY FAMILY.This information will be useful for Epilepsy patients who is willing to use herbal medicine. My daughter had temporal lobe epilepsy, She had seizure and had a grand mal with rage episode. Our daughter's seizure is constant throughout the day. We had used several medicine which include: Epilim and Keppra, experience seizure control at the cost of serious debilitating side effects. It was during a casual conversation with a friend that I learned about herbal Dr. William,who uses herbal medicine in curing people from epilepsy,i was so glad to contact him on his email and make an order for his medication, it does not have any side effect. I am so glad to say that she has been seizure-free since July 2015 after taking William medicine. this a miracle cure?contact him for more detail (drwilliams098675@gmail.com) thanks once again admin for such an informative blog.

    ReplyDelete

 
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