Zachary- December
Thursday, September 24th, 2009 at
11:14 pm
and sink lots of money into research. That was within the last few years. Keep in mind this drug has been in existence since the ’40s. So because Questcor is a small company and they spent millions on the drug, they decided to jack the price up from approximately 00 a vial (which is about 10 shots) to 000 a vial. Initially our insurance outright rejected covering the drug. So we were stuck at the hospital while the insurance company, Questcor and the hospital figured everything …
he is just toooooo adorable!
love the belly laugh! so contagious =)
PRAISE THE LORD!! PRAISE THE LORD!! I AM SO HAPPY YOUR
PRECIOUS SON IS SEIZURE FREE!! I have Diabetes and it is not
fun being sick from anything. Dig the glasses. When he gets
older he may not have to wear them anymore-new research,
etc.. Hope so. I hope Zach will continue to thrive and be
a spectacular man he is to become. GOD BLESS.
your story i just one more to add to the laundry list of the pharm. companies getting us americas
pennycarolHello baby Zachary!! God loves you so very much. I love the beautiful laugh and giggles you are making in this video, you made me cry with joy!! Thank God for you, little Zachy. Thanks be to God for keeping you.
We love you Zachary – you are a cute little dude!
Thank you Uncle Willis and Aunt Beverly for your comment! We love you too!
Hello am Carol from California. My nephew just turn 7 months old today (july 7,2008).Last month the MD diagnosed my nephew with IS.The MD started ACTH IM INJECTION. Why your son wearing eyeglasses is that the complication of ACTH? Did the ACTH work with your son? Thank you vey much.God bless!
Hi Carol. My son is wearing eyeglasses because he is very far sighted. There are pediatric eye doctors who can determine a child’s focal length to give a prescript. ACTH did work for my son. After 6 shots, the seizures stopped for good. He was treated for another 6 weeks on the ACTH. The far-sightedness is not a complication of ACTH. ACTH brings weight gain & other side effects (some negative) if not watched and monitored closely by Drs. Let me know if I can be of any other help or support.
Hello! Praise God that your son now is very much free of seizures. Can i ask you something? How old your son was diagnosed with IS? Is there any seizure of your baby after the first ACTH INJECTION? Is your son was very hyper after the first ACTH?
My sister family live in London. So it is okey for you if they can contact you and ask some question?
Again thank you thank you so much for your respond.God bless you!
Hi it’s carol again. You can see my nephew @ youtube ,just type plandjm and you can c him .His name KARL.
Thank You. God bless always!
Thank you. Our son started having seizures at exactly 6 months old. He was diagnosed with IS/WestSyndrome immediately. It was another 3 wks until he was on the ACTH (tried vigabatrin 1st). It took 6 injections (1 a day) until he stopped having seizures. He was not ‘hyper’ but he did gain some weight. He was monitored closely by Dr.s while on it. Your family is more than welcome to contact me and ask questions. We are more than willing to help.
When my son was treated with ACTH on August 2006, it was $2500 a vial…and that was steep! The government should subsidize this medication as it can make all the difference for the children diagnosed with IS.
I am glad he is doing well and that ACTH worked for him. God Bless!
Thank you for your comment. The drug ACTH has worked wonders for many children with IS, and has not for others. I got wrapped up in the price issue as well. Although you comment about government subsidization makes sense, I often think that too many times gov’t is the problem and not the solution
Hi, after doing some research on (IS) I came upon to your youtube video, Zachary is a cute little baby, god bless him. my niece is 4 months old and she was diagnosed with (IS) her MRI results were normal, EEG results were not, The Dr. started corticotropin in injection, shes on her 5th vial. Is this the same injection your son had? and how long was he on it. and was he smiling a lot when he was asleep.
thank you much, God bless your family. !
What great, great, great news! Praise God for Zachary’s healing. There are tears in my eyes as I praise our savior with you! I am so happy for you!
he is super cute
uhh hes adourble
with his little glasses on
omg
Hi Charlen, I was doing some research of WS for my son ’s treatment who is 7 months old. I came upon to your youtube video, Zachary is a cute little baby, god bless him. Well I just want to share my problem with you, actually my son “Shaurya” is also facing the same problem.
Actually at the time of birth he was facing Hydrocephalus problem in his head. Now from last one month he had a problem with WS. Doctor suggested us to give ACTH for 30 days. ….*
Well starting 15 days she said to give 40 units which is 0.07/ML and after remaining 15 days asked to give 30 Units which is 0.05 / ML. we started giving ACTH initially 15-16 days its works, he was free with the seizure but when we reduce the Quantity of ACTH in 3-4 days than seizures came back. Doc said increase the amount same which has given 1st 15 days. So again we increase the Quantity which is 40 units. Now the problem is the ACTH course has completed of 4 weeks i.e 30 days on 7th July 09
Now again he is having seizures 4-5 in day with tine length is 1-2 mins.Now at this moment doctors prescribed TOPAMAC and Valprin Syrup.I am not able to understand what is the reason for seizures came back and how can I help my son . Please help me and please pray for my son Shaurya. Regards, Amit
When we first discovered Zach’s seizures, the neurologist gave us Sabril/Vigabatrin to give him. This was taken for 3 weeks but only lessened the seizures, it did not stop them. After 3 weeks, we made the decision with the neurologist to administer the ACTH shots. They gave him one a day and by the 6th day, he stopped having seizures completely. He went through a 2 month treatment of the ACTH and has been absolutely seizure free ever since. How is your son doing now?
I’m sorry the ACTH is not working for you. Is your neurologist helping in every way?
well my son Shaurya is 7 months old. our neurologist has asked us to give for 4 week course which was for 1 month. we did that. we have given injection 28 days. But as you have written you have given for 2 months. At that time what was ur son’s age ? what was the quantity of the injection which doctor has given to ur child ? Pls rply soon… Rgrds, Amit
My son was 7 months old too when we started the ACTH injections and 9 months when the treatment ended. Don’t know the exact quantity – it was reduced as the weeks went by.