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Old 07-27-2015, 01:41 PM
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infant with rare epilepsy


My 9 week old granddaughter is taking phenabarbitol, kepra, topimax for seizures. This combination is not controlling them and she sleeps constantly. We are so afraid of losing her. Drs. are saying Ohtaharra. Heartbroken....has any one else had other combinations of drugs ?
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Old 07-27-2015, 09:49 PM
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My heart goes out to your granddaughter and your family.
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Granddaughter is 14 months old! She walks, she runs, she climbs. Found at the top of a ladder once already - keeping her mama and papa busy
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Old 07-30-2015, 07:34 AM
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That's an awful lot of drugs for a 9-week old. I;m sorry to hear that Ohtahara is a likely diagnoses. The anti-epileptic drugs don't tend to have much effect with this syndrome. In one instance, an infant with Ohtahara responded to chloral hydrate. There were availability issues in the US, but worth asking her doctors about.
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Old 07-30-2015, 08:37 AM
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Welcome to CWE Robin!! This forum was made by Bernard out of love for his wife Stacy. That love permeates throughout the whole forum.

I sleep a lot but I am 71 years old. I have other health problems, too.

Keppra is a very strong medicine that can affect the kidneys. Keppra is affecting my kidneys. While she is on it, take Vitamin B Complex. Phenobarbital made me sleep a lot.

I would go to another doctor for a second opinion. Is your granddaughter seeing a neurologist? That is very important for your granddaughter.

Keep us updated as to how things are going.
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Old 08-02-2015, 07:38 PM
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I'm so sorry for your granddaughter! She will be in my prayers! I know this is a difficult time for you and your family, but try and focus on all the blessings you have instead of dwelling on the negative. My faith has helped me greatly to cope with my epilepsy, so I can only hope you will find comfort in whatever you can. Hugs!!!
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Old 05-15-2017, 10:15 AM
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Like most forums that have been around for a long time, CWE has thousands of members who joined at some point, posted once or twice and never returned. But the forum does send an email to them on the birthday listed on their account and occasionally, I get an email response back from them. I got one back from the OP this morning:
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... My grandaughter who passed away from a rare form of Epilepsy would have been 3 tomorrow. Our "rainbow baby" was born yesterday. Bittersweet...as we still, and will always grieve Hazel. I pray that one day no child should suffer. ...
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New to CWE? I suggest reading the proactive prescription and epilepsy 101 threads. Also check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback. More great stuff can be found in the list of the best forum threads.

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Old 05-15-2017, 11:24 AM
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Rest in peace, Hazel. I'll remember you, not only by these posts but by the immense fondness and kinship I feel for all of us affected by epilepsy, all of us who've passed away, all of us who live on. I too pray that one day no child should suffer. I'll light a candle for you tonight.
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Old 05-15-2017, 01:50 PM
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Rest in peace, Hazel. I pray for Healing for all those who bear the cross of epilepsy, whether they are well-controlled or suffer daily.
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Old 05-15-2017, 05:49 PM
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I had my first seizure when I was two weeks old. I have an extremely rare condition known as 'PNPO Deficiency' - now diagnosed via a genetic test.

Here is my story: http://www.coping-with-epilepsy.com/...amin-b6-11674/

Quote :
Other names for Ohtahara syndrome

Early infantile epileptic encephalopathy with suppression bursts
https://www.epilepsy.org.uk/info/syn...ahara-syndrome

Quote :
Mutations in pyridoxine 5′-phosphate oxidase are known to cause neonatal epileptic encephalopathy.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2781495/

http://discovery.ucl.ac.uk/1413008/1...0412%20(1).pdf

https://www.guiametabolica.org/sites...ciency_eng.pdf

https://cdn.intechopen.com/pdfs-wm/35742.pdf

Quote :
Neonatal Vitamin-responsive Epileptic Encephalopathies
http://memo.cgu.edu.tw/cgmj/3301/330101.pdf

Something to mention to your granddaughter's specialist/doctor if it has not already been covered.

As I have mentioned above my condition is extremely rare.

**DO NOT ALTER ANY MEDICATION WITHOUT YOUR DOCTOR'S CONSENT**

Kindest Regards,

Andrew

Last edited by Andrew; 05-15-2017 at 05:53 PM.
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