Seizures and Pyridoxal 5 Phosphate

Tricia - posted on 04/29/2013

I have identical twin boys who began having tonic seizures at 3 weeks old they were 3 weeks premature. EEG showed seizure activity but MRI came back clean. A CSF test was done and showed low levels of p5p and high levels of therorine which indicate p5p deficiency. They were on a self compunded dose of 25mg twice a day. They became more alert and active and seizures tapered off. We are getting the liquid form of medicine and hope it puts the icing on the cake as well as genetic testing next week. Apparently it has various degrees and severe cases cant results in head deformities, mental and developmental delays, and death. When treated it is a complete 360. We have also been goving them phenobarbital and keppra until meds are stable.

Janet - posted on 03/28/2012

I remember it to have been a high dose. We gave a full capsule. If you would like I can look up the actual dose used in the Japanese study....

Janet - posted on 03/27/2012

My son responded in dramatic fashion when we started the pyridoxal 5 phosphate....seizures stopped within 24 hours and have never reoccurred. We found studies in Japan that were amazing. We mixed one capsule with breast milk and then syringed it into his mouth. Because the b vitamins are water soluble the excess is peed off. Should make sure you are giving a multivitamin and/or b complex too. I hope this is helpful! Peace to you

Colleen - posted on 03/20/2012

I know this is a reply to a super old post but would you be able to tell me what dose of P5P your child was on? I want to try it for my little girl but have no idea what dose to give her. Her neurologist has zero knowledge on anything but the prescription drugs and doesn't seem williing to try anything else. I hope this message finds you.

Sandy - posted on 02/05/2010

I don't have any experience with the pyridoxal 5 phosphate but I have some info that might be helpful. A few years ago I started giving Joey Melatonin an hour before bedtime. He is 11 years old and take 7 mg. a night. Joey was having seizures while trying to go to sleep while sleeping and upon waking up. The Melatonin is used to turn his brain down some so that he can fall into a nice deep sleep. It has worked very well. He sleeps much better and has more good energy to get him through the days. Most doctors won't recommend Melatonin. Why? Who knows? But we have had great success with him being a happier wide awake child during the day. Be careful of the Dilantin. It can hurt the kidneys and also makes hair grow. My son has had hair on his legs since he was little and the hair on his head is thick and grows faster. I wish you the best of luck in finding answers but I would definitely try the Melatonin and see if your son shows some improvement during the night.
Sandy Lora

Janet - posted on 02/05/2010

I have a 10 month old son, who is currently being worked up for p5p deficiency as well. He was developing normally and never had any issues until 7 months when he started to have cluster siezures also. He was admitted to the Cleveland Clinic for a week and his EEG was monitored. They found a pattern called a Hypsarrhythmia and he was diagnosed with Infantile Spasms. He was given an IV injection of Vitamin B6 (P5P) and started of oral supplements. His brain wave pattern started to correct itself within 24 hours after the injection. They did an MRI and Lumbar puncture and started the work up. All tests came back normal. They sent a genetic test for B6 deficiency which also came back normal. They just retested his original CSF(spinal fluid) and found that the P5P levels were lower then normal. We are now waiting for results of a second gene test. He is still of oral P5P and Klonopin three times a day. He has not had another siezure since we left the hospital 3 months ago and has continued to develop normally. P5P is a form of vitamin B6. The way that I understand it is that there are chemicals in the body that change B6 into a usable form (P5P). If there is a metabolic problem that affects this change the body cannot change the B6 into P5P causing a deficiency, therefore causing siezures. I have to say that we have dealt with wonderful doctors at the Cleveland Clinic who seem to know what they are talking about. We have had epilepsy doctors and a neurologist who specializes in metobolic disorders. I wish you the best of luck and hope you get some answers soon. I know how difficult and frustrating this situation is.