- Pregnancy
- Baby & Toddler
- Parents
- Getting Pregnant
- Baby Names
- Product Reviews
-
Registry
- Community
-
More
Want a personalized experience?
Download the free app
Special Needs
Any babies on phenobarbital?
Our DS has recently been diagnosed as having infantile seizures. (I posted the other day about us being in the hospital.) However they never found anything on the EEG and just started him on phenobarbital. They said that if he was having seizures deep in the brain that the EEG would not pick it up. He has some tongue and lip smacking after his episodes and then falls fast asleep. He also becomes blue and stares off into space.
I have heard good and bad things about the drug and the Dr. indicated that this is normally what they start small babies on. Has anyone else had any experience with having their children on it? I'm so nervous to have him on anything without them knowing exactly what is going on. Since they haven't been able to pinpoint seizures they are now going to be testing for reflux too. If you have any experiences that you would like to share I would very much appreciate it. TIA!
This discussion has been closed.
Re: Any babies on phenobarbital?
My son was on phenobarbital from about a month old until 9 months. He had 2 mild seizures in the hospital due to low calcium related to his syndrome. Anyway, I really wish we would have got him off of it sooner after we came home because now I know it can cause developmental delays. Granted, seizures can cause worse problems, but we knew our son's seizures were only because his calcium levels dropped too low. The drug suppresses brain function which can cause developmental delays, but it also helps diminish seizures.
I would talk to your doctor if you are concerned. It is used often in young babies with seizures. I would just make sure that your LO is truly having seizures. Don't be afraid to get a second opinion.
Good luck!
My son was on phenobarb for about 6 weeks starting at birth. He now is on keppra, which our neurologist says was developed to treat seizures and have less side effects. We are hoping to get him off of that soon.
I do think phenobarb is standard to start with. I have heard of a lot of babies being put on this.
Our LO was in the NICU for 9 days because of suspected seizures. The neuro sat us down when we got there and said if they found evidence of them they would start with phenobarbital. It's standard practice because it's usually the most effective. Once the seizures are controlled on phenobarbital then you can wean off onto another seizure med with less risk of developmental delays.
Depending on the type, frequency, severity of the seizures she warned us phenobarbital may be the only drug capable of treating the seizures.
Thankfully LO had no seizure activity and they attributed his "signs and symptoms" to something else, so I have no further input.
Hope your LO gets some help soon!
Thanks ladies for you input! They did not find any seizure activity either. The nurse did tell me that they put the youngest babies in the NICU on it so it did make me feel a little better.
They gave him a large dose to start with about 5 hours ago and I asked them to hold off on the night dose until he sees the GI doctor tomorrow. He is going to be testing for reflux and other GI disorders.
Toastie: Can I ask what his signs and symptoms are and what it ended up being?
Don't be freaked out by how he acts on the loading dose of pheno. My DS felt like a limp sack of potatoes the first few days and it scared me to death.
We also switched to Keppra after about 2 months, weaning slowly off pheno and onto Keppra. We have been happy with DS on the Keppra and he has had no more seizures that we are aware of.
Our DS had a cluster of seizures around 3 months, at which point he was also assessed as having low tone. We have no DX at this point.
Hang in there- I know it is very scary in the beginning.
My LO has hypertonia. he's been extremely stiff since birth. However the inital pedi didn't notice it, they attributed it to the stress from a difficult birth (he was black and blue all over) and kept giving him tylenol. Finally on his exit exam the pedi said they were "red flags" and that the stiffness was probably LO seizing.
While in the NICU he refluxed a lot and had a lot of apneas and bradycardias. He was also pretty lethargic because of jaundice .The nurse kept trying to convince us they were seizures and the neuro said no. They did an MRI, CT scan, and just followed his vitals. They never ran an EEG.
My son has been on it since he was a day old. They think a blood vessel that wasn't fully developed ruptured during delivery and that he had a stroke. He was in the NICU for 12 days and got the medicine every night. When he left the NICU we were to give him 4.5mL of 20mg Phenobarbital at bedtime. We are now down to 3mL. He hasn't had a seizure since he was 4 days old, that we know of. His neurologist is slowly weaning him off of it.
He's had 5 EEG's so far and 3 MRI's.
We did phenabarb from 36 hours old to 9 days old due to focal seizures, which were the result of a stroke.I was really nervous about the drugs, and noticed that they affected my guy in terms of him being pretty spacey...He's been off it since 9 days of age, and is no way near spacey now. It seemed to be out of his system in about 48 hours. The loading doses were the scary ones for us.
Seizures are so scary. Even the word is scary. Good luck with everything. It's hard to believe now, but things will get easier eventually.