What Medications Does Your Baby or Toddler Take?

[Starburst]

Hello to everyone...
If you have a baby or toddler who takes medications for epilepsy, which ones have you tried? Although everyone's situation is different, I am just curious as to which medications are usually prescribed first, second, etc. for various ages. My son was born with epilepsy and is currently 2.5 years old. So far, he has taken:

1. Phenobarbital (birth to 6 months)
2. Keppra (currently weaning off this)
3. Topamax (will wean off of this soon)
4. Lamictal (just started but may not continue)

 

[jessicalt]

My daughter is 3 and newly diagnosed with petit mal seizures. We are currently taking Ethosuximide and although the seizures seem to have stopped, I am really not happy with the side effects at all....

 

[alonzo14]

My Grandson is two and has taken Keppra which was the first drug he was put on. Now he takes the Generic of Trileptal called Oxcarbazepine. His dosage was upped recently from 2ml morning 3ml evening to 3ml morning & evening. He has few if any side effects. Unfortunately my Daughter was told that as my Grandson Kei grew his medication needs might change.

 

[Starburst]

Update: My son is now three. He could not tolerate Lamictal or Topamax due to side effects, so he is back on Keppra. When he first started Keppra, there were disturbing side effects, but then he adjusted to the medication fine. I do not currently notice any side effects that he may be having.

 

[George__]

Baby and toddlers are still so young, their brains are still developing, puberty etc etc. Is this safe?

 

[jimj]

Baby and toddlers are still so young, their brains are still developing, puberty etc etc. Is this safe?

There is risk with most epilepsy treatments, but seizures themselves also present a risk. Unfortunately for many of us there is no simple, obvious right answer. Hopefully anyone coping with epilepsy has a good neurologist that will work with their patient to weigh the risks and choose the best treatment option for that specific patient. Epilepsy is not a one size fits all disease or treatment.

 

[Andrew]

everyone's situation is different

I'm a typical example of that. Vitamin B6 worked for me.

I have been prescribed Pyridoxine Hydrochloride (vitamin B6) for over 43 years of the sole purpose of controlling my seizures (many different types including Status Epilepticus).

Vitamin B6 was first administered when I was only five months old after a trial of antiepileptic drugs was unsuccessful.

I have been using a multi B complex tablet as part of my epilepsy medication since 1990. This helped to control an aura.

I have recently been diagnosed - via a genetic test - with an extremely rare condition known as 'PNPO Deficiency'.

http://ghr.nlm.nih.gov/condition/pyridoxal-5-phosphate-dependent-epilepsy

http://www.genecards.org/cgi-bin/carddisp.pl?gene=PNPO

I have also had a late diagnoses of both Dyslexia and Asperger's Syndrome.

http://www.autism.org.uk/asperger

http://www.autism.org.uk/living-wit...ches/biomedical-interventions/vitamin-b6.aspx

http://www.bridges4kids.org/news/9-02/ARI9-02.html

 

[Epileptic Boy's Mom]

Hi, my son is 2. His meds were/are as followed:
1. Phenobarb
2. Keppra
3. B6
4. Topamax
5. Clonazepam
6. Stiripentol

He has since been weaned off of Phenobarb just this past summer, B6 and Keppra were very short lived, Topamax was added when Keppra didn't work and we are currently weaning him off that now. Clonazepam was added late June and increased to 0.1 MG twice a day and he started on Stiripentol the beginning of October.

He has 2 genetic mutations that neuro and genetics assume is causing his epilepsy - SCN8A and SCN9A.

 

[Starburst]

Update: My son is now close to 5 years old. He is still taking Keppra but weaning off. A while back, we added valproic acid, which seems to be giving him better control over his seizures. If the next EEG is clear, the doctor will eliminate Keppra so that he is only taking one medication.

Baby and toddlers are still so young, their brains are still developing, puberty etc etc. Is this safe?

Believe me, I am not pleased about giving so many medications to a small child and resisted at first. However, I have an older son with epilepsy as well, so I have seen what can happen when the condition is out of control. A seizure at the wrong time and place has the potential to be fatal, so it is very serious and not something to play around with. Most of us parents are trying really hard to do what's best for our children and may be working with doctors who do not endorse or prescribe alternative treatments. We try to have faith that we (and they) are doing the right thing even though the unknowns are many.