trying to help my 3 yr old son... hello everyone :)

[jaxsawyer16]

Hi everyone! My name is Jackie and I just joined this site hoping to get some more information to help my son. He's 3 years old and in May of this year he had some fluid in his ears... his neurologist wanted an EEG test done and we were told he has abnormal spikes and that he's very high risk for seizures. He's never actually had a seizure though.

They started him on Trileptal that same day and he ended up being depressed from it. He just cried and cried. So we switched to Phenobarbital. Things were fine for a while until a couple months ago when his dosage was increased due to weight gain. After that his behavior and speech totally went out the window.

Hes an abnormally smart 3 year old... was speaking clear and in full sentences... you could sit and have a full conversation with him. Now, we can hardly understand anything he's saying, although he still thinks he's speaking properly because he gets frustrated with us not understanding him. I know cognitive dulling can happen because of the medicine but what's happened to him is extreme.

I wanted to take him off the medicines and try vitamins and other natural things, considering he's never had a seizure, but his neurologist was very against taking him off medicine and now wants to switch him to yet another medicine to see if his speech and behavior return to normal.

If anyone has any opinions or recommendations or anything they are greatly appreciated... I just want my son back and since the start of these medicines he hasn't been the same kid. thanks so much and sorry if this was a lot to read! op: lol

 

[jyearta]

Hi and welcome to CWE.

I can't believe a Dr. wanted your son on meds. if he has NOT had a seizure.

Have tried a second Neur. ?

When I have EEG and MRI they have. come back normal, and this is not non-common for many of us who are having seizures.

Being that he is on meds. I would put on him on Vit. B6.

I take B6, B12, Folic acid, Vit. D and calcium that I have compounded.

It would good if you started a dairy,noting EVERYTHING from his sleep pattern, foods, infections, stress there are more triggers.

 

[Nakamova]

Hi jaxsawyer16, welcome to CWE!

I agree -- a second or third opinion may be in order. Your instincts seem very sound. If you would like to see how your son does off meds, you should pursue that option. Given his lack of seizure history, it sounds like the odds are in his favor. (That, and the fact that the developing brain can often "grow out of" seizures.) If for some reason he had problems off meds, then you could always decide to try them again.

There are many dietary approaches to seizure control. Certain vitamins and nutrients are considered neuro-protective -- the ones jyearta mentions as well as magnesium and Omega3s for example. Kids with seizures are often treated with the ketogenic diet or the Modified Atkins Diet. Those are fairly restrictive however, so they are probably not the right path for your guy, given his lack of seizure history. If he's on a generally healthy diet, then that's a great start.

Good luck -- I hope you find a pediatric neurologist you're comfortable with, and that your son is able to return to his happy healthy self.

Best,
Nakamova

 

[jaxsawyer16]

thank you guys for responding

I know, we were shocked that he was thrown onto medicine right away as well, but the doctor pretty much scared us into it, talking about how high risk for a seizure he was.. and even recently when I brought up taking him off the medicine and trying vitamins she was so against it. Nothing against doctors, but I think she's the kind that relies on medicine over everything else.

I finally got an appointment scheduled for a second opinion at the end of this month..

I would very much like to take him off the medicine, try vitamins, and then go back for another EEG in the following months to see if the vitamins help correct whatever deficiency he has.

and speaking of the vitamins and deficiency he's having a blood test done today to check the levels of some of the main vitamins you're supposed to have... vit D, the B vitamins, folic acid, and magnesium.

I'm also curious, if anyone can give me some more information, the neurologist said the type of seizure he's high risk for is a partial seizure? I've looked it up but still not really sure what the outcome would be if he were to have one? I'm afraid if I take him off the medicine and he has a seizure (not probable but possible) that he will be worse off than he is right now on the medicine?

you guys are helping me out so much, thanks for your advice and kind words!

 

[LisaBee]

I agree with whats been said. There are people who have shown abnormal spiking on EEG's but never have a seizure. Sounds like that Neuro jumped the gun a little. Definately get a second opinion. I had to for my daughter and finally got some answers! Parents do know best! Good luck!

 

[Nakamova]

Partial seizures don't involve full loss of consciousness, so in that sense they are less "serious" than convulsive seizures. But simple partial seizures can involve strange sensory symptoms -- deja vu, distorted vision, phantom sounds, twitching, etc. -- that could be difficult for a 3-year old to process and/or describe. Complex partial seizures can involve impaired awareness (a bit like sleepwalking during the day), so that can also be a bit tricky.

But it seems strange that the neuro said he was at risk for those -- they are often the hardest to diagnose by EEG. Maybe she meant absence seizures? Those are the ones that can look like "daydreaming" or attention problems. The person "zones out" very briefly, without being aware that it has happened. A risk for those kinds of seizures can sometimes be diagnosed via the hyperventilation phase of an EEG.

Either way, these kinds of seizures are worth paying attention and perhaps treating if and when they start to happen -- but it seems a mistake to medicate a child before any actual seizure episodes have occurred. Good luck with the new neurologist and let us know how it goes.

 

[jaxsawyer16]

I know his neurologist has warned me to look out for the absence seizures... I could have sworn some of his papers mentioned partial seizures also.. but the way you described those it doesn't sound right. I'll have to look into it more thoroughly...

second opinion is this friday, thanks so much for the support

 

[MaryK]

Welcome to CWE.. I am so glad you found us. I cannot really add anything to the above excellent advice except to say I have taken phenobarbital for 40 years. I am wondering if his drug level is too high? Did the neurologist check the phenobarbital level with a blood test before increasing the dose?

Like everyone else I have not heard of anyone being diagnosed with epilepsy without a presenting seizure.

You are definitely doing the right thing by getting a second opinion.

As Jyerta mentioned above vitamin B6 is usually great for epilepsy, but NOT good for those of us on phenobarbital as it decreases the phenobarbital level in our bodies.

My best to you and your son. Please keep us posted.

 

[jaxsawyer16]

Hey everyone, hope you all had a wonderful holiday

just a quick update on Conner... I took him for his second opinion.. and when I explained everything to the neurologist her eyes about popped out of her head.. she told me that if he hasn't had more than 2 seizures he's not considered epileptic and should not have been put on medicine right away like he was.

she said that because of the stroke he had he has a 75% chance over his entire lifetime of having a seizure..he could never have one or it could be years before he has one, and that if he ever does have one that it would not cause any type of permanent damage... so we are now in the process of taking him off the medicine!! yay!! it will take 10 weeks, but I'm so happy.

She said there's no point in having him on medicine now considering he's not had a seizure when he could be building his brain and learning and everything else, since seizure meds are cognitive dulling.

also, for phenobarbital users, she told me that phenobarb is the WORST med to have kids on... she said that since Conner hasn't been on it long enough that once it's out of his system that he will go back to how he was before he started medicines. but she said that kids who are on phenobarb for long periods of time develop aggression and it lowers IQ over time among other things. she said that medicine has the longest list of side effects of all seizure meds and she would never put a child on it. there are other medicines that work well with children, and that isn't one of them.

I learned so much at his second opinion appointment, and also found his new neurologist she took the time to listen to my concerns and also explain everything in ways that I totally understood.. i'm so glad I followed my gut and went for the second opinion thanks everyone so much for the support!!

 

[jaxsawyer16]

Also, since we've slowly started bringing him off the medicine, he's speech is already started to come back... so I definitely think the dosage was wrong. He's only come down from 9ml 2x day to 8ml 2x day so far, and there's already a difference.

 

[jaxsawyer16]

MaryK I definitely think it was the dosage that was wrong.. but after finding out that it's not good for kids I'm glad hes being taken off completely.. his previous neurologist never checked his blood... she checked it when he first started medicine, and when he was first switched to the phenobarb, but not after she increased the dosage by double.. and when I had brought up to her about the dosage possibly being wrong she ignored me and just wanted to switch him to yet another medicine.

did you have any major side effects or anything from the medicine? I think it may just affect kids differently than adults?

I also had a blood test done recently to check his vitamin levels, and his B6, B12, and folic acid were all normal. his vitamin D was also normal but on the low side of normal... Im probably going to put him on a good multivitamin tho just to be safe like most 3 year olds he pretty much lives on chicken nuggets lol so I know he needs something extra...

 

[LisaBee]

That is great news. Glad you got the second opinion!!