Hello-21 mon old new onset

[Aurie]

My DD was just diagnosised with having seizures. You would think I would know about all this as I am an ER RN. However, I feel like I just walked into my own living room and don't recognize it, if that makes sense. I guess I was simply taught generalizations and how to deal with the big stuff and not necessarily all the variations of this increasingly complex disorder.

DD (age 21 months) has had 3 witnessed tonic episodes, 2 by me and 1 by DH with post-ictal episodes following. It kind of bothered me that her doctor (neuro) barely looked at her and took my word for everything (he didn't know I was an RN) and then jumped straight to putting her on phenobarbital. The MRI and 2nd, 30 min EEG study isn't until May. 1st EEG was done by her pedi after the second episode and was normal.

She takes it before bed. This is her 4th night on it. She has been very crabby during the day since being on it. She is usually such a happy little baby. This new behavior is bothering me enough to question whether or not she really needs to be on it as of now without further evidence.

What also bothers me is the torture to get her to take it. It must taste awful, because she has always been good about taking her medicines. This is such a fight and we have to hold her so tight to get even half of it down her.

I guess I am looking for opinions on the quickness of the diagnosis and jumping straight to phenobarb and how to add that spoon full of sugar (which didn't work, btw) to help her take the meds a little easier. She is on the liquid phenobarb.

Thanks for all your help and sharing your experiences

Just wanted to add as an FYI: DD is an identical twin. Her sister seems unaffected so far.

 

[hawke86]

If you don't agree with the diagnosis get a second opinion.

 

[Heather]

If you have a bad feeling about the neuro, get a second opinion and prob find another neuro altogether. If I had changed neuros instead of ignoring my gut feeling, I wouldn't have had some of the problems I had in the past. Also, speak up, if you have a bad feeling about something. Doctors don't know everything. I used to think, they know better than me because they're the doctor and have been doing this for so long. But that's not neccessarily true. Listen to your gut instinct.

I took pheno as a kid. I don't remember it tasting bad. But I stuttered so bad, I could hardly say hello. And I had problems in school. As soon as I got off the pheno, stuttering went away and I was doing better in school. You may need to change meds, if she should be taking AEDs at all.

 

[skillefer]

Hi Aurie! Welcome to CWE. I was diagnose when I was about 3 with Ideopathic seizure disorder (another fancy way of saying, wow, you have seizures and we don't know why..) Anyway, I was on phenobarb from age 3 to 5...taken off it by a different doc, and then put back on it when my seizures came back at age 13. ( Gotta love puberty.) Like your daughter, I have tonic clonics. Anyway, it can take a bit of time for a child to get used to taking meds. And honestly, phenobarb does taste awful. It can take time for meds to build up and and work, and the body to adjust. so it might be that your child is cranky because she's feeling the lethargy that comes with most AED's. That should pass after a bit.

You said your concerned about how quickly the doc put her on meds. Understandable. But you have to remember, it only takes 2 seizures to get us labeled with epilepsy, and he/she is focusing on you during the appointments because at 21 months of age, your daughter can't really give him/her the specific info they need. You on the other hand, have actually seen the episodes, so you are the best source of info the doc has. Don't be surprised if the EEG's come back normal. I've had seizures for over 30 years, and only one of my EEG's ever came back as anything other then normal. An EEG is only good if there's actual seizure activity going on while they do the test. An MRI will be good for seeing if there's any biological issues with the brain...stuff like that. The doc put her on meds quickly because they want to avoid kindling. Kindling is when the brain teaches itself to respond to stimuli by having seizures. The more uncontrolled seizures there are, the more likely that this will happen. Then, getting meds to work can be very hard. And the longer a person goes with uncontrolled seizures, the worse the outlook for them in the long run.

AS for the meds...have you tried mixing it with her food at all? I'd suggest mixing it in with something really sweet as the phenobarb is bitter. So maybe mashed bananas. If you want, you can look at some of the alternative treatments available. You can use them in conjunction with the meds, or on their own. Most docs I've met have no issues with using them in conjunction with the standard medication therapy. They do have issues if the patient chooses to use it as a stand alone therapy. however, some people have found alternative therapies very successful in controlling their seizures.

You might want to see if the doc will run a test for food allergies. Some food allergies can trigger seizures. As can spiked fevers, and diabetes/low blood sugar. Ask them to run those tests too. I'd hate for your child to be put on meds, only to find out later that it could have been controlled by a change in diet. Dietary changes can be difficult to do as a teen or an adult. Also, ask them to run a complete blood workup for hormones, and vitamin and mineral levels. Sometimes, Magnesium deficiency can trigger seizures too. Ask for a blood test to check your child's blood sugar levels if they can. Especially if there's ANY history whatsoever of diabetes in your or your husband's families.

If your breastfeeding, remember that what you eat, your child eats....so if your blood sugar is all over the place, that's not good either. ANd, if you are using formula, you might want to see if she's allergic to milk, since most formulas are milk based. Soy formulas aren't, but they can cause other problems later on with early onset of puberty. Hope this helped!

 

[Meetz1064]

Awwww

I remember being on phenobarb when I was little, also. I was diagnosed at 13 months. Stuff was NASTY.....BLACHHHHHHHHHH. EWWWWWWWWW. *eyeroll* I remember being soooo excited to start taking the pills. My parents thought I was thoroughly off my rocker.

However, pharmacies do now have the ability to add flavorings to liquid meds. See if they can do that to the liquid phenobarb....they may not be able to without causing a change in the chemical makeup of the med, though. But ASK. It never hurts to ask.

The doc probably put her on pheno to start because there are some AEDs that are NOT allowed to be used on children under a certain age. Some of those ages are 16, some are 8, you get the idea....so he's working with a limited set of choices, I think.

The others have brought up some valid points.

If you're not comfortable with the neuro, get on that doctor merry-go-round, and go doctor shopping. OK, it's a pain in the ARSE, but it's your daughter's life, and she's worth it, right?

Food can definitely be a trigger. I use the GARD diet to help control my seizures as much as possible. I know when I've blown it too badly, trust me. Since she can't tell you, as Skilly pointed out, watch for different signs and WRITE IT ALL DOWN. OK, that's a pain in the ARSE, too. See my statement above.

An important note about EEGs. They only capture activity for the moment in time that the patient is hooked up to them. For example: Right now, I am hooked up to a portable EEG, and have been since Monday afternoon. The blasted thing won't come off until 10:30 Friday morning. So, I look like the Bride of Frankenstein............BUT. IF there is any seizure activity going on during those 4 days, it will be recorded. Since I have several types of seizures, it's entirely possible that I will have some, but I hope not. Mine are all nocturnal--or happen in my sleep.

Does any of that make sense? Heavens, I hope so, I think I was rambling.

Take care, and good luck.

Meetz
:rock:

 

[DanaC]

Hi, Aurie. My daughter Ana (one of fraternal twin pair) is 21 months as well and had 3 seizures between 14 and 17 months (however the last 2 were status). She was put on Depakine after the second one and, as we all know, that's what it takes to diagnose: more than once. Hers is liquid and has cherry flavor and she actually comes running and calling her name when the alarm rings each evening. I understand phenobarbital is bitter, but maybe it really works when adding some nice flavor.
As for the other suggestions I have only positive feedback to give. We are diary free (except for the formula which they still get daily but we've come to half diluted already, and hope to eliminate it entirely when they're 2), we're gluten free and eat only biological food. We made the transition gradually since it seemed at first difficult, but once you decide it's not really that bad. It's just easier to say, like I used to, "I'm eating healthier than all my friends, what more should I do?", but even if that's true, that's still a lot more we can do. I can't give advises in this respect, my child is on medication and I'm actually hoping that the changes we brought keep her away of seizures, and not the medicines. But how can we be sure? We can only pray this is the case and if God makes that she won't have any for another year and she'll be taken off medication and still be ok, even than we won't know. What I want to say is that there's actually valuable information in this respect and it might help. We've been really upset at the thought of giving her medication daily, and really wondered if that's the right step, however her situation was worse (with status) and even if at each visit to her neurologist we feel there's so much he doesn't wanna listen or care, still didn't have the courage to keep her unmedicated. We tried to identify what happened actually at 14 months, why never before? She's started day care and all her seizures were with a big infection/vaccination, she had lots of cheese spread since she loved it at crèche... it's impossible to be positive about the cause, maybe you can identify some triggers in your daughter's situation. And I'm positive some dietary changes can do only good. All the recommendation for things to be checked, all important and should be done not only if you're considering it might be something else. This site is amazing and has so much information to give you. Lot's of good luck. We hope we all have only good news.

 

[Belinda5000]

Hi Aurie,

I was dx'd when I was two but my seizures started before then.
I'll be starting mt 20th med Today for my seizures.
When someone has a 2nd seizure there usually thought to have epielepsy.
Did her doc do any test on her? to determine she had seizure activity like an EEG?If he hasn't I'd find a new doc.

Belinda:twocents:

 

[Aurie]

Thank you everyone for your well informed replies. I am going to re-read everything a couple of times to help digest it all. I was so upset with how she was reacting to taking the medication and how she was cranky and not sleeping while on it that I stopped it the last two nights. I am going to regroup and start again. Poor baby to have such an indecisive mother.

 

[RobinN]

Hi Aurie - It took me a while to learn this bit of info...
Epilepsy is only a label. It only means two or more unprovoked seizures. What you need to be looking at is WHY is she having seizures. Look for the cause. Sometimes the cause can not be changed, or healed, but there are other times it can be.

If my daughter's doctors could have their way, she would be on the meds or trying new ones every 6 months. We have now found, after keeping notes on a calendar and finally getting approval to have her tested, that she is hypoglycemic. There is something called reactive hypoglycemia. This is due to some type of food reaction. I would never have found this without internet searches. I continue to search for info that pertains to just my daughters symptoms.

Deficiency in vitamins and minerals can also cause seizures. Doctors simply will not begin to consider this, due to their lack of training in this specialty.

The first two years after my daughter began having seizures were horrific while we tried the conventional medical treatment for seizures. As I learned more I have been able to get the neurologist to follow alternative treatments that have controlled her far better than any med did without ANY side effects. More about this treatment is written in my blog, linked below.

 

[clairekerzner]

Hi Aurie,

I've just joined up too because I'm having the exact opposite problem to you- my five-month-old daughter has been on liquid phenobarbitol since birth and has just been weaned off it. I came on here because she's having exactly the same reaction you've described- super cranky when she was previously very happy- and I'm worried it might indicate some sort of seizure activity. Now I'm thinking it might just be an adjustment to the medication or lack thereof after hearing your story.

Funnily enough we had the same sort of experience with doctors who didn't seem too fussed with the situation. Sophie had seizures after a difficult birth left her with serious brain damage, and at three months her specialist paediatrician decided we should stop giving her the phenobarb even though we hadn't had a follow-up EEG to check on seizure activity in her brain. I refused to do it until we talked to a neurologist and had an EEG scan. The scan came back normal, so we've now taken her off.

I doubt it'll help you, but our daughter takes the phenobarb through a bottle teat. By the time she's sucked it down it's gone past her tongue and she hardly seems to taste it. I don't know how it tastes, but it smells like nail-polish remover. Horrible stuff.

Hope you find some answers soon, and good luck.

Claire