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#1 of 22 Old 11-23-2013, 12:23 AM - Thread Starter
 
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I am a peds nurse and I know textbook what the side effects are. But how does it affect your kids day to day? Most of the patients I give it to (and similar class meds) are severely cognitively impaired and unable to communicate their feelings to me. They generally take these meds for seizure disorders.

 

My dd has terrible migraines and we are about to see a neuro specialist. She was recently taken to the ED for a migraine that was getting to be unbearable, and she was given a headache protocol: saline bolus, benedryl, reglan, ketoralac. When that didn't work, she was given depakote (valproic acid). It worked great to break the migraine and she's been free of it for a couple days now. Doing some research on pediatric migraines, it seems that prescribing lamical or depakote is a common treatment. She was so drowsy for about 24 hours following the depakote treatment and said she felt dizzy and had numb hands and feet. I don't want this medication to affect her quality of life or her ability to think clearly. Just wanted to hear from others on this class of meds and how it has affected your children.


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#2 of 22 Old 11-23-2013, 01:22 AM
 
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I'm not very sure about the meds,I haven't had experience with them but my sister(whom I live with) had a very similar situation with the migraines. The dr ended up putting her on Imitrex on an as needed basis. When she has a headache she takes one pill every 2 hours or so to either get rid of it or for it to keep from getting to an unbearable level. They found that she got them around her period time, or if she was very hormonal.
I'm no dr, just a lowly Pharm tech, but I hope your DD feels better!
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#3 of 22 Old 11-23-2013, 01:42 AM - Thread Starter
 
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I'm not very sure about the meds,I haven't had experience with them but my sister(whom I live with) had a very similar situation with the migraines. The dr ended up putting her on Imitrex on an as needed basis. When she has a headache she takes one pill every 2 hours or so to either get rid of it or for it to keep from getting to an unbearable level. They found that she got them around her period time, or if she was very hormonal.
I'm no dr, just a lowly Pharm tech, but I hope your DD feels better!

 Thanks-- my mom takes that, too. I am not sure it's used for kids though. I hope the neuro doc can come up with a plan that does not make her a zombie but controls the headaches.


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#4 of 22 Old 11-23-2013, 05:12 AM
 
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My ds took stavzar, which is a form of valporic acid, like depakote,  that is extended release.  He was on it for 6-8 months for seizures when he was 10.  It was mostly effective for seizures.  We took him off because of behavior and we started to see partial seizures again while on it.  The school loved it  because he became the best academic version of himself.  He was always in a bad mood at home (easy to upset) and interacted less with friends.  He was constantly hungry (school asked us to send him extra food because he was frequently complaining of hunger), but really he only wanted to eat grilled cheese sandwiches fixed a very specific way.  The dizziness and nausea was short lived- maybe a week or two to adjust to the med.  With depakote, make sure the neuro does regular blood tests because it can affect the liver.  

Ok, as long as we are talking side effects... my ds is part Asian.  A number of medications including lamictal come with a warning about a skin rash.  There is a genetics test that can be done to check for a specific gene “HLA-B*1502”; if the person has this gene, then more likely to have skin reaction to a number of the medications that can cause the rash that are used for neurological treatment.  My ds takes carbamazapine/tegretol, and he had to have the test before dr would let him take because the dr had personally had Stevens Johnson syndrome and did not want ds to experience it.  Even without the gene, a person on these medications can develop it, but the chances are lower.  The test is required in many Asian hospitals, but can be harder to get here.  It took a year for ds's doctor to figure out what needed to be done.  

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#5 of 22 Old 11-25-2013, 03:49 PM
 
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I take lamictal for seizures myself, so I don't know for sure if the side effect will be similar in a child.  I had significant side effects the first week or so of taking it.  I felt dizzy and sort of fuzzy brained, hard to think clearly.  After that, I have had hardly any side effects.  The only thing I hate about it is that after the last 7 years of being on it, I actually experience dizziness, fuzzy brain, and a shakiness when I forget a dose.  


 
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#6 of 22 Old 11-26-2013, 07:02 AM
 
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Queen of the Meadow,  we know when ds has missed his pill, too, because he acts like he is tipsy.  His judgement can be slightly impaired (becomes more daring or impulsive) and his coordination gets off.  

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#7 of 22 Old 11-29-2013, 07:09 PM
 
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Several people in my family take lamictal as a mood stabilizer but with the benefit of boosting confidence and repelling headaches.  Missing a dose is *bad*.....  I have been taking it for a number of years now and when I miss a dose I know as soon as I wake up - the mere thought of coffee makes me nauseated.  I suspect it has also monkeyed with my sense of smell and slows word recall (aggravating!).  All that being said, if I didn't take it, I wouldn't be able to function. For various reasons it has been prescribed for both of my daughters.  We tried other meds before lamictal but it's the one that seems to work best with our body chemistry.  It's a tight rope act to find something effective, tolerable, and old enough that long term effects are known.  

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#8 of 22 Old 11-30-2013, 12:51 AM - Thread Starter
 
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Thank you for all your feedback! good to know and talk to the doctor about. Her headaches came back after just four days, and she started to feel like fainting last night and almost did. She had a full heart work-up as a baby with echocardiogram (u/s of the heart) and no defects, but I want to also ask for an EKG to rule out arrhythmia's. This neuro appt. can't come soon enough. :-(


7yo: "Mom,I know which man is on a quarter and which on is on a nickel. They both have ponytails, but one man has a collar and the other man is naked. The naked man was our first president."
 
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#9 of 22 Old 11-30-2013, 04:58 PM
 
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:-( hope you are able to figure out what's going on so your dd feels better.  

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#10 of 22 Old 11-30-2013, 05:05 PM
 
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I hope things are getting better. I'm not sure if anyone asked and its okay if you don't want to share, I was just curious how old she is? I was just curious because I know the types of medications differ slightly with how old the child may be.

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#11 of 22 Old 12-02-2013, 02:20 PM
 
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You probably already thought of this, but I wasjust reading an article about celiac disease and migraines and I just thought of your dd. I figured it couldn't hurt to throw it out there!

 
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#12 of 22 Old 12-08-2013, 03:51 AM - Thread Starter
 
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You probably already thought of this, but I wasjust reading an article about celiac disease and migraines and I just thought of your dd. I figured it couldn't hurt to throw it out there!

My celiac kid is my older one and not suffering from migraines, thank goodness. Just attitude at age 13 (in 2 days). ;-) But I did think about dietary triggers. 


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#13 of 22 Old 12-08-2013, 03:57 AM - Thread Starter
 
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Thanks for the advice and input. I really appreciate it! So she saw the neurologist and she agrees it's migraines. She has chronic daily migraines to be exact. :-( Pain 5-8 out of 10 constantly. Apparently the dizzy spells are part of it and she does not have a cardiac or BP problem, or sugar problem. She said to try Periactin for 2 months in increased doses, and Naproxen also. She took Periactin as a younger kid for her feeding aversions and it did give her an appetite. But now I noticed it's really making her sleepy and I don't want to give it except before bedtime. Yesterday since it was Saturday I gave her an after lunch dose and she immediately fell asleep, and then a bedtime dose. She says it's not helping her headaches at all. The Naproxen that I give in the morning seems to be helping a little bit but she's still squinting in the light, holding her head sometimes, and not wanting to run because she says it makes her head bounce inside. Oh, and we have Imitrex for unbearable migraines but only 9 tablets. What's unbearable to me is the constant headaches interfering in her quality of life. So we will stick to this for now. The doctor did say it may take several months to figure out what works for her, but try this for awhile and see her 2 months.

 

Someone asked her age-- 10 in January.


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#14 of 22 Old 12-13-2013, 07:50 AM
 
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If the Periactian(sp?) isn't working I would give it a week or so and then call. With my DS we would try a new med and it would be very obvious if it would work or not work with in that first week. I wish you luck tho!

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#15 of 22 Old 12-13-2013, 01:39 PM
 
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If the Periactian(sp?) isn't working I would give it a week or so and then call. With my DS we would try a new med and it would be very obvious if it would work or not work with in that first week. I wish you luck tho!

I do not know about this medication, but some take time to build up in the system to be therapeutic.  Also, some medications require a slow build up to the proper dosage and slow removal, when you go off them.  I know that is the case for depakote and lamictal.  

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#16 of 22 Old 12-13-2013, 01:42 PM
 
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Thanks for the advice and input. I really appreciate it! So she saw the neurologist and she agrees it's migraines. She has chronic daily migraines to be exact. :-( Pain 5-8 out of 10 constantly. Apparently the dizzy spells are part of it and she does not have a cardiac or BP problem, or sugar problem. She said to try Periactin for 2 months in increased doses, and Naproxen also. She took Periactin as a younger kid for her feeding aversions and it did give her an appetite. But now I noticed it's really making her sleepy and I don't want to give it except before bedtime. Yesterday since it was Saturday I gave her an after lunch dose and she immediately fell asleep, and then a bedtime dose. She says it's not helping her headaches at all. The Naproxen that I give in the morning seems to be helping a little bit but she's still squinting in the light, holding her head sometimes, and not wanting to run because she says it makes her head bounce inside. Oh, and we have Imitrex for unbearable migraines but only 9 tablets. What's unbearable to me is the constant headaches interfering in her quality of life. So we will stick to this for now. The doctor did say it may take several months to figure out what works for her, but try this for awhile and see her 2 months.

 

Someone asked her age-- 10 in January.

Glad you got into the neurologist and hopefully you will figure out a good treatment.  

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#17 of 22 Old 12-13-2013, 02:10 PM
 
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My celiac kid is my older one and not suffering from migraines, thank goodness. Just attitude at age 13 (in 2 days). ;-) But I did think about dietary triggers. 

Ahh, gotta love the 13 yr old attitude! 


 
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#18 of 22 Old 12-13-2013, 04:44 PM
 
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I don't know anything about the other but my son takes Lamictyl for Bi-polar...He does great with it..they do test his liver periodically but other than that he has had no side affects...

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#19 of 22 Old 12-13-2013, 06:01 PM
 
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Several people in my family take lamictal as a mood stabilizer but with the benefit of boosting confidence and repelling headaches.  Missing a dose is *bad*.....  I have been taking it for a number of years now and when I miss a dose I know as soon as I wake up - the mere thought of coffee makes me nauseated.  I suspect it has also monkeyed with my sense of smell and slows word recall (aggravating!).  All that being said, if I didn't take it, I wouldn't be able to function. For various reasons it has been prescribed for both of my daughters.  We tried other meds before lamictal but it's the one that seems to work best with our body chemistry.  It's a tight rope act to find something effective, tolerable, and old enough that long term effects are known.  

 

 

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Queen of the Meadow,  we know when ds has missed his pill, too, because he acts like he is tipsy.  His judgement can be slightly impaired (becomes more daring or impulsive) and his coordination gets off.  

I've only known one other person who takes it, and she takes it at a much lower dose.  I had no idea that other people had the same side effects.  I go through the coffee thing too!  Very strange, but good to know!


 
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#20 of 22 Old 12-14-2013, 01:05 AM - Thread Starter
 
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This has been an interesting discussion! Well the Periactin/ Naproxen combo seems to be working somewhat. Maybe it is a cumulative effect. Also the doctor wanted us to increase the Periactin dose by 1/2 tablet at bedtime every 1-2 weeks. So now she's on a full tablet. She says the last few days her headache starts to go away after her morning meds, and then it comes back in late afternoon. But not as bad as before. The neuro did say it's going to be a slow process, not something that happens overnight. Let's see . . . 

BTW for those of you who were wondering, Periactin is a very old antihistamine. They sometimes use it to increase appetite in cancer and other types of patients. I didn't know it was used for pediatric migraines until it was suggested for my dd.


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#21 of 22 Old 12-29-2013, 08:51 PM
 
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Have you considered acupuncture? Needles might freak a 10-year-old out, but I was almost 12 when my migraines started. They were unbearable and became increasingly worse. By the time I was 18 I seriously thought about suicide to end the pain. At 22 I had acupuncture for the first time. I improved slightly after about 6 treatments.(By the way, I was on Imitrex all this time). I traveled to Asia, found that codiene was over the counter there, and it did wonders for me, so I stopped the acupuncture. I relied on codeine for years (traveled to Asia regularly for work, and stocked up each time). Eventually I went to a different acupuncturist for back pain, told him also of the migraines, and he treated both. After 3 treatments I did not have to rely on codeine. 2 more treatments and I did not have a migraine for months. I haven't had acupuncture in years, but I now only get one or two headaches a year ( and pop codeine when I do) which is amazing to me. Just wanted to throw that idea out there for you.
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#22 of 22 Old 12-30-2013, 01:04 AM - Thread Starter
 
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Have you considered acupuncture? Needles might freak a 10-year-old out, but I was almost 12 when my migraines started. They were unbearable and became increasingly worse. By the time I was 18 I seriously thought about suicide to end the pain. At 22 I had acupuncture for the first time. I improved slightly after about 6 treatments.(By the way, I was on Imitrex all this time). I traveled to Asia, found that codiene was over the counter there, and it did wonders for me, so I stopped the acupuncture. I relied on codeine for years (traveled to Asia regularly for work, and stocked up each time). Eventually I went to a different acupuncturist for back pain, told him also of the migraines, and he treated both. After 3 treatments I did not have to rely on codeine. 2 more treatments and I did not have a migraine for months. I haven't had acupuncture in years, but I now only get one or two headaches a year ( and pop codeine when I do) which is amazing to me. Just wanted to throw that idea out there for you.

Thanks for replying! Interesting about the acupuncture. I will have to keep that in mind as an alternative treatment when she's older.

The periactin seems to be working pretty well. Sometimes she has no headaches (usually in the morning) and by late afternoon the headache comes back but not very much according to dd. I'm sure the codeine would work well but I would be worried about giving it every day (she had daily headaches) and what that might do to her long-term brain development. 


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