NeuroTalk Support Groups - Lyrica question again

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- - Lyrica question again (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/27521-lyrica-question.html)

A Link to Info about Lyrica..and it not being used in children...and my own babblings

Hi Andrea,
I just happened to pop by here today, and read your thread here. Something about using Lyrica on children was niggling my brain .... because I could swear on their own commercial (I don’t know if drug companies air their own commercials there like they do here or not?) they say “Do not use for children under 18 years of age.”

So, I went hunting.... and sure enough, this is what I found:

http://www.drugs.com/lyrica.html

If you go down to the 3rd sub-heading on this page (“What should I discuss with my health care provider before taking Lryica?”), and read to the end of the paragraph....you will see that it says “Do not give this medication to a child younger than 18 years old.”

Like I said, I believe that the company that makes and sells Lyrica gives this same warning in their commercials. Have you asked your Pharmacist about this? Or your Doctor? Have you reported Ali’s stronger mood swings to her Doctor? If not, I definitely would ASAP. If you can get him to explain to you why he is prescribing a medication to a 12 year old child, AGAINST the drug manufacturer’s own guide lines, and are satisfied with whatever answer he gives you, and you decide to keep her on this medication...I would surely keep a close eye on her to make sure that these problems don’t get any worse. Do you keep a journal about Ali’s condition, pain levels, different kinds of treatment & medications, etc? If not...you might consider doing so, to log how these new problems develop or rectify themselves.

I know that I had MANY Problems when taking Neurontin (which is also a GABA drug). The some of the side effects that I suffered were:

Cognitive/Reasoning Problems (I felt STUPID all of the time. I didn’t even feel that I was safe to be behind the wheel of a car)
DRASTIC Mood swings (being very angry, depression getting worse, having a VERY short fuse, that kind of thing)
Vision Problems
Slurred Speech
Slowed Reaction Time
Weight Gain

To make matters worse, the medication wasn’t helping with my pain whatsoever. I couldn’t justify the weight of the side effects and the cost of the medication; it just wasn’t worth it. I went through MANY increases in dosage, because every time I would complain about the side effects I was suffering, my Pain Doc at the time would only increase the dosage, and tell me that things would “get straightened out” once we found the right dosage. They did not.....so I weaned myself off of the med. I DO NOT recommend anyone doing that, and I AM NOT advising that anyone take matters into their own hands like I chose to do. These Anti-seizure medications are nothing to fool around with.

Anyway...I really hope that Ali starts feeling better soon. I too remember having 12 year olds (my two kids are only 16 months apart, so I had 12 year olds for 2 years in a row! LOL. They are now 18 and 19..almost 20). While I do agree with Vic that there is a certain amount of Mood Swings going on at that age, it was my experience that they didn’t just pop up over night, or increase in such a drastic way I such a short amount of time. I understand that every child is different.....but I know that I would be very concerned if either one of my children were on a medication (recommended for use in children or not...but ESPECIALLY if it was not) and their mood started swinging so drastically all of a sudden. I would be concerned even if they were not on any medication, and this started happening.

I do hope that things settle down for you both. I have been trying to read your & Ali’s story when you post here, and I know that it sounds like you guys have had one very rough year. I have my fingers crossed that it will start to mellow out sometime soon.

:hug:
Jose

Don't worry Joan. He is OK.

Hi Joan,
No...I don’t think that Vic was saying that your post made him feel suicidal in any way. I think that he was saying that he had just took “a handful” - meaning his normal dosage for meds for that time of night - and then came back and read the word “poison” being used in place of “medication” or “meds”, and that that got his gag reflex going. Pretty much, in not so nice or polite terms, he read the word “poison” instead of “meds” and it made him feel like puking up all that he had just taken. LOL

I think that he was just messing with you a little...or trying to make a lighter post in this thread. Of course, I could be totally wrong about that part, and he really and truly felt like barfing....

Anyway...the thing that I am sure of is that NOTHING you said has made him feel like ending it all for himself in any way whatsoever. I am sure that he will be along at some point later, and tell you the same. You just have to know, Vic was a unique way of saying things, and a kinda “quirky” sense of humor sometimes (as someone who has known Vic for MANY years now, I know that to be a FACT! :rolleyes:) LOL

Hope that this helps to relieve your mind a bit...

:hug:
Jose

thanks jose that does relieve my mind. whew! i could not figure out what he was saying at all. but meds are poisons. ha! joan

Hi Joan,

What Jose said. I really had just gagged down a bunch of pills; I really do hate taking meds, and; my stomach does sometimes rebel, but it didtn't really reach the point that I was thinking of regrugitation: But it seemed too good an opportunity to pass up.

Jose, I used to be thought of as a pretty funny guy, and now I'm "quirky"? Oh, how the mighty have fallen. Good to see your name on a post again...Vic

Hi Vic,
I had thought that you were saying the thought of poison made you think 'wow, these pillls can kill me!' and then you said you took a handful! I thought you were trying to commit sucide! ha! Oh boy! I'm glad jose explained you are quirky! good word!
Joan

Quote:

Originally Posted by betsyherm (Post 145917)

Joan,

I very much disagree with your theory on stress. In addition, I think that, if taken in the wrong way, it can be highly harmful to our cause.

I understand that you mean that stress may be a contributing factor in the development of RSD, but the way you stated it sounded like stress *becomes* RSD. This just isn't true. Stress is a contributing factor in MANY diseases, but never does stress alone cause a progressive physical illness! EVERYONE has stress, few have RSD. If there is a link, it isn't scientifically proven...and speculation really *can* be harmful.

I've been on this rant for several weeks now, I know. Please, PLEASE be careful how you speak about stress!

When I first got RSD, I was under no more stress than the average sixth grader. Sure, I strove to be the best at the things I enjoy, but that's a fairly universal trait (as in, I know few people who intentionally set out to fail).

We all find it insulting when a doctor tells us that what's wrong with us is stress, right? So please do everyone here the courtesy of not saying the same thing.

To be perfectly honest, being told that I'm stress stresses me out. We're all different, and we all had different factors that led to our development of RSD. For some, maybe stress contributed, I don't know. I can assure you, however, that there are people for whom stress did not necessarily play a role.

There is NO personality profile that makes anyone more likely to get RSD. It is an insulting idea, and I don't want to see anybody here agreeing with it! We are unique individuals with highly different personalities.

Hi Betsy,

I totally understand your indignation that people may think that because you have RSD then you must have been stressed to have got it.
I have more many years fought that stereotyping of RSD sufferers as whilst many people I know (and myself)who have RSD are what I would class as 'type A" personalities, I know some also who are far from that description.
Having said that I do believe that the stresses of having a complete lifestyle change, losing careers, financial hardships and constant severe pain are all genuine reasons to become more stressed and therefore impacting our possible recovery. I believe for myself that the enormous stress brought about by my accident has changed my ability to heal both psychologically and physically.
Unfortunately it is well documented that these increased stresses can make our illnesses worse, not just RSD but most illnesses.
The "well meaning" doctors who so flippantly say that you are sick because of stress are definitely not understanding of the intense effect this disease has on every aspect of our lives.
It is a 'chicken and egg" situation. I wonder if we will ever know the truth but please don't let uninformed and careless statements from people upset you, after all those who know you know differently and what others think is just their opinion.
Take care Betsy
Tayla:hug:

Quote:

Originally Posted by ali12 (Post 145383)

Hi there - Ali's mum here
Just a quick question about Lyrica and side effects
Alison is now on day 7 of Lyrica (she has one week at 50mg twice daily then this steps up to 75mg twice daily)
Whilst I am aware that RSD can cause mood swings and depression, I'm not sure whether its my imagination but it seems that her mood swings have got worse since she started on this medication
We had to go into hospital for therapy yeaterday and the night before we had major problems cos Alison point blank refused to go and began to get very emotional about her illness (about 30 monutes after taking the Lyrica)
By the following morning things had settled down and she was happy to go. but last night the same problems arose - one minute she was OK and then shortly after taking Lyrica again she was back in the opposite mood which lifts about mid morning (about 3 hours after the morning Lyrica tablet)
I know that Lyrica has not been tested on children and wondered if anyone could advise me on their experiences with using the drug for adolescent and pre-adolescent children and any recommended dosages
Alison is only 12 but is the height, frame and weight of a 15 year old so I do wonder if she is being dosed according to weight but as a 12 year old is not emotionally mature enough to cope with that dosage (Hence the previous vision problems with amitriptyline which resulted in the fall and spread of RSD to her arm)
My other worry is the possibility of long term effects stemming from the use of drugs which are not registered for use in children. Hopefully Alison will recover soon but how will exposure to such strong medication effect her in the future.
Any thoughts or advice would be most welcome, especially about whether the side effects will pass
Thanks
Andrea (Ali's mum)

Hi Andrea,
I am so sorry for the worry that having your little girl with this illness must bring you.
As others have said, I am so happy that it is me who was dealt this blow and not any of my children.
I would be wanting Ali to have a more multidisciplanory type of treatment rather than relying on just medications as being so young does stand her in good stead of being cured.
You may have already told us so I apologise for asking but has she had the benefit of nerve blocks, mirror imagory,ketamine, physiotherpapy, OT and psychology?
I think that the use of these without relying only on medication is one so young would be beneficial however please don't worry too much about the long term affect of medications on her, many people have had a multitude of drugs for years and years from an early age seemingly without any or too many issues.
I wish you and your little girl so much luck
Tayla:hug:

Hi Tayla4me
Alison had a "Bier block" at the end of July, which had no affect and she also lost her balance. The Physiotherapists have only just started mirror imagory, which too does not seem to be working. Alisons not started on Ketamine as of yet. The OT at the hospital dont seem to be doing anything for her, however we have another OT who is really nice and shes reffering us for a transit wheelchair, she also gave Alison a bath lift.
Many thanks for all your help