Suggestions....

[mlbandura]

I am new to being a mom of a child with seizures. So I have a question and hopefully you guys may have a few suggestions for me. Since my son has been on Trileptal, and has recently started working in Keppra, he has had moments of outburst and at times is a little more hyperactive.. okay alot more. Before the seizures started he was a very calm, independent mild mannered child. We are currently working on finding the right dosage that will keep the seizures at bay but yet minimize the side effects too. That being said... He had an appointment with a pediatric ophthalmologist yesterday. While at the appointment my son was very hyperactive. When I mentioned to the Dr. to please excuse my sons behavior (not saying to dismiss it but rather to understand) that he is normally not like this and then proceed to comment that due to the medicine he has been having increasing moments like this. The doctor then said to me "you know, that is just an excuse. He could be a good child if he wanted too" Needless to say I told him that unless he is in direct contact with my child's neurologist and knows his complete medical history that he should not make comments like that. Then I took my child and left. Thankfully the appointment was just about over. I called his pediatrician, which referred us to him, and told her what happened. I was very upset. I get that all kids at some point in time act out. But I also know my son and know that this is not him. I know when its normal 5 year old acting up and when its not. Not only that but his neurologist is attributing it to the meds, but he would like to give it another couple weeks and see what happens. It just frustrates me to no end when people make comments like that without knowing the full story. I just want to break down and cry at times! It's hard enough as it is. I don't need some jack wagons adding to the stress. He does get reprimanded for his behavior, meds or no meds, because he needs to know either way it is not appropriate. I guess I am just looking for suggestions on how to better handle situations like that until we get everything under control. This has seemed to happen a few times in different situations. Any ideas would be greatly appreciated

 

[epileric]

I know I'd find it hard not to blow up at a doctor that told me something like that, be it re. me or a child.

Personally I think you handled the situation perfectly. You calmly (?) explained why his remark was inappropriate, left & informed the person who recommended the individual.

If you really feel like doing more you might want to call the college that regulates that ophthalmologist but things like that are often too grey an issue for them to take seriously.

One of the things that I found surprising about having epilepsy is huge amount of unprofessional professionals. I'm now at the point that every professional (especially neurologists) has to prove themselves to me before I fully trust them. By the same token I am perfectly honest re. my condition & situations or I'd just be hurtng myself.

 

[Endless]

Hi, mlbandura,

It breaks my heart to hear stories where doctors treat their patients, and their patient's families that way. I'm glad you told your pediatrician about it. He probably won't send people to that particular neurologist again.

I was on Keppra for awhile. Keppra can definitely cause agression, hyperactivity, etc. And it may not show at first. It can pop up later. A lot of people find help in taking vitamin B. Since your son is rather young, I'd get help from your pediatrician on how much to take.

Trileptal did the opposite to me - I was sluggish and slept all the time. But everyone is different. Especially children - they react to some drugs in the opposite way that aduilts do.

Look here for patients' sharing their experience with your son's drugs:
www.askapatient.com

As for a doctor, consider getting a new one. Ask your pediatrician to refer your son to a seizure specialist (epi). You can also look for a pediatric neurologist who would know more about how the drugs affect children.

Look on the epilepsy foundation's website to search for another doc near you: http://www.aesnet.org/find-a-dr/find-a-doctor

At that website they listed a ton of pediatric neurologists in boston. Forgive the long list, below. I assume they are epi's if they were listed on the epilepsy foundation website. You can look up each doctor and whether they have good patient ratings on www.healthgrades.com

Norberto Alvarez, M.D.
Children's Hospital Boston

Blaise F.D. Bourgeois, M.D.
Children's Hospital Boston
Division of Epilepsy and Clinical Neurophysiology

William DeBassio, M.D., Ph.D.
Boston University
Dept of Child Neurology

Laurie M. Douglass, M.D.
Boston Medical Center
Dowling 3 S Pediatric Neurology

Edward J. Hart, M.D.
North Shore Children's Hospital
Dept of Pediatric Neurology

Frances E. Jensen, M.D.
Children's Hospital Boston
Dept of Neurology

Lauren Kondev, M.D.
Children's Hospital Boston

Sanjeev Kothare, M.D.
Children's Hospital Boston
Division of Epilepsy

Mark H. Libenson, M.D.
Children's Hospital Boston
Div of Epilepsy & Clin Neurophysiology

Tobias Loddenkemper, M.D.
Children's Hospital Boston

Edgar Y. Oppenheimer, M.D.
North Shore Children's Hospital
Dept of Pediatric Neurology

Jurriaan M. Peters, M.D.
Children's Hospital Boston
Division of Epilepsy

Anna Lecticia R. Pinto, M.D.
Children's Hospital Boston
Newton, MA

Annapurna Poduri, M.D.
Children's Hospital Boston
Division of Epilepsy

Michael Robbins, M.D.
Children's Hospital Boston at Peabody
Andover, MA

Alexander Rotenberg, M.D., Ph.D.
Children's Hospital Boston
Harvard Medical School

Masanori Takeoka, M.D.
Children's Hospital Boston

Alcy R. Torres, M.D.
Children's Hospital Boston

Martina Vendrame, M.D., Ph.D.
Children's Hospital Boston

Sonya Wang, M.D.
Floating Hospital for Children
Tufts Medical Center

 

[dragonlady1978]

My son has been on Trileptal for a long time, and we started Keppra about 8 weeks ago also. I was amazed at how fast Keppra made a difference in his seizure control, but it has been a nightmare in the changes in my son's behavior.

Hunter never had any negative side effects from the Trileptal, except making him sleepy for the first few weeks. We tried other meds along the way and I hate switching to the unknown, but he's on the high end of what he can tolerate of Trileptal now and started having clusters again-so I'm trying to hang on for dear life even though Keppra is causing some nasty problems.

I was also told that the side effects may go away once he got used to the new medication. Not to say that he was always on his best behavior-kids will be mischievous at times regardless-but Hunter has always been a very sweet, loving, and happy child. Now he has severe mood swings, he gets very depressed or angry out of nowhere and is inconsolable and acts out with fits...and there's nothing we can do but ride it out. It's like he can't stop himself, he usually even apologizes afterwards and seems embarrassed.

I have read that B-6 helps with the issues that Keppra causes, I asked our neuro and she said not to bother that the studies don't show a big difference. I have been trying it anyway, willing to do anything and hope for better.

Because the doc was less than supportive-I asked the pharmacist who dispenses his prescriptions about safe dosing of B-6 for a child his age (5) and on his medications. I'm using a much smaller dose than what others may be because I'm doing it on my own, even though the pharmacist said that B-6 is wonderfully safe in that you can't get too much, that whatever isn't used by the body just gets excreted in urine.

I have been using a B-6 pill, but when I run out of this soon I was told by a user here yesterday that sublingual or liquid is better. I think I remember reading elsewhere also that is is more easily absorbed in those forms and so is more effective. He dislikes swallowing pills anyway.

I can't believe the audacity of the doctor who said that to you, I would have probably ended up getting thrown out of that office!!! It's difficult enough to deal with this without snide comments from people who have NO idea, you had every right to be angry.

Feel free to pm me if you'd like to talk, I'd love to keep in touch since our kids are both on the same meds and seem to maybe be having similar problems....

 

[Endless]

Your pharmacist may not be aware of B6 toxicity. Both Wikipedia and MedTV, as well as a host of other sites, say that B6 toxicity happens.

Toxicologic animal studies identify specific destruction of the dorsal root ganglia[12] which is documented in human cases of overdosage of pyridoxine.[13] Although vitamin B6 is a water-soluble vitamin and is excreted in the urine, doses of pyridoxine in excess of the RDI over long periods of time thus result in painful and ultimately irreversible neurological problems.

http://en.wikipedia.org/wiki/Vitamin_B6#Toxicity

Vitamin B6 (pyridoxine) is a water-soluble vitamin. Although people tend to think of water-soluble vitamins as being non-toxic, vitamin B6 can actually cause significant toxicity. Although vitamin B6 side effects may sometimes be seen even with normal doses, toxicity usually occurs with high doses.

http://women.emedtv.com/vitamin-b6/vitamin-b6-toxicity.html

How about your pediatrician? Is he/she able to help with the dosing? When my cousin's baby took B6, the doctor at the children's hospital prescribed the dosage. Happily enough, B6 took the baby's seizures away. Now with a pediatrician's guidance she still takes a regular, low dose.

 

[mlbandura]

Thank you all for the suggestions. This is why I LOVE you guys! I am speaking with his Neurologist at the end of the week to see about working him off the trileptal now that he has been on a full dose of keppra for over a week. I will mention the B6 to him and see what he thinks the correct dosage should be. I am willing to try any thing to help with the side effects. I hate to take him of the Keppra if we can get the side effects under control. It seems to be doing well for his seizures. He has not had any in the last two weeks. I am also hoping that weaning him off the trileptal wont disturb anything either. I guess it's a wait and see situation.
@dragonlady - I will PM you soon. I would love to keep in touch. I feel as though I may learn a lot from you.