3 year old granddaughter with jerking movements and lip smacking upon waking

[NaNaof1]

When my granddaughter was an infant and I would hold her while she was sleeping I would notice some slight jerking or spasms and she would have to be swaddled to keep her arms from flailing and waking her.  Her then pediatrician said it was nothing to worry about.  She is now 3 and has started to have short (seconds or mabe a minute) episodes upon waking when her arms will jerk and she smacks her lips.  I don't know the exact number of times this has happened but any average of 10 times over the last 2 months.  Her new pediatrician referred her to a neurologist and an eeg was done that showed abnormalities.  He was not very informative and my daughter was rather in shock at hearing the diagnosis.  He prescribed Keppra for her and the first dose she took was very devastating to her behavior.  She is a very normal 3 year old otherwise, and yes she knows how to push your buttons, but it broke my heart to see how this drug affected her.  She got under the table and screamed "Mommie, Mommie" but would not allow her mother or anyone to come near her.  She cried and screamed and could not be satisfied about anything most of the day.( and believe me we were trying everything to calm her down)  The drug also made her clumsy and unfocused.  I finally talked her into getting in the bathtub and it calmed her somewhat although she was overly active while in there.  My daughter called the pediatrician (the neurologist was not available and had not returned calls from the previous day) and the pediatrician told her not to give her any more of the medicine.  She is scheduled for a 24 hour sleep study in about a month and we are also seeking a second opinion as this neurologist does not even bother to return phone calls.  As you can guess her mother and I are both upset from the diagnosis and no we don't want to believe she is having seizures as the episodes are really mild and do not last long at all and only occur when awakening.  However, we don't want to prevent it from getting worse by doing nothing either.  Do you think these episodes are seizures?  And if so, is medication necessary with such mild ones?  She is absolutely normal in every other way and the effects of the medine caused worse episodes than what it was suppose to be helping with.  The only other problem she has had is a hemangioma on the right top side of her head that is now completely flat and fading in color and no longer noticable with her hair covering it.  We would appreciate any advice, opinions or reassureance you can offer in this matter.
Thank you very much
NaNa & Moma

[Abhijeet Deshmukh, MD]

Hello.

I was reading your first post again just to have a recap of our conversation and it suddenly struck me that his seizure and the hemangioma are actually related. They fall into a condition called JME (Juvenile Myoclonic Epilepsy). All the symptoms are typical. But please get it diagnosed (or ruled out) after the investigations and the neurologist's visit.

IMPORTANT: In case of the JME, the normally excellent Tegretol is not to be considered. It may actually trigger the seizures in JME.

Please make a note of this and discuss it with the neurologist.

Best Regards

[NaNaof1]

My granddaughter's neurologist finally did call us back and has scheduled another appointment with her for February 14 and she is off any meds until then.  She also has the sleep study scheduled for February 23 and we are in the process of setting an appointment with a child neurologist in Chapel Hill as we want a second opinion and to make sure she will be getting the best care that we can find.  Do you have any advice for us as to how we handle her care in the meantime?  Such as, are there any particular actions, reactions, behavior, etc. that we should be more aware of or trying to avoid?  What questions do you suggest we ask at appointments?  When she does the sleep study, do you advise mother and child only, or should other family members visit her while there.  We want what is best for her, not us.  Thank you for all of your advice and encouragement and the time you devote to answering all of our questions, as it really means alot.

NaNa & Moma  

[Abhijeet Deshmukh, MD]

Hello.

A big chunk of children with partial seizures have benefited immensely from Carbamazepine (Tegretol). It can be the right prescription. This is just a clinical experience. Try to suggest this to her pediatrician.

Regards

[NaNaof1]

Thank you so much for your prompt reply.  From your answers, it seems our biggest problem will be finding the correct medicine to help her.  Thank you again, I now feel more at peace and now know what to pray to our Lord Jesus, our ultimate healer.
Blessings to you,
NaNa & Moma

[Abhijeet Deshmukh, MD]

Hello.

Your little one does seem to have seizures. These are partial seizures. The EEG should be showing the same. These seizures are short periods of such behaviors as lip smacking, staring, etc.

I would like you to take it in your stride and not worry. She will still go on to develop a normal child. It will be a risk not to treat this with medicines. You could ask the pediatrician to refer her to a pediatric neurologist, who can change the medicine. There are other drugs which are well tolerated by children

She will most probably outgrow her seizures.

Regards