Re: Child's sleep-related seizures and other problems

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Posted by ccf neuro MD on July 20, 1997 at 19:25:56:

In Reply to: Child's sleep-related seizures and other problems posted by Tracy Fasone on June 09, 1997 at 14:22:18:

: My 3.5 year-old daughter began having generalized complex
seizures in her sleep when she was 7.5 months. She cried
a LOT during the night as a infant. In fact, she
may have had more seizures that we don't even know about.
She's been on Phenobarb, Dilantin, Tegretol, and Valproic
acid. She is currently on the latter two.

In the beginning, her seizures occurred about once every
2 months. She always went into status and was hospitalized.
Now, the status seizures are much less frequent, (about
one per year!), however, she now has these terrible night
"episodes". She suddenly cries in her sleep and shakes
uncontrollably. She doesn't seem to be conscious. These
episodes last anywhere from less than a minute to 1.5
hours. There's nothing we can do except wait for it to
end. A couple times we have taken her to the ER where she
was given valium. We have also administered valium at
home. When she wakes in the morning she's as fine as
ever. I should also note that these seizures - if that's
what they are - have been occurring since she was about
1 year old.

At first we were told these were night terrors, even
though we explained that they occurred several times
per night, almost every night. Once the doctors saw
a video tape of her, they concurred that she was seizing.

As for her "other problems"... She has physically
regressed 3 times in the course of one year, and she is
developmentally delayed. She walked at 20 months. At 26
months, her left foot began to turn in and she began
falling. In 2 weeks time she could no longer walk at all.
Then about 3 weeks later she began walking -
slowly, like starting over. In another month, the
pattern repeated itself - another few weeks of crawling
followed by a complete recovery. This time she walked
for 4 months before repeating the pattern. In Aug of 96
she started falling again and didn't walk again until
Dec of 96. In the time between Aug and Dec, there were
a couple of weeks where she could not even sit up.

She's been walking ever since and doing great. Although
still delayed for her age, she can run, (although with
an awkward gait), jump, and go up & down stairs holding
on to a rail. Her speech has never regressed and
continues to improve.

In 96, we took her to Kennedy Kreiger Institute at Johns Hopkins
where Dr. Sakkubai Naidu diagnosed her with intermittant
dystonia. However, when Dr. Naidu saw her THIS year, she
said that the dystonia was gone.

My reason for posting is to see if anyone has ever heard
of anything like this. We're desparately seeking a
diagnosis. As you can imagine, she's been through a
battery of tests. Also, could the seizures or the
medication be the cause of all her other problems?

Open to suggestions.

Tracy Fasone

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To Terry Fasone:
I noticed your question was posted a while ago and has gone unanswered. Indeed, your daughter’s history is perplexing although it seems you and her physicians have pursued all the appropriate possibilities. Let me first say that without the ability to fully review all of the child’s history and devcelopment, and based only on the description provided in the message, no other patients with the same spectrum of problems come to mind. However, you describe a number of problems that I will briefly address separately. First of all, your daughter appears to have epilepsy- you described “generalized complex seizures”, “status” and treatment with multiple medications. It would be interesting to know more about the characteristics of the seizures, i.e. what actually happens during them and what the eeg , and MRI scan have shown. If your child has not had a good quality MRI focused specifically at revealing possible focus or epileptic lesion, this clearly need to be done. In addition, complete re-evaluation of her seizures and eeg by a pediatric epileptologist may be useful in optimizing therapy for her seizures and perhaps even trial of some of the newer medications.
The second problem you describe is nighttime spells, which I would agree with you are more likely to represent seizures than night terors based on your description. You noted that a video was done but did not specify wheter overnight video-monitoring with eeg was done. This is the best way to sort out whether the spells represent seizures or atypical sleep-related phenomena. IF an evaluation reveals these to be seizures, it is possible to alter the medication regimen specifically to address this problem by adjusting the nighttime medications.
You also described some episodes of regression followed by some recovery. However, you did not say whether these were related to other concurrent events e.g. general illnesses or “status”, and it is unclear if her development was normal prior to these episodes. However, generally, such “regression” or periodic arrests of development can be seen in relation to uncontrolled seizures or status. They also may be manifestations of certain inherited disorders of metabolism, some of which also are associated with seizures in the affected children. There are many classes of disease in this category most of which can be tested for by simple blood and urine tests, and sometimes by tests of spinal fluid. Since you mentioned an evaluation at Kennedy Krieger Institute, it is likely that your daughter already was tested for these conditions. If you are not certain of that, I would advise checking with your doctors or having another pediatric neurologist familiar with metabolic disorders review the case.
Finally, you spoke of some developmental delays although your daughter appears to cognitively be doing well and making progress with her motor skills. Certainly seizures as well as many of the medications used to control seizures, along with all the time some children lose to hospital stays and illness can have an impact on children’s development particularly in the first few years of life. Even while you search for a cause of her problems and a proper diagnosis, I hope that you and your doctors have found the appropriate physical/occupational and other therapies to assist with your daughter’s developmental progress.
I wish you the best of luck with your quest for a diagnosis and best therapy for your daughter. Her problems sound difficult, but very interesting from a neurology standpoint. Indeed, if you do consider further evaluation either specifically for video-EEG monitoring or for a general re-evaluation, the Cleveland Clinic has an excellent department of pediatric neurology and a pediatric eeg monitoring unit. If you seek care elsewhere, I would inquire specifically about physicians trained in pediatric epilepsy and neurologists with an interest in metabolic disorders.

*NOTE: This information is provided for general medical educational purposes. Please consult your physician for diagnostic and treatment options of your specific medical condition.

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