5 year old with new bilateral ankle clonus

[pghparent]

As an infant my daughter had low tone all over (except face which was "tight"), left-sided preference, delayed w/ all milestones. She circumducted rt leg, was taught all protective reflexes, taught all movements (how to reach for a toy), and to keep her tongue in. Still: low tone, no deep tendon reflexes, "clumsy," "out of rhythm" when moving with peers, tires. Good/great IQ, ok genetics; mixed CK (norm or bit high), can function ok in school xcept gym. DDH+, breech, little uterine mvmt. Diagnoses have included: hypotonia, rt-sided hemiparesis, congenital myopathy, GDD. Others said poss stroke or global apraxia.

Neuro saw new bilateral ankle clonus on visit. Also, she has begun biting her cheeks/tongue unless she is concentrating; she complains of significant muscle pain in her thighs and in her knees in the morning coming downstairs; and about a year ago she began to exhibit greater strength on her RIGHT side and was weaker on her left side. So much so that her therapists wondered what side they were supposed to work on. It's not pronounced but it represents a big change for her.

I am confused about what this might mean. Is it ever normal for a five year old to have intermittent bilateral ankle clonus? Could it be a passing fluke? Based on other postings, where bilateral clonus occurs there are usually  hyperactive reflexes it seems, and this is NOT the case here. Are there conditions that present this way? Is there any reason to be concerned about waiting three months for a follow up exam?

Thank you in advance for any and all suggestions and comments!

[Sara Khan]

Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.

Without the ability to examine you and obtain a history, I can not tell you what the exact cause of your symptoms is. However I will try to provide you with some useful information.

It seems that your daughter has had an extensive work-up. I will focus on your question about clonus. You are right. Clonus is usually associated with increased reflexes. It is what we call an upper motor neuron sign or in simple words, if sustained, usually arises from problems in the brain or spinal cord. Normal people can also have clonus, however that is usually unsustained ( less then a few beats).

Usually babies who have had any insult to their brain around the time of birth ( before, during or after), most of the times because of decreased oxygen or decreased blood flow,  can have what we call PVL or periventricular leukoencephalopathy which is just damage to the white matter because of low oxygen or blood. Initially these babies have decreased tone, but as they grow older, it can convert to increased tone , with increased reflexes or clonus. Have his reflexes recently been checked by a neurologist?

i think it would be worth while to see his neurologist sooner, especially since the side of weakness changed. It may just be evolution of her underlying problem but it would be good to rule out something new.

I hope this helps.

Good luck.

[pghparent]

Dr. Khan,

Thank you very much for your response. I greatly appreciate your insights. They are helping me to frame additional questions for my daughter's neurologist.

Best wishes!