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- Fri Jul 06, 2007 1:47 am
I am asking for help for my son. He is 5...Diagnosed w/: Epilepsy, Asthma, (Mild) Aspergers, Severe Sensory Integration, & Chronic Subdural Hematoma on Lt Tempotal Lobe, but now diminished. He has suffered with severe tingling in his feet, or has been verablly telling us, since he was 3 1/2. As a baby he alwasy stiffened his body and would not wear shoes - he would scream when we put them on him. He even used to walk ON his toes, currled under!!Since 3 1/2, it has progressively gotten worse and has just recently began to turn into such pain, that it radiates to his calves at times, and he screams in agony. Sometimes to the point we have had to pull the car over and tend to it. The episodes are varried in time. They can occur when he is in the car sleeping, they have occured when we have just put him in the car from being out, they have even occured on the T-Ball field while he is just standing in out-field. A few months ago, he had 3 out of 4 reflexes diminished. At one point his blood count that they said they use for neuopathy tested high, but the subsequent test was normal. Today we had an EMG/Nerve Conduction Study done and it was negative. We were told he clinically had the symptoms of neuropathy, but now that he tested neg. on the EMG, they said no, and have given up helping us. in fact they tried to suggest it was just psychological, or growing pains. We have had people witness this with us and would beg to differ. The neurologist used to blame it on sensory issues, but the OT said it has nothing to do with sensory, and has witnessed an episode herself. He does have epilepsy and is taking Keppra. The dr's tried Neurontin, but he began to vomit with it. They said he suffers from partial complex seizures. He did have a subdural hematoma that they said was from birth, but it has gone down. Please help. They ahve given up on us and it feels as though noone believes he suffers this pain. It is killing us to see our son screaming in pain and noone is helping us figure this out!!!
| Dr. Chan Lowe
- Sun Jul 08, 2007 10:16 pm
I have heard of similar cases before. Unfortunately, I really don't know that much about it. I can offer you what I do know, though.
With a normal EMG it makes many of the bad things I can think of (such as spinal muscle atrophy or peripheral nerve degeneration) essentially out of the question.
I would recommend he have is B12 levels, thyroid levels, and general electrolytes be tested. I would also recommend an EEG and follow up MRI of his brain to see if there may be anything centrally that is causing his pain.
There is also a condition known as reflex sympathetic dystrophy that can be quite painful. The exact cause of this is unknown as far as I know but it often is seen in conditions associated with stiff muscles or cerebral palsy. Treatment is through physical therapy.
There are other cases where children are much more sensitive to stimuli than "normal". In some cases, the sensations are so severe that the children can't put on socks due to pain. I am not familiar enough with them to know how best to treat or diagnose this but I know such conditions do exist.
I would recommend you consider getting a second opinion from a pediatric neurologist or neuromuscular specialist to help guide his work up.