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Seizures - Severe Epilepsy
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Seizures - Severe Epilepsy

My son (22 months old) was diagnosed as having a very difficult to control Epilepsy. We still couldn't control his seizures. At first, he was diagnosed as having generalized epilepsy, and as his background rythm (EEG)was normal that was it. Later (when he was 12 -13) his background rythm changed, so he was diagnosed as having West or Lennox Gastaut. Both of the diagnosis were devastating to us. We tried many medicines, and none of them seemed to work. (Sabril, Phenobarb, Lamictal, Sodium Valproate, and now we are trying Topiramate). He is now on ACTH, Sabril, and Topamac (We are weaning him off ACTH (it didn't work))

Now my question: What really called our attention, is that now, that he is on ACTH we are administering him 500 mg of Calcium per day (together with D Vitamin) the thing is that when we administer him the Calcium his seizures seem to stop. When we deprive him from calcium (something that we had tried three times) his seizures increase significantly (they go from 1-2 per day (with calcium) to 25-30 per day (without it)). His development is normal (something that doctors can't believe).
His seizures started when he was 6 months old (when we started solid food). My question is, is it really epilepsy what he has? can't it be something related to a metabolic disorder (related to calcium)?  (We checked his calcium levels, and they all seem normal, in Spanish ( we checked calcemia, fosfatemia,and calcio ionico). Now we're going to the endocrinologist. What should we wait from him? Is there any other thing that we are ignoring?
Any feedback will be welcomed.
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Calcium disorders can certainly be a cause of his seizures, especially hypoparathyroidism, which is a disorder that the endocrinologist can help evaluate your son for. There are also genetic syndromes associated with hypocalcemia and epilepsy.  It's interesting that his development is normal (cognitive and physical??) as Lennox Gastaut syndrome is associated with severe mental retardation.  I agree that further studies should be done to evaluate him for an underlying metabolic disorder, especially if he really is normal.  Genetic testing, pyridoxine, amino/organic acids, lactate and pyruvate ratios should all be looked at as well as other specialized testing. MRIs of the brain should also be done and perhaps spinal tap. In the meantime, we have some children with refractory epilepsy who have responded dramatically to treatments such as the ketogenic diet. Talk to your neurologists about this possibility.

Depending on your financial/insurance situation, you could consider coming to the Cleveland CLinic for evaluation. We have one of the top epilepsy centers in the world and our epileptologists handle very difficult cases of children with refractory epilepsy in a multidisciplinary approach.  This means a team is involved in caring for the child: neurologist, neurosurgeon (if surgery is an option), epileptologist, social worker, nutritionists. psychologists, etc...Some potential physicians: Wyllie, Kotagal, and Holland are fanatastic pediatric epileptologists who would be happy to participate in the care of your son if you so desire. Good luck.
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Avatar_n_tn
I would really like to recieve a doctor's answer. This is a huge question for us. PLEASE answer it.
Thanks.
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Avatar_n_tn
Thank you very much for the answer. We are really worried about our son's problem. Now, we're waiting for the PTH results, as well as the D Vitamin results. We will analyze the possibility of going to the Cleveland Clinic for an evaluation. We'll have to analyze the costs, etc since we live far from the US. We live in Uruguay (a small country between Argentina and Brazil). Anyway, thank you very much
Regards
Gilda
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Avatar_n_tn
I have a 10 year old son who last year started complaining of chest pain.  I took him to the ER immediately.  They examined him and performed an EKG and said everything was normal.  He then started complaining of having a hard time catching his breath while playing basketball during recess.  I took him to his pediatrician who diagnosed him with asthma and prescribed an inhaler.  The school said that he was using his inhaler after every recess.  He also had two sever asthma attacks or what we thought were asthma attacks.  

A few days later the principle found him on the floor of her office having a very hard time breathing.  The very next day he was going up the stairs at school and passed out which was followed with body jerks.  He was taken to the ER by ambulance and was examined by the ER doctor who said everything was normal.  Later that same day I took him to his pediatrician who was examining him when he had what we now refer to as an "episode".

The episodes consist of glazed look on his face followed by his turning extremely pale, having a hard time breathing and body jerks with some hallucinations.  

After one episode, he was put on oxygen and taken by ambulance to the ER and admitted to the hospital.  He was in the hospital for three days and was examined by a neurologist as well as his own doctor.  They ran the following tests EKG,EEG,CT Scan, blood tests and many other tests.  The only test not performed on him was an MRI, because he kept having seizures/episodes.  No diagnosis was ever made.  He was released from the hospital and continued to have seizures.  He was having 10 to 12 seizures a day, which began to decrease in numbers everyday until they were all gone.  

We went to see a pediatric neurologist who examined him and reviewed the video tapes we had taken of him having these "episodes".  She diagnosed him as having "mycoclonic jerks".  

From April 2002 until November 2002, he had no episodes.  However, on December 19, 2002, he was at school playing basketball and started having a hard time breathing so he started towards the school he felt dizzy passed out and started having a seizure.  He was taken to the ER by ambulance, examined and sent home because everything was normal.  We took him to see a pediatric cardiologist who says everything is normal.  

We have an appointment to see the pediatric neurologist next week.  

It seems to me that something is being over looked, but what? Should we see another specialist? Endocrinologist?  Should we insist that they do an MRI? What questions should I ask the neurologist?  Any help is greatly appreciated.
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Avatar_n_tn
I have a 10 year old son who last year started complaining of chest pain.  I took him to the ER immediately.  They examined him and performed an EKG and said everything was normal.  He then started complaining of having a hard time catching his breath while playing basketball during recess.  I took him to his pediatrician who diagnosed him with asthma and prescribed an inhaler.  The school said that he was using his inhaler after every recess.  He also had two sever asthma attacks or what we thought were asthma attacks.  

A few days later the principle found him on the floor of her office having a very hard time breathing.  The very next day he was going up the stairs at school and passed out which was followed with body jerks.  He was taken to the ER by ambulance and was examined by the ER doctor who said everything was normal.  Later that same day I took him to his pediatrician who was examining him when he had what we now refer to as an "episode".

The episodes consist of glazed look on his face followed by his turning extremely pale, having a hard time breathing and body jerks with some hallucinations.  

After one episode, he was put on oxygen and taken by ambulance to the ER and admitted to the hospital.  He was in the hospital for three days and was examined by a neurologist as well as his own doctor.  They ran the following tests EKG,EEG,CT Scan, blood tests and many other tests.  The only test not performed on him was an MRI, because he kept having seizures/episodes.  No diagnosis was ever made.  He was released from the hospital and continued to have seizures.  He was having 10 to 12 seizures a day, which began to decrease in numbers everyday until they were all gone.  

We went to see a pediatric neurologist who examined him and reviewed the video tapes we had taken of him having these "episodes".  She diagnosed him as having "mycolonic jerks".  

From April 2002 until November 2002, he had no episodes.  However, on December 19, 2002, he was at school playing basketball and started having a hard time breathing so he started towards the school he felt dizzy passed out and started having a seizure.  He was taken to the ER by ambulance, examined and sent home because everything was normal.  We took him to see a pediatric cardiologist who says everything is normal.  

We have an appointment to see the pediatric neurologist next week.  

It seems to me that something is being over looked, but what? Should we see another specialist? Endocrinologist?  Should we insist that they do an MRI? What questions should I ask the neurologist?  Any help is greatly appreciated.
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Avatar_n_tn
I have a 10 year old son who last year started complaining of chest pain.  I took him to the ER immediately.  They examined him and performed an EKG and said everything was normal.  He then started complaining of having a hard time catching his breath while playing basketball during recess.  I took him to his pediatrician who diagnosed him with asthma and prescribed an inhaler.  The school said that he was using his inhaler after every recess.  He also had two sever asthma attacks or what we thought were asthma attacks.  

A few days later the principle found him on the floor of her office having a very hard time breathing.  The very next day he was going up the stairs at school and passed out which was followed with body jerks.  He was taken to the ER by ambulance and was examined by the ER doctor who said everything was normal.  Later that same day I took him to his pediatrician who was examining him when he had what we now refer to as an "episode".

The episodes consist of glazed look on his face followed by his turning extremely pale, having a hard time breathing and body jerks with some hallucinations.  

After one episode, he was put on oxygen and taken by ambulance to the ER and admitted to the hospital.  He was in the hospital for three days and was examined by a neurologist as well as his own doctor.  They ran the following tests EKG,EEG,CT Scan, blood tests and many other tests.  The only test not performed on him was an MRI, because he kept having seizures/episodes.  No diagnosis was ever made.  He was released from the hospital and continued to have seizures.  He was having 10 to 12 seizures a day, which began to decrease in numbers everyday until they were all gone.  

We went to see a pediatric neurologist who examined him and reviewed the video tapes we had taken of him having these "episodes".  She diagnosed him as having "mycolonic jerks".  

From April 2002 until November 2002, he had no episodes.  However, on December 19, 2002, he was at school playing basketball and started having a hard time breathing so he started towards the school he felt dizzy passed out and started having a seizure.  He was taken to the ER by ambulance, examined and sent home because everything was normal.  We took him to see a pediatric cardiologist who says everything is normal.  

We have an appointment to see the pediatric neurologist next week.  

It seems to me that something is being over looked, but what? Should we see another specialist? Endocrinologist?  Should we insist that they do an MRI? What questions should I ask the neurologist?  Any help is greatly appreciated.
Blank
Avatar_n_tn
I have a 10 year old son who last year started complaining of chest pain.  I took him to the ER immediately.  They examined him and performed an EKG and said everything was normal.  He then started complaining of having a hard time catching his breath while playing basketball during recess.  I took him to his pediatrician who diagnosed him with asthma and prescribed an inhaler.  The school said that he was using his inhaler after every recess.  He also had two sever asthma attacks or what we thought were asthma attacks.  

A few days later the principle found him on the floor of her office having a very hard time breathing.  The very next day he was going up the stairs at school and passed out which was followed with body jerks.  He was taken to the ER by ambulance and was examined by the ER doctor who said everything was normal.  Later that same day I took him to his pediatrician who was examining him when he had what we now refer to as an "episode".

The episodes consist of glazed look on his face followed by his turning extremely pale, having a hard time breathing and body jerks with some hallucinations.  

After one episode, he was put on oxygen and taken by ambulance to the ER and admitted to the hospital.  He was in the hospital for three days and was examined by a neurologist as well as his own doctor.  They ran the following tests EKG,EEG,CT Scan, blood tests and many other tests.  The only test not performed on him was an MRI, because he kept having seizures/episodes.  No diagnosis was ever made.  He was released from the hospital and continued to have seizures.  He was having 10 to 12 seizures a day, which began to decrease in numbers everyday until they were all gone.  

We went to see a pediatric neurologist who examined him and reviewed the video tapes we had taken of him having these "episodes".  She diagnosed him as having "mycolonic jerks".  

From April 2002 until November 2002, he had no episodes.  However, on December 19, 2002, he was at school playing basketball and started having a hard time breathing so he started towards the school he felt dizzy passed out and started having a seizure.  He was taken to the ER by ambulance, examined and sent home because everything was normal.  We took him to see a pediatric cardiologist who says everything is normal.  

We have an appointment to see the pediatric neurologist next week.  

It seems to me that something is being over looked, but what? Should we see another specialist? Endocrinologist?  Should we insist that they do an MRI? What questions should I ask the neurologist?  Any help is greatly appreciated.
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