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Neurology (Expert Forum)
Daugher diagnosed with Static encepalopathy
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Daugher diagnosed with Static encepalopathy
by ncmom3, Dec 31, 2006 12:00AM
My daughter is 6 months old. She was DX 11-22-06 with Infantile spasms, her 1st EEG was grossly abnormal. they preformed an MRI and it did not show any abnormalities with the struture of her brain. We began ACTH and Topamax also Vitamin B6. She also had a 6 hr VEEG and the results were unchanged.We were sent for a 2nd opinion to UNC Chapel Hill and they prrformed a 24 hr VEEG & another MRI. The VEEG was still abnormal and the DR said she only had 2 sz's during this but the rest of the time her brain was shooting off high voltage of electricity that looked like her brain was "wanting" to have a SZ. They think it begins on the right side of her brain. She also has myclonic spasms/jerks. She constantly jerks (more her arms shoulders) and her eyes will roll upwards. We are slowly dosing down off the ACTH. She is on .02 now. and on 3 15mg topamax twice daily.
They DX her with static encepalopathy, what is this??
The info they gave us is very vague.
She does not see, or we at least think she does not see. She is also developtmentaly behind. she does not roll over, babble or do anything of a 6 month old.
We are going to begin PT and OT after the start of the year.
We just want to know what is a child with this DX prognosis?? SHould we see a special dr?? Is there anything special we should do??
They also drew a TON of blood work @ UNC looking for genetic/metabolic disorders.
thank you so much for answering my question!
Lisa
They DX her with static encepalopathy, what is this??
The info they gave us is very vague.
She does not see, or we at least think she does not see. She is also developtmentaly behind. she does not roll over, babble or do anything of a 6 month old.
We are going to begin PT and OT after the start of the year.
We just want to know what is a child with this DX prognosis?? SHould we see a special dr?? Is there anything special we should do??
They also drew a TON of blood work @ UNC looking for genetic/metabolic disorders.
thank you so much for answering my question!
Lisa
Doctor's Answer
by CCF-Neuro-M.D.-SH, Jan 24, 2007 12:00AM
First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
I am sorry to hear about your daughters condition. A static encephalopathy basically means permanent brain damage- but the term itself does not speicify the cause. The symptoms and story that you relate of developmental delay, infantile spasms and myoclonic jerks and abnormal EEG(hypsarrthymia), is consisent with West syndrome. West syndrome can have symptomatic causes such as tuberous sclerosis, disorders of metabolism, disorders of development, genetic disorders etc, and sometimes West syndrome occurs for unknown reasons (thought to be related to a dysfunction in neurotransmitter function). Sadly 5 out every 100 children with West syndrome do not make it past 5 years old. Those children that do are often severely mentally impaired and many develop Lennox-Gastaut syndrome (a severe and progressive epilepsy condition). The reason for the ton of lab tests for genetic and metabolic disorders is to try an find a reason why you child developed this syndrome, and to counsel you on the risk (if any) that future children may develop the same condition. I would recommend that you see a special doctor, a pedaitric neuro-metabolic/neuro-genetics specialist who can interpret the studies that were ordered thus far and recommend further tests as needed to find a diagnosis. It is hard to determine the exact prognosis at this point until a diagnosis is made, and it is unfortunately, often a long road. I wish you the best.
I am sorry to hear about your daughters condition. A static encephalopathy basically means permanent brain damage- but the term itself does not speicify the cause. The symptoms and story that you relate of developmental delay, infantile spasms and myoclonic jerks and abnormal EEG(hypsarrthymia), is consisent with West syndrome. West syndrome can have symptomatic causes such as tuberous sclerosis, disorders of metabolism, disorders of development, genetic disorders etc, and sometimes West syndrome occurs for unknown reasons (thought to be related to a dysfunction in neurotransmitter function). Sadly 5 out every 100 children with West syndrome do not make it past 5 years old. Those children that do are often severely mentally impaired and many develop Lennox-Gastaut syndrome (a severe and progressive epilepsy condition). The reason for the ton of lab tests for genetic and metabolic disorders is to try an find a reason why you child developed this syndrome, and to counsel you on the risk (if any) that future children may develop the same condition. I would recommend that you see a special doctor, a pedaitric neuro-metabolic/neuro-genetics specialist who can interpret the studies that were ordered thus far and recommend further tests as needed to find a diagnosis. It is hard to determine the exact prognosis at this point until a diagnosis is made, and it is unfortunately, often a long road. I wish you the best.
One of my friends in Australia just went through this with her son, she noticed stuff with him at a similar age and it took a good 8 mths to finally get a dx of epilepsy - sorry I cannot recall the specific dx type. At just over 2yo he is still lagging a bit developmentally ( very late walking etc) but he has responded really well to OT and PT. I guess my point is, he was also very behind and has come a long way in a relatively short period of time all things considered.
For them its been a long journey and challenging in that she has other children and he was a high needs child, both in terms of his general personality and his epilepsy. Also as he grew and gained weight or was sick, his epilepsy would spiral again until his meds were adjusted to correct weight vs dosage. What she found useful was doing a daily diary of what she observed with him and it made it easier to look back on and report accurately to the medical staff caring for him. Its I guess easier on your memory which can be compromised with parental sleep deprivation - I know this too well, I am a Mom of 3 and our youngest at 1yo is just starting to sleep through.
She found good support online with message boards, also the therapists helped her and some others form a support group/therapy play group, which has been helpful.
I am not sure what the implications of your daughters dx are long term but I would say that its important to take it day to day and not have specific by the book expectations of her, nor compare her with friends kiddos, she is an individual and we all progress at our own pace, however children this young really benefit from OT and PT intervention early and over the long term (think through age 4-7 depending on progress and needs). I am an Occupational therapist but not a peds specialist, however I have seen amazing things achieved by children and their families over the medium to long term, you just need to get a grip on the dx, understand that this is not anything that anyone did and then move forward, armed with as much information and support you can muster.
Hang in there, I hope you get some more specific info and I wish you all really well with the therapy. BTW, most states here fund some sort of early intervention therapy for kids age thu 3y. Its definitely worth checking out to see if you can qualify.
Fiona
I am really wanting to know if we should get a 2nd opinion???
Much luck to you.
We just had another VEEG 6hrs and now the neuro has said she has progressive myclonic epilepsy, we are on toppamax and Zonegran and Vit B6. Do we need a PET scan to look inside the brain??
the EEG showed better organization but more SZ activity. She has now began having screaming sz's that will be in a cluster for 5-10 min one lasting 45 min.
thanks for the help!!
Lisa