Wendy,
That is good that you found something that helps her.
Millie
> Actually Oxygen is a drug and therefore you will need a perscription
> for it. Julia will have 60 treatments and dives for 2 hours a day at
> 1.5ATA. We have already seen Julia's seizures become shorter. We
> were seeing 10 minute seizures a few times a day and now the longest
> we have seen is 4 minutes and we are in the process of taking Julia
> off a med. The mental improvements we have seen in less than two
> weeks is AMAZING!!!
>
> We are fortunate to have our insurance cover HBOT due to cerebral edma.
>
> On Tue, Aug 25, 2009 at 5:41 AM, <mylmy@bnin.net> wrote:
>>
>>
>> Sylvia,
>>
>> Welcome to our group.
>>
>> It sounds like Hyperbaric is a teatmaent -- not a med. How often
>> do you need a treatment?
>>
>> What does it constite of?
>>
>> Millie
>>
>>> I worked at San Antonio Hyperbarics for several years. Hyperbaric
>>> treatment did help almost everyone that had seizures, my own daughter
>>> included. It is a bit expensive, about $125-$150 a treatment, depending
>>> on how many you want to do. Most places reccommend doing a round of 40
>>> treatments. Then you take a break and go back in a few months,
>>> depending
>>> on how you do. My daughter did over 300 treatments in a 5 year time
>>> frame. I can tell you from experience it helps a variety of ailments.
>>> Just keep in mind it is not a cure, but in some cases, it has been.
>>> Your
>>> neurologist may not like the idea because hyperbaric medicine is still
>>> considered a treatment for wound care only by most of the medical
>>> community. Do your own research. The staff at San Antonio Hyperbarics
>>> are excellent! Give them a call, they will be happy to answer any
>>> questions you may have. Email me privately if you'd like also.
>>>
>>> --- In epilepsy@yahoogroup
>>>>
>>>> This is amazing!!!
>>>> Keep us posted on how she does. I'm going to ask my daughter's
>>>> neurologist about this when we go see him in a couple of weeks.
>>>> Kim
>>>>
>>>>
>>>> In a message dated 8/23/2009 4:01:35 P.M. Pacific Standard Time,
>>>> wendy.sue@..
>>>>
>>>>
>>>>
>>>>
>>>> Interesting that they didn't discuss HBOT!!! Julia (21 months old)
>>>> has uncontrolable multi focal myoclonic seizures. Julia typically has
>>>> 6 seizures a day each lasting 5 - 10 minutes in duration and we
>>>> typically have to stop a seizure with diastat once in a 3 week period.
>>>> Julia is taking 125 mg of zonagram 2x/day and 100mg of Lictamal
>>>> 2x/day and 325mg/day of vigabatrin (not FDA approved). We also tried
>>>> the keto diet and it did nothing but give Julia the worse case of acid
>>>> reflux. Now 8 days ago we started HBOT and Julia only had 3 yes 3
>>>> extremely short seizures today and is doing so many new things. This
>>>> is SHOCKING!!! They are discovering that seizures arise from parts of
>>>> the brain that are low in oxygen and Hyperberics help promote the
>>>> groth of blood vessles to areas of the body (brain in Julia's case)
>>>> that are low in oxygen. I hope that Julia will be seizure free within
>>>> the next few weeks!! I will keep you all posted. One new thing that
>>>> Julia started doing after one yes ONE treatment was chew her food.
>>>>
>>>> FYI hyperberics are used in the treatment of seizures in China.
>>>>
>>>> Wendy
>>>>
>>>> On Sun, Aug 23, 2009 at 2:33 PM, amanatullah
>>>> Pathan<_dramanatkha
>>>> >
>>>> >
>>>> > wikipedia.org
>>>> > Treatment of EPILEPSY
>>>> >
>>>> > Epilepsy is usually treated with medication prescribed by a
>>>> physician;
>>>> > primary caregivers, neurologists, and neurosurgeons all frequently
>>>> care
>>>> for
>>>> > people with epilepsy. In some cases the implantation of a stimulator
>>>> of
>>>> the
>>>> > vagus nerve, or a special diet can be helpful. Neurosurgical
>>>> operations
>>>> for
>>>> > epilepsy can be palliative, reducing the frequency or severity of
>>>> seizures;
>>>> > or, in some patients, an operation can be curative.
>>>> >
>>>> > [edit] Responding to a seizure
>>>> >
>>>> > In most cases, the proper emergency response to a generalized
>>>> tonic-clonic
>>>> > epileptic seizure is simply to prevent the patient from self-injury
>>>> by
>>>> > moving him or her away from sharp edges, placing something soft
>>>> beneath
>>>> the
>>>> > head, and carefully rolling the person into the recovery position to
>>>> avoid
>>>> > asphyxiation. In some cases the person may seem to start snoring
>>>> loudly
>>>> > following a seizure, before coming to. This merely indicates that
>>>> the
>>>> person
>>>> > is beginning to breathe properly and does not mean he or she is
>>>> suffocating.
>>>> > Should the person regurgitate, the material should be allowed to
>>>> drip
>>>> out
>>>> > the side of the person's mouth by itself. If a seizure lasts longer
>>>> than
>>>> 5
>>>> > minutes, or if the seizures begin coming in 'waves' one after the
>>>> other
>>>> -
>>>> > then Emergency Medical Services should be contacted immediately.
>>>> Prolonged
>>>> > seizures may develop into status epilepticus, a dangerous condition
>>>> > requiring hospitalization and emergency treatment.
>>>> >
>>>> > Objects should never be placed in a person's mouth by anybody -
>>>> including
>>>> > paramedics - during a seizure as this could result in serious injury
>>>> to
>>>> > either party. Despite common folklore, it is not possible for a
>>>> person to
>>>> > swallow their own tongue during a seizure. However, it is possible
>>>> that
>>>> the
>>>> > person will bite their own tongue, especially if an object is placed
>>>> in
>>>> the
>>>> > mouth.
>>>> >
>>>> > With other types of seizures such as simple partial seizures and
>>>> complex
>>>> > partial seizures where the person is not convulsing but may be
>>>> > hallucinating, disoriented, distressed, or unconscious, the person
>>>> should be
>>>> > reassured, gently guided away from danger, and sometimes it may be
>>>> necessary
>>>> > to protect the person from self-injury, but physical force should be
>>>> used
>>>> > only as a last resort as this could distress the person even more.
>>>> In
>>>> > complex partial seizures where the person is unconscious, attempts
>>>> to
>>>> rouse
>>>> > the person should not be made as the seizure must take its full
>>>> course.
>>>> > After a seizure, the person may pass into a deep sleep or otherwise
>>>> they
>>>> > will be disoriented and often unaware that they have just had a
>>>> seizure,
>>>> as
>>>> > amnesia is common with complex partial seizures. The person should
>>>> remain
>>>> > observed until they have completely recovered, as with a
>>>> tonic-clonic
>>>> > seizure.
>>>> >
>>>> > After a seizure, it is typical for a person to be exhausted and
>>>> confused.
>>>> > (this is known as post-ictal state). Often the person is not
>>>> immediately
>>>> > aware that they have just had a seizure. During this time one should
>>>> stay
>>>> > with the person - reassuring and comforting them - until they appear
>>>> to
>>>> act
>>>> > as they normally would. Seldom during seizures do people lose
>>>> bladder
>>>> or
>>>> > bowel control. In some instances the person may vomit after coming
>>>> to.
>>>> > People should not be allowed to wander about unsupervised until they
>>>> have
>>>> > returned to their normal level of awareness. Many patients will
>>>> sleep
>>>> deeply
>>>> > for a few hours after a seizure - this is common for those having
>>>> just
>>>> > experienced a more violent type of seizure such as a tonic-clonic.
>>>> In
>>>> about
>>>> > 50% of people with epilepsy, headaches may occur after a seizure.
>>>> These
>>>> > headaches share many features with migraines, and respond to the
>>>> same
>>>> > medications.
>>>> >
>>>> > It is helpful if those present at the time of a seizure make note of
>>>> how
>>>> > long and how severe the seizure was. It is also helpful to note any
>>>> > mannerisms displayed during the seizure. For example, the individual
>>>> may
>>>> > twist the body to the right or left, may blink, might mumble
>>>> nonsense
>>>> words,
>>>> > or might pull at clothing. Any observed behaviors, when relayed to a
>>>> > neurologist, may be of help in diagnosing the type of seizure which
>>>> > occurred.
>>>> >
>>>> > [edit] Pharmacologic treatment
>>>> > Main article: Anticonvulsant
>>>> >
>>>> > The mainstay of treatment of epilepsy is anticonvulsant medications.
>>>> Often,
>>>> > anticonvulsant medication treatment will be lifelong and can have
>>>> major
>>>> > effects on quality of life. The choice among anticonvulsants and
>>>> their
>>>> > effectiveness differs by epilepsy syndrome. Mechanisms,
>>>> effectiveness
>>>> for
>>>> > particular epilepsy syndromes, and side effects, of course, differ
>>>> among
>>>> the
>>>> > individual anticonvulsant medications. Some general findings about
>>>> the
>>>> use
>>>> > of anticonvulsants are outlined below.
>>>> >
>>>> > History and Availability- The first anticonvulsant was bromide,
>>>> suggested in
>>>> > 1857 by Charles Locock who used it to treat women with "hysterical
>>>> epilepsy"
>>>> > (probably catamenial epilepsy). Potassium bromide was also noted to
>>>> cause
>>>> > impotence in men. Authorities concluded that potassium bromide would
>>>> dampen
>>>> > sexual excitement thought to cause the seizures. In fact, bromides
>>>> were
>>>> > effective against epilepsy, and also caused impotence; it is now
>>>> known
>>>> that
>>>> > impotence is a side effect of bromide treatment, which is not
>>>> related
>>>> to
>>>> its
>>>> > anti-epileptic effects. It also suffered from the way it affected
>>>> behaviour,
>>>> > introducing the idea of the 'epileptic personality' which was
>>>> actually a
>>>> > result of the medication. Phenobarbital was first used in 1912 for
>>>> both
>>>> its
>>>> > sedative and antiepileptic properties. By the 1930s, the development
>>>> of
>>>> > animal models in epilepsy research lead to the development of
>>>> phenytoin
>>>> by
>>>> > Tracy Putnam and H. Houston Merritt, which had the distinct
>>>> > advantage of treating epileptic seizures with less sedation[29]
>>>> advanta
>>>> > 1970s, an National Institutes of Health initiative, the
>>>> Anticonvulsant
>>>> > Screening Program, headed by J. Kiffin Penry, served as a mechanism
>>>> for
>>>> > drawing the interest and abilities of pharmaceutical companies in
>>>> the
>>>> > development of new anticonvulsant medications.
>>>> >
>>>> > Currently there are 20 medications approved by the Food and Drug
>>>> > Administration for the use of treatment of epileptic seizures in the
>>>> US:
>>>> > carbamazepine (common US brand name Tegretol), clorazepate
>>>> (Tranxene),
>>>> > clonazepam (Klonopin), ethosuximide (Zarontin), felbamate
>>>> (Felbatol),
>>>> > fosphenytoin (Cerebyx), gabapentin (Neurontin), lacosamide (Vimpat),
>>>> > lamotrigine (Lamictal), levetiracetam (Keppra), oxcarbazepine
>>>> (Trileptal),
>>>> > phenobarbital (Luminal), phenytoin (Dilantin), pregabalin (Lyrica),
>>>> > primidone (Mysoline), tiagabine (Gabitril), topiramate (Topamax),
>>>> valproate
>>>> > semisodium (Depakote), valproic acid (Depakene), and zonisamide
>>>> (Zonegran).
>>>> > Most of these appeared after 1990.
>>>> >
>>>> > Medications commonly available outside the US but still labelled as
>>>> > "investigational" within the US are clobazam (Frisium) and
>>>> vigabatrin
>>>> > (Sabril). Medications currently under clinical trial under the
>>>> supervision
>>>> > of the FDA include retigabine, brivaracetam, and seletracetam.
>>>> >
>>>> > Other drugs are commonly used to abort an active seizure or
>>>> interrupt
>>>> a
>>>> > seizure flurry; these include diazepam (Valium, Diastat) and
>>>> lorazepam
>>>> > (Ativan). Drugs used only in the treatment of refractory status
>>>> epilepticus
>>>> > include paraldehyde (Paral), midazolam (Versed), and pentobarbital
>>>> > (Nembutal).
>>>> >
>>>> > Some anticonvulsant medications do not have primary FDA-approved
>>>> uses
>>>> in
>>>> > epilepsy but are used in limited trials, remain in rare use in
>>>> difficult
>>>> > cases, have limited "grandfather" status, are bound to particular
>>>> severe
>>>> > epilepsies, or are under current investigation. These include
>>>> acetazolamide
>>>> > (Diamox), progesterone, adrenocorticotropic hormone (ACTH, Acthar),
>>>> various
>>>> > corticotropic steroid hormones (prednisone) corticotropi
>>>> >
>>>> > Effectiveness - The definition of "effective" varies. FDA-approval
>>>> usually
>>>> > requires that 50% of the patient treatment group had at least a 50%
>>>> > improvement in the rate of epileptic seizures. About 20% of patients
>>>> with
>>>> > epilepsy continue to have breakthrough epileptic seizures despite
>>>> best
>>>> > anticonvulsant treatment. [30][31].
>>>> >
>>>> > Safety and Side Effects - 88% of patients with epilepsy, in a
>>>> European
>>>> > survey, reported at least one anticonvulsant related side effect.
>>>> [32]
>>>> Most
>>>> > side effects are mild and "dose-related" and can often be avoided or
>>>> > minimized by the use of the smallest effective amount. Some examples
>>>> include
>>>> > mood changes, sleepiness, or unsteadiness in gait. Some
>>>> anticonvulsant
>>>> > medications have "idiosyncratic" side-effects that can not be
>>>> predicted
>>>> by
>>>> > dose. Some examples include drug rashes, liver toxicity (hepatitis),
>>>> or
>>>> > aplastic anemia. Safety includes the consideration of teratogenicity
>>>> (the
>>>> > effects of medications on fetal development) when women with
>>>> epilepsy
>>>> become
>>>> > pregnant.
>>>> >
>>>> > Principles of Anticonvulsant Use and Management - The goal for
>>>> individual
>>>> > patients is, of course, no seizures and no side effects, and the job
>>>> of
>>>> the
>>>> > physician is to aid the patient to find the best balance between the
>>>> two
>>>> > during the prescribing of anticonvulsants. Most patients can achieve
>>>> this
>>>> > balance best with monotherapy, the use of a single anticonvulsant
>>>> > medication. Some patients, however, require polypharmacy; the use of
>>>> two
>>>> or
>>>> > more anticonvulsants.
>>>> >
>>>> > Serum levels of AEDs can be checked to determine medication
>>>> compliance,
>>>> to
>>>> > assess the effects of new drug-drug interactions upon previous
>>>> stable
>>>> > medication levels, or to help establish if particular symptoms such
>>>> as
>>>> > instability or sleepiness can be considered a drug side-effect or
>>>> are
>>>> due to
>>>> > different causes. Children or impaired adults who may not be able to
>>>> > communicate side effects may benefit from routine screening of drug
>>>> levels.
>>>> > Beyond baseline screening, however, trials of recurrent, routine
>>>> blood or
>>>> > urine monitoring show no proven benefits and may lead to unnecessary
>>>> > medication adjustments in most older children and adults using
>>>> routine
>>>> > anticonvulsants. anticon
>>>> >
>>>> > If a person's epilepsy cannot be brought under control after
>>>> adequate
>>>> trials
>>>> > of two or three (experts vary here) different drugs, that person's
>>>> epilepsy
>>>> > is generally said to be medically refractory. A study of patients
>>>> with
>>>> > previously untreated epilepsy demonstrated that 47% achieved control
>>>> of
>>>> > seizures with the use of their first single drug. 14% became seizure
>>>> free
>>>> > during treatment with a second or third drug. An additional 3%
>>>> became
>>>> > seizure-free with the use of two drugs simultaneously. seizure-free
>>>> with
>>>> the
>>>> > in addition to or instead of, anticonvulsant medications may be
>>>> considered
>>>> > by those people with continuing
>>>> >
>>>> > [Non-text portions of this message have been removed]
>>>> >
>>>> >
>>>>
>>>>
>>>>
>>>>
>>>>
>>>>
>>>> [Non-text portions of this message have been removed]
>>>>
>>>
>>>
>>>
>>
>>
>
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