Hello. I'm new.

[angel]

my youngest son has cerebral palsy he at times has some intresting mood swings he has a tendency to become over stimulated in stressful situations(school fighting with brothers having to clean his room lots of things...) he will get upset be really mouthy then he usually falls asleep... then hes himself again...

he has slight cerebral palsy meaning he can walk run move his hands his speach imparment which makes him hard to understand sometimes this causes him stress at times around family members and others who ignore him if they cant understand him.... hes learned if im around to just look at me if someone cant understand him so ill tell them what hes saying...( or ask him to speak slower) ive seen him have a sps one time.... im not going to have him put on meds unless he really needs them as of right now hes fine with out all the meds just diet change has helped him so much vegge's no sugar only a little sometimes pretty much a ballanced diet.... seems to help hes 12 almost 13 years old...

love angel

 

[angel]

The Effects of Aging and Cerebral Palsy

http://www.cpconnection.com/Aging/index.htm

Older Adults

As the adult experiencing the effects of normal aging, there are many physiological and psychological factors which impact the course of this period. Literature which examines the issue of older adults with CP agree that the aging process begins to affect them more quickly and at a younger age than non-disabled people (UCPA, 1993; Overeynder et al., 1994; Miller & Bachrach, 1995). The physical challenges of CP intensify with age, frequently resulting in increased spasticity, fatigue, and the loss of strength and mobility (CPA, 1994). Rapid aging in combination with a lack of assistance and professional awareness increases anxiety for older adults.



A total of 279 adults with cerebral palsy from across Australia responded to a survey which sought information about their health, modes of communication, access to information and perception of their own aging process. Results indicated:
Believed that their physical condition was changing 77%
Aging not affecting lifestyle 11%
Discuss their condition of aging and CP with others 57%
Taking medication 78%
Plans to Retire 22%
Source: Journal of Intellectual & Developmental Disability, Jun98

 

[angel]

Adults with Cerebral Palsy and those who deliver services to this population have both expressed some concern that individuals with Cerebral Palsy may experience negative effects of the aging process earlier than non-disabled individuals. People with CP generally notice the effects of aging at an earlier age, with a more rapid decline in function than in the non-disabled majority. Disabilities which have a long duration can produce excessive wear and tear on the muscular, skeletal, and other body systems. As such, individuals with CP are experiencing unexpected declines in function and energy levels prematurely. These effects have been found to occur as early as thirty years of age (UCPA, 1993).

Arthritis is a common condition found in people with cerebral palsy. Statistics show that 40% of the people with cerebral palsy get arthritis at an early age. Other secondary health problems often appear at a more serious level because of cerebral palsy, the primary disability. I have personally experienced this as I have become older, particularly in my knees. On rear occasions it can be pretty unbearable.

Even without the complication of another disability, the aging process itself has its impact. As people with Cerebral Palsy get older, they take longer to do things such as walking, dressing or eating. They may require a personal assistant to complete the task. They slow down physically and can't do as many things as they once did when they were young. I personally have tried to keep myself in shape as much as is physically possible, but I have noticed over the years it has taking me longer to do daily activities. I have especially noticed this in trying to get dressed each day.

Depending on lifestyle and type of disability, living 20 to 30 years with a disability can produce wear and tear on the muscles and other body systems. Most people with major physical disabilities of a 30-year duration note some tenderness and soreness in joints, as well as muscles and tendons that have been carrying an extra load because of impaired physical functioning in other parts of the body.

 

[angel]

Most people born with a disability know from early childhood that they are differently able than their non-disabled peers. This somewhat prepares them for the effects of aging. Others with disabilities, however, are sometimes very surprised when the aging process accelerates and they experience an unexpected decline in their energy and activity levels.

The work place is often where social supports and other resources are developed. So the transition to retirement causes a variety of concerns for people with cerebral palsy including health care, loss of income and loss of contact with friends. They are often forced to retire due to physical limitations and lack of flexible work schedules.

Furthermore, the transition from being able to walk either independently or with a device to not walking at all has profound psychological effects. Some people have been raised with the thought that if you walk you will pass. For today's generation, dependence means more than giving up freedom and social status; loss of dependence raises the threat of being placed in an institution. Given this threat, it is no wonder that there is a fear of growing old in the CP community.

Unfortunately, there is not much authoritative information available to help deal with these problems. The combination of aging and a disability is an unexplored area and each person is different, depending on the severity of the disability. There are doctors who specialize in children with CP, but very few doctors specialize in adults with cerebral palsy, let alone health concerns associated with advancing age.

 

[angel]

One of the most pressing concerns is that physicians are incapable of effectively guiding and developing the most effective practices to treat their condition. Additionally, older adults with CP express a difficulty in locating doctors who are willing to provide care for them. Inadequate information on preventative care seems to be the underlying issue concerning the deficit in medical attention for adults with CP. One study used a representative population and revealed that an overwhelming proportion (90 per cent) of adults with CP do not receive periodic general health evaluations.

Lack of medical attention advances the onset of secondary conditions which will often produce greater need for specialized care. Secondary conditions which affect people who are aging with CP include: changes in mobility, increased fatigue, spasticity, increased pain, possibilities for developing arthritis, incontinence, and musculo-skeletal problems (Overeynder et al., 1994). Studies have examined the prevalence of other secondary conditions in older individuals with CP. Janicki (1989) revealed that aging is linked to increases in the rate of visual, auditory and ambulatory impairment, in addition to decreases in levels of independent functioning in the activities in daily living. A positive conclusion drawn from this study is that the occurrence of seizure disorders decrease with advancing age.

The results of a study of the medical and functional status of 101 adults with cerebral palsy aged 19-74 years conducted in the USA indicated that the people experienced infrequent general health problems. However, both males and females experienced problems with urinary tract infections and incontinence.
Did not have regular medical checks 90%
Dental problems 25%
Neck pain 46%
Back Pain 36%
Source : Journal of Intellectual & Developmental Disability, Jun98

 

[angel]

A positive conclusion drawn from this study is that the occurrence of seizure disorders decrease with advancing age.

that maybe why the doctors are thinking hes having just stress related anxiety.... all I can say is your brother maybe experiencing some health issues thats really scary for him and hes not fully expressing himself to everyone...
.
he should have an EEG and other test related to Epilepsy..

hope this helps

love angel

 

[wonderdogs]

Welcome to CWE. I am new to the diagnosis myself and I can't offer any more advice but I hope your brother gets the help that he needs.

 

[Amy]

Dear Anne, Welcome to the forum. I too joined very recently & strongly feel you have come to the right place for help.
Can your brother say something if he is in pain, during that episode?? My child (now 9) was also having similar incidents a few times, though not identical. Suddenly he starts to run around, jumping on the couches, trying to fall upside down, filling water, throwing on carpet, throwing all toys, crying like hell.... He is usually a very soft, calm child & would never do any of these. So we were very shockd to see his sudden action, he seemed conscious but was not in a position to answer any of our question. Though he has some speech delay, he can usually tell us if he is hurting somewher... That time, he was clueless, we can tell he was in acute pain or fear anxiety. we even called his neurologist right away, sh could hear him ovr ph & our dscription, she said it was not a seizure... Then I ran behind him wherever he went, just making sure he was safe, but we could no way stop him from any of his actions. it lasted for ~3 min then he calmed down. we took him for a car ride, then he cam home and slept off. That time he was on a medication and we thought it would have been the side effct of that med. & stopped it right away. Thank god, he didn't get that later.
Hope your dr will b abl to help him with som med. And there are awesome advisors in this group. (sorry my lettr "e" on the key board doesn't work wll).

 

[Anne]

Thank you for all of your input. It has been very helpful. I certainly wasn't aware of the problems of cerebral palsy and aging or the TLE stuff. Anyway, I just got off the phone with my parents. I asked them a lot of questions and found out that he is not currently seeing a neurologist and hasn't seen one for years. He has been to lots of doctors but they just try anti-depressants, give up, and send him to another doctor. The doctor he is seeing now is a psychiatrist. He has a visit scheduled Friday so they are going to go and insist that she refer him to an Epilepsy specialist. (Are there any good epilepsy doctors in Amarillo, TX?) They are going to insist on an EEG and bloodwork. He had another spell yesterday; it started at church. Today he almost had another one, but was able to stop it by taking two of the nira-pam. They are really getting worried by the closeness of these. Also, someone asked if he was able to talk during these episodes; He is usually coughing and gasping for air, running, and making almost swimming motions with his hands, so he is winded, but Dad said that occasionally he will stop and say, "I'm sorry. I don't know why I can't stop doing this." He feels terrible remorse afterward.
Anyway, I know all of your input has helped them see that they have to be forceful in their insistence that he see another kind of doctor.
Thanks much.

 

[Anne]

update

well, the doctor did listen to them, I think. She told them that there are other kinds of epileptic seizures other than gran mal and petit mal and he might be having one of those kinds. She ordered him to take one of his nirazam tablets in the morning and one in the evening (instead of just when he feels a seizure is imminent). He is also to carry them with him at all times and his wife is to carry them too. She visited a long time with both of them and took a careful history. I think if he has another seizure she will refer him to a neurologist for an EEG.

I have one more question: My brother says that he had an EEG about five years ago and it showed nothing wrong. What must show up on an EEG for there to be a diagnosis of epilepsy and is it different for TLE with partials?

 

[Bernard]

Hi Anne, check out the epilepsy 101 thread.

 

[Anne]

Thanks for the direction. I printed it off and am sending it to them.