What Is The Outlook For A Child With Arpkd
The outlook for each child with ARPKD depends on the severity of their disease. As a general guide, the earlier the disease is diagnosed, the more severe it is. For example, a baby with obvious kidney problems at the routine scan will usually have a poorer outlook than a child who is diagnosed later in childhood. Children who are diagnosed later tend to have more symptoms associated with the liver than kidneys. However, this is not always the case, as the disease is so variable.
In general, ARPKD is a very severe disease: about 1 in every 3 babies with suspected or confirmed ARPKD dies from breathing problems during the first 4 weeks after birth. But, about 9 in ten 10 who survive the first 4 weeks of life are still alive at 5 years old. Encouragingly, most children now survive into adulthood and can live full and productive lives.
Theres hope that specific treatments will be available in the future, as we begin to understand more about ARPKD. Studies are underway into possible treatments for a group of genetic diseases similar to ARPKD. Some of these treatments may prove to be of benefit to children with ARPKD.
Do Kidney Diseases Qualify For Ssdi
Luisa worried about her husband, Barry, as his kidney disease worsened. Her primary concern was keeping him as healthy as possible. However, she still had to worry about how they would support themselves if he was no longer able to work. She knew the government had disability programs to help in situations like this. However, she thought disability benefits were only paid to people who were completely unable to function. Luisa wondered if kidney diseases qualify for Social Security Disability Insurance benefits. Thats what we will look at in this article.
Medical Conditions Normally Not Waiverable
Many people who are considering the United States Navy as an option wonder if there may be some mental or physical condition from their past which may preclude them from serving. This post is the first of a two part series which will talk about medical conditions and possibly answer your would I make it with questions. Today I will list the medical issues/conditions which will not be considered for a waiver.
For those issues with time conditions they are listed as such like a severe head injury has a five year waiting period, the waiting period is in place to reduce the possibility there were no long term effects from the injury. Conditions that become aggravated while serving on active duty could in the long run be considered service connected which in turn could lead to future disability benefits. By restricting some known medical issues, such as the ones listed below, will ultimately save the taxpayers money.
Before posting a question, please take the time to read through the comments because you may already had your specific question answered via someone elses question.
Generally, the Navy will not waive the following conditions
If you have hypothyroidism that is controlled by medication, and you have two normal thyroid stimulating hormone tests within the preceding 6 months, you do not require a waiver for the condition because it is NOT disqualifying. You will be able to continue your medication for the condition during boot-camp.
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Getting Ssi For Children’s Kidney Disease
In order to be eligible for SSI , children must meet Social Security’s definition of disability, and their parents must have limited income and resources. To learn more about the household income and resource limits, see our article on qualifying financially for SSI as a child.
Once the income and asset requirements are met, the child must meet Social Security’s definition of disabled. There are two ways that Social Security can determine that your child is disabled. Your child’s kidney disease can be severe enough that it meets the requirements set forth in Social Security’s Listing of Impairments, which lays out the medical conditions that Social Security considers severe enough to be automatically disabling. If those medical requirements are not met, a child can still be found disabled if he or she has significant functional limitations arising from the kidney disease.
Which Body Part Is Not Present When A Baby Is Born
The answer is yes and no. Babies are born with pieces of cartilage that will eventually become the bony kneecap, or patella, that adults have. Like bone, cartilage gives structure where its needed in the body, such as the nose, ears, and joints.
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Transitioning To Adult Services
- As your child approaches adulthood, theyll need to transition from child to adult health services. This can be an unclear time, but can also give your child more ownership of their care. For more information on transition, see Transition from childrens to adults services what you should expect, from the National Institute for Health and care Excellence.
Coarctation Of The Aorta
The aorta is the main artery of the body, and coarctation means it is narrowed or pinched, usually in the upper chest. This means that blood pressure in the lower body is lower than normal.This condition often leads to serious symptoms in the early weeks of life. Symptoms typically occur in the first week of life and include breathlessness and difficulty breathing, and may include collapse.Less commonly, this disorder may not be diagnosed in infancy and may be discovered much later in life during investigations for high blood pressure.
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What Is Solitary Kidney
Solitary kidney is a condition in which a person has a single kidney instead of two kidneys. A person may be born with one kidney , have two kidneys but only one functional or lose one kidney to a disease, such as kidney cancer. People who donate one of their kidneys have a solitary kidney.
The kidneys perform the following:
- Filter waste from the blood
- Help maintain water balance and blood pressure
- Keep the proper balance of minerals in the blood
Most people who have one kidney lead normal healthy lives. Some people experience complications. including reduced kidney function and high blood pressure.
Regular Reviews And Monitoring
You’ll have regular contact with your care team to monitor your condition.
These appointments may involve:
- talking about your symptoms such as whether they’re affecting your normal activities or are getting worse
- a discussion about your medicine including whether you are experiencing any side effects
- tests to monitor your kidney function and general health
It’s also a good opportunity to ask any questions you have or raise any other issues you’d like to discuss with your care team.
You may also want to help monitor your condition at home for example, by using a home blood pressure monitor.
Contact your GP or healthcare team if your symptoms are getting worse or you develop new symptoms.
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If You Are Not From The Uk
If your child is subject to immigration control your immigration status could be at risk if you apply for DLA
If you or your child are subject to immigration control you usually cant apply for DLA but you might be able to apply if you have lived in another EEA country, youre a refugee or an immediate family member of a refugee.
No matter what your childs immigration status is, they must have lived in England Wales or Scotland for a certain amount of time to be before you can apply.
If you are unsure about whether or not you can apply or just want to check anything you can ring one of the helplines listed below:
DLA Helpline
- Settling in bed
- Keeping an eye on their condition or medication
Even if your child is a baby who naturally needs help with the above you still may be giving them more support than another baby of the same age who doesnt have what is classed as a disability eg having to give them treatment during the night
Mobility
You will need to be giving your child more support and supervision when they are getting around outside and this needs to be more than that needed by a child of the same age who doesnt have a disability.
The support you give may be because your child cannot walk or can only walk short distances without feeling uncomfortable or in pain. It could also be that walking has a negative effect on their health or they have severe sight or hearing difficulties.
Treatment Of Ventricular Septal Defect
Treatment for ventricular septal defect depends on the severity of the defect. If the hole is small, it may heal by itself with time, and no treatment other than careful monitoring is needed. Large defects, with symptoms in infancy, may require open-heart surgery. Closing the hole allows the blood to circulate normally, relieving strain on the heart. In some cases, generally in older children when the hole has not closed and is still causing strain on the heart, a catheter procedure may be possible and the defect closed with an implantable device.
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Getting Help With Your Claim
While qualifying for disability is often clear-cut with kidney disease, not all applicants experience a quick or smooth case review. Work closely with your doctor to document your illness and to ensure the SSA has the information and medical records they need to evaluate your claim. You may wish to seek help of an experienced Social Security advocate or attorney as well, especially if your kidney disease prevents you from working but does not meet one of the Blue Book listings mentioned above.
How Do I Apply For Dla
Its important that you apply as soon as your child qualifies so you dont lose out on money you are entitled to.
If you live in England, Scotland or Wales you can apply by contacting:
The Disability Service Centre 0345 605 6055 or textphone 0345 604 5312 and request an application form.
Or you can and apply by filling it in and posting to the address on the form.
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Showing Functional Limitations That Equal The Listing
As mentioned above, if the listing requirements are not met, Social Security may still find that your child is disabled if your child has significant functional limitations due the kidney disease. To be eligible for SSI by “functionally equaling” the listings, you must be able to show that your child has “marked” limitations in two out of six areas of functioning or an extreme limitation in one area of functioning. A marked limitation means that your child’s ability to independently initiate, sustain, or complete activities is seriously limited. An extreme limitation means that your child’s abilities are very seriously limited.
The areas of functioning are:
- acquiring and using information
- attending to and completing tasks
- interacting with and relating to others
- moving about and manipulating objects
- caring for personal needs, and
- health and physical wellbeing.
Because kidney disease can cause learning delays and concentration difficulties, you may be able to prove limitations in the first two domains of functioning: acquiring and using information and attending to and completing tasks. School records and teacher reports, in addition to medical records, would be helpful evidence to support these limitations.
For further information on the domains of functioning and how to prove your child has marked or extreme limitations in these areas, see our article on how to get SSI for a child by functionally equaling the listings.
Qualifying For Social Security Benefits With Kidney Disease
Have you been diagnosed with kidney disease? If so, youmight be eligible for Social Security disability benefits. The Social Security Administration offersmonthly financial aid for people who are unable to work. Kidney disease doesnot automatically qualify forbenefits, but thousands of people who are out of work for a year or more due tokidney disease may be eligible for assistance.
Medically Qualifying withKidney Disease
The SSA maintains its own guide of qualification criteria,known colloquially as the Blue Book. The Blue Book outlines exactly whatsymptoms or test results youll need to qualify with kidney disease. There arethree listings for people with kidney disease:
1. Chronic kidney disease with chronic hemodialysis orperitoneal dialysis. If your ongoing dialysis has lasted or is expected to lastfor at least one year, youll qualify for disability benefits.
2. Chronis kidney disease with kidney transplant. Youll beconsidered disabled for one full year after the transplantafter 12 months, theSSA will review your claim and determine if you still need aid. Keep in mindthat you wont automatically meet a kidney disease listing if youre on thetransplant list, but you will definitely meet another disability listing andstill qualify.
3. Chronic kidney disease with impairment of kidneyfunction. This listing is complicated and requires specific medical tests, butis as follows:
Two laboratory findings of one of the following:
End Stage RenalDisease and Medicare
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What Are Social Security Disability Benefits
The SSA offers two forms of benefits for people with disabilities. The medical criteria that must be met for you to be deemed eligible for disability benefits are the same for both programs. The technical requirements, however, differ between the two.
The first type of benefit, Social Security Disability Insurance , has eligibility criteria that are based on your previous work history. To be eligible for SSDI, you must have worked recently and for a long enough time at a job that required you to pay Social Security taxes. This is because SSDI is funded by taxpayers dollars, so only those who contribute to the system may receive benefits. The SSA calculates the amount you may receive each month by averaging your previous incomes. The average payment for SSDI recipients is $1,100 per month, with a maximum of about $2,600.
The second type of benefit, Supplementary Security Income , is needs-based. It is only available to people who have very limited income and resources. To be eligible, an individual may earn up to $733 per month and have assets valued up to $2,000. A couple may earn up to $1,100 per month and have assets valued up to $3,000. Applicable assets include cash, stocks and life insurance, but do NOT include one primary home and one vehicle.
Starting A Disability Claim
The Social Security Administration provides two different programs for those seeking disability benefits. Under the Supplemental Security Income program, the SSA looks mainly at the severity of the disability and the financial neediness of the applicant. Under the Social Security disability insurance program, the SSA looks at the severity of the disability and whether the individual has paid enough taxes in to the Social Security system.
Social Security claimants with kidney failure requiring dialysis or a kidney transplant may be entitled to a quicker disability determination process. Call the SSA at 800-772-1213 to set up an appointment to apply for disability, or, if you’re applying for SSDI , go online to www.ssa.gov.
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Your Childs Treatment Team
Your childs care team should include:
- a paediatric nephrologist, wholl monitor your childs kidney health and can provide treatment
- a paediatric hepatologist, wholl monitor your childs liver health and can provide treatment
Depending on your childs needs, additional specialists involved in his or her care could include:
- a perinatalogist and neonatalogist, who provide monitoring, care and advice before and after birth
- a paediatric gastroenterologist, who can help to treat any problems with your childs gut or digestion
- a geneticist or genetics counsellor, who can provide information, advice and counselling on inherited diseases
- a feeding specialist or dietitian, who can help to ensure your child gets the nutrients they need
- a psychologist or psychiatrist, who can help with behavioural or psychological problems your child may develop
How Do Health Care Professionals Diagnose A Solitary Kidney
During pregnancy, a health care professional can diagnose kidney agenesis and kidney dysplasia while conducting a prenatal ultrasound. Ultrasound uses a device, called a transducer, that bounces safe, painless sound waves off the fetuss organs to create an image of their structure. Ultrasounds during pregnancy are part of routine prenatal testing.
If a fetus is diagnosed with kidney agenesis or kidney dysplasia, health care professionals may recommend additional ultrasounds before and after the birth to find out how the solitary kidney functions over time and to check for other health problems.
In an adult, health care professionals may diagnose a solitary kidney during an x-ray, ultrasound, or surgery for some other condition or injury.
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Disability Based On Functional Limitations
If your kidney disease does not meet one of the above listing requirements, Social Security will considers the effect of the disease on your abilities. Social Security will look at the patient’s symptoms and decide how they limit the patient’s ability to work. If the doctor has included a detailed opinion about how the disease limits the patient’s ability to work, Social Security will take that into account. Social Security will come up with a “residual functional capacity” rating based on the type of work it thinks you can do .
Some patients with kidney failure or nephrotic disease suffer from bone pain, fatigue caused by anemia, shortness of breath, trouble with exertion, or swelling of the knees or feet. These symptoms can cause problems with walking or standing for long periods of time, which might mean an individual gets an RFC for no more than sedentary work. In assessing your RFC, Social Security also considers factors like the side effects of therapy and medication, the effects of any post-therapeutic residuals, and the expected duration of treatment.
Whats It Like To Live With One Kidney
Most people have two kidneys, but some only have one. There are three main reasons why this could be:
A person is born with only one kidney.
About one in 750 people is born with only one kidney. The medical term for this condition, which is more common in men than women, is renal agenesis. Usually its the left kidney that is missing. Because it is possible to be healthy with one kidney, some people dont find out they have one missing until its discovered on an X-ray or sonogram.
A kidney has been removed due to health problems.
A nephrectomy the surgical removal of a kidney can be necessary if a kidney has been damaged by cancer or another disease, or injured in an accident.
A person donates a kidney.
Every year, thousands of people donate one of their kidneys to someone in need of a healthy one. The recipient is often a blood relative or someone whos close to the donor, such as a spouse or friend. Approximately 87,000 kidneys from living donors were donated from 1988-2008.
What precautions should people take if they have one kidney?
Much of the advice that applies to living with one kidney goes for everybody: eat right, exercise, sustain a healthy weight, stay hydrated and get regular doctor checkups. However, there are special precautions that should be taken by someone living with a single kidney:
What happens if the kidney starts to fail?
Symptoms of kidney failure include:
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