Help Paed! I have a Child with Special Needs (1)

As a Paediatrician with  subspecialty training in Neuro-developmental Paediatrics, I basically take care of all children health issues especially those with physical and mental disabilities. This group of children are often referred to as Children with special needs.
This is a topic I am particularly passionate about especially in the part of the world where I practice with so much ignorance and superstitious beliefs about this wonderful group of children. This post is to provide you with the basic information you should know either as a parent or caregiver with special needs children
Even if you don’t have a child with special needs, you need this information as well to know how to relate better with children and families with special needs.


Who is a  child with Special Needs?

First every single child is special!
But what do we mean when we say “children with special needs”?
Merriam Webster dictionary defined “special needs” as mental, emotional, or physical problems in a child that require a special setting for education.

⦁ This means any child who might need extra help because of a medical, emotional, or learning problem.
⦁ these children have special needs because they might need medicine, therapy, or extra help in school — things that an average child won’t typically need or only need once awhile.
⦁ Basically, these are children with physical and developmental disabilities

Common medical conditions that predispose children to have special needs:-

  • Cerebral palsy
  • Down Syndrome
  • Autism spectrum disorder
  • Intellectual disability
  • Congenital syndromes
  • Hearing impairment “Deaf”
  • Visual impairment “Blind”
  • Learning Disability – Dyslexia, Dysgraphia,
  • Spina Bifida
  • Hydrocephalus
  • Attention Deficit Hyperactivity Disorder
  • Behaviour disorders – conduct disorders, oppositional defiant disorders.

These disabilities can be mild, moderate or severe. Children with disabilities do not constitute a uniform group, We have are children who are completely independent and at the other end of the spectrum are those who are completely dependent on others for every activity of daily living.

Why does my baby have special needs?

  • Disabilities can begin anytime during the developmental period and usually last throughout a person’s lifetime.
  • Most disabilities begin before a baby is born, although some happen after birth.
  • The causes of disabilities in children are often due to multiple factors some of which the affected families have no control over.
  • Sometimes we simply do not know why the condition happened!

Common Causes

The Causes of disabilities BEFORE birth include:

  • Genetic:– Children with Down Syndrome have an extra chromosome 21. There are many other congenital disabilities that have to do with problems at the level of the Chromosomes or genes, some of these may be inherited conditions; others are not.
  • Infections the mother might have during pregnancy affecting the baby in the womb – popularly called the TORCHES can lead to birth of babies who may later have disabilities such as Cerebral palsy, deafness, blindness.
  • Malformation of the brain, spinal cord and other vital organs causing hydrocephalus, spina bifida.
  • Parental health and behaviors (such as smoking and drinking) during pregnancy can cause Fetal alcohol syndrome.

Causes AFTER birth include;

  • Prematurity – babies born before 37 completed weeks of pregnancies
  • Complications during birth – failure to cry at birth (birth asphyxia), birth injuries (Erb’s palsy).
  • Severe Jaundice
  • Severe infections in the early newborn and infancy period especially involving the brain (meningitis)
  • Exposure of the mother or child to high levels of environmental toxins, such as lead.

Disabilities and Prevention

Disabilities and Prevention

Can it happen again? How do I prevent my child from having this challenge again?
Some forms of disabilities can be prevented by simple measures and these include;

• Folic acid intake by all women of the child bearing age – this prevents the spina bifida, hydrocephalus
• Avoidance of smoking and alcohol consumption by pregnant women
• Early registration and proper antenatal care can prevent early deliveries of preterm babies
• Supervised deliveries by skilled medical professionals and well-equipped centres for emergency obstetric care to prevent birth complications
• Early detection and treatment of some medical diseases in neonatal and infancy period especially jaundice and severe neonatal infections
• Screening for the genetic disorders
• Early presentation to the Hospital and diagnosis and treatment of the disabilities to avoid further worsening of the disability and development of secondary complications


Disabilities: – Myths and Misconceptions

There are so many myths and misconceptions rampant in the African society about children with disabilities. These misconceptions often lead to further societal stigmatization of people with disabilities.
They are also contributory to children with disabilities not achieving their maximum potential.
There is no scientific basis for these myths and misconceptions and they are often rooted in ignorance and superstitious beliefs.
Common myths and misconceptions on disabilities include;

  • Spiritual cause – Most disabilities are not due to spiritual causes as we have stated the causes above. They are not due to demonic afflictions or witchcraft.
  • Disabilities are contagious – Associating or interacting with children with disabilities does not mean the person will also develop disabilities. There is a belief that a pregnant woman who stays around such children will have children with disabilities; that is not true.
  • Society rejects/outcasts – people with disabilities are believed to be unnecessary burden to the society who can never be productive or achieve anything in life. This is responsible for the high rate of physical abandonment and/or neglect of such children. Such children are even killed at times in extreme cases. This is cruel and criminal. Children with disabilities with the right support can live to achieve their maximum potential.

Famous People with Disabilities

Disability is not a death sentence! Children and adults with special needs and disabilities can live good quality lives that can benefit the society despite the challenges they may face.
A brief Google search will reveal many successful people in the world with disabilities ranging from a former US President to many athletes, authors, evangelists in the recent past and contemporary times as well.

This is not limited to the developed world. In Nigeria, we have our own successful people with disabilities. Cobhmas the prolific music producer is blind. Tobiloba Ajayi is a lawyer and CP advocate with cerebral palsy. Many children with special needs have done Nigeria proud by winning gold at the Special Olympics. With advancement in technology are living full and productive lives.

A very inspirational example is Nicholas James “Nick” Vujicic, an Australian Christian evangelist and motivational speaker born with Phocomelia, a rare disorder characterized by the absence of legs and arms. He has written books, married with two children and often speak to thousands of people to motivate them to fulfill their maximum potential.

This is not limited to the developed world. In Nigeria, we have our own successful people with disabilities. Cobhmas the prolific music producer is blind. Tobiloba Ajayi is a lawyer and CP advocate with cerebral palsy. Many children with special needs have done Nigeria proud by winning gold at the Special Olympics. With advancement in technology are living full and productive lives..

Conclusion:

We should all seek to understand children and individuals with disabilities and support them in achieving their maximum potential.
There is always hope and ability in every disability!

Help Paed! I have a Child with Special Needs (2)

This is the concluding part of the article on what parents and caregivers need to know about children with special needs. Having to take care of a child with special needs come with a lot of challenges, these are not insurmountable with the right help…

What Kind of Help do I Need?

Two categories of Help are needed :-
• for the children with special needs
• for the parents/caregivers/siblings/families.


Help for the Children

• Diagnosis – what is the condition my baby really have. Never assume; get a professional to evaluate your child and confirm the diagnosis
• Treatment – medications
• Treatment – therapies
• Psychological support
• Education
• Community inclusion/participation
Early diagnosis;

  • Diagnosis – what is the condition my baby really have. Never assume; get a professional to evaluate your child and confirm the diagnosis.
  • Treatment – medications
  • Treatment – therapies
  • Psychological support
  • Community inclusion/participation

Help For the Children;
Children observed to have obvious physical disabilities or delay in achieving their milestones should be taken to the Hospital to see a Paediatrician for proper evaluation and treatment. Early diagnosis and intervention often lead to better outcome for affected children especially for children with mild to moderately severe disabilities.

Treatment and therapies;
There are some disability cases that have definite treatment if picked up early for example a shunt can be inserted for children with hydrocephalus. Others may not have specific and definitive treatment but can be managed through therapies such as physiotherapy, occupational therapy, speech therapy and use of assistant-devices.
Inclusive education;
Children with some special needs can attend the mainstream schools that offer supportive and inclusive education. All children with disabilities should be encouraged to achieve their maximum potential by being offered education. For those who cannot attend school, there are special needs schools that may be more appropriate. You can discuss with your Developmental Paediatrician about the best centres available for placement for your child
Support group;
It is quite tasking and overwhelming to take care of children with special needs children. It is important to get all the support you can from friends and families. This may also include joining support groups available for various disabilities organized by organizations and centres who take care of children with special needs. Sometimes, you just need to know you are not alone and don’t be ashamed to ask for help.

Professionals Involved In The Care Of Special Needs Children

• Developmental Paediatricians
• Physiotherapists
• Speech therapists/Audiologists
• Occupational therapists
• Behaviour therapists
• Special education teachers
• Psychologists
• Specialists – psychiatrists, orthopaedic surgeons, Neurosurgeons, ENT
• Diagnosis rest with the Paediatricians especially the Developmental Paediatricians and/or Paediatric Neurologists.
• Diagnosis can be undertaken to a large extent in the Teaching hospitals.
• Some Private assessments by the therapists and schools
• Confirmation via imaging – CT Scan , MRl available though expensive.
• Genetic testing /metabolic – very limited but can be arranged with partners in neighbouring African countries especially South Africa, UK, USA

FOR THE PARENTS/SIBLINGS
• Spiritual – Pastors, Imams, religious groups
• Family – extended family esp grannies, siblings
• Psychological support – psychologists, organizations
• Financial support
• Information and awareness
• Education – Be the expert in that condition that your child has
• Advocacy

 

Challenges parents/family face in care of special needs children?
• Burnt out
• Depression
• Stigma
• Loss of income
• Financial challenges
• Marital challenges
• Lack of support by external family and friends
• Lack of facilities and therapists/specialists for the child
Practical steps in managing a child with special needs
• Get a diagnosis and get it early
• Take time to get well informed about the condition – know the life cycle or prognosis so you don’t get too frustrated
• Seek help in the right places at the right time – Don’t wish the condition away.
• Focus on what the child can do and what you can do something about instead of what you can not handle
• There is nothing wrong with spiritual intervention but do not neglect the medical intervention
• Always take decision in the best interest of the child
• Get Support – it is virtually impossible to do it alone….DO NOT BE TOO STRONG!!!
• As you take care of your child, remember the child is dependent on you; so you are very important to the child as well; so take care of yourself!!!
Tips to taking care of yourself
• Know you are not alone
• Psychological support
• Support Group
• Surround yourself with people who are positive
• Turn your lemon to lemonades
• Prayers
• Respite care

ATP Group Discussion – Family planning (Dr. Rotimi Adesanya)

General Health and Wellness  ATP GROUP DISCUSSION – FAMILY PLANNING (DR ROTIMI ADESANYA) Family planning (FP) allows individuals and couples to anticipate and attain their desired number of children and the spacing and timing of their births. It is achieved through use of contraceptive methods. Contraception means prevention of pregnancy, it is just one part … Continue reading “ATP Group Discussion – Family planning (Dr. Rotimi Adesanya)”

General Health and Wellness  ATP GROUP DISCUSSION – FAMILY PLANNING (DR ROTIMI ADESANYA)

Family planning (FP) allows individuals and couples to anticipate and attain their desired number of children and the spacing and timing of their births. It is achieved through use of contraceptive methods. Contraception means prevention of pregnancy, it is just one part of FP. In Nigeria alone a lot of women die from childbirth, More than 10 women out of every 1000 die in the rural areas. It’s slightly lower in the urban areas.


FP gives women opportunity to space their children. The risk of maternal depletion such as anemia, malnutrition, exhaustion, and emotional stress is reducedWhy are we talking about this on this platform: FP is one of the key points of child survival strategy. Considerations when choosing contraception should include accurate information about: Effectiveness in pregnancy prevention, health issues which may limit some choices, ease of use side effects including changes to usual periods, benefits other than contraception, cost and availability , reversibility, protection against sexually transmissible infections (STIs),religious or moral beliefs. No method is 100% effective except abstinence

Abstinence: Effectiveness (chances of NOT getting pregnant) is 100%.
Is abstinence possible in marriage, yes, if your partner is on vacation for study, career or abroad for greener pastures!
There are a number of different methods and it is important to choose one that best meets your needs and circumstances.

The most effective reversible methods are the “fit and forget”Intrauterine devices (IUDs) popularly called coil and contraceptive implants because they last longer.
We called them fit and forget because they are long-acting reversible contraceptives. IUDs and implants: are suitable for women of any age, can be used by most women, even if they have any significant health issues, can be removed easily at any time by a trained health professional and are immediately reversible on removal, involve an insertion and removal procedure by a doctor or nurse, provide no protection against STIs.

The Copper intrauterine device is a small device made from plastic and copper that is fitted inside the uterus. They stop sperm from reaching the egg and any fertilized egg from sticking to the wall of the uterus. They have no hormones and therefore have no effect on the normal female cycle but periods may become heavier when using a copper IUD. Cu-IUDs are 99.2% effective. IUDs need to be replaced every 5-10 years depending on their type or can be removed easily at any time. The hormonal IUD – Mirena®is a small T-shaped device that is fitted inside the uterus (womb). Over a 5 year timeframe, it slowly releases a very low dose of progestogen hormone into the uterus. Periods usually become lighter or may stop when using a hormonal IUD. It is very expensive, the price is about 20xce the other forms of IUD.The hormonal IUD is 99.8% effective. The good news is that all the methods mentioned so far don’t affect breastfeeding.

The advantages of the IUD are; it is easy to use, does not interfere with breastfeeding. has low maintenance method, can be easily inserted and removed in a clinic or doctor’s office, has no systemic side effects. Also depending on the type they can be left in place 1, 5, or 10 years and reduces the risk of tubal pregnancy.
The disadvantages of the IUD are; must be inserted and removed in a clinic or doctor’s office. Maybe some cramping or pain at the time of insertion may experience increased bleeding or cramping during periods. Also, there might be spotting between periods.

The contraceptive implant is inserted directly under the skin, on the inner arm above the elbow, where it continuously releases a low dose of a progestogen hormone into the blood stream over a 3-5 year timeframe. The implant works by preventing ovulation (egg release from the ovary). Devices need to be replaced every 3-5 years depending on the type or can be removed earlier if required.Implants are 99.9% effective. Commonly available implants are Implanon, Jadelle, and Norplant.

Contraceptive injections – Depot medroxyprogesterone acetate (DMPA).The contraceptive injection is given by an injection into a muscle every 12 weeks. It prevents pregnancy by stopping ovulation. Periods may stop while using DMPA and there may be a short delay in return to usual fertility. Only need to get a shot 4 times a year. You must go to the clinic or doctor’s office 4 times a year.DMPA is 94-99.8% effective.
The other hormonal types are shorter acting hormonal methods include the contraceptive vaginal ring – NuvaRing®; contraceptive Patch, the Combined oral contraceptive pill (The Pill) and the Progestogen-only contraceptive pill (mini pill).Pills rely on regular and consistent daily use to be effective.

Barrier methods are condoms and the diaphragm. They prevent semen from entering the uterus and can be an effective method of contraception when used consistently and correctly. The male condom is 82-98% effective for pregnancy prevention and consistent use is very important if they are the sole method of contraception. Condoms can be used in conjunction with other methods to increase contraceptive effectiveness. The female condom is a polyurethane sheath, which is inserted into the vagina before sex. It has two flexible rings to keep it in place in the vagina. The female condom is 79-95% effective.

Lactational Amenorrhoea Method (LAM): LAM is the use of breastfeeding as a contraceptive method. Breastfeeding reduces the probability of ovulation (egg release) occurring, therefore reducing the chance of a pregnancy.LAM is 98% effective when all 3 criteria are met: menstrual periods have not returned, gave birth less than 6 months ago, fully breastfeeding ( not feeding the baby with any food or milk supplements).It is not an effective method of FP after 6 months.

Emergency contraception (EC) can reduce the risk of unintended pregnancy after unprotected sex.EC is not a method of regular contraception. There are two types of EC − the emergency contraception pill (ECP), a pill containing a progestogen hormone and the Cu-IUD.The ECP can be taken up to 5 days after unprotected sex but it is most effective if taken in the first 24 hours. When taken in the first 72 hours (3 days), it prevents about 85% of expected pregnancies.Example is the popular postinor 2 and Plan B, Only method used to prevent pregnancy when a female condom was inserted or removed incorrectly or after a torn male Condom. Risk of Ectopic (tubal) pregnancy may be a possible result.Most women don’t have this information that a copper intrauterine contraceptive device (Cu-IUD) can also be used as EC. When inserted in the first 120 hours (5 days) after sex, it prevents about 99% of expected pregnancies. A Cu-IUD then provides immediate and ongoing contraception.

Permanent contraception (sterilization) for men or women involves a small operation by a surgical doctor with general or local anesthesia. Sterilization is permanent contraception which can’t be reversed, sterilization methods are 99.5% effective.
Female sterilization (tubal ligation) involves an operation blocking the Fallopian tubes to stop the passage of the ovum (egg). It is usually performed under a general anesthetic.

Male sterilisation involves an operation on the vas deferens to prevent sperm formed in the testes from joining the ejaculate fluid. It can be performed under local anaesthetic, often with light sedation.After vasectomy, a man will look and feel the same as before. He can have sex the same as before. His erections will be as hard and last as long as before, and ejaculations of semen will be the same. He can work as hard as before, and he will not gain weight because of vasectomy. Contraceptive injections for men are not yet available, but clinical studies suggest that the combination of the hormones testosterone and progesterone may provide a safe, effective and reversible method of male contraception in the future.

Family planning methods can be used by both men and women. The methods are even more effective when both partners are involved and supportive of each other. FP does not cause infertility but when a woman goes off the family planning method, it may take a few months for cycles to return to normal or for her to get pregnancy.
Some family planning methods may cause side effects but these are manageable and usually disappear with time. Some women may experience headaches, irregular bleeding, mild abdominal pain, weight change among others. The injectable and implant DOES NOT cause cancer, they actually provides a protective effect from cancer of the ovaries and cancer of the endometrium.

Space your children so that they will get the best of social, health, psychological and mother care. Also, men should support the women in making choices about family planning, no woman should be allowed to suffer because of unplanned Family.

Contraceptive injections – Depot medroxyprogesterone acetate (DMPA).The contraceptive injection is given by an injection into a muscle every 12 weeks. It prevents pregnancy by stopping ovulation. Periods may stop while using DMPA and there may be a short delay in return to usual fertility. Only need to get a shot 4 times a year. You must go to the clinic or doctor’s office 4 times a year.DMPA is 94-99.8% effective.

Written by: Dr Rotimi Adesanya, A Family Physician

Reducing Malaria Infections and Malaria Deaths in Children

CHRONIC ILLNESS  Reducing Malaria infections and Malaria Deaths in Children

It was the World Malaria Day recently on the 25th April 2016. The theme for this year was on ending Malaria for good! What a lofty but achievable dream.

On the Ask The Paediatricians Facebook Group we had a Group Discussion on Malaria anchored by Dr Chudi Godsons.

Here are some important facts about Malaria in Children you need to know.

As parents, you are part of the Squad in the fight to eradicate Malaria completely. Knowledge is very key in this war. This post gives all the information you need to know about Malaria.

World Malaria Day!
World Malaria Day!


What causes Malaria in Children?

Malaria is caused by a parasite called plasmodium, which is transmitted via bites from mosquitoes (female anopheles) which introduce the parasite into the bloodstream.
This is the commonest means of transmitting malaria in children, however there are other ways of transmitting this infection including blood transfusion (infected blood) and trans-placental (through the placenta in pregnant women).
The Malaria parasite lives and feeds on blood (blood borne infection), specifically the red blood cells (RBCs).

malaria in children
malaria in children

Why is Malaria in Children important?

Children are vulnerable to malaria attacks and also are more likely to have severe forms of the infection compared to adults.
Young children, having a poorly developed immune system, can easily develop malaria even with just one bite from mosquitoes.They are also at increased risk of adverse clinical outcomes including anemia and death.
Can malaria be completely eradicated/ prevented among children?
Inasmuch as it might sound oversimplified, the answer is yes. But ALL hands must be on deck to achieve this common goal.Matter of fact in well developed countries, malaria is a rare occurrence. We can replicate same in sub Saharan African including Nigeria.

What are the common symptoms/ presentation of malaria in Children?

  • Fever
  • Sweating
  • Diarrhea and vomiting,
  • Chills and shivering
  • Headaches (children that are old enough to express themselves can give a history of persistent headaches)
  • Fatigue, weakness
  • Poor appetite & cough
  • Anemia – shortage of blood is a symptom that follows malaria
  • Enlargement of the spleen
  • Dehydration

What are the risk factors of malaria in children?

  • Residence in, or travel through, a malarious area (endemic area)
  • No previous exposure to malaria (hence no immunity), for example foreigners.

What are the complications of severe malaria?

Malaria can be fatal, especially the variety that’s common in tropical parts of Africa. In most cases, malaria deaths are related to one or more serious complications listed below:

  • Cerebral malaria – this is one of the dreaded complications of severe malaria. It is a common outcome of poorly treated or untreated malaria in children. Here the parasite-filled blood cells block small blood vessels to your brain (cerebral malaria), leading to swelling of your brain or brain damage may occur. This may cause coma and death.
  • Breathing problems due to accumulated fluid in the lungs of children.
  • Multi Organ failure. Malaria can cause the kidneys or liver to fail and even the spleen to rupture. Any of these conditions can be life-threatening.
  • Anemia – Malaria damages red blood cells, which can result in anemia.
  • Low blood sugar. Severe forms of malaria itself can cause low blood sugar, as can. Very low blood sugar can result in coma or death.

So how is the diagnosis of malaria in children made?

The gold standard is blood tests for malaria parasite. This can show the presence of the parasite and same time, help tailor treatment by determining whether your child has malaria. Some blood tests can take several days to complete, while others can produce results in less than 15 minutes.

What are the treatment options of malaria in children?

Artemisinin-based Combination Therapy (ACT) are the anti-malarials recommended in Nigeria. They are safe and well tolerated by young children. Examples of such ACTs include arthemeter-lumefantrine, artesunate-camoquine and so on.
For severe malaria, the children may require injectable antimalaria initially at the beginning of the treatment.
Please avoid the use of antimalarials like Chloroquine which are no longer in use due to malaria parasite resistance to them. Such practice delays effective treatment and can lead to complicated malaria that can result in deaths.
Also avoid random self-medication and treatment of every fever as Malaria. Malaria must be confirmed by the laboratory tests before treatment.
Always go to the hospital for the tests and prescription of antimalarials by the doctors.
Ensure children take the adequate doses and complete the full treatment even if they are already feeling better.

The preventive steps for Malaria are simple and include:

  • Use of long-lasting insecticidal treated nets. If we prevent the contact between mosquitoes and children, then ultimately, we will banish malaria to pits of hell.
  • Indoor residual spraying – this helps to kill off mosquitoes in households
  • Intermittent preventive treatment of malaria in children especially in areas of high malaria transmission.

In conclusion, Malaria is common here in Nigeria and many parts of Africa; and virtually everyone has had malaria at one point in time or the other. Yet it is important to know that Malaria is a killer especially in young children and pregnant women.
Early confirmation and diagnosis will lead to early treatment with safe ACT antimalarials.

Armed with correct information, together as parents we can end Malaria for good by year 2030!!!

Thank you for reading and I look forward to reading your questions and comments.
You can also join the live discussion on the Ask The Paediatricians Facebook Group.