some kind of syndrome or something else? please help

Pervasive Development Disorders (PPDs

•Introduction to pervasive developmental disorders
•What conditions are considered pervasive development disorders (PDDs)? ◦Autism
◦Asperger's syndrome
◦Childhood disintegrative disorder
◦Rett's syndrome
◦Pervasive development disorder not otherwise specified (PDDNOS)

◦Find a local Developmental-Behavioral Pediatrician in your town
•What are the symptoms of pervasive development disorders?
•What causes pervasive development disorders?
•How common are pervasive development disorders? •How are pervasive development disorders diagnosed?
•How are pervasive development disorders treated?
•What research is being done on pervasive development disorders?
•What is the outlook for people with pervasive development disorders?
•Can pervasive developmental disorders be prevented?

Introduction to pervasive developmental disorders
The term "pervasive development disorders," also called PDDs, refers to a group of conditions that involve delays in the development of many basic skills, most notably the ability to socialize with others, to communicate, and to use imagination.
Children with these conditions often are confused in their thinking and generally have problems understanding the world around them.
Because these conditions typically are identified in children around 3 years of age -- a critical period in a child's development -- they are called development disorders.
Although the condition begins far earlier than 3 years of age, parents often do not notice a problem until the child is a toddler who is not walking, talking, or developing as well as other children of the same age.

What Conditions Are Considered Pervasive Development Disorders?
There are five types of pervasive development disorders:

•Autism: Children with autism have problems with social interaction, pretend play, and communication. They also have a limited range of activities and interests. Many (nearly 75%) of children with autism also have some degree of mental retardation.

•Asperger's syndrome: Like children with autism, children with Asperger's syndrome have difficulty with social interaction and communication, and have a narrow range of interests. However, children with Asperger's have average or above average intelligence, and develop normally in the areas of language and cognition (the mental processes related to thinking and learning). Children with Asperger's often also have difficulty concentrating and may have poor coordination.

•Childhood disintegrative disorder: Children with this rare condition begin their development normally in all areas, physical and mental. At some point, usually between 2 and 10 years of age, a child with this illness loses many of the skills he or she has developed.
In addition to the loss of social and language skills, a child with disintegrative disorder may lose control of other functions, including bowel and bladder control.

•Rett's syndrome: Children with this very rare disorder have the symptoms associated with a PDD and also suffer problems with physical development. They generally suffer the loss of many motor or movement, skills -- such as walking and use of their hands -- and develop poor coordination.
This condition has been linked to a defect on the X chromosome, so it almost always affects girls.

•Pervasive development disorder not otherwise specified (PDDNOS):
This category is used to refer to children who have significant problems with communication and play, and some difficulty interacting with others, but are too social to be considered autistic.

she shakes her head as we say no really fast from side to side, she tightens her hands and arms an legs to straight alot. she makes this crow like sound or says something like EEEEEEEEEEE really loud alot, and has really bad temper tantrums (we think she is frustrated because we don't understand what she wants) but she throws things hits out, bites herself bites others, kicks out. she doesn't like it when there's alot of noise or if people around are arguing, laughing loud etc.

my daughter is 3 in june...her eyes are a little wide spaced. ... she makes this crow like sound or says something like EEEEEEEEEEE really loud alot...
i was wondering if any of this sounds familiar to anyone or if you know what it could be? im looking into everything myself as we have to wait 6 months every time to see her doctor.

please help. thanks

Parents’ guide to the investigation of children with developmental delay

You have been given this leaflet to give you more information about what might happen during the assessment of your child’s developmental delay.

What is developmental delay?

Developmental delay is the term used when a child does not progress as expected. For example, your child’s speech may lag behind other children. Or, your child may have been slow to learn to walk. In some children, developmental delay is suspected soon after birth because of feeding difficulties or unusual muscle-tone. In other children, developmental delay is only suspected much later when learning or behavioural difficulties surface at school.


What causes developmental delay?

There are many different causes for developmental delay. It is a common condition affecting 1-3% of the population. The delay may be caused by a child’s genetic makeup (eg Down syndrome), by problems during pregnancy (eg infection), around the time of delivery, especially if very premature (eg bleeding in the brain), early infancy (eg meningitis) or later in childhood (eg head injury). A cause can be found in about half of cases.

Why can it be useful to find a cause?

There are a number of benefits for you and your child to finding out what mightbe causing the developmental delay. These include:

• Helping your child’s health professionals to understand the condition and how it may affect your child in the future
• Helping your child’s health and education and social care professionals to find the best ways to care for your child
• Helping you to find the best way to care for your child
• Helping you, as parents, make contact with a support group and other families
• Addressing concerns you might have about events that happened before your child was born
• Helping you find out whether any future children you or your family have could also have the condition.

A specific diagnosis can be emotionally tough on brothers and sisters too and, especially if the condition is inherited, tensions in the wider family can arise. Emotions experienced by parents range widely but commonly include relief, shock, numbness, grief and guilt. If you feel this way, then contact your health visitor or GP. In time, once the shock has worn off, most families believe that it was worth investigating the cause of their child’s developmental delay. Parents report a sense of ‘being able to move on’.

What if there is no diagnosis?

In spite of investigations, approximately half of children with developmental delay will not receive a specific name for their condition. In those cases where a name is not given, it is common for parents to have a mixture of feelings :

• relief that their child does not have the condition that was being tested for
• disappointment/frustration that a cause has not been found
• isolation that they don’t know anyone else whose child has the same condition

Even if there is no diagnosis, the paediatrician or geneticist may be able to say what the most likely cause of your child’s developmental delay is eg an event during pregnancy or a genetic condition. As medical knowledge improves, you may be given the chance to test your child again. It is important to remember that, with or without a diagnosis, services for your child will not be affected.

And finally….

Remember that developmental delay does not stop a child from having a full and rewarding life. Your child's health and educational professionals aim to help your child have a life as enjoyable and fulfilling as possible. If you do not understand anything in this leaflet, contact your health visitor. Your health visitor may also be able to put you in contact with a relevant support group.

You may also wish to contact Contact a Family a national charity who provides information and support links for families with disabled children. Ph 0808 808 3555 : web www.cafamily.org.uk
Background information on this guide can be found at www.cgkp.org.uk/info/ld

What do I do if I would like a second opinion? You can ask for a second opinion (also known as a further opinion) if you’re not satisfied with the advice you’ve received or the treatment that’s been offered to you by your GP, consultant or other medical practitioner. A medical practitioner may also ask for a further opinion from colleagues when a case is unusually complex or difficult.

You have no legal right to a second opinion. But a request for a second opinion is rarely refused unless there is sufficient reason or the request is not considered necessary. You can’t insist on seeing a particular expert but you shouldn’t be referred to someone you don’t wish to see.

The responsibility for finding a suitable medical practitioner to give a second opinion rests with the referring GP, but you can also make a request for a second opinion to the medical practitioner who provided initial advice. You should try to discuss your reasons for wanting a second opinion with the first medical practitioner in case it’s an issue that can be resolved without a second opinion.

Waiting for a second opinion A second opinion isn’t usually considered a priority case and you may find that you have to wait some time for an appointment. It could also mean having to travel to a different hospital.