After your child has been diagnosed, or even if you are still looking for a diagnosis, it is very important for you to find a good team of doctors to work with. Both you and your child will be spending a lot of time with these professionals, so make sure that they have good references and that you are comfortable with the doctor, especially if your child has a medical condition.
Getting appointments with a paediatrician or a specialist may take time, so I have always taken my children to our GP for smaller medical emergencies. Gp’s are generally easier to see and if they prefer that your little one needs to see either a paediatrician or a specialist, a call from their office will almost always guarantee you an earlier, if not the same day, appointment with the other doctor.
When deciding on which doctor is right for me, I have always kept the following in mind:
How far is the doctor from where we stay?
Choosing a doctor that is far from where you live can be a real problem if your child requires immediate medical assistance, or if they are hospitalised. The commute can be very draining on you and your family. Another point to consider is that after a long drive, your child is tiered and may be irritable, and is not going to be in any mood to co-operate with a doctor or specialist, especially during assessments.
How large is the practise?
I have always preferred smaller practises. It is much easier to get an appointment with the doctor, the waiting time is shorter and the staff and the doctor gets to know you and your child better on a personal level. It also helps when the atmosphere at the doctor is more of a family atmosphere, as this will help your child to relax and make them more co-operative during the appointment.
How available is the doctor?
If you have medically fragile child or a child with a degenerative disorder, it is important to find out how available the doctor is after hours or over weekends. If you do have an emergency or need questions answered, it is of no use to you, to end up with a locum.
How experienced is the doctor?
For me it has always been more important to have a doctor, even one who has less experience with special needs children, who is willing to work with me, to do what is best for my child.
Many experts can be very intimidating and rigid and don’t want to look at a parent’s point of view, work ‘outside the box’ or even consider other possibilities or treatments.
This has never worked for me, I know my child better than anyone else, and at the very least I want my opinion heard.
The expert’s personality
Your instincts are all that matter here. You will be spending many hours with these doctors and experts, you have to like them, and visa versa. After your initial consultation, decide if you and your child like the particular doctor, and how he behaved towards your child. If there is a major personality clash, and you struggle to work together, it is time to look for another doctor; the aggravation is just not worth it!
What to do before a doctor’s appointment.
There can be quite a long wait period for you to get an appointment with a certain doctor or specialist. This gives you time to prepare for the appointment.
- I would advise, that you take someone who knows your child well, with to the appointment. The second set of hands is always helpful, especially during a long assessment or examination. After the appointment, it also helps if you can talk to the doctor without having to deal with a tiered child who wants to leave.
- Get all the information together that you want to take with to the doctor. Speak to all their therapists and find out if there are any questions they need answered. This is where your note book comes in handy, write everything down. You may think that you will remember everything, but once you are in front of the doctor, guaranteed you will forget half of them.
- Two to three days before the appointment, I usually let my child know that we are going to see the doctor. It is always easier if they know the doctor, and this is not their first visit as they know what to expect. If this is their first visit, explain to them exactly what is going to happen at the appointment, this will lessen their anxiety of the unknown and make the appointment go smoother
Questions to ask after a diagnosis
I was so overwhelmed after my children where diagnosed, that my mind just went blank. It was only later that I thought of many questions related to their condition, that I should have asked the doctor. Keep a note book handy and write down any questions that come to mind, or certain aspects of the condition you don’t understand, for your next appointment. To make sure that you and the expert treating your child are clear on what the next step in the treatment is going to be, you can ask them some of these general questions:
- What can I do to help my child right now? Taking immediate action will help you feel more in control of the situation. Discuss which therapies or medical procedures are most essential, but most importantly what you can do on a day to day basis to help improves your child’s health and ability to function.
- Can he recommend any resources, support groups, books or put you intouch with other parents whose children’s have the same diagnosis.
- Ask your doctor about any resources available in your area like therapy, support groups, schools, respite etc.You may have any use for them right away, but knowing what is available will put your mind at ease.
- Find out from your doctor if there is any research or medical trials being done on your child’s condition. I allowed my eldest son to be part of the research when I was going through the “Let’s find a cure” stage. It worked for a while, but when it got to the stage that I felt we where becoming lab rats, I stopped! Needless to say we didn’t find a cure, but we contributed and they are now able to do pre-natal testing and have mapped the gene. My boy’s cannot be helped by this…yet, but maybe in the future other children can be.
- If medication has been prescribed, find out exactly what it is for and if there are any side effects. It took us a while to find the balance that worked to control my son’s epilepsy; it was a matter of trial or error. But is important to stay in touch with your doctor during this time.
The most important thing about a diagnosis is that it gives you options. If you are not happy with the answers you where given, or you have any doubts all about what was discussed in the appointment…get a second opinion. If your paediatrician has recommended a specialist, either get his office to make an appointment with them, or make one yourself when you are ready.
Seeing a specialist who has more experience in dealing with your child’s condition’ will give you more details on what to expect in the future, what the prognosis is and best therapy and treatment to develop your child to their full potential. In the car, on the way home, it’s understandable that you may shed a tear or two, it’s been a heck of an emotional day!
What to expect after the visit
No matter what “labels” have been placed on your child, they are still the same child that you love and cherish.
It is perfectly normal to feel:
- Angry
- To grieve
- To cry
- To question
- To deny
It is perfectly normal to feel this way, and be emotional…if you didn’t you wouldn’t be human after all! When you are ready, wipe your tears and dry your eyes, give your special baby a big hug, and together you can begin the journey of discovering a brand new life with your special needs child.
Come and visit my Special Needs Child site and get more Information, tips and techniques for raising, loving and parenting a child with special needs. Special families need to share stories, resources, and information to inspire and motivate each other on this long journey full of ups and downs, raising a child with special needs.
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