Want a Diagnosis? Here’s How.
I am always inspired by my readers. Questions arise quite frequently about how to medically manage a child with Russell-Silver Syndrome, or how to advocate for a special needs child at the educational level. After communicating and responding to their needs – I will find myself writing about their experiences.
Today is no different. Yet, the topic is not unfamiliar and one I have been writing about for over a year. Diagnoses. How do we get one? The following “brief” information may be a healthy start to getting the best diagnosis and treatment – and is tailored to individuals with children.
Knowledge is power.
It is critical to always have the most recent and/or pertinent health related information with you when visiting your primary care physician. This information should be in a binder and separated with tabs for each specific area of treatment; i.e., Endocrinology, Gastroenterology, Hospitalizations, Lab Results, etc., etc. Having this information in a clear and concise manner will help you answer questions that the physician will most likely ask you: “When was your most recent hospitalization?, What surgeries have you had? What were the treatments for your symptom….etc.”
Having an accurate growth chart is crucial in that you are able to see where the changes in growth have occurred. Keep a copy in your binder and plot the results of the appointment immediately at the time of the exam. The physician should eventually be following catch-up growth – but, should be monitoring “where and/or when” any changes have occurred in weight and height and determine ratios accordingly.
I have an Excel spreadsheet that calculates growth into an actual growth chart – specific to Russell-Silver Syndrome children- of which I print out for my binder.
Did you notice a trend in illnesses – document them. What were the symptoms? Document them. What were the changes in eating and/or behavior during illnesses? Document them. Were there any noticeable differences in growth during illnesses? Document them.
Is it necessary to document every sniffle and cough? It depends! If you believe there was a correlation with other symptoms (such as vomiting only during coughing, and/or vomiting after every meal but no other time and you noticed a significant change in eating habits or some other behavior) then it may be helpful for the physician to know the similarities exist.
I had an Excel spreadsheet of every hospitalization and/or health treatment for my son – including lab results, etc. I then created a graph of each concern (such
as blood sugar levels / discrepancies, liver functions, etc – that were specific to my son’s issues). This helped to see the trends in low blood sugars – which occurred more frequently during illnesses.
This is a MUST. It is easy to tell the physician there is a lack of appetite in your child. Yet a physician will relate better to graphs, charts, and tables as well as take you more seriously if they see an actual log. If they are concerned about vitamin deficiencies, etc. – they can forward your information to a nutritionist and/or
decide to send your child to a nutritionist. The first thing a nutritionist will ask you to do? Provide them with a Feeding Log.
The log typically consists of three to five days of eating habits. With this log, a nutritionist is able to discern what the caloric intake, the ratio of fat, carb, and protein intake as well as nutritional content (vitamins, minerals, etc.). The log will also help the nutritionist understand the child’s eating habits and daily routines – as poor eating is not always the result of a physical issue but sometimes behavioral issue as well. What is the best reason for a feeding log? Proof for the parent about the intake and/or refusal of food – especially if the parent is being questioned!
For Ian and Russell-Silver Syndrome, I included in each log his bowel movements, vomiting episodes and refusals to eat. In addition, I provided “what he was given” and “what his actual intake was”. This helped the nutritionist to monitor his sensory issues to foods.
In my opinion, this is by far the most important aspect of getting a diagnosis. I suggest to families all the time “don’t walk into the doctor’s office yelling and screaming or bullying your way into getting what you want – it won’t work“. The key to a successful appointment and future appointments is to let the doctor do his exam, let him/her ask you questions and give you their thoughts. Once the doc is finished – he/she will probably want to leave the room. Before they put their hand on the doorknob – begin communicating your concerns as follows:
You: “Thank you – I appreciate your taking the time to discuss my concerns. I have a list of questions that I’m hoping we can address before I leave.
So, if I could have just a few more minutes of your time – I would appreciate it.”
Physician: “What are you concerned about?”
You: “I have made a copy of the following (show them your binder of charts, info, etc. and hand them an abbreviated copy) and would like to ask you a few questions. In addition, I would ask that you review the information I have provided in more detail and then consider what our next steps should be.” Remember, you don’t want to inundate them with too much info – so, a copy of the most pertinent information is all that is necessary.
Make sure you have a list of your questions. As the physician was examining your child and offering his/her thoughts along the way, you should also be taking notes and/or checking off anything that he/she answers on your question sheet.
THEN – it’s important to listen to the physician’s answers. If you don’t like what you are hearing and you are feeling as if they are dismissing your thoughts – suggest to the physician you need a clarification.
You may or may not get the answers you want in that initial visit. The physician will need time to review your information and/or concerns. And, they may consult their peers or do their own research before coming to any conclusions.
When our children are sick – we are frustrated and want answers now. If we are relying heavily on instinct and intuition – we are frustrated that no one believes or understands our concerns. BUT, we have to give credit where credit is do – and give physicians a chance to understand our concerns (the documents you provide will greatly help) as well as give them an opportunity to make a GOOD decision/diagnosis.
It’s necessary to get cooperation and collaboration with your physician first before forcing the idea of testing. One more month of discussions is
most likely not going to change the outcome of your child (depending on the severity – this may not be an accurate statement). If after following the above – and then if your physician does not suggest it THEMSELVES – then, you should ask them to consider sending you to a reputable Geneticist.
Once the Diagnosis has been made
…..then you are on your way to providing the best treatment options available for your child.
I have learned so much in healthcare over the last 20 years – and even more so with my son Ian. It’s important to be an advocate for your child – but, it’s also important to make sure that the people you will be dealing with are on your side. The more people on your side, the better the outcome and treatment options for your child will be. Thus, the reason I strongly suggest the steps above for communicating with your physician. Providing back-up data gives you more credibility and highlights your concerns. It shows the physician that you have taken a great step to work with them as well. I never recommend coming up with diagnoses myself and presenting them to the physician. Rather – I strongly suggest giving the doctor the information and letting them come up with the diagnosis. . If you feel confident that after all of your own research that a specific diagnosis is a probable contender and fits the symptoms of your child? Then – bring in the latest educational studies, put the list of characteristics on a piece of paper – compare and check off those symptoms with your child and let the doctor see your results for themselves. The last thing physicians want – is for their parents to make diagnoses.
Of course, if you don’t get what you want within a reasonable time period – then, FIGHT. (There is a positive approach to that too <wink>).