Hi everyone.

 

Our sweet son has his first appointment with the DMD Clinic at our Childrens Hospital. Do you have suggestions for me as to what questions to ask, wisdom to offer on what to expect or any other helpful tips. i would love to feel ready for this appointment and look forward to hearing what you each have to share.

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Dear Mrs. Joseph Wood,

A caveat: my advice comes from my own experience and I request that you take it with a grain of salt. You and your family are unique and no one is more of an expert on your needs than you are.

You are embarking on a set of long-term relationships with the care providers at your clinic. It is to be hoped that these relationships will be based on mutual respect, care and understanding. I urge you to be yourself. Politeness is always appropriate but honesty is essential. Your team will be learning about your personality, parenting style, goals, wishes, dreams through your words and actions over the years you will be working together. I believe that the more information the clinic team has about us and vice versa, the better we can collaborate on meeting our goals as a unified team, and the better we can serve our sons as they grow into manhood.

The first clinic visit tends to be overwhelming. It is very challenging to keep all of the providers and their advice straight. It is probably wise to be prepared with a list of questions, whatever questions occur to you. The PPMD website is a great resource for learning more about DBMD and inspiring questions, which will be unique to you and your family. Know that this is not your only chance to get your questions answered and you can always contact your clinic team at any time for clarification, repetition and advice. If you feel comfortable doing so, ask your silliest and most far-fetched questions as well as the ones you know are practical. I remember how relieved I felt at our neurologist's beaming smile when she answered my question about whether or not we should plan to retire to the beach when our son's breathing becomes more difficult (We live at high altitude in a dry climate. Her answer was along the lines of "only if that is your family's dream.").

I have found it very helpful to work closely with my husband on our clinic visits. We spend a while trying to formulate our questions for clinic, sometimes organizing them by specialty (is this a PT issue or a breathing issue or a general issue?). Our other child stays with a babysitter on clinic day so that she does not have to be involved and we don't need to worry about her during clinic. My husband does the driving to the hospital while I try to mentally prepare or jot down more notes. I do most of the interaction with the doctors at the hospital while he observes. On the drive home, we recap what happened. I'll often call my mom on my cell phone and recap for her as well. Then I'll ask them what happened again later, when I've had a few days to recover. I request a copy of the doctors' report to be sent to me and forwarded to our local pediatrician as well. Some people find it very helpful to have an adult family member or friend take notes during clinic, then present the notes back to them once they're home again.

We also recommend making yourself as comfortable as you can during clinic. It is ok to take breaks! We find that wearing comfy (but presentable) clothes, bringing water, coffee and snacks for us and our son, bringing some special toys for our son to play with while we're busy talking, all help. We always try to give ourselves some extra time to assimilate the experience by taking the rest of the day off. A bit of a treat when we're done is always welcome (I like ice cream. My son prefers a trip to the toy store.).

Going to clinic is a pretty big deal, preparation is useful, but it is also totally ok to just show up. You will have time to get your questions answered, whether you voice them at clinic or send an email later. Take care of yourself. 

Best to you, always,

Ivy 

Hi Mrs. Wood! 

Ivy listed some really great advice! Here are some other tips the community shared with us:

 

Stacy: You really need to do a lot of research...that's what we did. I would also see if they have a physical therapist u can talk to so that they can show you stretches that will help your child with flexability. I would just say read everything about DMD you can...my husband and I know as much as most of the Doctors and sadly more than some.I even had a Doctor that wanted to do a test to our son that was outdated and no longer used to diagnose DMD. Talking to other families is another great resource. I hope I helped you


Marian: stay positive mom and dad....it will go a long way for the little guy! just remember that your son has a long and beautiful journey ahead of him. my two sons were diagnosed in 2009 and staying positive (most of the time) has helped us a great deal. I watched them, my oldest in his electric wheelchair pulling the younger one in the wagon with the seatbelt buckle...and laughed and thought, wow, I've come a long way in this diagnosis, and life will be okay. my kids are happy. I want to be happy too. Good luck!! xo


Nadia: Staying positive is absolutely the way to go..although...it is hard hearing all the information..make sure you get the appropriate info...for the right time frame for ya boy...no point reading stuff or having people tell you what it will be like in 10 yrs... :) One day at a time....


Donna: Visit PPMD community, you will get alot of info from other families with DMD. dont give in, dont give up, stay positive, and most importantly love on your child every day, it helps so much!

I love these ideas. I am going to print them off. 

 

Thank you for taking time to share!

Hello Mrs. Wood,


Parents have already offered some great tips.  I'd like to add a few and reemphasize some points based on my family's experiences.

As your son's primary care provider (By default we all undertake this role whether our child has DMD or not.) you should at the very least consider a peer to the clinic doctors.  They see your son a few hours a year and you are responsible the balance of the time.  With their support and guidance a mutual relationship can be built between you and your son's doctors.  In this relationship it is equally important for you to provide information about your son's ability and challenges as well as ask questions about these very issue. Write down questions you have as they come and bring the list to clinic.

When a course of treatment is recommended, make certain you understand the reasons why it is suggested and what compliance and non-compliance may mean.  Every medication prescribed has some range of side effects.  When medicines are prescribed, ask about side effects and how these can me minimized and how to gauge benefits over risks/side effects.  Ask about interactions with other medications and with supplements should you be providing any to your son. 

An aggressive clinic should be looking at treatments that keep your son healthy and preserve function.  Find out whether there are things that can be done at home and what time investments required of you and your family to provide these activities such as daily stretching.  Ask what treatments/therapies have been shown to provide the most benefit over the course of time. 

Involve your son as much as possible in his daily care.  This is typical with other disorders such as diabetes where children begin testing their glucose as young as 4 or 5.  It is less common in DMD, yet if a boy understands more about the reasons for his treatments it could lead to better compliance.  This becomes more important when a boy with DMD gets older and moves from pediatric to adult care.

Build a network of trusted families who have a son or sons with DMD older than your son who can offer advice from their experience, provide support and show that you are fully able to get through this too.  Often a few thoughts can help you see things from the boy's perspective which will make things more meaningful.  They also have been to a number of clinic appointments, so they may have some insight to help.

The best advice I keep reading is to stay positive.  Stick with positive people, take care of yourself so you are able to be a better parent to your son and do the things it takes to be positive.

 

Wishing you the best.

 

Brian Denger

 

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