Addressing Issues

I haven’t written for this blog in a long time. So many things have been happening in my personal life that has made it difficult to write every day. However, today there are many things I would like to address.

1. Though many things are related to Spina Bifida, not EVERYTHING is! Kids fall, scrape their hands, legs, knees, feet, etc. but that does not mean that you need to wrap your child up in bubble wrap before they go out to play. Whether your child has a disability or is able bodied, it will happen. As a parent myself, I want to protect my child as much as possible, however I know things will happen. No matter what you do, nothing can prevent accidents. You just have to pick your child up and have them try it again. They will learn how to adapt, improvise and overcome any obstacle that they may face. Sometimes, parents can be the ones to hold their children back, even though it may be because of good heart-felt intentions. Do not concentrate on their disability concentrate on their ABILITIES!!! If your child is active and mobile, you should encourage that by strengthening their muscles, including legs, core and arms. This will benefit your child throughout their lifetime.
2. Not everyone with SB has a learning disability, even AB people have them. Please do not tie everything up in a little bow and blame it all on SB. If you do not encourage your child to push past their disability and overcome obstacles, how are you preparing them for the real world and what obstacles they will face as adults? Learning disabilities can be overcome by teaching alternate ways of thinking and looking outside the box.
3. Independence is the key to successful people, whether they have a disability or not. Holding a child, teen or an adult back from being independent, whether partially or fully, is not helping your child succeed. It is inhibiting them and giving them a crutch to lean on for the rest of their lives so they can continue to say “I can’t” without even attempting to try. Even an “I tried” is better than an “I can’t”!
4. Public forums, social media, and other venues are a great way to communicate with others that have disabilities. However, it can be a detriment too. While they are great to see that other people are going through similar issues, remember the information that people give you in your situation is not gospel. Unless they are a professional in the field of medicine, education, psychology, etc., understand that it is their opinion. We all know what they say about opinions!!! Also, a lot of the information is incorrect or not up to date. Especially when it comes to SB. Even medical professionals have a hard time with the relaying correct information to their patients. So second and third opinions from medical professionals are very important. I personally cannot tell you how many doctors I have fired due to this exact issue.
5. Last, but definitely the most important, no matter what you are going through, there is a light at the end somewhere. We may not see the bigger picture at the time, however there is one. Learn from your struggles and disappointments. If we are not learning, we are not growing mentally, physically, psychologically, and spiritually. All of this impacts how you handle situations and relationships!!! Push through the hard times, because there will be easy times ahead!!!!

Understand I am saying all of this, not to criticize anyone, however to encourage you to be the best you can be! This is nothing I have never encountered myself, so it does come from a place I have been before and sometimes go back to, however I have learned to push through the hard times and fight. I will not back down, I will not tell you it is easy, I will not lie to you or sugar-coat anything. I am honest and raw.

Shuffle on my friends!!!!!

Spina Bifida SURVEY!!!!

Please fill out this survey for me!!!!

I am looking to collect data on SB in the U.S. There is not much data on adults with SB and I am hoping this will help show the medical community that we exist and we deserve attention and medical care throughout our lifetime!!!!

https://www.surveymonkey.com/s/S6RHX3P

Advice for Parents: Part 2 – Advice on navagating & managing medical information

As your children gets older, sometimes it is hard to find a doctor that is qualified, knowledgeable, and highly skilled in the area of Spina Bifida. This also happens throughout their life from infancy/toddler stage through adulthood. Sometimes, you may need to travel to a SB clinic, a children’s hospital that specializes in SB, or other specialist that deal with specific conditions related to SB – such as neurology, neurosurgery, urology, orthopedic, nephrology, gastroenterology, physical therapy (occupational, orthopedic, neurological, and, rehabilitation, pediatric), neuropsychology, psychology, ophthalmology, optometry, possible pain management, speech pathology and a pediatrician – just to name a few. Your child deserves the best care possible for their SB and you may need a team of doctors who are willing to share information and develop a care plan tailored to your child and their needs according to their level of SB. I have some advice on how to navigate through the medical community while being organized and prepared for whatever situation you may encounter.

1. Maintain your child’s medical history. Get copies of every major appointment, diagnosis, testing (including radiology reports, blood work, and any work up done by a specialist), surgical history, medications, allergies, and all diagnosis. Maintain an organized binder by classification with all these copies of medical records. Take this to every appointment, making sure you have extra notebook paper or spiral notebook in the binder, so you can take notes at all appointments. (Also see my post “Traveling with Medical Conditions” and “Simple Medical Worksheet” because they both address how my simple work sheet is written.)

2. For MRI’s, CT scans, and any diagnostic imaging, make sure you not only have a CD with the images on it (easy to take to appointments) and the radiology report (file in your binder) but also retain the films, especially when it comes to MRI’s. Have a place in your home to store them, ex: on the top shelf of a bedroom/linen closet. This way if neurology or neurosurgery wants to compare the images to the prior ones, they can do so. Most neurosurgeons are okay with just having the CD copy, however some of the old school doctors love seeing the actual films themselves. The reason being is they might spot something that the radiologist missed in their report. Also this is a great way to show you, as a parent, and your child (when they are old enough to understand) the difference in the imaging from the prior one.

3. Before each appointment, in the binder, write down any questions, concerns, comments, changes or medical testing and surgeries, which have happened since your last appointment with that particular doctor. This is the best way to prepare for the appointment and to remember everything that you needed to say or needed more clarification on a certain test, diagnosis, or even a recommendation they had made that you might not have understood completely. I prefer to have a section for each doctor and/or field of study.

4. While at each appointment, take notes so that you remember what the doctor had said and recommended at that appointment. Sometimes we get so overwhelmed with all the information during an appointment, that we are lucky to remember half of what they said/recommended. Speak up if you have a question or concern and ask them to clarify it for you. Sometimes the medical community loves to use all the medical jargon and don’t realize that most people might not understand what they are saying completely.

5. It is always good to get a second opinion, especially when it comes to surgical interventions. There is no repercussions on you or your child by getting a second opinion or even a third. Your intentions are to find the right doctor or procedure that you feel would be best for your child and their quality of life.

6. You also have the right to fire a doctor that you feel is not the best option for you, your child and their treatment. If you feel that they don’t have enough experience, they don’t communicate well with you or your child, or you question their recommendations, you can fire them. You and your child need a doctor who is willing to work with you, your child, and other doctors on your team, to find the best treatment available.

7. You do have the right to file a complaint against the doctor if you feel one is needed, especially if they have been unprofessional or unethical. You can file the complaint with the clinic or hospital they are affiliated with or you may speak to another doctor (that you are comfortable with) and they can explain the channels of filing the complaint. If you feel that the appropriate action was not taken in remedying the situation, you can also get in touch with the state medical society or licensing board. I have been in this situation. When I went through the clinic’s procedure of filing a complaint, the minute I said that I would go to the state board, they were immediately willing to help me. I do not know the outcome of the complaint I filed, however I did let them know that if I find out that another person complains about this particular doctor, I would then take it to the state board. You should not have to deal with unprofessional and unethical doctors.

8. Go with your gut feeling. This is like your warning light going off. If you feel something is just not right with a treatment, a doctor, or with your child; go with it and find the best way to handle the situation. Again, you have the right to fire a doctor so you can obtain the best care for your child. This also applies to emergency doctor appointments or trips to the ER. If you feel that your child is having abnormal symptoms or behavior, call the doctor or go to the ER. Parents know their children the best, so it is always safer to seek medical attention when you feel something just isn’t right!!! It is always better to be proactive than to let the symptoms escalate. This way you can get a solution/intervention as soon as possible!

9. Remember, you are your child’s best advocate. Fight hard for the best treatments out there for your child throughout their life. Stay on top of doctor’s appointments, medical testing, diagnosis, and treatments. If your child is in the hospital as an inpatient, you can always call and request a patient advocate to help you. Use any and all resources you can for the best interest of your child. Also, there might be help available in your state for a medical advocate.

I hope this helps!!! Shuffle on my friends!!!!

Simple Medical Worksheet Outline

SIMPLE MEDICAL WORKSHEET OUTLINE

(with examples)

****All that is bolded and underlined below, should be on your worksheet (bolded & underlined), so they are able to view and distinguish between the different fields. I would also single space it so you can fit more onto one page****

MEDICAL HISTORY

Name of Patient

Date of Birth

Insurance information

Parent’s Name

Parent’s Contact Information

ALLERGIES (this needs to be in red bolded font and highlighted)

DIAGNOSIS (list these individually, on separate lines)

Spina Bifida

Hydrocephalus

Neurogenic Bladder (must catheterize)

MEDICATIONS (list the name, dosage amount, and dosage schedule – you also can google how to abbreviate dosage schedule EX: prn, bid, tid)

Ditropan 10mg/pm (meaning you take 10mg at night)

SURGERIES (list year, exact surgical procedure, hospital name, hospital location)

2011       Release of Tethered Cord            Vanderbilt Hospital, Nashville, TN

DOCTORS (the one’s you see on a regular schedule, what specialty, list their name, address, and telephone, you can do this in two columns and use abbreviation for their specialty)

Dr. Joe Smith – General Practitioner/Primary Care Physician (GP/PCP)

1234 Medical Park

City, State, Zip

(555) 555-5555

Dr. John Doe – Neurologist

4567 Medical Plaza Dr

City, State, Zip

(555) 555-5555

*********** You should make this as a Word document and save it, so you can update information. It is a good idea to make multiple copies. Keep one in your purse, in your car, in your child’s backpack, file one with the school, at home where you store emergency numbers and information, leave a copy out for the babysitter in case of an emergency, file a copy in the medical binder, take them to all doctor’s appointments (either give them the sheet or have them make a copy), and bring them to the ER or Urgent Care facilities if your child needs to see a doctor quickly. This helps you know all the information many doctor’s offices and ER’s need to know to help determine the best care for your child. Keeping it up to date will also help you keep track of everything.*************************

Hope this helps you my friends! Keep shuffling on!!!

Advice for Parents: Part 1- Newly Diagnosisd Child w/ SB

Being a new parent is hard enough, let alone learning that your perfect baby has Spina Bifida. (*Note, I believe every baby is perfect in their own way!) Whether you find out during your pregnancy or when you deliver, the information the medical community provides you with is very over-whelming. Most people have never really heard of SB, let alone thinking it could possibly happen to their child. Then they start giving you a bunch of statistics and advice on what to do and how to treat the child. This could entail, but is not limited to, multiple surgeries – sometimes even before you get to take your beautiful baby home. They may also place your baby in the NICU for either a predetermined amount of time or until they think the little one is safe to go home. So many things happen after the delivery that starts to put some parents into panic or survival mode. Being inundated with so much information and surgical intervention can cause a lot of stress, anxiety, and even depression for new parents.

I believe that the medical community does not inform parents correctly and overwhelms them too much that they are at a loss of what to do next. All you want is to hold your baby in your arms and be able to bring them home so you can start adjusting to having your baby. I also believe that some of the information the medical community provides you is incorrect or misleading, which then could lead to being pressured into doing something that might not be necessary. This may come directly after delivery or later down the road as your child grows.

What can we, as adults with SB, do to help new parents with the diagnosis and educate them about SB and what might happen in the future, depending on the level and degree of SB the child possesses?? I have compiled some advice I would give to new parents with a child diagnosed with SB. (This is my first part of the series!)

1. First and most important is to stay calm.  As hard as it sounds, staying calm will help you retain information and not cloud your judgment on what may be best for your child throughout the years.

2. Understand that doctors do not know everything about SB. They have an idea, especially when it comes to pediatric cases, but not a full understanding about the future and what it may hold for your child.

3. This diagnosis is not your fault as a parent. Most likely you did not know you were pregnant until well after the first 28-30 days of your pregnancy and in that time frame is when SB develops.

4. Folic acid. (This part irritates me!) While there may be great studies out there that state SB is caused by lack of folic acid during your pregnancy, that is not the reason in most cases of SB. They have barely scratched the surface in explaining why SB happens and treatments needed throughout the patients lifetime!

5. Research SB. Not only through medical journals, because they use so much medical jargon you might not understand, but through other means. Getting together with the SBA and find a chapter close to you so you can interact with other parents and individuals with SB. Also, social media is a great tool but can also lead to disappointment due to people who refuse to be positive and encouraging to others whom have SB and their families.

6. Remember, SB is also referred to as the “Snowflake” birth defect. Just as two snowflakes are not the same, there are also never two SB cases the same either. Even though the lesion might be at the same level, other factors are involved and the treatments will be different because of those other factors.

7. Do not accept everything the doctors say about the abilities or non-abilities your child may or may not posses in the future. Always remain optimistic!!! This will get you further in life, but also while going through your child’s treatments. Being optimistic during the roughest times, will also help your child’s state of mind as they grow up and start to fully understand SB. They will absorb your optimism and apply that throughout their lifetime.

8. When you get overwhelmed, frustrated, angry, stressed, etc. have an outlet to get rid of those feelings, but not in front of your child. Go to the gym, take a walk, use a punching bag that is set up somewhere out of the way, or even speak with a therapist. Find some way to relieve what ever you may be feeling in a productive way!

Stay tuned for more advice!!! Shuffle on my friends!!!

What I call “the movement”

As I have become more active in listening (or in this case, reading) through the SB pages and Facebook pages, I have noticed a different change in attitude through the generations of people with SB and how they are raised. Everyone has their own way of raising their children because that is their right as a parent. However, you have to take into consideration how it will affect your child and their quality of life!

I have noticed as the younger generations start getting older, the influence their parent’s have on them becomes even more prevalent to their attitudes and how it affects them medically, socially, emotionally, etc. I also have noticed a big change from I can do this, even though it might be different a different way from able-bodied people, to the phrase “I can’t do (insert here) because I have SB.”

Older generations did not have access to the internet or if they did it was very limited. They did not have the opportunity to discuss with other people with SB as openly and as easy as we do today. So their parent’s raised them to have the mindset that “I can’t” is not in their vocabulary. “You can” is the phrase that they were raised with and still use to this day! Whether they actually can or adapt to the situation according to their abilities, they will rise above SB! They have succeeded physically (with accordance to their abilities or non-abilities), professionally, socially, and so much more. They have been raised to believe that even though a particular doctor has set limitations on them, they will overcome and prove the medical community wrong.

Now there is “the movement” in the SB community that refuses to improvise, adapt, and overcome their limitations. They use their specific diagnosis as a huge crutch, to put limitations on what they are very capable of achieving. It is too the point that it has affected many areas in their life, including their independence. It also seem to effect them further more into becoming socially inept. This saddens me to my core!!!!

My parent’s raised me to be independent, to eliminate the words “I can’t” and to succeed no matter what obstacles may stand in my way. Now there are some things that I might not be able to do anymore that I have done in the past, however I have  managed to improvise, adapt and overcome those particular obstacles.

No matter how your parent’s may or may not have raised you or what doctors have said what you can or cannot do; it is up to you as an individual to either use that crutch or rise above it! Learn that there are children with SB that need a positive role model. If you are always negative and full of I cant’s instead of I can, what are you reflecting onto them? Are you affecting them in a positive or negative way? Are you affecting the way new parent’s think when they find out their newborn has SB? Think about it, seriously, think about it!!!

Look for future blog posts for parent’s with children whom have SB!!!!

Shuffle on my friends!!!