Hi, welcome back to PARC Parent Pointers Video Blog. If you haven’t already go check out my previous videos that discuss frequently asked questions about pre/post hypospadias surgery instructions, FAQ about our practice, and lots more. Today we wanted to take a moment to highlight a parent’s journey through HBOT. We have an awesome patient parent with a big heart for hypospadias. She took the time to create a parent’s guide to HBOT! Please read below, and enjoy! If you have any questions or a topic you would like for us to discuss, please email me at firstname.lastname@example.org.
A Parent’s (and Child’s) Survival Guide for HBOT
If you are reading this, you are probably thinking that having a child go through hyperbaric oxygen therapy (HBOT) is an impossible feat. It might not be easy, but for many families, it was well worth it. If you are feeling overwhelmed and not quite sure where to begin, here are some FAQ’s and helpful tips to get you started.
How do I find an HBOT facility?
Google search for HBOT (hyperbaric oxygen therapy) in your area. It is very important to ask if the facility treats children. Not all facilities treat pediatric patients. If this doesn’t work, search for wound care clinics and/or ask the wound care clinic at your local children’s hospital where they refer their pediatric patients for HBOT. Just make sure that the location you find treats children and works with your insurance unless you are planning to pay out of pocket.
Is HBOT covered by insurance?
Usually, but individual coverage may vary. Work with your HBOT facility and PARC Urology for the best chance of having HBOT covered by insurance benefits.
Is the HBOT facility a mono-chamber or a multi-chamber?
This is an important question to ask the facility because it makes a difference in figuring out the logistics in what to do during the “dive” or time spent in the chamber. In a mono-chamber, your child will be in a sealed, clear chamber by himself. Depending on the age of your child, a parent or caregiver may be able to or possibly required to “dive” with your child. Check with your facility regarding their policy on this. He most likely can’t bring anything in the chamber with him (including coloring books, electronics, games, etc). Check with your facility on their specific policy since in some cases, water has been allowed in a mono-chamber. In the multi-chamber, there are multiple patients that go in the chamber at the same time. These are usually more flexible in allowing parents to go in with their child. However, each patient wears an oxygen hood (that looks like an astronaut helmet) during the course of the dive. Children are often allowed to bring books, coloring books, etc. in with them. Make sure you ask the facility for their policy regarding what is allowed in the chamber with your child.
What does my child wear for HBOT?
Some facilities provide clothing, others do not. They are required to wear 100% cotton (non-flammable) clothing or pajamas. No hair products including hair gel or hair spray, makeup, lotion, deodorant or jewelry are allowed in the chamber. If you are “diving” with your child, this applies to you as well.
If my child wears glasses, can he wear them during the dive?
Check with your facility on their policy regarding eyeglasses. So far in our experience, patients (and parents) have been allowed to wear eyeglasses in the chamber. However, the policy may differ between facilities.
What can my child do during the dive?
Depending on the setup, there are options. In the mono-chamber, most have a TV mounted outside of the chamber. If they have a DVD player, your child can watch a movie. If you will be in a multi-chamber, most places allow small toys inside (with the exception of electronics).
Can my child eat or drink in the chamber?
It is important to eat a full meal about 1-2 hours prior to the dive. You don’t want your child’s tummy to be too full, but it’s important that he is not starving prior to the dive. It is a good idea to bring plenty of water and snacks for when your child finishes the dive. In most cases, children come out starving! Some facilities might allow water inside the chamber while others do not. The policy may vary between facilities so make sure to ask your facility.
How long does it last?
Each dive takes approximately 15 minutes to bring the chamber to pressure. The actual dive lasts 90 minutes and then it takes an additional 15 minutes to depressurize the chamber. In total, your child will be in the chamber for a minimum of 2 hours. Some facilities require “air breaks” in the middle of the dive where the child wears a mask and breathes in room air for a few minutes. Check with your facility since this is not always required nor practiced. Other factors that you must consider include the drive time to/from the facility. Some families drive 1 hour each way while others may have a shorter drive time. Once you arrive at the HBOT facility, you will need to allow time for your child to change into his 100% cotton “dive” attire. Prior to starting the dive, a nurse will take your child’s temperature to make sure he is not running a fever. Some facilities will also check your child’s blood pressure and heart rate prior to starting the dive.
How many times will my child need to do HBOT?
The number of dives may vary from case to case and may also depend on what is approved by insurance. Talk to your doctors and the facility about what is right for your child. On average, you can plan on approximately 20-30 dives.
Can I go in with my child?
The policy on this may differ between facilities. The size of the mono-chamber is about the size of a twin bed or a hospital stretcher. Some facilities will allow a parent to “dive” with the child while others do not. In the multi-chamber facility, parents are usually allowed in the chamber with your child but would not wear the oxygen hood.
Can I talk to my child?
Of course! If your child is in the mon-chamber, you can talk to your child through a phone. Most facilities will also allow you to sit just outside the chamber so that you are in view of your child during the entire dive.
Can my child get out to go potty?
No. It is best to have your child wear a pull-up even if your child is fully potty trained. It takes 15 minutes to bring the chamber to pressure and 15 minutes to de-pressurize the chamber before your child can get out. Therefore, if your child has to go to the bathroom, he can’t just get out and go.
What if my child cries in the HBOT chamber?
Hopefully, this won’t be the case. But, it could still be a little scary for him (and for you). Ask the facility what they do in this situation. If your child cries the entire time for the first few dives, it is up to you whether to continue or wait until your child is older and can fully understand.
Are there any side effects from HBOT?
This is a great question to ask the experts when you go for your consultation. However, parents have reported that their children either feel really tired or really awake following HBOT dives.
Is HBOT it worth it?
After multiple failed surgeries, HBOT is what many boys needed to put their hypospadias saga to rest once and for all. Most parents will want to look back and feel comfortable knowing that their son had the best doctors, medical care and that every attempt was made to heal him using the best way possible. In many cases HBOT is the last attempt to healing properly. There have been many patients of PARC Urology that have had successful outcomes with HBOT. It is not guaranteed to work but it has helped many patients with previous unsuccessful repairs.
Are there any Mom’s (and Dad’s) I can talk to who have been through this with their son?
Of course! Ask PARC Urology to get you in touch with some families that have been through what you are going through. It helps to have someone to talk to who has walked in your shoes.
Do we have to go every day?
HBOT works best when the protocol is followed exactly as it is prescribed. The levels of oxygen increase in a step-wise fashion. Therefore, it is important to not miss a dive unless it is absolutely necessary.
What are some possible reasons that would cause my child to miss a dive?
Some reasons can include a fever, high heart rate or the day of surgery. Your child will not be able to dive if he is experiencing a fever the day of the dive. On the day of surgery, it is not necessary to dive. Although, if recommended, it is important to start therapy soon after. HBOT is a huge commitment and takes a lot of logistical planning. It is even harder to coordinate when both parents work. Ask for help from friends and family and talk to your employer about your options.
What steps are involved in the process to get started?
The first step is to find a facility that treats children. Next, they will probably schedule a consultation. It is a good idea to have medical records sent from PARC Urology prior to the consultation. Next, you will need to coordinate with the HBOT facility and PARC Urology to schedule dives around your son’s surgery date. The HBOT facility should be able to handle the insurance claim but this is something that should be discussed once the dates are finalized.
Once a start date for HBOT is set, you will need to see an ENT for ear tubes. They will usually consult with you first and then schedule the procedure for ear tubes soon after. Next step, blast off to your first HBOT dive!
Helpful tips for making HBOT fun (or at least not scary):
Most facilities require this since it is very difficult for children to clear their ears. In the event that your child does not have ear tubes prior to starting, HBOT can be very painful and scary for your child. Since the goal is to make HBOT as easy as possible for everyone, it is highly recommended (and sometimes required) for your child to have ear tubes prior to his first dive. Your child will need to be sedated to have tubes put in, but the procedure takes about 15 minutes and there is virtually no recovery period.
Blast off to outer space:
The HBOT chambers look like a space shuttle. You can pretend your son is going to be an astronaut and will be taking a trip to outer space while “diving.” Read books about outer space, buy outer space “dive” attire, pack up snacks and things to do in an astronaut bag, have a blast-off party the night before (with a cake of course), and you can even buy astronaut ice cream and other astronaut food on Amazon for a snack after the dive. Visit thespaceshop.com, shopnasa.com or Amazon for some ideas.
Let your son mark off the days of a calendar and count down the number of dives left. You can even plan a party to celebrate the last dive.
Get your facility involved:
Making it “fun” for your child is a group effort. Hopefully, your facility will do this without being prompted but get them on board with your theme and ask for help in making this a positive, exciting and FUN experience for your child.
Time it right:
We planned our dives around nap time. It was a big deal for my son to get to stay up and watch movies when he normally would nap. If possible, try to plan the dives when your son is happiest. Some facilities are more flexible with schedules than others.
It is best, to be honest with your son about why he is having HBOT. Although it is fun to pretend that he is going to be an astronaut and blast off into outer space, nobody wants to feel that they are being lied to or tricked. The outer space theme may relieve some of the anxiety about HBOT and since kids love to pretend, this plays into their imagination. However, be honest that this is also to help heal his pee-pee (hypospadias, second hole, penis, etc.).
Keep your nerves in check:
Children will feed off of your nerves and sense your anxiety. Of course inside, you will probably be freaking out as a parent, at least for the very first dive. Do not let your child see this. Try to stay positive and don’t give them any reason to worry. They might end up handling the day better than you could imagine!
Make a list and check it twice:
Each parent has to decide if HBOT is right for their child and family. Weigh the pro’s and con’s of going through HBOT and that should give you a clear idea on if it is right for your child. It is a big undertaking and time commitment but the benefits can be life-changing.
You are not alone! Reach out to other parents who have been there, done that. It always seems impossible until it’s done! Good luck!