10 Things to Know About Tonsil Surgery for a Child With Autism
Three years ago, my son was evaluated for speech issues. After going to the Children's Hospital in Boston for initial consultation, we received a second evaluation and diagnosis that my son has phonological disorder.
When inquiring if there was an underlining cause for the speech issues, both specialists told us that there was no other disorder or problem. My son was also evaluated by a hearing specialist. His hearing was fine. Finally, a dentist. The dentist said the placement of his jaw and teeth were not the cause of the speech disorder.
Two years later, my son was diagnosed with Autism. In the meantime, we were seeing so many specialists, and having tests run so often that the simplest of procedures were overlooked by many.
At the first parent teacher conference of this year at public school, my son's new speech therapist recommended that we see an Ear, Nose, Throat specialist (ENT), because my son was having trouble pronouncing certain letters. She believed it was due to a physical problem, not from the phonological disorder.
A week later I had the appointment at the ENT office. The doctor was also my Thyroid surgeon, so I knew my son would be in good hands.
Sure enough, after a quick test, surgery was scheduled. My son recovered in less than two weeks.
Here are 10 things all parents need to know about tonsil surgery for their child with Autism.
1. How to find a tonsil surgeon.
The first step in consulting with a tonsil surgeon is getting approval from the child's primary care pediatrician.
My son's pediatrician has worked with him for years. Therefore, it was easy getting a referral.
I did not need to make an appointment, although some pediatrician's may require you to obtain an appointment with the pediatrician first.
The pediatrician's office recommended an ENT specialist.
Next, I called the ENT specialist directly. The office said a referral was required by my insurance company. It was very simple to get. I called the pediatrician's office a second time and they faxed a referral directly to the ENT specialist.
Upon receipt of the fax from the pediatrician, the ENT specialist contacted me to schedule a pre-operative appointment with the surgical doctor.
2. What to expect before the pre-operative appointment.
Here are some things you may be asked to do for your child's pre-operative appointment:
- The office may have new patient forms posted on their website. If they do, you have the option of printing them before the appointment and filling them in. I highly recommend that you do this. It is very challenging to fill out doctor forms in an office setting with a child with Autism.
- If the office does not have forms available on their website, ask if you can pick them up ahead of time from their office to fill them in. Explain that you have a child with special needs which makes it difficult to prepare paperwork and assist your child in a new environment at the same time. (Some offices will even mail them ahead of time.)
- Bring a photo ID of yourself, and your child's insurance cards to each appointment. Some offices must scan the insurance cards at each visit.
The day of your appointment, make sure you get yourself ready in plenty of time. This way you can effectively assist your child in getting ready for the appointment.
To ease your child's mind, the day before the appointment, you can tell your child you will be taking him or her to a new doctor's office. Then, the morning of the appointment, count down to the time you leave by time intervals.
- The doctor's appointment is today at 10:00 a.m. It's now 8:00 a.m. We have to leave in one hour and 30 minutes.
- The doctor's appointment is in one hour. We have to leave in 30 minutes.
- We have to leave in 15 minutes.
- We have to leave in 10 minutes. Please use the bathroom, and start putting your coat on.
- We have to leave in 5 minutes. Please have your shoes on and let's pick out a toy to bring with us. (Coloring books and crayons, hand-held electronic games, homework, and goody bags filled with little surprises are all great resources to have on hand at appointments.)
- We have to go now. Are you ready?
Also, be mindful that any new experience for your child is stressful and may cause anxiety. Keep a calm voice and don't sound rushed (even though you may be rushing).
This will ease your child's mind if they see you responding to the situation in a calm and relaxed manner.
Also, bring a bottle of water for your child. Their increased anxiety may cause sudden thirst and you don't want to be left without a back-up plan when your child starts repeating they are thirsty.
Suggestions for goody bags.
I used to keep a clear zippered pouch in my purse for every doctor appointment with my son. I would buy party supplies or little trinkets to put in it. Every time we'd have an appointment, I would exchange little goodies from a basket of them I kept for special occasions. This way the stuff in the goody bag would always be new and exciting to my son.
- Mini notebooks with stickers/crayons
- Mini party supplies
- Plastic eggs filled with prizes
- Fun plastic glasses
- Mini plastic slinkies
- Mini puzzles
- Mini rubber dart boards
3. What happens at the pre-operative appointment.
Try to be as prompt as possible to the appointment. These offices are specialized and are usually very busy.
Check-in at the front desk and hand them your paperwork. They will also ask for your photo ID and your child's insurance card(s).
While waiting for the appointment, your child may become restless, hyper, or anxious.
Have a variety of activities on hand to do with your child as recommended above, such as coloring books and crayons. Offer to color a picture with your child for someone else. Children love to give their art work away. This will help relax their mind and focus on an activity.
Or, if your child has a hand-held game, ask your child to show you if they can beat the next high score or win a certain prize they've been trying to obtain when they play the game.
These are just some suggested ways of re-directing your child's focus off of their anxiety, and on to a fun activity which will alleviate the pressure they are feeling from the new environment.
When your child sees the doctor, the doctor will peek at your child's tonsils.
If the doctor suspects your child's adenoids need to be removed as well, expect the doctor to insert a thing tube with a camera at one end down your child's nose. While not pleasant, this quick test lasts a few minutes and does not hurt. Your child may cough during the procedure.
Children with Autism frequently have sensory issues. Therefore, the procedure may scare or frighten them. Stay calm and speak calmly to reassure your child. This will help your child get a thorough evaluation by the ENT doctor.
4. Scheduling surgery.
Our ENT office had a scheduling clerk on staff.
Some offices may have different procedures for scheduling surgery. After my child saw the ENT doctor, we were led down a hallway to a nice comfortable office where we met the scheduling clerk.
My son was given a coloring book about tonsil surgery, a small box of crayons, and I was given a brochure on the surgical procedure.
The scheduling clerk was fabulous. She was a new face, yet very friendly to my child.
She looked over a calendar on her computer and told us a date. She gave us print-outs confirming the date and instructions for surgery.
5. Authorization and Confirmation.
Tonsil surgery is now out-patient.
About a week before the scheduled surgery date, the hospital staff called to verify a few pieces of information such as insurance, address, phone, and height/weight of the patient.
Expect a second phone call to confirm the insurance company payment and whether or not you will be expected to pay a co-pay.
The day before surgery, we were instructed to call a phone number. We were given the surgery time and told to be at the hospital at a certain time the day of surgery.
6. Procuring time off of school for your child.
How to arrange your child's time off from public school for surgery.
- When you find out that your child needs surgery, write the teacher a note informing her that your child will be absent. This will give the teacher advance notice because she has to schedule the class structure and classroom helpers that assist your child.
- Two days before surgery, or when the surgery is confirmed, write a note to your child's teacher confirming that surgery is going forward and your child will need homework during his or her absence from school.
- The day before your child takes leave for surgery, write a formal note to school with the following information: Name of teacher, Name of Student, Grade, Date, Regarding Extended Absence, and information pertaining to the surgery.
Sample note to school:
Re: STUDENT/GRADE/Extended Absence from School
Please be advised, my son/daughter, will be absent from school from ________ to ___________ for tonsil surgery. I will procure a doctor's note for the school file. If possible, please prepare a homework packet that I may pick up when I drop off the doctor's note at _____ on ____________. Thank you very much.
Communication with the teacher and school is key to maintaining a good transition from pre to post surgery.
(Please note that you may not be able to get a doctor's note the day of surgery at the hospital. The school must have a doctor's note per law for an extended absence. If you cannot get one the day of surgery, call the ENT office immediately and let them know you need a doctor's note for your child's school. You may have to pick one up at the office instead of at the hospital on the day of surgery.)
7. The day of surgery.
If you have more than one child, be prepared to have help.
If you are a single parent, you may need to find a friend that can take time off from work to help you.
If you are a married couple, prepare for both of you to take time off from work for that day.
You will be responsible for getting all of your children to school and bringing the patient to the hospital. This can become challenging for parents who have no help.
(Here, the hospital told us to call after 1 p.m. the day before surgery. We had no time to find anyone to help with our daughter who still had to get to and from school that day.)
Plan ahead and make arrangements with someone who is dependable and reliable.
Your other children will either need childcare or someone to supervise them while they get on the bus in the morning and afternoon.
Ease your stress and worry by taking time off in advance to make sure all of your children are cared for the day of surgery.
We were told to be at the hospital at 8:30 a.m. My daughter had to be at school at the same time. Luckily, I had help.
Once at the hospital, you'll have to check-in.
The hospital staff will give your child a hospital outfit to wear during surgery. We also brought him a teddy bear to comfort him.
My son did have two IVs in both arms. I'm not sure why, but at least they did it once he was fully asleep. That saved us from a lot of heartache as he doesn't tolerate needles well at all.
Talk to your child beforehand to calm his or her nerves. I also explained to my son, because I've been through similar surgeries myself, that when he wakes up from surgery to expect a very sore throat. I coached my son to tell the nurse immediately upon waking for something to ease the pain. I didn't want him to lay there and not ask for anything. I was worried that he would be in a lot of pain and afraid. Fortunately, the hospital had its very own ice machine and brought my son plenty of liquids and ice chips to soothe his hurting throat.
It's very painful right after surgery.
The surgeon elected not to prescribe narcotics to my son. He felt that we would be better off with Tylenol. After about one to two hours in recovery, the child goes home.
8. Essentials to have on hand after surgery.
Soup broth from Campbells chicken soup
Flattened ginger ale (to settle stomachs)
Small ice chips
Avoid all citrus and tomato based drinks/soups.
9. What to expect during recovery.
The doctor recommended a quiet and calm environment for the next 7-10 days. My son was taken out of school for 10 days as well as gym class for 15 days.
While not common, dangerous bleeding can occur after surgery.
Keeping the throat moist is key to a successful recovery.
With the essential list above, try to have those items on hand before your child arrives home from surgery. You don't want to take your child out to the store following surgery. That would be very unwise as your child will still be overcoming anesthesia.
Keep a bed side table or tray near your child. Your child will probably want to go to bed following surgery.
TV, video games, coloring, and homework are great activities during your child's recovery.
Keep your child's bed clean and made so they can feel free to rest at any time during their recovery.
Incorporate solid foods slowly. Try creamy bland mashed potatoes and work up to Campbells chicken noodle soup or chicken with rice soup.
Your child may exhibit periods of hyper-activity as well as lethargy. These are all normal.
If your child bleeds or develops a fever, call the doctor immediately.
Never give your child aspirin. If your child takes liquid Tylenol, refer to the chart on the bottle so that you don't accidentally overdose them with medication.
The doctor advised us to stay away from crowds with our child to avoid germs.
Also, expect that your child will wake up during the middle of the nights for at least the first five nights following surgery. Keep a cup of ice chips or water by your child's bedside at night in case they wake up with a dry throat. It is very painful for the child to experience this.
My son woke up every night around midnight to 2 a.m. the first five nights. I had the cup with ice chips and a cool cup of water by his bed, but even still I had to get him ice cream in the middle of the night to calm that sore throat. It's very crucial that you show your child love and kindness during this time. I know you will be tired, but your child will be scared and hurting. The last thing you'd want to do is become upset. Your child will sense your frustration and will make his or her pain worse.
Your child needs your attention, love and kindness during this difficult time.
Slowly incorporate food back in to the diet.
10. What to do if your child needs pill-form medication.
Many children with Autism take medication in the form of pills.
If this is the case for your child, here are some options for getting your child to take their medications despite a sore throat:
- Crush up the pills and put them in a small cup of flattened soda.
- Crush up the pills and put them in yogurt, applesauce, or pudding.
- Once your child can tolerate taking whole pills, put them in yogurt, applesauce, or pudding to make them go down easier.
- Eventually your child will be able to take the pills whole again, but make sure your child is drinking plenty of fluids.
When to Call a Doctor!
If your child has a fever over 101 degrees.
Has severe pain not relieved by medications.
Has bright red bleeding from the mouth or nose.
Stops going to the bathroom and won't drink.
Having surgery is no fun for anyone, never mind a child with special needs and sensory issues.
Expect to have the surgeon see your child within a week after surgery. Don't be alarmed if your child loses a couple of pounds after surgery.
Your child's throat will remain sore for at least 10 days, sometimes longer.
All patients are different. It takes about eight full days for the healing process. Expect your child to wake up during the middle of the night most of those eight nights in pain. Keep a drink available at their bedside. Expect to get up out of bed and administer medicine. Approaching days 9 and 10, expect your child to no longer wake up with a sore throat.
Be prepared to be physically and mentally tired throughout this process. Keep yourself in good health. Drink plenty of fuilds and get rest. Don't be afraid to ask for help.
On the positive side, I'm happy to report that my son no longer has breathing issues, doesn't sound nasally when he talks, and has had no congestion issues. The surgery went well and really helped him overall.
Please leave your comments below. I would love to hear your story.