Tonsillectomy for 3-year-old at UCSF Children's Hospital Oakland

I have two parts to my question--Are there alternatives to a tonsillectomy? And I am looking for a recommendations for ENT at UCSF Benioff Children's Hospital for a tonsillectomy

1. Are there alternatives to tonsillectomies? My 3.5 year-old has been diagnosed with sleep apnea due to very large tonsils (they touch each other). We have seen two ENTs and both recommend a tonsillectomy. We are exploring that path, but I am curious if folks have experience with alternatives to the surgical route. I have heard of a pharmaceutical alternatives with Singulair and Flonase, but I have also heard Singular was recently given a black box warning for nuerological side-effects (suicidal thoughts in children). My son sees a cranio-sacral therapist and chiropractor, but I was wondering if there were more avenues to explore before booking surgery.

2. If we proceed with the surgery, do folks have recommendations (positive or negative) for ENTs at UCSF Benioff Children's Hospital Oakland? We are currently seeing Dr. Weinstein and she has been lovely, but I want to hear from other parents about their experiences.

Any other tips or suggestions for handling a tonsillectomy with a 3.5 year old are appreciated.

Cheers.

Parent Replies

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We had a great experience with Dr. Sims Edwards. We did try allergy meds before we opted the surgery. They improved her snoring, but she still had mild-moderate sleep apnea. We had to try a few because some worsened my daughter's sleep rather than helped it and ultimately, we felt that we had to do the surgery. Good luck!

Hello, I know that surgery is incredibly stressful to think about with a young child and wanted to reach out to respond. It is great that you have already been to an ENT and also had a second opinion. Have they recommended a sleep study?

For my now five year old son we had surgery when he was four. After seeing two ENTs earlier on, we went to another ENT who took one look at him and instantly asked about his sleep, trialed Flonase and Zyrtec, and then ordered a sleep study which confirmed his suspcion of sleep apnea. I honestly can say that the surgery has been life changing for my son and our family. While the Zyrtec and Flonase helped some, we also minimized any potential allergens in the house, etc, it was an almost instant change after the surgery where my son went from restless sleep and waking at night to sleeping soundly...through the night. I only wished we had known sooner it was that big of a change.

His surgery was done in Boston before relocating so I do not have a local surgeon to recommend but wanted to also mention that in addition to the tonsils (my son's were enormous as well), my son also had his adenoids removed and the ENT also performed a turbinate reduction--turns out his airway was so obstructed the Flonase was not likely even making much of a difference because it could not effectively get in there. (The surgeon we saw was Dr Gi Soo Lee at Children's Boston just in case anyway is reading this from the east coast--he was absolutely amazing and one of his specialties is in sleep disorders in children)

We were blessed with an amazing recovery, which I know is not the same for everyone, but for us it was so smooth. I followed the post-op instructions and gave Advil and Tylenol round the clock (keep track in a notebook because it gets hard to remember when you are doing it every three hours those first few nights). The powder Tylenol was so helpful and we gave liquid Advil and I put it in sorbet a few times as it was hard for him to swallow. I bought a bunch of frozen treats and fluids but found that by the second day my son was able to tolerate really soft foods like scrambled eggs and french toast. The first few nights were difficult (mostly for me I think) and he was not happy to be woken up for medication but I do think staying ahead of that pain helped greatly. Mid-way through recovery when the scabs start to fall off was actually a little bumpier for us but only for a day or two and then by about two weeks in he was almost back to himself. To be honest there were days I had to slow him down for he was over doing it!

We had soft foods on hand, frozen/cold beverages and food, and Tylenol and Advil to alternate. Rubber gloves and a small flashlight in case you have to look in the mouth. There may also be some bleeding so having wash cloths, soft cloths to blot may also be helpful. It was also fun to have a wrapped present to open when we got home and some other treats those first few days (new books, sensory play, lots of movies, etc)

I had a lot of concerns too with surgery but am so so happy we went that route. My son's eyes are not dark any more and he went from sleeping with his mouth open and snoring to finally sleeping peacefully and quietly. Sleep is essential for well-being and development--you are doing so much already and it sounds like it isn't really helping get to the core of sleep. Please reach out if I can help in any way. All the best to you and your family.

Both our kiddos have had their tonsils (and adenoids) out - one at 7, the other at 13, both due to sleep apnea. With our younger child we tired acupuncture and other holistic methods, none worked. The surgery worked right away. I know it's scary - believe me! But the surgery did wonders for both kids. UCSF is a top notch facility - we were Kaiser but I'm sure all of these surgeons are great. Wishing you the best!

I was in your same boat last year when my 4 year old daughter was diagnosed with sleep apnea due to huge tonsils. I was hesitant to do surgery on such a little one and researched alternatives but nothing I found would have reduced their size much. In the end what swayed us was knowing all the negative impacts of bad sleep for a growing kid. I'm so glad we went ahead and did it! Now she sleeps so well and doesn't snore at all anymore! The only thing she remembers about the experience is that they gave her the wrong flavor of medicine and she didn't like that 🤣.

The hardest part for us was getting her to take her medicine after since it hurt to swallow. We ended up mixing it with a bit of ice cream.

We were at Kaiser but it's such a common procedure I'm sure your surgeon is well practiced! The only tip I have is ask that the surgeon performs the operation themself, not a student or anyone else. It sounds obvious but since Kaiser Oak is a teaching hospital sometimes the surgeon observes and it's always best to get the best person to do it!

Good luck, Mama, it's so hard to make these decisions for your tiny human and I'm sure you'll make the best choice for your family. 💓

I work in the surgery department at Children’s Hospital Oakland, and have cared for hundreds, of kids who received tonsillectomies. My own child  had her tonsils removed at Children’s when she was a teenager. Her throat was really sore, but she got through it, and it was so worth it! She was finally well rested, did better in school, and better overall, because she was not chronically sleep deprived.
It is understandable that the prospect of surgery for your child worries you, but you will be in good hands with any of the ENT doctors at Children’s . They are all very competent and kind practitioners. The anesthesiologists and all the staff are great, too. 

Recovery can be a bit rough, but it does seem to go more quickly in younger patients than older. Lots of fluids, popsicles, and soft foods go down well. Children are resilient.

 Your child probably has not had good sleep for some time because of sleep disordered breathing, and none of us are at our best when we are tired, right? Once everyone in the household is sleeping well...life is just better!

I want to add that I am glad that you did NOT give your child Singulair. The black box warning is well deserved.  I know several parents whose kids were negatively  affected by Singulair, triggering depression that in some cases never completely resolved. I do not understand why it is still so widely prescribed.