Brain Injury after Tonsil and Adenoidectomy - Need Pediatric Neurologist and Other Advice, Please

[Anonymous]

It pains me to write this post, but I am in need of guidance at this point. My 2 and 1/2 year old son went in for a tonsil and adenoidectomy to remedy his night breathing issues (sleep apnea). He has since shown signs of injury to his brain. Immediately after the surgery he started twitching throughout the night and during naps. More recently he has started having daytime episodes of spacing out (absence epilepsy) and moments where his eyes roll back and forth (with lids open -- prior to and just after sleep). None of these symptoms existed prior to his surgery.

My pediatrician has (over the phone) tried to reassure me that this can be normal in a toddler. But, the fact that these symptoms did not exist prior to the surgery has me riddled with guilt and distress.

I am looking for both a new pediatrician and a good referral for a pediatric neurologist. In addition, please let me know if you have any advice for a mom dealing with injury after surgery. I'm heartbroken and lost.

Thanks.

[Anonymous]

Dr. Conry at Children's Hospital has a specialty in epilepsy. That being said, we see a different neurologist at Childrens but I'm not sure if we have the best person. We will see our neurologist next month but then I plan to get a consult with Dr.Conry.

202-476-5000 to get an appointment.

The website doesn't say that Dr. Conry has a specialty, but another of my child's doctor, looked in her directory and it said what each person's specialty is. Our doctor was not in the guide because he hasn't been there since 2006 when the guide was published. There are also neurologists that specialize in brain injury and trauma. I don't know if you can call the neurology dept and ask for the person who is a specialist in "fill in the blank".

[Anonymous]

I don't have advice, I just want to say I'm so sorry.

[Anonymous]

Just wanted to say that my DC went through something horrible (not at all related to surgery or your DC's symptoms) and I thought I had lost my child and was beside myself. Things eventually resolved themselves. I hope your pediatrician is right. Good luck.

[Anonymous]

I am the PP with advice on CNMC. My child has "twitching" when he falls sleep, is waking up and probably overnight. Look up myclonic seizure. You will probably be asked to have an overnight Video EEG at Children's hospital. It is not that bad. My child (now 2.25) has had 2 stays in the neurology ward of Children's hospital. They are still trying to figure out what he has and what meds will control it.

But don't take your pediatrician's advice, see a neurolgist and get better advice from someone who specializes.

[Anonymous]

i would think that you should go right to children's national here and if that does not seem to work out for you, then hopkins.

i don't want to sound alarmist, but why would your pediatrician be trying to reassure you? she should be the one on the phone with children's setting up the appointments herself!

in fact, if you don't find people are being responsive to you over the phone, i would walk right into the emergency room with him and exaggerate his symptoms a bit.

when was the surgery?

[Anonymous]

I would go to the excellent neurologists at Kennedy-Krieger (Hopkins). I recommend Alec Hoon.

[Anonymous]

BTW, children do recover from brain injuries, even if that is what it is. So many success stories at KKI. Talk to Dr. Hoon, he is a wonderfully warm doctor. I don't recommend the Children's neurologists. They are excellent clinicians but Children's has a way of making you feel as if your child is not under anyone's care.

[Anonymous]

What is Dr. Hoon's specialty.

[Anonymous]

Sending sincere prayers to you and your child-I bet it all works out all right.

[Anonymous]

Definitely go to KKI--I believe they have a brain injury section.

[Anonymous]

OP, I hope this is really just a new sleep pattern that he has developed as a result of the surgery. However, if you believe these are seizures, you might want to think about the ER. Untreated seizures can lead to further brain damage.

[Anonymous]

OP, I'm sending you my sincerest warm wishes. My dc had a head injury at five months. She went from a smiling, giddy, sweet baby to a still, silent child. It was incredibly frightening. However, she was recovering from the trauma and within six weeks had returned to her previous self. Those were the longest weeks of my life - especially since her injury was my fault. It's just horrifying to watch your child in that condition. In my case, we had a great group of docs at Children's. I suggest you take your child to the ER at Children's tonight. I don't want to be alarmist, but we waited a day and her injury was worse because of it. Seizures at 2 1/2 can be very, very dangerous and cause long-term effects. Good luck. Please report back. I'll be thinking about you.....

[Anonymous]

I would ask to get a copy of the surgery report. Every doc who performs a surgery has to write a narrative of everything that happened during the surgery called a surgery report. Years ago, I had bizarre symptoms following a surgery and I was convinced that it was due to the surgery even though my doc was telling me that it probably wasn't the case. I ended up requesting the surgery report and found out that complications had actually occurred during my surgery and those complications were the reasons for my symptoms. The doc who had performed my surgery had told me that the surgery had gone very well. He had never mentioned the complications. If I hadn't requested the surgery report, I would have never known and never understood where my symptoms were coming from.

[Anonymous]

Based on your observations, it absolutely sounds like your child needs a follow-up evaluation and medical care. Good for you for picking up on these issues and not just passively accepting what you were told over the phone. If this was my child, I would go to the emergency room at Children's Hospital here in DC. If for some reason I didn't want to go to Children's I would go to Hopkins, Chopp in Philadelphia (a great children's hospital) or the Children's Hospital in Boston. I would go to a hospital that is not connected to the doctor or institution where the initial surgery was performed. They will do an evaluation and can call-in specialists to consult; they will help you assess if your child needs care immediately, and if not should be able to connect you with appropriate follow-up specialists. Going to the emergency room is an appropriate first step.