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

[Anonymous]

OP, could this be an effect of the pain meds that your child is taking?
Any recent vaccines?

[Anonymous]

This is the OP. Thanks to everyone for your sincere responses, and many kind words. My son's last vaccinations were in July of this year, 3 months before the surgery, and none of these symptoms existed (He still does not have the MMR or Varicella). So, I don't think that can be a factor. Most of the symptoms presented immediately after the surgery -- the next day. Hence the connection I am making.

The surgery was done at Children's in DC in October, and I will ask for a surgery report based on your recommendations.

I'm thinking I should go to an emergency room at a different hospital, also based on your recommendations... but does that mean I should go tonight? I have an appointment to have my son evaluated tomorrow in person by his current pediatrician and plan on asking for a pediatric neurologist referral as well. Though I will also look into the recommendations from this post.

I'm so confused, and want my son to get the care he needs, but am not sure if that means I need to act immediately? How rapid can damage be done? Is an appointment tomorrow potentially a day too late?

[Anonymous]

I don't think it hurts to go to the ER, especially if it could stop things from getting worse like the PP suggested. I wouldn't bother seeing the ped tomorrow if this is the one who is telling you everything is fine. You already know she doesn't take your son's symptoms seriously.

[Anonymous]

OP, I would recommend going to Hopkins. If your son is asleep, and the symptoms have been consistent, then I think you could wait until tomorrow. I am not a medical professional, however. I think most of the posters who said that further damage could be done were talking about the first day or so following the injury. It sounds like it has been a longer time for your son and that his symptoms are not worsening.

If I were you, I would keep your appointment with your pediatrician tomorrow and then take it from there. You can drive to Hopkins tomorrow if necessary, but the timing with Thanksgiving is not ideal.

[Anonymous]

Hang in there. All our thoughts and prayers are with you. Be assertive and attentive with your ped tomorrow and keep us posted...

[Anonymous]

Who was the ENT? and what did the ENT say following the surgery? Have you had a follow up with him/her? Did they indicate there were complications? i'm so sorry.

[Anonymous]

Honestly, OP (I'm the pp with the kid with the head injury)? I would drive to Hopkins ER tonight (since you had the surgery at Children's and are not comfortable there). I just would.

[Anonymous]

OP, I'm so sorry.

My ds is special needs and had all kinds of wacky medical issues. We saw endocrinologists, geneticists, neurologists - you name it. We went to Georgetown and Childrens to see these specialists.

But it was the wonderful doctors at Hopkins who finally diagnosed my ds. I would definitely seek assistance there.

Good luck - please check back.

[Anonymous]

I wish I had some advice for you, but I don't. But I can offer prayers. I hope all goes well for you child.

[Anonymous]

Anonymous wrote: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.

I'd second that, and I suggest you also you request your DC's entire medical records- from the peds office, the hospital, from anyone involved in your DS's medical care. You may have to pay for them, but it's worth it, whatever the cost. Honestly, if you truly feel concerned about your DS, you may want to familiarize yourself with an atty at this point, just to see what they suggest.

I don't want to scare you; you're son's issues may be nothing or they may be something, but truly, that is irrelevant when evaluating the steps you should be taking at this point. No one but you has your DC's best interests in mind. Your DS may have fabulous drs, but chances are, when it's time for them to go to sleep at night, their heads hit the pillows without giving your DS a second thought. That doesn't mean they're bad peeople or even bad drs, they just only have so many hours in the day, so many patients, plus their own lives- personal and professional- to consider. It's not personal, it's "business". Think in those terms at all times. If you meet resistance- beware. Divulge nothing; assume nothing. You feel something is wrong, so protect your DS until you are assured that everything is fine. The drs work for you; don't forget it.

GL.

[Anonymous]

Anonymous wrote: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.

I have nothing to offer by way of recs, but I just wanted to say I'm so sorry. You must be terrified. I will keep you guys in my prayers.

[Anonymous]

OP, I don't have advice to give. I just wanted to say that my thoughts are with you and your son. I hope that everything turns out allright for you and your son.

[Anonymous]

PP here. I just thought of something -- I haven't read all the posts, so this might have already been mentioned. Perhaps, could he just be having a reaction to medication? Is he taking medication now for pain? Or perhaps he is having a reaction to the anesthesia used during the surgery? I'm thinking that perhaps his different sleeping problems are some sort of temporary way that his body is dealing with the after effects of the surgery.

[Anonymous]

OP, I also don't have any advice, though I think you have received some very good advice from others here. I agree with 0:11.

My DD had a far less serious medical issue - I am not comparing it to yours - but still it was something that needed to be diagnosed and treated, and we saw many different highly-regarded doctors, including at both Children's and Hopkins. We must have seen a dozen doctors over about a 16-month period. What they were all telling me just did not feel right to me, so I went with my gut and kept pursuing it until I finally found someone who was able to help us tremendously and largely resolve the issue. It was a difficult time, but if I had given up after doctor #5, we might not have gotten the outcome we got.

Yes, these doctors are experts, and you're not a neurologist, but you are your child's best advocate and the person most invested in demanding the best possible care for him, so don't feel you have to defer to the professionals' judgment if something doesn't seem right to you or you are not getting satisfactory explanations for what is going on. Just keep pushing.

I will be praying things work out for your son and that he is fine. Please check back in - there are a lot of people thinking of you.

[Anonymous]

OP, so sorry about your situation -- if you are still looking for a pediatric neurologist, several pediatricians at Georgetown recommended Dr. Marc DiFazio to us for our DC. We thought he was great and he obviously is well-respected by colleagues. His practice's website is www.capital-neurology.com.