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Update 3 Weeks Post Tonsillectomy...


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DD's tics are still bad - even worse sometimes than before the surgery. And now she is having an incredibly difficult time getting to sleep at night. It's taking her about 2 hours or longer every night to fall asleep. She gets upset that she's having trouble getting to sleep and then works hersulf up into a tailspin - frustration, crying, etc. DD is 9 and always sleeps in her own bed, but she's slept with us the last two nights just so we could help calm her down enough until she was able to doze off. This difficulty falling aleep is all new following the tonsillectomy. And she is very sensitive to any light at bedtime. She now can't stand the little bit of light that shines through her curtains from outside and says it prevents her from falling asleep. Once DD falls alseep, however, she stays asleep, thankfully - it's just getting her to actually doze off.

 

The surgeon who removed DD's tonsils called us on Saturday to report that while they didn't find any staph or strep in the tonsils, H. Influenza did show up when they cultured them. Given this, he changed DD's antibiotic from Augmentin to Bactrim as he said should there be anything left post surgery, Augmentin doesn't work for H. Influenza, but Bactrim does. DD's tics are as bad as ever with the antibiotic change and the sleep issues have gotten worse since switching the antibiotic.

 

Anyone else found H. Influenza with a culture of tonsils?

 

Any other thougths? I feel like things are getting worse post surgery. DD is maybe less hyper than before surgery, but the tics are still bad (maybe even worse) and now we've got the sleep issues. And she seems more emotional and easy to cry.

 

We don't see Dr. L until 10/29. Surgeon (who works with Dr. L on tonsillectomies for PANDAS kids) wants us to keep DD on the Bactrim until we see Dr. L.

 

Thanks,

 

momindc

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DD's tics are still bad - even worse sometimes than before the surgery. And now she is having an incredibly difficult time getting to sleep at night. It's taking her about 2 hours or longer every night to fall asleep. She gets upset that she's having trouble getting to sleep and then works hersulf up into a tailspin - frustration, crying, etc. DD is 9 and always sleeps in her own bed, but she's slept with us the last two nights just so we could help calm her down enough until she was able to doze off. This difficulty falling aleep is all new following the tonsillectomy. And she is very sensitive to any light at bedtime. She now can't stand the little bit of light that shines through her curtains from outside and says it prevents her from falling asleep. Once DD falls alseep, however, she stays asleep, thankfully - it's just getting her to actually doze off.

 

The surgeon who removed DD's tonsils called us on Saturday to report that while they didn't find any staph or strep in the tonsils, H. Influenza did show up when they cultured them. Given this, he changed DD's antibiotic from Augmentin to Bactrim as he said should there be anything left post surgery, Augmentin doesn't work for H. Influenza, but Bactrim does. DD's tics are as bad as ever with the antibiotic change and the sleep issues have gotten worse since switching the antibiotic.

 

Anyone else found H. Influenza with a culture of tonsils?

 

Any other thougths? I feel like things are getting worse post surgery. DD is maybe less hyper than before surgery, but the tics are still bad (maybe even worse) and now we've got the sleep issues. And she seems more emotional and easy to cry.

 

We don't see Dr. L until 10/29. Surgeon (who works with Dr. L on tonsillectomies for PANDAS kids) wants us to keep DD on the Bactrim until we see Dr. L.

 

Thanks,

 

momindc

 

I have a long history with strep and was pretty sure I wasn't helping my DD's flares. I had my tonsils out this summer and they found H. Influenza in mine along with Non-group A Strep. My surgeon hit me with Clindamycin afterwards and my DD improved. I saw an ID shortly afterwards to make sure I dotted all my i's and crossed my t's, and he dismissed the H. Influenza as normal flora. I'm interested to hear what you find out from Dr. L.

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My dd was completely cured from her t and a although we didn't realize it at first. She had a horrible time sleeping as well for up to four weeks. I attributed this to terrible pain and dryness in the throat which can be so painful. I found using a humidifier at night did help things a bit.

 

Her tonsils were cultured and fhere was evidence of strep as well as about 5 other bacteria but not in high numbers. No influenza.

 

Dd has her vocal tics. If anything they have probably gotten worse but don't bother her In The least. She does a throat clearing every 3 seconds when reading, watching tv, or zoning out. I didn't realize at first that the other behaviors had vanished bc she was so beside herself in pain and dreaded sleep because of the pain. It's been since aug 29 and she still sometimes wakes with a sore throat. A little yogurt smoothie helps tremendously in the morning.

 

I would give it a bit more time and try to find ways to make sleep more comfy with both pain meds if you are using them and give a humidifier a try. If she wakes at night give a sip if water to get things wet again.

 

Hang in there!!!

 

My day is having his out on Halloween. Fingers crossed we have as much success with him.

Edited by JoyBop
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