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Recurrent strep throat -- tonsillectomy?

Discussion in 'Parents of Children with Type 1' started by Snowflake, Apr 23, 2014.

  1. Snowflake

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    My daughter has had 5 lab-confirmed strep throat infections in the past 15 months, and another couple that were suspected but not confirmed. When she has strep throat, it presents with persistently low bgs, ketones, lack of appetite, and vomitting. It's basically a nightmare for us and her to manage Type 1 until the antibiotics kick in.

    We took her to an ENT today. Based on what Dr. Google said, I had expected that the ENT would propose maintenance-dose antibiotics as a first step. Instead, the ENT suggested that we proceed straight to tonsillectomy. My husband and I are a little apprehensive about signing up for elective surgery, although we also live in fear of the next bout of strep throat. Knowing my daughter, I think this will be traumatic for her, as she was pretty freaked out by being given anesthesia before her celiac endoscopy, and is still talking about it 4 months later.

    So we're trying to decide whether to go straight to endoscopy or take a wait-and-see approach. Has anyone been through this -- either the recurrent strep, or the tonsillectomy? Any insight on whether this is the right course of action?
     
  2. nebby3

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    Personally I would do the tonsillectomy. My non D son had his adnoids out and it was no big deal. I would be wary of long term antibiotics but my kids have a lot of allergy issues. When I dk have a kid on antibiotics I make sure they are taking probiotics too.
     
  3. dshull

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    I would also go for the tonsillectomy. My son had his out when he was 4 - he had recurrent tonsillitis and while he would sometimes test positive for strep and sometimes not, they did blood work and the strep level in his blood was very high and they theorized that the strep was living deep inside the tonsils. They tried the heavy dose of antibiotics and he got a c difficle infection, which is a truly disgusting amount of diarrhea that lasted for weeks. I would not recommend a high does of antibiotics for a T1D for that reason alone.

    A few thoughts - this was before our son had D and so it was done outpatient. I imagine that you would be inpatient and be more closely monitored. I will not sugar coat it - the recovery from a tonsillectomy is not easy. He also had his adenoids out at the same time and he barely noticed that part of it but the tonsil recovery is challenging and not pretty. He was out of school for about 8 days. That being said, would I do it again? ABSOLUTELY. Once he recovered from the surgery, he was like a completely different kid. I really had not realized that he has been feeling pretty cruddy for months and even when he wasn't technically "sick," he did not feel great. It was like we got our old kid back and still five years later I am so glad we got it done. And without tonsils, the chances of getting strep are next to nothing!

    Feel free to PM me if you want more details. We had it done at a children's hospital and they handled the anesthesia, etc. great. But not to downplay your daughter's anxiety. It seems like she has really been through a lot :(
     
  4. mmgirls

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    I neighbors kid was a strep carrier, and when her tonsil and adenoids would flare up she snored and did not sleep well. While sleep is very important I think what you describe is far worse.

    It is so hard to know what is best sometimes. But I think I would be willing to trade recovery from this type of surgery for freedom of ongoing strep infections that induce low bg/ketones and vomiting in my young TID kiddo.

    But I don't know, I guess you could always try the low dose meds and see if it does help so that you can be further away from the Celiac DX and ease your dd's anxiety
     
  5. Snowflake

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    Thanks, everyone! These are incredibly useful insights. dshull, I especially appreciate hearing about your kids' high-dose antibiotics. You're right about the diarrhea; when I was gathering my initial thoughts after the doctor's appointment, I hadn't factored in that antibiotics can have their own side effects. She does fine on Amoxy, but has definitely had stomach issues with some of the stronger ones.
     
  6. rgcainmd

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    I'd definitely go the tonsillectomy route. My non-T1D daughter had this surgery done on an outpatient basis years ago. One day of pain, well-managed with narcotics, then she was fine. We never regretted our decision!
     
  7. Megnyc

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    I had my tonsils out when I was very little because of recurrent strep with extremely high fevers. I didn't have diabetes yet so I don't have much advice in that regard.

    I don't remember the procedure being bad at all but I was very young. My only suggestion would be to talk to the child life specialist at your children's hospital (if that is where the surgery will be done). They should have some strategies to reduce your daughter's anxiety about the procedure.

    Good luck!
     
  8. StacyMM

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    My kids seemed to get strep over and over and over...and it usually started with DD. We had her tonsils out a few years ago and it's been wonderful. Between the two of them, I think we've had one case of strep since she's had them out.

    I worried quite a bit about it but it was really easy. She had the first appointment of the day, we reduced insulin going in, numbers were good before and after surgery. They had glucose ready, just in case. Recovery was easy for her - she slept quite a bit for the first day, felt better the next and was back to normal in a few days.

    I see that you have a Dexcom - we didn't have it for the tonsillectomy but we did have it for my son's surgery last year and it was fabulous. We explained to all of the nurses and the surgery team and the anesthesiologist. We sent the receiver back with him, the anesthesiologist could monitor it and it was sitting on his bed when we made it to recovery. His was a much longer surgery but so much less stressful because of the Dexcom!

    If you do go with the surgery, the hospital can probably help with the anxiety. We've always gone to a children's hospital for surgeries and their child life specialists are amazing. They also offer pre-surgery tours for kids where they show off the rooms, the recovery, the pajamas, the popsicles in the fridge, etc. Both my kids have gone to them and I recommend them to anyone with an anxious kid who has an option to do it.
     
  9. Mish

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    I WISH I had had mine out when I was a kid. It seems that I did grow out of the propensity to catch strep, as I haven't had it in years now, but I had so many infections as a child that any time I get even a tiny twinge in my throat I worry that it's strep. I really could have done without having it all those times. Really. If it were my child, knowing what I know of having it myself, I'd go for removal in a heartbeat.
     
  10. dpr

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    Another vote to get them out! My daughter is rarely sick since they were removed. The doc said when he took them out they were covered in goo that looked like peanut butter, GROSS! A useless little part of the body that seems to only cause problems...
     
  11. Snowflake

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    Thank you, everybody, for all of your input! Very helpful and comforting as we make this decision.
     
  12. Lee

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    My Coco had to be on preventive antibiotics for the first 5 years of her life due to urinary tract reflux (It does damage the teeth - or at least her antibiotic did). Then, as soon as she was off the 'biotics, she would swing between strep and scarlet fever. After about 2 years, we had her tonsils removed and she had never had another bout of strep again. It was a great decision on our part.
     
  13. 10Years

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    Our experience was not as easy.. actually pretty traumatizing. My DD had her tonsils and adenoids out at age 12. The procedure was quick and the first few days were fine. Then it all went down hill. She started to lose strength and started to refuse to eat and drink. It turned out that the site was not healing properly and she was bleeding. She seems to have been swallowing blood for two days. She started to vomit blood and blood clots one night, her blood pressure dropped and we had to rush her to the hospital. She had to have emergency surgery to stop the bleeding. Spent two days in ICU, lost a lot of blood and it took a week to recover her strength. The surgeons blamed all this on her diabetes - saying that her healing was slowed due to T1. I am posting this to make sure anyone who wants to get this surgery hears both sides. Now I am happy that the procedure was done, she sleeps better and hopefully we can avoid strep (time will tell). But consider carefully. There are risks - it was very scary.
     
  14. rgcainmd

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    FWIW, I'd opt for surgery over repeated courses of and/or long-term antibiotics. Opportunistic infections and antibiotic resistance are a beotch.

    Didn't realize the initial post was "old" (and that I had already responded to this post!) I'm so sorry to hear, 10Years, that your DD had such a terrible time of it! But I think your unfortunate experience is an example of an exception rather than the rule. I'm glad to hear she is now doing well!
     
    Last edited: Nov 15, 2015
  15. DiabetesMama

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    I had my tonsils removed when I was 23 and it was awful! I would vote for getting them out when your kids are small. Although I am not type 1, I had reoccurring strep all my life, 9 times in one year! My mom and dad would not get them taken out when I was little, too scared of the risks (which are very small). I wish they had done it when I was young because I have heard that it is much easier to get over when you're young. It was so bad at the age that I had them removed and then to make things worse, I found out I was allergic to the pain killer they put me on and a trip to the emergency room the day after surgery because I couldn't stop vomiting. I would do it again though because I have not gotten strep once in over 11 years! It is totally worth it, but I would advise you to do it when they are young. The doctor told me that I could have suffocated in my sleep because even when I wasn't sick they were HUGE! I always felt kind of sick until they came out. She told me they were the biggest tonsils she had seen in her years of practice. Gross. I would just suggest trying to talk her through it and let her know it would mean better health sooner than later, because it will only keep happening and it seems to get more resistant to the medicine. The last batch of strep was on Christmas day 2003 in the emergency room and the shot of penicillin they gave didn't even really kick in for three days or so. I was miserable. It was the following February of 2004 I had them taken out. Sooner than later is what I would suggest. Hope you can get things worked out. Keep us posted.
     
  16. DiabetesMama

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    10 Years- Wow! Sorry to hear that you had such a horrible experience! That's good that you shared your experience and let them see both sides of the story. I bet you all were so scared! So glad your daughter pulled through and is ok.
     
  17. Sprocket

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    Another vote to have them out. I was 24 when I got mine out (and it was brutal as an adult) - my mother didn't want me to go through that, but instead I picked up every cold, flu etc. going and had tonsillitis repeatedly throughout my childhood.
    My daughter had hers out when she was 9 (before D). She snored, choked on her food a lot and her night time mouth breathing shaped her jaw so that she needed braces. It was a very positive experience. By that evening she was eating soup and jello. So glad we got them out. She also had repeated bouts of strep and tonsillitis. Now she rarely gets sick and almost never gets a sore throat.
     
  18. Lakeman

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    I understand the desire to avoid surgery and the desire to avoid repeated strep infections. Tonsils are nice to keep but most people don't notice a difference when they are gone. But while the surgery would probably be better than the infections is there a third option?

    Was the strep confirmed with a lab test? If not it might not even be strep.
    Could someone else be a carrier so that just helping the other person or avoiding that person would stop the recurrent infections?
    Have antibiotics been used inappropriately in the past? Wrong kind, too short amount of time, missed doses, wrong antibiotic...
    Could her immune system be suppressed?
     
  19. Snowflake

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    Original poster here. Thanks so much for sharing this. While I'm SO happy that we went ahead with the surgery, it's really important for people considering this to hear that the small risks that seem abstract and remote, actually do happen sometimes.

    Our daughter's overall health, including D management, has been incredibly improved since we did the adeno-tonsillectomy in May 2014. Our non-d middle child had his adenoids out (along with ear tubes) around the same time due to recurrent ear and sinus infections. Both of them have been far, far healthier since -- no more strep for my daughter, only one ear infection for my son, almost no colds or runny noses in our house, and much improved sleep all around. They both seem more energetic and happier, I assume because they were living with low-level infections pretty much constantly before the surgeries.

    I will say, though, that my daughter's recovery was a little rougher than I expected, esp the first 36 hours, partly because of T1 and partly because of her young age. She didn't have dramatic complications like 10Years' child, but she was in a lot of pain, the pain medicine depressed her appetite, the hospital would only allow her sugar-free and gluten-free cold foods, and all of this was really miserable for her and made bolusing difficult for us. However, the short-term pain was definitely worth the long-term gain.
     

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