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[mypandabear]

Hi everyone! I'm new here. We have been thrown into a whining of information and I feel like I'm underwater! Our 5yr old was recently diagnosed with PANDAS. We noticed her change in October of 2014 after a strep infection. She has not been the same since. She has had good days/weeks and really bad ones as well. 2 days ago she had her tonsils and adenoids removed at UCLA by Dr Alisha West. She said they needed to come out regardless of her PANDAS. But is confident her symptoms will go away. During surger they found a large abscess and sent it to be cultured to find out exactly what bacteria was hiding in there. We are at home and she is trying to recover. She is in air of pain and her tics are significantly worse. Have any of you had luck with symptoms subsiding after tonsilectomy? If so, how long did it take and what else did you do? We also have her on Vitamin d and b supplements. Calcium supplement and oregano oil. Any info would be great! We just want our little girl back

[melmix]

Yes. My son, 8 has made huge strides after tonsillectomy. That said, he would not take abx for days afterwards, got a 105-106 fever and had his worst behavior ever right after. As soon as we got him on abx he got better and better I would say over 2-3 months (there was an infection in his biopsied tonsils). We have been very good until recently when I noticed he was flaring a bit. We found out he has a blood histamine of 6 so it seems it is allergy related right now.

Melmix

[mypandabear]

Thank you for sharing! They did not put her on abx either. She also has a fever, but that high (102-103) The dr said not to worry, just make sure I keep the fluids in her. I can't help but worry though, I wish they had prescribed her abx

[pr40]

if she was diagnosed with pandas, she should have been put on abx. that's standard protocol. ask why she wasn't.

ask also, why dr thinks pandas will go away after tonsilectomy? (She may be in for a Nobel prize, if she knows what she is talking about)

Melmix gives an example of improvement BUT in the example how can we tell if it is tonsilectomy or abx?

[mypandabear]

She has been on abx off and on. We are not going to put her on continuous abx. She didn't want her on it directly after surgery. She said she felt that her PANDAS symptoms would subside after tonsils were out because she was pretty confident that the strep was "hiding" out in her tonsils. So what I gather is that if we can potentialy get the part of her body that keeps hanging on to the strep, out of her body then we are more likely to keep her healthy, and in turn keep her symptoms at bay.

[pr40]

but strep is not the cause of pandas. pandas is an autoimmune condition. getting rid of infection is only one thing you need to do. many kids here are triggered by various triggers, hence PANS which is beginning to replace PANDAS diagnosis.

for your theory to work, your kid would have to have only strep as a trigger.

[mypandabear]

Right, I understand what your saying, but at this point, she has been diagnosed with PANDAS, not PANS. So we are focusing on getting the strep out of her system. I'm. It saying that it is going to "cure" her, I'm just hoping and praying that it helps alleviate her symptoms. Now, if the abscess that they sent to be cultured comes back with a different bacteria, then we will deal with that then. As for now, we are trying to get the strep out!

[dcmom]

My daughter has PANDAS due to strep throat, initially. First episode was remitted by 30 days of daily antibiotics. A month later she had her tonsils out- and it caused a major exacerbation of symptoms- even though on antibiotics.

 

Strep may be your trigger, but what it triggers is an autoimmune reaction. IMHO your child would probably benefit from a long course of antibiotics (30-60 days) plus an immune dampening treatment (steroids, IVIG, etc).

 

If the issue with pandas was only clearing illness, it would be much simpler, and this forum wouldn't be so busy😞

[mypandabear]

I'm not opposed to doing a 30 day cycle of antibiotics. They just weren't prescribed. I guess they want to see how she does after she heals from her surgery. She does still have a fever, so I'm going to call and request some. I don't know if this is the same for anyone else. But with my daughter, her symptoms would flare and we would know that her tonsils would also be inflamed. They always went hand in hand. I could tell how her tonsils looked by the way she was acting. Has this happened with anyone else? Unknow the infection went deeper than just her tonsils, but I really feel good about getting them out.