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Well, DD had T&A last Wednesday and things are worse than ever here. She has the PANDAS induced eating disorder and has lost 8 pounds since last Wednesday and will not eat hardly anything at all. I took her back to the doctor today because she is so frail and lethargic. I don't think he totally understood the whole thing because he said that the 8 pounds was nothing that he didn't think she would gain back. To say that in front of someone who is afraid to gain weight concerns me. I'm afraid that she is going to think this new weight should be her new normal, when in fact this new weight is below the 5th percentile. He would not give her IV nutrition although he said she was "on the line". Has anyone else experienced this and if so, did it get better?

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I understand your fears, as my dd 13 had a "feeding disorder" from infancy through age 6, then off and on till about age 9. So I totally get the fear of this, and seeing them so frail, etc. This is my non-pandas dd. That being said, she did have her tonsils out during this time as well, and I thought "how is she going to survive this, as she's rail thin as it is?" Well, right after the surgery---I mean on the way home from the hospital (and I swear it was from the drugs) she asked for a donut!!! This is a kid who gagged/vomited at many meals. So she hogged down the donut, but then the drugs wore off, and it was 2 solid weeks of minimal eating---even more minimal than before.

 

My grandfather was an ENT, and I know he used to say that day 5 was probably the worst day of the healing process. I remember 2 of my 3 kids having this happen. My ENT for them also said 5-7 days out there will be a "setback" and more pain. I had my tonsils out at age 16 and I vividly remember the pain! two weeks later I remember asking my mom if it would ever feel normal and not hurt again. But it did.

 

So I just want to let you know that you are at Day 5, and this is likely like hitting the bottom of the barrel for her---I hope and pray that's the case. But for a kid where eating is already an issue, I wouldn't expect things to go smooth with eating with pain thrown in.

 

I do get the frustration of trying to protect our kids from comments that would be so innocent to a "normal" kid. I remember my neighbor--when our girls were around 4 or 5---mine who had a major fear of eating and gagged most meals, and my neighbor sitting there with us and her daughter eating dinner telling her daughter to "eat your food" and "two more bites" while my dd was sitting there gagging. If I had said to eat a few more bites she would have puked! Then I had a friend's son say to me RIGHT IN FRONT OF dd7 (pitand kid with tics/ocd)---"you know, I don't really notice her tics much." They just don't get it, and it's innocent, but I also get the wanting to wring their neck part :ph34r:

 

I hope the tonsils out will be the one-step-back before you take many-steps-up!!

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kcdc3-

 

Is your daughter on antibiotics now? Was she on antibiotics pre-op or post-op? If not, my opinion is she needs to be on the asap. Three of my 4 PANDAS kids have had their tonsils and adenoids out. One of my kids had a flareup post-op day 2-3, then settled down. He was on antibiotics pre and post op, but I increased them the 1st few days. It seems like the trend with ENT's is to not use Antibiotics pre or intra or post op and this is really concerning for PANDAS children.

 

IF your child is on treatment dose of a good antibiotic and having an increase of symptoms it could be temporary, but I would err on the side of caution. IMO and experience, children with PANDAS absolutely need antibiotics, full strength pre and post tonsillectomy and adenoidectomy.

 

Colleen

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Yes, actually the ENT was very willing to use Antibiotics during surgery (Zith) and gave her a 10 day supply of suspension Biaxin due to her Mycoplasma co-infection after surgery. He did not use antibiotics pre-surgery. My other 2 children (non pandas DD age 8 and non pandas DS age 5) both have strep right now and my son has the flu on top of it. Maybe that is playing in a bit as well?

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It could be the anesthesia too... I know that my ds (mild pandas) who does not have any eating issues had a bad reaction and was just out of it, wouldn't eat lethargic, night terrors and the not eating had nothing to do with his throat hurting from the surgery.. but was from the anesthesia. They said it could take several weeks before he was himself again but fortunately exactly one week after the night terrors stopped and he was eating and just himself again.

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Four sick kids, AHHHHH. I think she is definitely responding to her siblings' strep and flu and trying to heal herself. I hope things get better soon. Last December, my DS took about 10 days post T&A to start to feel better. At 3 weeks his PANDAS/OCD had improved. He was good for about 3 weeks after returning to school, but things started to decline again.

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Sorry I missed this one - we must have been in CT when you posted. My dd11 had T/A in September 2009. We did not really see 'drastic' change, but we definitely saw change. She had not gained any weight over the last year at all - 4th grade growth spurt for a lot of girls and yes, she did go through that "I'm fat" issue. That year after T/A, she gained 10 pounds - yay!! We saw gradual but steady improvement in other symptoms as well (and I naively stopped posting here, thinking we were over the worst)... until she caught strep again in spring 2010, but that's another story involving immune deficiency.

I hope she is improving and you are starting to see positive changes.

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Update: Thanks to all of you for responding and giving some encouraging words. She is still not where I would hope she would be. She did start to eat a little more yesterday, but no where near what she needs to eat or drink. It is day 8 and so I'm going to continue to hang in there. Her OCD is really out of control right now and her eating disorder has ramped up. She is on 50 mg of Luvox and has been on that for about 7 weeks. I've seen her OCD get worse since starting that. I asked her pediatrician if I should wean her off and he said that I should hang in there. I'm not so sure about that. We tried Zoloft a few years ago and had the same reaction. I think I'm going to wean her off anyway.

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