T&A recovery time?

[Dedee]

Just to add our experience. My son was 11 when he had his T & A. He had awful pain and a long recovery. I gave both Ibuprophen and Liquid lortabl equivilant. He is a big kid so he had to have an adult dose. I think the surgeon thought one of the parents must be taking his pain meds because I had to call the office back and get more because he was taking so much. Gosh, I thought we would NEVER get through his recovery. He cried alot. But is was very sudden and he just turned the corner and was suddenly improving greatly every day. Once you get through this you will be very glad you did it. Hang in there girl.

 

Dedee

[bronxmom2]

Colleen-- he is taking 3.5ml twice per day in a solution that's 250mg/5ml suspension 100ml.

As a nurse I'm hoping you can interpret that.

 

But it sounds to me like he may be getting only half the dose you're recommending.

He weighs 55 pounds, if that makes a difference.

 

I am assuming he got IV antibiotics during the surgery, but I'm not sure.

 

Thanks so much!

[colleenrn]

Hi Bronxmom,

It looks like your son is getting the treatment dose. If he is taking 3.5ml/twice a day, he is getting 175ml twice a day, which is the treatment dose.

Hope he is doing a little better.

Colleen

[bronxmom2]

Thanks again, Colleen. I was actually able to google and decipher this myself yesterday evening and saw that he was indeed getting the treatment dose. It's amazing how you stop trusting the doctors and become an expert on this. (I had assumed it was the treatment dose, because it was the dose originally prescribed when he was sick with strep in December... but when I saw him raging and appearing paranoid, I got scrared that they'd been underprescribing it the whole time!)

 

Anyway, yesterday he was feeling much better, but he awoke in the middle of the night raging and in pain.

 

I am very nervous about this new, angry and defiant twist in his personality. I'm still hoping it's just frustration with the pain... but meanwhile, I am horribly sleep deprived and feel myself sinking into a terrible hopeless depression.

[kim]

bronxmom2,

 

Did you notice any change in mood when you stopped the tylenol or weren't you able to go without it for long enough? I sure liked EAMom's suggestion about getting the codein seperate from tylenol and using it with ibuprofin instead. Have you tried an epsom salt soak for him?

 

One thing that i clearly remember from my sons awful time with tonsils recovery, a friend stopped over with a gift bag for him with a big balloon attached. It had one of those little lego model kits, stickers, a puzzle book, a little lazer thingy, etc. He loved that stuff. It went a long way toward lifting his spirits (and mine).

 

You might try an good epsom salt bath too! Please try to relax and give this time. I remember a nurse/neighbor telling me that it is more normal than not for kids to have that kind of recovery from tonsil removal. She said a lot of parents just forget.

[kim]

double post edit

[bronxmom2]

Thanks Kim,

I'm so sleep deprived and distracted that I'm having a little trouble getting my mind around the problem with the tylenol. I'm sorry to be stupid, after all you've posted about this, but...Tylenol can trigger PANDAS stuff too? Will it go away after we stop using the tylenol with codeine? I don't think we'll need it more than a few days longer.

[EAMom]

Hi Bronxmom...if your son was on a SSRI I would say that could be contributing to the anger/defiance (PANDAS kids are very sensitive to SSRI's, it's easy to overdose them). But, since he's not, I would say it sure sounds like PANDAS.

 

If it that behavior continues, I would consider switching to Azithromycin...it gets intracellular strep and is anti-inflammatory/immune modulating.

 

Have you started the Pine Bark Extract yet?...that is supposed to lower dopamine and adrenaline which should (in theory) be good for a PANDAS child.

 

Kim...ditto Bronxmom's question about tylenol triggering PANDAS symptoms. Also, would this be a problem with short term use (1 week)?

[bronxmom2]

I just seems a little strange that a T&A could trigger new stuff like this, if that's what's happening. Good luck to me trying to convince his doctor of it! I will keep a very close eye on him while the pain is subsiding.

 

I have not started the pine bark extract yet, because at this point I can't get him to swallow much of ANYTHING. I think his throat needs to heal.

 

He was very very calm and poised and considerate, post-op, for the first three days (though in lots of pain)-- then this sudden shift. He got a prednisone shot during the surgery, so I'm wondering if the calm came from the steroid, then the anger when it wore off. Or something like that.

 

God... this is so complicated. I don't know what I'd do without this forum, though.

[colleenrn]

Bronxmom,

Does your son have bad reactions to red dyes? I am pretty sure the tylenol with codeine liquid has red#33 and red#40 in it. My kids went berserk (for lack of a better word) once when they were taking Keflex liquid with red dye. Maybe that is a possibility? If that is not it, I would agree with seeing about switching him to Azithromycin, even if it is for a few weeks, and then rethink putting him back on a cephalosporin or keeping him on Zithromax. Is his pain any better?

Colleen

[peglem]

I think the pain itself is something that can trigger an anger or rage episode. The body is designed to amp up for self defense when it is under attack. The pain itself could trigger a fight or flight response.

[kim]

Bronxmom,

Does your son have bad reactions to red dyes? I am pretty sure the tylenol with codeine liquid has red#33 and red#40 in it. My kids went berserk (for lack of a better word) once when they were taking Keflex liquid with red dye. Maybe that is a possibility? If that is not it, I would agree with seeing about switching him to Azithromycin, even if it is for a few weeks, and then rethink putting him back on a cephalosporin or keeping him on Zithromax. Is his pain any better?

 

 

Colleen thanks for the perfect intro to my response about tylenol!!! I was going to ask if anyone was a believer in the "dyes make my kids hyper" stuff. The idea behind that is that there is a problem with phenol sulfur-transferase. Good info on that here along with a lot of stuff that Carolyn N. posted on the TS board. http://www.enzymestuff.com/epsomsalts.htm

 

I want you guys to know that I'm reviewing a lot of this for about the hundreth time and understand a little more each time. I don't ever want it to appear that I have anything "all figured out!" Just a mom who struggles with a thousand concepts (jack of all trades and master of none.. comes to mind frequently) and tries to connect dots, even in my sleep. Who knows, maybe one day (10 years from now) i'll actually be able to come right out and say something that helps someone.

 

The short answer to the question of whether I think acetaminophen can have an affect with short term use is yes, in a individual who has a problem with sulfur metabolism in the first place. Just my humble opinion. I'm going to post some things that I think are very relavant and see if you guys see where I'm coming from. Keep in mind, part of what flipped me out about this was that I dosed my babies with tylenol prior to immunizations. So much of what I take info from is vax research and autoimmune disorders, it's really nice to see something like the NIH study that is looking at all of the stuff that you read about on DAN type forums. Bronxmom, I so agree with all of the remarks that have been made on this thread. This thing with acetaminiphen is only ONE possibility. I will try to post some more things specific to Sam e and mood issues. I just pulled articles that i though were easy reading. If you can just make it through the first two paragraph under the heading

 

A. BACKGROUND AND SIGNIFICANCE (near the top of article) I think you will pick up enough to understand why I think this is so significant. You will see the following words; methionine, S-adenosyl methionine (Sam Sam e) oligosaccharides and glutathione amongst others, but I think those are enough to start with. Don't forget N acetyl cysteine (NAC) is used for tylenol overdose. this study was using healthy subjects. BTW, Bronxmom, i don't expect you to even try to discuss any of this right now (or ever for that matter!)

but you might want to look at it at a later date if you see any correlation even with a different illness. When you're sleep deprived and worried about a sick child, this stuff would make you bonkers! This is just for general discussion or info, for anyone who wants to look at it

 

Study Has Emory University and NIH listed as Sponsors and Collaborators

 

Effect of Sulfur Amino Acid Depletion and Acetaminophen on Plasma Glutatione

 

http://clinicaltrials.gov/ct2/show/NCT00228644?show_desc=Y

 

http://en.wikipedia.org/wiki/Methionine

 

Methionine

 

This essential amino acid is classified as nonpolar. Together with cysteine, methionine is one of two sulfur-containing proteinogenic amino acids. Its derivative S-adenosyl methionine (SAM) serves as a methyl donor. Methionine is an intermediate in the biosynthesis of cysteine, carnitine, taurine, lecithin, phosphatidylcholine, and other phospholipids

 

http://www.raysahelian.com/glutathione.html

 

Glutathione busters

The frequent use of acetaminophen (Tylenol) depletes glutathione peroxidase levels.

 

 

http://arthritis.about.com/od/same/a/whatissame.htm

 

What Is SAM-e? (S-adenosylmethionine)

 

oligosaccharides These guys have particular interest to me (THE GLYCANS). Maybe we could discuss them at a different time, if anyone is still talking to me, lol!

 

http://en.wikipedia.org/wiki/Oligosaccharide

 

An oligosaccharide is a saccharide polymer containing a small number (typically three to ten[1]) of component sugars, also known as simple sugars. The name derived from the Greek oligos, meaning "a few".

 

They are generally found either O- or N-linked to compatible amino acid side chains in proteins or to lipid moieties (see glycans).

[bronxmom2]

Hi, I just wanted to let everyone know my son is feeling much better today. I was feeling good, actually, we had a good afternoon and he was super affectionate and sweet, so I went to sleep feeling much more optimistic, and today we were having a good day... then he had a meltdown when a playmate had to go home this afternoon and I am again worried.

 

Anyway we are done with the tylenol with codeine now-, hasn't had any since last night- from now on just dye-free ibuprofen-- it's scary to think of how many things can affect our kids-- anyway I KNOW the red #40 is a major culprit-- why don't they just outlaw that stuff????--

 

Thanks to you all for walking me through the last few days, it's been tough. It's horrible worrying this much about your kid. It's really affecting my marriage because my husband (not my son's father) thinks I am exaggerating the physical/medical aspect of all this. And his real father hardly ever calls.