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T&A recovery time?


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Hi, my son is in day 6 of his recovery from T&A and he's still in a LOT of pain... I am wondering if recovery time can be impacted by the state/size of the tonsils... or, if it's as I suspect, and my son's had a simmering strep infection for years, that could cause him to have a harder time recovering? I'm just wondering if PANDAS kids in general have a harder time recovering from T&A, since I've read about a few difficult recoveries here.

 

He hasn't bled and has no fever, so the doctors I spoke to are not worried.

 

My husband is worried that the long-term antibiotics he's been on this winter have compromised his immune system. I don't know what to say to that.

 

I'm taking him to see his pediatrician tomorrow, and I'm afraid the guys gonna get really mad at me... I went against his advice and switched my son from amixicillin (which wasn't doing anything) back to cefdinir... my son was getting really crazy on the amox. and I just needed to do something... I think I did the right thing but I'll be nervous to see the guy tomorrow. I need more Cefdinir. I think it's more important than ever to continue now, post T&A, right?

 

Meanwhile, here's my poor beautiful son, moaning on the bed, with a compromised immune system, and I did it all to him!

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Bronxmom,

 

I think you are doing all the RIGHT things for your son. Try not to be hard on yourself! Two of my kids hada A T & A (I posted to you about them). They both had enormous and cryptic tonsils. They did much better post T and A. I think it is possible that PANDAS kids have a more difficult recovery time.

 

What are you giving him for pain relief? Hopefully they gave you something like Tylenol with codeine. Reguar tyelenol or ibuprofen will not cut it. Suggestions for pain relief (besides good pain meds) are an ice collar (you can make it just with a ziplock big bag of ice- put a thin cloth between his neck and the ice). This definitely helped one of my children (did not know to do it with my first). Lots and lots of cool fluids, popsicles. Only let him eat very soft, bland foods.

 

As far as continuing antibiotics- yes, definitely! Cefdinir or any other cephalosporin would be good. Did another doctor give you the cefdinir? I would not worry at all about your pediatrician being mad you switched him off Amox to Cefdinir. IMO, you were smart to make this switch. Just explain your reasons and tell him you wish to continue on the cefdinir.

 

If I think of any other pain relief tips I will post. Please ask me questions if they come up. If I remember correctly, it was a solid 7-8 days before the pain got better. The first week, I gave them tyelenol with codeine every 4 hours when they were awake. For both children, my doctor gave me a refill (so each child went through to botles of liquid tyelenol with codeine)

Good luck and hang in there!!

Colleen

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Ha ha...colleen...Kim and I just told Bronxmom2 to switch from the tylenol/codeine to Ibuprofen. Kim was worried about sulfer depletion (I'm not up on that)...I thought Ibuprofen would be better b/c it is anti-inflammatory (plus, I'm personally biased against codeine, it makes me woozy and makes me barf)

 

Aside from Kim's sulfer concerns...is there any reason you couldn't do tylenol/codeine with Ibuprofen (since ibuprofen is an NSAID but tylenol is not)....I don't believe it's contraindicated to do both together.

 

Also, I know Diana's son had pred post T/A (acting like a steroid burst)...maybe she will post with more info. (I would think you don't want to do a steroid with an NSAID though.)

 

I don't know about long term abs compromising someone's immune system. The immunologist we just saw didn't think keeping my dd on abs long term was a problem...he felt peds/other in the medical community have gone overboard in their fear of overusing abs. I think there may be something detrimental about using a lot of abs in an infant (up to 12-18mo), when their immune system is developing (hygeine hypothesis http://www.medscape.com/viewarticle/420357 ), but not in an older child. The below is from the link:

 

An Animal Model of the Hygiene Hypothesis

Recent epidemiologic studies suggest that antibiotic use in infancy may be associated with an increased risk of the subsequent development of atopy. It is postulated that antibiotics deplete gastrointestinal tract bacteria, which normally suppress Th2 responses. Thus, antibiotics administered during a critical time in infancy (at the time of Th2 to Th1 immune deviation) are hypothesized to promote Th2 responses. In mouse models, the administration of the antibiotic kanamycin increases Th2 responses as evidenced by increased immunoglobulin E (IgE), increased IL-4, reduced IFN-gamma, and enhanced eosinophilic airway responses to inhaled allergen.[7,8] These results suggested that antibiotic use during infancy may prevent postnatal Th1 cell maturation, thus resulting in a Th2-polarized immune deviation.

 

Bronxmom2, I think you mentioned you have a baby at home as well. One thing I would do is start him on probiotics (and also not be too paranoid about exposing him to dirt, animals, minor illness)...give his immune system something to do while it is developing.

 

This is a good article re the hygeine hypothesis and allergy/autoimmune dz/autism. http://www.grc.nia.nih.gov/branches/rrb/dna/pubs/aaihh.pdf

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There is nothing wrong at all with giving ibuprofen along with the tyelenol with codeine and I did that with my kids. The reason I didi not suggest it to Bronxmom was b/c it can slightly increase the risk of bleeding and I did not want to suggest it b/c of that.

 

I think if he is in a lot of pain six days postop, which it sounds like he is, the temporary use of Tyelenol with codeine is needed.

Colleen

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Hi, my son is in day 6 of his recovery from T&A and he's still in a LOT of pain... I am wondering if recovery time can be impacted by the state/size of the tonsils... or, if it's as I suspect, and my son's had a simmering strep infection for years, that could cause him to have a harder time recovering? I'm just wondering if PANDAS kids in general have a harder time recovering from T&A, since I've read about a few difficult recoveries here.

 

He hasn't bled and has no fever, so the doctors I spoke to are not worried.

 

My husband is worried that the long-term antibiotics he's been on this winter have compromised his immune system. I don't know what to say to that.

 

I'm taking him to see his pediatrician tomorrow, and I'm afraid the guys gonna get really mad at me... I went against his advice and switched my son from amixicillin (which wasn't doing anything) back to cefdinir... my son was getting really crazy on the amox. and I just needed to do something... I think I did the right thing but I'll be nervous to see the guy tomorrow. I need more Cefdinir. I think it's more important than ever to continue now, post T&A, right?

 

Meanwhile, here's my poor beautiful son, moaning on the bed, with a compromised immune system, and I did it all to him!

 

 

My son had his tonsills out when he was 5 his recovery went great But my BF child took 2 weeks to recover I think every kid is different I dont know about the antibiotic part but Im sure your giving him the best care It sound like hes a trooper I hate when they dont feel good It makes you feel hopeless Good Luck and Ill keep you in my thoughts and prayers

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Hey guys,

Yeah, I had enough sense to go back to the tylenol with codeine when I saw that his pain was becoming unmanageable. I guess I'll try giving him both. I wish they had motrin with codeine.

 

I guess I'm still trying to understand the long-term affect of the abs on the immune system (if there is one) and why doctors are so fearful. I really need to understand this.

 

Regarding the developing immune system of the infant: I've always been a big one for allowing my babies to get really dirty outside, in the playground, etc. There was a recent article in the NYTimes about the importance to babies of exposure to dirt and worms (it's the evolutionary basis for why babies put everything in their mouths)--- but I did this for my PANDAS boy too...

 

Thanks... everyone I've spoke to assures me he'll come through this soon.

 

An additional thing... maybe the pain is just making him really angry, or the experience is triggering something... but he just seems very angry, particularly toward his stepfather. Every time my husband goes near him, my son just bristles and turns away and says, "I'm really mad at you and I don't know why!"

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An additional thing... maybe the pain is just making him really angry, or the experience is triggering something... but he just seems very angry, particularly toward his stepfather. Every time my husband goes near him, my son just bristles and turns away and says, "I'm really mad at you and I don't know why!"

 

Bronxmom2...that anger sounds PANDAS-ish to me.

 

re abs...IMO...I think peds/other docs are fearful of longterm antibiotics b/c that's what they have been taught. I'm not aware of any actual research to document significant problems with an individual being with long term abs. Even if there was a problem, I doubt it would outweigh the risks of PANDAS. I almost believe it is one of those urban legends...like how everyone was saying "you need to drink 8 glasses of water each day" which ended up being unfounded.

 

Maybe if you run into one of those docs that is fearful of longterm abs you could ask them to provide research/documentation that addresses these concerns.

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Yeah, I know, it seemed PANDA-ish to me, too... but since he's also in terrible pain, which could make someone really cranky, I'm going to let that subside and see if the anger remains when the pain is gone.

 

He was acting strange last night, too... kept saying we were making him "nervous" by "crowding" him when we were sitting by his bed... then when I tried to sooth him and told him I was giving him "cartoon therapy", he got very agitated and started saying "but cartoons are bad for you, cartoons are bad for you" over and over.

 

Ugh.

 

I wonder if something can happen, like antibodies can be released in his system when infected tonsils are removed???

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I can think of 2 things that might be going on:

 

1) I understand that stress (epinephrine/adrenaline) can open up the blood brain barrier allowing anti-bodies etc. to enter

 

2) Also, with our dd, tooth extraction allowed strep (we didn't know she was culture positive at the time) from her throat to enter the bloodstream causing a big ramp in PANDAS symtpoms. (This is along the lines of why they want someone with rheumatic fever/heart problems to be on abs during a dental procedure...) I would guess there could also be a similar thing (break down of epitheleal barrier) causing strep to enter the bloodstream during tonsil surgery. I would think this wouldn't be a big issue if he were on antibiotics though?

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Here's a link about stress and the blood brain barrier:

 

http://findarticles.com/p/articles/mi_m120...150/ai_18976941

 

So it makes sense that a stressful event may exacerbate PANDAS symptoms...more "bad strep stuff" (anti-bodies and/or toxins) get through to the brain. It probably becomes a viscious cycle b/c PANDAS causes it's own (further) stress.

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BronxsMom2,

 

My oldest son had sooo much pain after his tonsils were removed, it really caught me off guard. I know what you're going thru. We have a consult with oral surgeon for wisdom teeth in April and I'm trying not to freak out. Pain management is part of that anxiety. I'm sure many kids can handle acetaminophen and ibuprofin and even alternating (i did this with oldest). For my youngest son, I think it could spell trouble quickly. Anyway, this is a post that i started last night....

 

 

 

The articles in the first two pages of this search will tell you just about everything that you need to know about the effects of acetaminophen. There are things that you can do to minimize negative effects with long term use. Foods you can encourage, supplements that can be helpful etc.(foods containing sulfur, glycine, glutathione cream, b vits, epsom salt baths and others) We do NOT glutathione levels reduced! (motrin can do this too, but i think stores are recoverable when it's not dosed continuously, like i needed to do with my son's T&A, for something like 10 days. I feel my sons are metabolically sensitive to begin with, with youngest almost certainly having some sulfatation issues. Just wished I would have known about this as I was liberally alternating ty+coedine and motrin, for such a long period. My youngest son has a self inflicted protein restricted diet (no meat what so ever, no milk, no eggs) so this is something that I really need to pay attention to, when it comes to pain management. The statement in the AAP article about no studies on alternating, raised my blood pressure a bit.

 

http://www.google.com/search?q=tylenol+dep...tart=0&sa=N

 

 

 

http://ajpendo.physiology.org/cgi/content/full/278/5/E868

 

Oxoproline kinetics and oxoproline urinary excretion during glycine- or sulfur amino acid-free diets in humans

 

 

L-5-oxoproline (L-5-OP) is an intermediate in glutathione synthesis, possibly limited by cysteine availability. Urinary 5-OP excretion has been proposed as a measure of glycine availability. We investigated whether 5 days of dietary sulfur amino acid (SAA-free) or glycine (Gly-free) restriction affects plasma kinetics of 5-OP and urinary excretion of L- and D-5-OP in 6 healthy men.

 

 

Acetaminophen administration depletes the kidney GSH and cysteine contents in a dose- and time-dependent manner in growing and mature mice. Recovery to near control values was seen by 24 h after administration (42). During high anion gap metabolic acidosis and intake of therapeutic doses of acetaminophen, transient L-5-oxoprolinuria (600-23,600 µmol/mmol creatinine) was observed in patients. The level returned to a reference range (<70 µmol/mmol creatinine) after metabolic acidosis disappeared (38). This indicates that acetaminophen intake and/or metabolic acidosis may lead to depletion of tissue GSH, which affects L-5-OP excretion. Our clinical records indicate that two of the "high" excretors were given acetaminophen for headaches on day 3 of the dietary control period but felt well the next day and did not continue any medication during the remainder of the study. No increase of urinary L-5-OP excretion was seen in these subjects between day 3 and day 5 of the control dietary period.

 

The abstracts at the end are helpful

 

http://aappolicy.aappublications.org/cgi/c...rics;108/4/1020

 

POLICY STATEMENT

 

PEDIATRICS Vol. 108 No. 4 October 2001, pp. 1020-1024

 

AMERICAN ACADEMY OF PEDIATRICS:

Acetaminophen Toxicity in Children

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They do make a product that is Ibuprofen w/codeine (instead of tylenol with codeine) http://en.wikipedia.org/wiki/Nurofen_Plus I don't know if it is readily available or if it would be a special order, although the Walgreens by us usually can have things the next day.

 

You should also be able to get Codeine plain (no tylenol)...which might be preferable (if your son doesn't mind taking the extra pill) so you can dose the Ibuprofen separately.

 

I really like Ibuprofen b/c I feel it also helps with PANDAS symptoms a bit (anti-inflammatory effects on the brain). I just put my dd back on it (per the recommendation of an immunologist) on a once daily basis (he felt 1x day would be safe long term). Short term, IMO 3x daily would be safe.

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Bronxmom-

Is he on a treatment dose of cefdinir? The anger could be irritability b/c of pain, but I agree that it sounds PANDA-ish to me, also along with the cartoon and crowding statements.

I think that when you remove infected tonsils and adenoids, some strep does get "released", so just make sure he is getting a full dose of Cefdinir and not a porphylactic dose (7mg/kg twice per day OR 14mg/kg once per day).

 

Did he get any IV antibiotics during surgery?

Colleen

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