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Posted

(Deep breath)

 

Help me out here.

 

DS is being treated prophylactically for meningitis. He is improving, but he was very ill yesterday. This happened suddenly, and I didn't ask all the questions I wish I'd asked. We see the doc again tomorrow, and I'd like to have my head together better. Yesterday I was shocked and worried, and frankly I expected a strep test and a z-pack. But his appt got serious fast.

 

Yesterday, at 4 am, DS woke me. He was ill, running a high fever (by touch, we are in a hotel while work is done on our house). Headache, joint pain, body aches, sore throat, nausea. He has been spending time with a family that has been passing something around for two weeks, so I wasn't surprised. I gave him advil. By lunchtime, when we had a thermometer, his temp was spiking to 102, and his neck was stiff. I took him to an urgent care. They did bloodwork on the spot, his WBC was over 14,000, but everything else was negative. Strep, flu, mono. They ran a test for meningitis, and were sure it would come back positive (I don't know what test they ran). Clinically, they (the doc brought in another, so there were two docs working with us) had done quite a few physical tests, and felt sure there was spinal involvement. The test was negative. He did have a double ear infection, so they decided to treat that, and prophylactically for meningitis.

He improved quickly yesterday, and as of today he is much better. Advil keeps the head and neck pain down, and his temp is staying in the 100 range. He looks so much better. They sent us home with specific instructions re: when to go to the er, and with an appt for a follow up in 48 hours.

 

I'll admit it: I didn't even know meningitis could be treated at home. I really don't know much about it, and reading is making me paranoid.

 

He's obviously improving, which makes me think whatever is going on is bacterial.

 

One friend has the same symptoms. Hers started six hours before his, progressed in the same way, and she's being treated for strep despite a negative strep test (her doc didn't discuss meningitis) with the same antibiotics. She's improved exactly the same way DS has. It's remarkable, the similarity.

 

I think they were exposed at the same time. Which would mean Saturday. We also had the family who's been passing germs around over that day, though three of the six kids stayed home sick. None of those kids has been treated, but I have told their mom what's going on with DS and the other friend. Is it possible that DS and his friend reacted differently to this bug than this family's kids? Do I need to worry that they'll give it to him again if they don't all go on abx?!? That seems crazy, but - meningitis. I never want to see my kid that sick again.

 

Is there anything I should ask the doc tomorrow? This isn't our usual doc, though we've seen him before at the urgent care.

  • Like 1
Posted

How scary!  Did he have a spinal tap?  I thought that was the only accurate test, but I may be wrong.  My daughter had to have a spinal tap as a toddler once when they suspected meningitis.   My son had periorbital cellulitis once, and the doctor really scared me by saying that if we had waited much longer, it would have gone to his brain.  It came so fast.  We went into the grocery store and he seemed okay, and by the time we were in line he was burning up.  I took him to the ER soon after that.

 

I don't really know much more about it, but I'd think that as long as he is still taking antibiotics, he'd be protected.  It sounds like they did exactly what they were supposed to do.

 

Glad he's so much better, and so quickly!  Thank goodness!

  • Like 2
Posted

I think you need to start with the understanding that meningitis is more of a term for a condition than a single disease. So it's an infection of the tissue that covers the brain & spinal cord. But it can be viral or bacterial or even fungal. There are a number of organisms that can cause the condition so I can understand that from their perspective even if a test came back negative, it might not be a test that would catch all the possible causes... 

I think definitely people can react quite differently to the same bacteria or virus. In one person it might cause a minor illness & in another it can trigger much more serious symptoms. 

It's good that your son is improving. I hope he continues on that trajectory & is back to 100% very soon. 

 

  • Like 6
Posted

No experience, and the cases of it I've personally known about had quite negative outcomes of which I will spare you from my telling.

 

What a scary ordeal you've been through! It is a good sign that your ds is improving and your doctor was proactive. Keep us posted!

Posted

Did they tell you what kind of meningitis it is?

 

There are different types of meningitis.  Some are super serious and others are not.  I had it when I was infected with the cocksakie virus.  I wasn't given any antibiotics because it wouldn't have helped.  I was told to go to bed and it would get better.  It wasn't the worst I have ever felt in my life (I had mono and hepatitis in college, that was worse) but it was the second worst I have ever felt.

 

All I wanted to do was sleep in a dark room.

 

I got better in about four days, with only one and a half days being really terrible.

  • Like 1
Posted (edited)

J-Rap, no spinal tap, they did the bloodwork and clinical tests, and decided to treat prophylactically. And he's improving, but that doesn't give me a definitive diagnosis either. They felt that it was likely meningitis, but since he was capable of sitting up and talking (to an extent), his light sensitivity was not extreme, and his neck was stiff but not rigid - they were ok with sending us home with antibiotics rather than to the hospital. They went over the signs that I should go straight to the ER several times though, and stressed the importance of a follow up for further bloodwork in 48 hours.

 

I think you need to start with the understanding that meningitis is more of a term for a condition than a single disease. So it's an infection of the tissue that covers the brain & spinal cord. But it can be viral or bacterial or even fungal. There are a number of organisms that can cause the condition so I can understand that from their perspective even if a test came back negative, it might not be a test that would catch all the possible causes...

 

 

Ah. Thank you for that. I knew it, but needed to hear it stated that way.

 

I think they had enough info to know that there was spinal involvement, and so they treated with the most reasonable at-home first-line defense. And gave me a contingency plan in case it wasn't effective. Thank goodness it seems to be working.

 

The parent of the kids that have all been passing something around has been very concerned that I don't have a definite answer re: the cause of his condition. And I started feeling I'd missed asking something important, or should have insisted on a spinal tap. I understand her concern. As of tonight she's got two kids with similar symptoms - though not all of the symptoms that my son had. If I could choose for her, I'd run them all to the doc. But clearly all I can do is pass on the info and hope no one gets sicker, or passes it along again when DS is over it. I have let all of DS's friends' parents know about him, so they can watch for symptoms.

 

This has been a nightmare, really. We're in a hotel. Very sick child. My mom was having surgery at the same time this was happening. I'm ready for a break!

Edited by Spryte
Posted (edited)

redsquirrel, I'm glad you got better. DS told me that morning that he felt like he had the Plague. :(

 

Oh, and no - they didn't say what type of meningitis. I suspect bacterial as it's clearly responded to the antibiotics.

Edited by Spryte
Posted

redsquirrel, I'm glad you got better. DS told me that morning that he felt like he had the Plague. :(

 

Oh, and no - they didn't say what type of meningitis. I suspect bacterial as it's clearly responded to the antibiotics.

 

I felt like I'd been hit by a f'ing garbage truck.  My head...the worst headache imaginable. I couldn't even glance down to my feet or I felt like I was hit in the head with a shovel. I couldn't turn my head

 

Dark really helped.  I had a pillow over my head to keep out the light.

 

I can't imagine being in a hotel room and your mom being ill.  I am so, so sorry.

 

  • Like 2
Posted (edited)

I felt like I'd been hit by a f'ing garbage truck. My head...the worst headache imaginable. I couldn't even glance down to my feet or I felt like I was hit in the head with a shovel. I couldn't turn my head

 

Dark really helped. I had a pillow over my head to keep out the light.

 

I can't imagine being in a hotel room and your mom being ill. I am so, so sorry.

I'm going to share your description with him. The headache, poor guy. And his whole body hurts. He's been miserable. And his eyes - they are just glassy. Or were. I knew he was better when he asked to play minecraft. :)

 

We actually snuck back to our house last night so he could sleep in his own bed. He desperately wanted to be home. Well, we didn't actually sneak, I told the lead contractor. We just holed up upstairs since all the work is happening downstairs. But we're back in the hotel now - the work tomorrow will be too loud.

Edited by Spryte
  • Like 1
Posted

-An LP (aka spinal tap) is the diagnostic test for meningitis.  I'm not sure what urgent care was doing but if it wasn't that then I think they were a bit confused, or dishonest, or perhaps a bit of both.

-Yes meningitis can also be caused by viruses, or fungi, in addition to bacteria.  In some cases of viral meningitis we do not have a specific anti-viral (like we do for HSV etc) so there isn't a treatment per se although patients with viral meningitis may still benefit from closer inpatient monitoring and supportive care (including ICU and mechanical ventilation in some cases). This is a bit of clinical decision (and in reality many of these cases may get admitted and started on antibiotics while awaiting cultures even if the differential looks viral and that is not necessarily wrong either). In the case of fungal and bacterial meningitis we do have antibiotics and antifungals that can be used to treat the infection. In order to get the antibiotics or antifungals across the blood brain barrier to treat the infection high doses (ie meningitic dosing) of  IV antimicrobials are needed and usually for significant courses of ten days (or longer depending on the organism involved and response). If your son truly has bacterial meningitis he needs to be in a hospital receiving IV antibiotics.

-You can end up with partially treated meningitis where someone is given oral antibiotics to treat another infection. The oral antibiotics won't be sufficient to treat the meningitis so patients may present somewhat more subacutely and perhaps less toxic. 

-Prophylaxis for meningitis is only relevant in cases where there has been significant exposure to a patient with known H. flu (in certain clinical populations) or N. meningitidis. There are accepted oral/IM prophylactic regimens endorsed by CDC. 

 

 

Is your son feeling better?  If not, I would definitely have him re-evaluated, ideally in a non urgent care setting? Honestly, with the caveat that perhaps all of this was better explained to you than is coming across and you feel more comfortable and trusting of the physicians (or perhaps PA or NP) than I am getting reading between the lines, I would have my child re-evaluated by a physician I trusted. I would also be curious if they at least did blood cultures before starting antibiotics at urgent care? If so, have you had any follow up on the cultures? If he is bacteremic then oral antibiotics are unlikely to completely resolve the infection. I hope you get to the bottom of this and your son gets better quickly.

 

  • Like 5
Posted

My husband had bacterial meningitis (confirmed by lumbar puncture) a few years ago... He was completely miserable and wound up in the hospital. Not too long thereafter he wound up having really bad back problems--a tear & herniation in the disk where the puncture was. He couldn't walk or sit or really do much of anything (and stayed home from work) for around 6 weeks... The surgeon he consulted with said that it was unrelated, but we've always been skeptical. Was a tough time...I was pregnant with our fourth.

  • Like 1
Posted

He is significantly better. Still taking Motrin every 6 hours, he has a sore throat when it wears off and doesn't feel particularly well, but clearly better. He went back to the same doc today, and his WBC is down to the high end of the normal range.

 

I was feeling fairly good about it, though now I'm concerned about partially treated meningitis. He did not have an LP. They treated based on a positive Brudzinski's sign, plus clinical symptoms. The cultures they ran at the clinic, at the time of his appt were all negative.

 

He's on a z-pack. Today was the third dose. If the treatment is inadequate, will symptoms return the same way? What should I watch for?

 

This isn't his regular doc, it's an urgent care, but they also do primary care there. We moved, and haven't found a new doc yet. To complicate that, his old pedi is no longer practicing, as of last month. :( I could take him to my own doc, who has seen him several times over the years, and knows him. It's a drive, but she's very good. Or I could call his allergist/immunologist who is currently running blood work to see if he has a compromised immune system.

Posted (edited)

-An LP (aka spinal tap) is the diagnostic test for meningitis. I'm not sure what urgent care was doing but if it wasn't that then I think they were a bit confused, or dishonest, or perhaps a bit of both.

-Yes meningitis can also be caused by viruses, or fungi, in addition to bacteria. In some cases of viral meningitis we do not have a specific anti-viral (like we do for HSV etc) so there isn't a treatment per se although patients with viral meningitis may still benefit from closer inpatient monitoring and supportive care (including ICU and mechanical ventilation in some cases). This is a bit of clinical decision (and in reality many of these cases may get admitted and started on antibiotics while awaiting cultures even if the differential looks viral and that is not necessarily wrong either). In the case of fungal and bacterial meningitis we do have antibiotics and antifungals that can be used to treat the infection. In order to get the antibiotics or antifungals across the blood brain barrier to treat the infection high doses (ie meningitic dosing) of IV antimicrobials are needed and usually for significant courses of ten days (or longer depending on the organism involved and response). If your son truly has bacterial meningitis he needs to be in a hospital receiving IV antibiotics.

-You can end up with partially treated meningitis where someone is given oral antibiotics to treat another infection. The oral antibiotics won't be sufficient to treat the meningitis so patients may present somewhat more subacutely and perhaps less toxic.

-Prophylaxis for meningitis is only relevant in cases where there has been significant exposure to a patient with known H. flu (in certain clinical populations) or N. meningitidis. There are accepted oral/IM prophylactic regimens endorsed by CDC.

 

 

Is your son feeling better? If not, I would definitely have him re-evaluated, ideally in a non urgent care setting? Honestly, with the caveat that perhaps all of this was better explained to you than is coming across and you feel more comfortable and trusting of the physicians (or perhaps PA or NP) than I am getting reading between the lines, I would have my child re-evaluated by a physician I trusted. I would also be curious if they at least did blood cultures before starting antibiotics at urgent care? If so, have you had any follow up on the cultures? If he is bacteremic then oral antibiotics are unlikely to completely resolve the infection. I hope you get to the bottom of this and your son gets better quickly.

LMV, thanks. I responded to you in the post above this, but forgot to quote, so you'd see it. Oops. It's right above this one.

 

One other thought: a friend was diagnosed today with strep. I am wondering if this might be strep, mislabeled. His rapid strep test was neg, but they didn't send off a culture. But would that cause a positive Brudzinski's sign (spelling?)?

 

He is definitely improving, I'm not sure if I should do anything differently at this point?

Edited by Spryte
Posted

He is significantly better. Still taking Motrin every 6 hours, he has a sore throat when it wears off and doesn't feel particularly well, but clearly better. He went back to the same doc today, and his WBC is down to the high end of the normal range.

 

I was feeling fairly good about it, though now I'm concerned about partially treated meningitis. He did not have an LP. They treated based on a positive Brudzinski's sign, plus clinical symptoms. The cultures they ran at the clinic, at the time of his appt were all negative.

 

He's on a z-pack. Today was the third dose. If the treatment is inadequate, will symptoms return the same way? What should I watch for?

 

This isn't his regular doc, it's an urgent care, but they also do primary care there. We moved, and haven't found a new doc yet. To complicate that, his old pedi is no longer practicing, as of last month. :( I could take him to my own doc, who has seen him several times over the years, and knows him. It's a drive, but she's very good. Or I could call his allergist/immunologist who is currently running blood work to see if he has a compromised immune system.

 

**None of this is intended as medical advice.  Medical advice should only come from physicians in real time who have the opportunity to examine the patient.**

 

Ok I'm sure that there are some decent urgent cares out there somewhere (perhaps just nowhere near any ED I've ever worked in) but the bolded definitely doesn't score any points for the particular urgent care you had the misfortune to end up in.

 

You really can't diagnose meningitis without an LP.  Yeah, I'd agree that any kid with either a kernig or brudzinski sign is meningitic but what that means is that they need definitive care which involves transfer to somewhere where they can get an LP, IV antibiotics, and then be admitted for further treatment. Your urgent care kind of missed all the points there.  They didn't proceed to make the diagnosis (or eliminate it) and they didn't provide adequate treatment, and honestly, I think they gave you erroneous information which didn't put you in any kind of good position to be able to make appropriate decisions for your kid.  I'm really sorry about all of that.

 

So now you're stuck because if you knew your kid had bacterial meningitis then you and any other properly informed parent would demand nothing less than 10 days of IV antibiotics (and in some cases with some bacteria you should demand more than that).  But you don't know that your kid does so you kind of feel like what do I do.  You also don't know your kid doesn't because perhaps they actually made the correct diagnosis even if they missed the day of medical school (or maybe NP or PA school because I guess I'm in a bit of denial that a licensed physician would be quite so negligent) where it was stressed quite clearly that oral antibiotics are not appropriate for treating meningitis.  If I was a betting person I suppose that I might lean in the direction that it wasn't meningitis because they aren't worsening in spite of inappropriate treatment. The round the clock NSAIDs may be confounding the picture as well.  The problem with all of this is that I never bet with patient's (or my own children's) lives. The stakes are just too high.  So I guess I'll tell you if you and your child ended up in our ED when I was working and gave me this whole story I'd order a meningitic dose of Vancomycin and Ceftriaxone and a Head CT. If the CT scan said it was safe to do the LP then I'd do it and we'd go from there.  If the tap shows no cells then it isn't meningitis and we've ruled that out.  If the tap looks like partially treated meningitis then we probably aren't going to get much on the cultures (although sometimes we do, and sometimes bacterial antigen testing can be helpful) we would admit for IV antibiotics and the poor pediatrician on call would get to figure out how long to treat if they didn't end up with any culture data to guide that.

 

As far as the Strep scenario--no, unless you somehow have Strep pyogenes meningitis (and I've never seen that clinically) you shouldn't have meningitic signs with that.  Now I suppose I can see a scenario where a kid who just generally felt crummy and a physician/NP/PA who was not particularly skilled with diagnosis might misinterpret some of that as a Brudzinski but otherwise no.  I was under the impression that the strep "diagnosis" was also made in a kid who did not test positive for strep so perhaps that is not the correct diagnosis either.  (Although maybe I'm missing that and if the friend actually had a positive rapid strep or a culture then please strike that last statement). Generally rapid strep tests will pick up about 95% of cases. We're sending cultures for the 5% that the rapid test will miss.

 

I'm really sorry you are in this situation. 

  • Like 3
Posted

**None of this is intended as medical advice. Medical advice should only come from physicians in real time who have the opportunity to examine the patient.**

 

Ok I'm sure that there are some decent urgent cares out there somewhere (perhaps just nowhere near any ED I've ever worked in) but the bolded definitely doesn't score any points for the particular urgent care you had the misfortune to end up in.

 

You really can't diagnose meningitis without an LP. Yeah, I'd agree that any kid with either a kernig or brudzinski sign is meningitic but what that means is that they need definitive care which involves transfer to somewhere where they can get an LP, IV antibiotics, and then be admitted for further treatment. Your urgent care kind of missed all the points there. They didn't proceed to make the diagnosis (or eliminate it) and they didn't provide adequate treatment, and honestly, I think they gave you erroneous information which didn't put you in any kind of good position to be able to make appropriate decisions for your kid. I'm really sorry about all of that.

 

So now you're stuck because if you knew your kid had bacterial meningitis then you and any other properly informed parent would demand nothing less than 10 days of IV antibiotics (and in some cases with some bacteria you should demand more than that). But you don't know that your kid does so you kind of feel like what do I do. You also don't know your kid doesn't because perhaps they actually made the correct diagnosis even if they missed the day of medical school (or maybe NP or PA school because I guess I'm in a bit of denial that a licensed physician would be quite so negligent) where it was stressed quite clearly that oral antibiotics are not appropriate for treating meningitis. If I was a betting person I suppose that I might lean in the direction that it wasn't meningitis because they aren't worsening in spite of inappropriate treatment. The round the clock NSAIDs may be confounding the picture as well. The problem with all of this is that I never bet with patient's (or my own children's) lives. The stakes are just too high. So I guess I'll tell you if you and your child ended up in our ED when I was working and gave me this whole story I'd order a meningitic dose of Vancomycin and Ceftriaxone and a Head CT. If the CT scan said it was safe to do the LP then I'd do it and we'd go from there. If the tap shows no cells then it isn't meningitis and we've ruled that out. If the tap looks like partially treated meningitis then we probably aren't going to get much on the cultures (although sometimes we do, and sometimes bacterial antigen testing can be helpful) we would admit for IV antibiotics and the poor pediatrician on call would get to figure out how long to treat if they didn't end up with any culture data to guide that.

 

As far as the Strep scenario--no, unless you somehow have Strep pyogenes meningitis (and I've never seen that clinically) you shouldn't have meningitic signs with that. Now I suppose I can see a scenario where a kid who just generally felt crummy and a physician/NP/PA who was not particularly skilled with diagnosis might misinterpret some of that as a Brudzinski but otherwise no. I was under the impression that the strep "diagnosis" was also made in a kid who did not test positive for strep so perhaps that is not the correct diagnosis either. (Although maybe I'm missing that and if the friend actually had a positive rapid strep or a culture then please strike that last statement). Generally rapid strep tests will pick up about 95% of cases. We're sending cultures for the 5% that the rapid test will miss.

 

I'm really sorry you are in this situation.

Thank you.

 

So, if you were in my shoes, or if your long distance sister was, what would you suggest or tell her to do? Would a trip to an ER tomorrow, just to get another doc's input here be out of line?

 

He has an appt scheduled with a new doc, for a well visit, on Thurs, but I don't want to wait that long if this is problematic. Nor does it seem like an appropriate topic at a new patient well visit.

 

Oh, and yes - your feeling was right on the strep. The friend with his exact symptoms was being treated for strep despite a negative test. Another friend, whose entire family of 6 kids has been sick on/off for 2 1/2 weeks was actually diagnosed with strep today. So there are a lot of different things going on with the group of kids he knows.

Posted

Thank you.

 

So, if you were in my shoes, or if your long distance sister was, what would you suggest or tell her to do? Would a trip to an ER tomorrow, just to get another doc's input here be out of line?

 

He has an appt scheduled with a new doc, for a well visit, on Thurs, but I don't want to wait that long if this is problematic. Nor does it seem like an appropriate topic at a new patient well visit.

 

Oh, and yes - your feeling was right on the strep. The friend with his exact symptoms was being treated for strep despite a negative test. Another friend, whose entire family of 6 kids has been sick on/off for 2 1/2 weeks was actually diagnosed with strep today. So there are a lot of different things going on with the group of kids he knows.

 

This is hard for me to answer because we're blessed to have this really awesome pediatrician who sees our kids (unless she thinks they probably really need to go to the ED and then we do that) but I guess if I was in this situation then, yes, I would take my kid to the ED and I would let them do the LP.  What you aren't going to want to hear is that if I was doing that I'd probably do that tonight (and, yeah, I know that in the event that this is some random viral syndrome then why? but the reason I wouldn't be able to not do that is because of the what if it isn't if that makes sense.

  • Like 1
Posted

I've known a couple people with meningitis and they all required hospitalization. I wouldn't be comfortable thinking he had it and doing at home treatment. I'd take my child to the ER for a more definitive diagnosis.

  • Like 2
Posted

Ok, so I just wanted to update ... We did go to the ER. We shared the whole convoluted saga with a doc there, who totally got our concerns, and that they were exacerbated by not having enough data. It helped to hear that she uses that same urgent care for her own kids, and knew the doc that diagnosed/treated initially. She did say, "that sounds horrible" to the way it played out (specifically to the z-pack Rx) and understood that at the appt time I didn't know what to ask.

 

So - as of right now, he's been improving for three days. She doesn't think the z-pack would have covered bacterial meningitis, she thinks this would have played out differently had it been bacterial. She has seen viral meningitis around quite a but recently and suspects it was that, but with no LP we won't know for sure. He did have positive Brudzinski's and Kernig signs on Wed, but not now. Because he's improving, she didn't want to subject him to an LP, but we have her number and we'll take him in immediately if there are any changes for the worse. At all. And if I ever here the word "meningitis" uttered again, we are going straight to the ER.

 

Poor kid. He woke up with pink eye this morning, as well. And as we were leaving for the ER, he stubbed his toe hard - unfamiliar hotel room - and it looked broken. Had to have an X-ray - at least we were in the right place. It's blue and there's blood, but in one piece.

 

I'm glad we went in, we did get a bit more info, and I feel comfortable taking him back for any changes. Overall, I just wish we'd gone to the ER sooner.

 

He's got a nasty cough, he did have a double ear infection that's still healing, his nose is pouring, throat is sore, but the headache is gone. No nausea, no joint pain.

 

We're meeting with a new pedi Monday.

 

I'm so exhausted I could cry.

  • Like 1
Posted

Oh, my gosh - I can't believe all of this! (I mean I BELIEVE it, but holy crow.) I'm so sorry you're going through this, but very glad to hear that some things are improving.

 

Sent from my XT1049 using Tapatalk

Posted

Uh...  in my experience, if they actually thought it was meningitis, they would have sent you directly to the ER.   Meningitis can go from flu like symptoms to death in less than 12 hours.  They must have decided he had a double ear infection but were also concerned that they might be wrong, hence the very serious instructions of when to go to the ER. Frankly, serious ear infections can mimic some spinal symptoms.

 

If they didn't send him for a spinal tap, they didn't consider it to be meningitis.   They were just worried they were seeing beginning symptoms of it, and wanted you to watch him closely.

 

Former nurse, had 3 spinal taps myself due to high fevers with stiff necks during ear/sinus/upper respiratory infections, had several family members tested for meningitis with a spinal tap too.

 

Frankly, if a kid has a high fever, severe headache, sensitivity to light, and a stiff neck, the ER is the place to go.  Don't mess with a clinic when you need a lumbar puncture and access to IV antibiotics and the ICU.  That said, if he's getting better, chances are it was just a bad ear infection.

 

 

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