Can't tell when DS is sick.

[crunchy_mommy]

I am so upset with myself. I think DS has another ear infection -- which isn't a huge deal, except that I think he's had it for a week and we only just figured it out last night! This is the second time that's happened that I know of but it may have happened more & healed on its own without us ever knowing. Last time his ear drum looked to have burst. I am so mad at myself.

I don't know if this is a special needs issue or just a toddler issue, but he just doesn't relate pain to us well. He is very very verbal but he talks best about things not related to him. It seems like when he talks about himself, it's just hard for him, he uses a different tone of voice, different syntax, etc. And he might tell me his back hurts when really it's his ear, or he might say his teeth hurt but then 2 seconds later he says they are fine, or he complains about things hurting when really he's just cold/wet/whatever. He also doesn't seem to feel pain the same way others do... he doesn't usually cry when he gets hurt, for example, although sometimes he'll fake-cry, like he knows he got hurt and he *should* cry but he just doesn't feel it. But then he cries constantly on & off throughout a normal day, for no apparent reason, so even if he does cry for a reason, it's not really detectable. I don't know. It's just really upsetting to me that I can't tell when he's hurt or sick until he's REALLY hurt or sick, or until he's recovered. I hate to think of him suffering needlessly just because I couldn't figure it out, but his signs are so faint & vague that it really is hard to catch illness except in retrospect.

Anyone else relate???? How do you deal with this? Do I buy a doctor's kit and examine him daily???? (Joking... sort of... he would never tolerate that...) I really feel like I've failed him.

[StephandOwen]

This was one of the hardest things with my ds, as far as mommy guilt goes. I would take him to a well child visit and he would have a raging ear infection or strep throat or something. Made me feel like an awesome mom for sure, not having any clue my baby was sick! But he just didn't show signs of illness like other children did! I eventually started taking him to the dr anytime I thought something was *off* with him. Almost all of those times, he really was sick. He's almost 8 now and can express much better when he's in pain. We've really had to work hard with him on the importance of telling mom and dad when he's not feeling good though, because otherwise he still doesn't say anything to us about having a stomach ache or sore throat or whatever.

[Linda on the move]

It's a special need issue. My DD doesn't experience pain the same way others do -- either over or under re-acting to it, depending on what it is. That combines with her poor sense of what is going on with her body and being unable to tell where it hurts.

It does get better as they get older.

If ear infections are an on-going issue and your primary concern, I'm wondering if there is a something you could put in his ears as a preventative. I used to use something but I can't remember exactly what now -- garlic oil? something harmless that I could just put a drop in her ears.

My DD had constant fluid in her ears, so there were some issues even without them infections. She eventually ended up getting tubes (I which I know are over used by I still think were the right thing for her).

But whatever happen now, this will get better with age.

[Emmeline II]

Originally Posted by crunchy_mommy 

Anyone else relate???? How do you deal with this? Do I buy a doctor's kit and examine him daily???? (Joking... sort of... he would never tolerate that...)

Actually, I was going to suggest that. Dr. Mom has an otoscope for home use; using that and checking his temperature (perhaps in the morning and evening) daily at the same times may help you determine is normal and maybe catch developing illnesses earlier.

[beachcomber]

We struggle with this as well. Our DD is very verbal but can't understand what's going on in her own body well enough to be able to articulate it to us. Pain, especially, is hard for her to verbalize. We've come to understand that when she starts tantruming, acting out or descends into using her "baby ways" (baby talk, clingy behavior, etc) that there is something going on. Often she used to get leg cramps at night and would wake up in a lot of pain. She wouldn't be able to talk at all and would just yell "ah!" at us when we tried to ask. Or she'd yell "no!" to everything. So we learned to just put things that would help nearby - heating pad, analgesic cream, an oral syringe of ibuprofen, etc - and let her start to play with or touch them until she was comfortable enough to let us use them with her.

[AbbieB]

Originally Posted by Emmeline II 

Actually, I was going to suggest that. Dr. Mom has an otoscope for home use; using that and checking his temperature (perhaps in the morning and evening) daily at the same times may help you determine is normal and maybe catch developing illnesses earlier.

I love ours. Easy to use, and we tried a bunch before finding this inexpensive one at walmart.

OP, don't feel bad. My little one has leukemia, and I didn't even see anything seriously wrong until his hemoglobin was at a 3. He was fine one day. The next day he acted a little sick. His lips went pale, he puked, his color came back. He rallied the next day and acted fine. The next day he acted a little sick and it was the next morning that I looked at him and knew something was really wrong. I took him to the pedi thinking he had a raging ear infection. While there he went pale again and all hell broke loose when the nurse saw him in the waiting room,. He was in ICU 5 days later.

Now that's some serious mama guilt.

The nurses and docs and other parents on the floor told me that leukemia can develop that quickly and a few other parents shared taking their kids into the doc or emergency room and being sent home with a "he's fine" only to be in ICU within a week too. But that info does not make me feel better. I question every one day mystery fever he had in the last 6 months (2) and feel guilty for not taking him in for a check up then.
 

Oh, and he was in a lot of pain (98%of the bone marrow were cancer cells in his pelvis) and he never made a peep or acted weird until those few days before the hospital. Even then I had no idea since he was just a bit clingy. The docs told me that kids without SN report it as sever pain, requiring serious meds to ease. Guilt, guilt, guilt...

[insidevoice]

Originally Posted by AbbieB 

I love ours. Easy to use, and we tried a bunch before finding this inexpensive one at walmart.

OP, don't feel bad. My little one has leukemia, and I didn't even see anything seriously wrong until his hemoglobin was at a 3. He was fine one day. The next day he acted a little sick. His lips went pale, he puked, his color came back. He rallied the next day and acted fine. The next day he acted a little sick and it was the next morning that I looked at him and knew something was really wrong. I took him to the pedi thinking he had a raging ear infection. While there he went pale again and all hell broke loose when the nurse saw him in the waiting room,. He was in ICU 5 days later.

Now that's some serious mama guilt.

The nurses and docs and other parents on the floor told me that leukemia can develop that quickly and a few other parents shared taking their kids into the doc or emergency room and being sent home with a "he's fine" only to be in ICU within a week too. But that info does not make me feel better. I question every one day mystery fever he had in the last 6 months (2) and feel guilty for not taking him in for a check up then.
 

Oh, and he was in a lot of pain (98%of the bone marrow were cancer cells in his pelvis) and he never made a peep or acted weird until those few days before the hospital. Even then I had no idea since he was just a bit clingy. The docs told me that kids without SN report it as sever pain, requiring serious meds to ease. Guilt, guilt, guilt...

I know it doesn't fix the mama guilt, but I was diagnosed at 17 and because I also didn't respond normally to pain/discomfort, I had no idea.  My family had no idea.  It just kind of all exploded after the blood tests started.... The docs told me I should have needed huge doses of pain killers to function.  In hindsight, I guess I wasn't well, but it just didn't register.  If someone that old can't notice it in their own body, not even an amazing mom is going to see what's going on with a child until the proverbial poo hits the fan. 

OP, it is a SN kid thing.  My DS suffered a terrible burn and I didn't respond to it because he didn't react as though he hurt at all.  I only noticed later when I saw the large SECOND DEGREE burn.  It needed medical attention and I was trying to explain that he didn't dry or even seem bothered by it at the time, so we didn't fuss at it.  Dirty looks from the nursing staff all over the place!  Even now, he tends to develop terrible infection in his ears, but I don't see any sign of it until I see a discharge or something from the ear.  I watch more carefully now and check super-frequently, but you don't get the same signs in SN kids you do in most NT kids. 

[FarmerBeth]

Everything everyone is saying is bang on.  My DS (11 years) had a staph infection in his whole lower leg this year and I only found out because I noticed when he was wrapped in a towel coming out of the tub.  He's had ear infections like OP's and not said a word, knocked out a tooth and just carried it to us without a work, you name it.  And sometimes he'll go the other way and be very pain sensitive, especially if the painful thing involves another person seemingly causing it.  The only advice I can offer is to keep the ear infections under control as best you can.  Make sure your son isn't eating things he's allergic to because it can make the ear fluid worse, use ear plugs for the pool, and keep an extra close eye for any subtle signs following catching a cold.  We had to get ear tubes for DS at one year, he had been nearly six months with an ear infection and nothing was clearing it up.  It did do the trick for him.  We also had to limit his exposure to infection.  Which is hard when you have an SN kid who you are trying to help with social skills, but he was catching everything !  Oh, and when you mentioned your son saying that it was a tooth once when it was an ear, there's a reason for that!  Your ear and your jaw share common facial nerves, and many kids and even adults will confuse pain from the two areas, so if he complains about a tooth you may want to keep an eye out for earache.

[isisreturning]

Thanks for this thread - I have been wondering about/struggling with the same issue with my SN DD. It's a comfort to realize it's a common phenomenon among SN kiddos. 

Just this week DD started saying and signing, "hurt" and "owie", but when I ask her "where does it hurt?" "where is your owie?" she just echoes my words. So I'm like, GREAT - she's maybe trying to tell me that she hurts somewhere, but she can't yet tell me WHERE. And there's no obvious symptoms. Panic-inducing to me since she is a brain cancer survivor. Gah! Watch and wait, I guess.

[StephandOwen]

To add a couple more stories....

When ds was 4 years old he had a potty accident (was sitting on the toilet, fell in, jumped back up and cut where his penis meets the abdomen). DH was freaking out (he called me at work and I walked him through what to do and had him start driving ds to the hospital, where I met them on the way). While I was on the phone with dh, ds was totally quiet- not screaming/crying at all. When I met them (less than 10 minutes after the accident) he was still cool as a cucumber. At the hospital the staff kept asking "does it hurt him?" and it was all I could do to not yell at them "of course it hurts! Let's cut your penis off and see if it causes you any pain" He ended up being sedated and getting stitches and surgical glue to repair it (no long term damage, thankfully). He never cried at all. The only thing that upset him is when we first got to the ER and the doctors were wanting to look at the cut they kept standing in front of the tv so they were blocking his view. That ticked him off

When ds was 5 years old he got really ill... except we didn't know how ill or what was going on. The only thing was that he was really lethargic and his fever got up to 107. That got him a trip to the ER which ended up with a 4 day hospital stay. He did eventually tell us his belly hurt but that was it.

[Eyelet]

I can relate... My son is nonverbal and insensitive to pain. It truly is a guessing game to if he's not feeling well. All I can really do is watch his behavior closely and take his temperature. It's heartbreaking to think he might be hurt or in pain and not be able to tell us.

[crunchy_mommy]

Wow thank you guys for sharing, it is so comforting to know that this happens to others too!! At least now I recognize that it's an issue for us so I can be more alert with the subtle signs. He is exactly like some of you described -- often doesn't seem to feel pain at all but in certain situations overreacts.

He had a neurological issue that I guess can be the result of strep, and I had a very hard time unsuccessfully explaining to the doctor that I couldn't know for sure that he didn't have strep at some point. She thought I was nuts and didn't understand how painful strep is (I've had it at least a dozen times, I know it's painful!!) and kept saying I would have known if he had had it. I can see this being an issue for a while for us. As far as I know, he has only had 2 ear infections, though he may have had more we weren't aware of when he was younger... so I don't think he needs ear tubes or anything but we do have some natural & safe remedies that I can make sure to use if he's acting at all suspiciously & I will be much more quick to react if he seems even slightly 'off'. It was actually his back he complained about when his ear hurt. ???? Teeth makes sense, but I don't get why he'd say it's his back.

It's just so weird to see how other kids react compared to how he reacts to illness/injury/etc. My friends notice it as well -- it's especially apparent when he collides with another child who starts hysterically sobbing and DS is just fine & all confused about why the other kid is crying. Then he will scream because water touched him.

[Zan&Zav]

Definitely a SN thing. My son at age 3 was finally hospitalized for a COMPLETELY OBSTRUCTED BOWEL after me seeing 3 differant doctors who told me he is not in enough pain to be sick.I had to get his psyciatrist to call the hospital and have him admitted for tests. He was not allowed to leave for a week after he was admitted because it was so bad they were afraid of rupture. He's a fun kid, scares the crap out of me every day. And I HATE doctors who refuse to listen to parents and think they know everything.

[LynnS6]

Our son and my dh are both like this. They both have SPD.

Even as an adult, dh doesn't feel pain like other people do. Seriously. He can't feel it until it's really intense, and by then it's usually something serious. When he was in college, he broke his foot playing football, went to class all day, and the walked over 2 miles home. It wasn't until the next morning that his host family (he was studying abroad) saw how swollen it was and got him medical treatment. So, my point is, if my ADULT dh can't tell when HE'S sick, please don't feel guilty that YOU can't divine what your young child is feeling. I once took ds to the doctor to get his ears checked because he'd pulled on them once or twice, and we were scheduled to fly to see relatives later in the week. It turned out he had a raging ear infection. The only sign was that little pull on the ear. If we hadn't been flying, I would have blown it off. Ds had strep last year (badly) and when we took him to the doctor, the doctor asked "does it hurt to swallow"? "Not really" was his answer. When I get strep, I know it. Apparently, he doesn't. (And his sister did know it as soon as she got it too, so it wasn't like this version didn't cause throat pain.)

[crunchy_mommy]

Originally Posted by LynnS6 

Even as an adult, dh doesn't feel pain like other people do. Seriously. He can't feel it until it's really intense, and by then it's usually something serious. When he was in college, he broke his foot playing football, went to class all day, and the walked over 2 miles home. It wasn't until the next morning that his host family (he was studying abroad) saw how swollen it was and got him medical treatment.

That's so crazy, my DH did almost the exact same thing in college!! His hands started turning purple the next day and I finally said, um, you need to get to a hospital NOW!! I never made any connection between how DS is & DH (always thought DS got his *issues* from me!)

[Emmeline II]

Originally Posted by crunchy_mommy 

He had a neurological issue that I guess can be the result of strep, and I had a very hard time unsuccessfully explaining to the doctor that I couldn't know for sure that he didn't have strep at some point. She thought I was nuts and didn't understand how painful strep is (I've had it at least a dozen times, I know it's painful!!) and kept saying I would have known if he had had it.

I caught strep from my niece while pregnant (fun times ) and I would describe the pain as swallowing a handful of small razor blades.

I hope you are able to find a doctor that understands this special need so you don't have to fight/explain every visit.