Doctors...is this ridiculous?

Jodi - posted on 12/02/2012 ( 19 moms have responded )

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OK, I haven't been on here in...ages! My daughter, who is nearly 2 now has been seeing doctor after doctor. She started breaking out in hives here and there over summer. I didn't think too much of it, I used to break out in hives as a kid too. But I did mention it to her pedi, who suggested trying a new detergent, but if it wasn't really a problem then she wasn't too concerned. Well, it really wasn't a problem,...then.



Since October she's been breaking out more and more. She's even been in the ER to get a shot of steroids! First they told us it was a bladder infection. No luck with that. Then it was a reaction to a virus, but that should have cleared up months ago by now. Then it was probably a food allergy or clothing allergy. We had switched pedi's because the original doctor didn't really feel like pursuing the problem. The second one had us keep a food journal, but when nothing raised any kind of flag, much less a red flag, and even after being on the flavorless rice and bread diet thing and reintroducing foods, nothing showed up. Apparently, that just showed that the hives were all in my head. (The only time a doctor has SEEN the hives is when we took her to the ER, they're always gone by the time we get there!) Another doctor made us switch detergents several times, even having us use a homemade variety with no luck...and again, I MUST be making things up or over reacting. The last doctor keeps offering ideas, but not doing anything because whatever is, I needn't worry and really, she sees nothing wrong my daughter. (UGH!!!!)



We decided to take our daughter to an allergist, but we can't make an appointment without a referral. Our Pediatrician doesn't think it's a problem, so has thus far, not given us said referral!



I have done hours and hours of logging my daughters food intake, what she wears, what I wash it with, what we did that day, the pollen count for the day (since I have terrible hay fever and maybe this is a really severe hay fever allergy.), the temperature in the house, the temperature outside etc etc. As the weather has gotten colder, and since we've turned on our furnace, she ONLY...but also ALWAYS breaks out in hives when we go outside. I have seen and known this correlation for the past month or so. The outside thing is independent of what she eats, drinks or wears, the other things can vary greatly, but if we go outside, she breaks out within 10 or 15 minutes. Faster if it's windy.



After hours and hours and hours of internet research, I have found a possible explanation: Cold Urticaria...or...an allergy to cold temperatures. It is rare, but it is real and the symptoms fit. My pediatrician thinks I'm crazy, literally only about 1 in 100,000 people have this (at least from what I've read). I am calling the allergist tomorrow to tell him what I think she has and see if I can tempt him with a pretty rare disorder to see her without a referral since I can't seem to get one.



What do you think? Do you think it should be this hard to get a diagnosis for a child? It has been MONTHS, and I no longer take my kids outside because of this, so it is really impacting our daily lives. Surely it shouldn't be this difficult to get a doctor to take notice that something is wrong with my daughter and she needs to help me figure out what it is?!



This was really more of a vent since it has been a VERY frustrating journey for us and probably isn't even close to over yet. But...feel free to discuss!

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Jodi - posted on 12/02/2012

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I think the reason they often wait a bit before you are referred to an allergist is that allergy tests can be traumatic for a child, and that 80% of all cases of hives due to allergic reactions actually go away on their own within 6-12 months and they never actually identify what caused it, and it never recurs. I know that sounds strange, but that is what my allergist explained to me.

Mary - posted on 12/03/2012

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I can only imagine how frustrating this is. While I do think you kid needs to see an allergist, the bad news is that even that may not give you all the answers you are looking for. I know quite a few people who have been diagnosed with "chronic hives". For almost all of them, they were unable to pinpoint a specific trigger. Heat, cold, stress, excessive humidity...multiple things could be the trigger for an outbreak one day, and not be an issue a week later. Only one of my friends was found to have an underlying immune disorder (thyroid issues).



For all of them, they have played around with numerous anithistamines like claritin or zyrtec. Depending on the severity of the outbreak, or if they are having a particularly long stretch of time with frequent outbreaks, zantac or another H2 blocker might be thrown into the mix. The sad truth is that while your daughter's frequent outbreaks are distressing, there may not be too much more an allergist can do than try different drugs to treat and manage outbreaks. It sounds like you've done a lot on your own to rule out a lot of the more common, and easily identifiable triggers. If she truly does have cold uticaria, about the only thing you'll be able to do is either avoid exposing her to the cold, and either premedicating her before she will be exposed, or keeping her on a daily dose of histamine blocker such as zyrtec.



My niece didn't have chronic hives, but she did have multiple environmental allergies as a child (in addition to her peanut, egg, and sesame seed allergies!). From about the age of 2, until she was 6, she did have to take a nightly dose of one of the histamine blockers. Without them, she simply could not play outside for any length of time. The good news is, these issues have lessened significantly as she has aged. At 10, she no longer has the egg allergy, and she no longer needs to take any daily meds. Whatever your daughter's issue is, the odds are actually pretty good that she will outgrow this....eventually.

Amy - posted on 12/02/2012

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Just out of curiosity have you looked into the possibility of an environmental factor such as mold or pollen. I only mention it because you say that there usually gone by the time you get to the doctor. My only other suggestion would be to photograph them for the doctor to see that it's actually happening.

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Cecilia - posted on 01/10/2013

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i would call doctors and explain to them you are concerned for your daughter and your other doctor won't write a referral for you. don't lie to them you'll only waste your time. I did this with my oldest child. His doctor was pushing meds for ADHD and i wanted more natural approaches. I called around for hours out of days until one said oh i know the perfect person for you. he took us as a client just to refer us. He's now the pediatrician for all my children. Even though you got the referral, you can't really trust the one you have now to take you serious.

"Do you think it should be this hard to get a diagnosis for a child? It has been MONTHS..."
I FULLY feel your pain here. My other son from birth has had "issues." I've gone to so many doctors, had every test imagined on him more than once. He is legally blind so he also has seen the best ophthalmologist. I even spent 6 months in California seeing a specialist. He's 13, i do not have a diagnosis. We always seem to find new things when we see a new doctor or run a new test. His last cat scan showed his pituitary gland is way too small. This only adds to the mystery each time. I have spent my life savings trying to figure it out. My only peace of mind is that in 13 years it hasn't seemed to have gotten much worse.


Don't give up, you are your child's advocate. If you don't yell sometimes, no one will listen,

Alexis - posted on 12/31/2012

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does she only get it when she goes outside at your house? cause if she gets it only when going outside you could have just had her stand outside for 10 minutes at the dr's till the hives showed up. or do this outside the hospital then ask the dr there for a referal to an allergist... if you live in an apartment or a house you might want to talk to neighbors or the owner to see if they use pesticides or something like that.

i only sugested that cause me and my little brother had the same problem when we were little, and it was all cuased by a spray ant killer a neighbor 3 houses down was using.

Jodi - posted on 12/07/2012

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Well, we got the referral (finally!). So, called the allergist (my ped had faxed over the referral to save me 2 hours of driving it there and then coming back!). Now we have an appointment...for the end of January...BUT...we have an appointment! Wahoo! (I took your ladies' advice and took pictures, I also took a video and my notebooks of documentation on foods, chemicals, weather, activities etc etc.) I think my ped finally got the drift that I wasn't just going to be "oh, OK, I'll just make my daughter suffer through this or make the rest of the family suffer by avoiding going outside!" I think she just wanted to be rid of me, but whatever, I'm one step closer to getting this figured out!

Momma - posted on 12/06/2012

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I think it is ridiculous that your ped will not give you a referral! I mean what is the big deal? All they have to do is fill out a piece of paper and send it along. How aggravating! Honestly, no, it should not be this difficult for you to be able to continue to try and reach a prognoses. I would be pissed! Next time, I would be very stern in telling her how you feel and how important this is to you. That you are NOT imagining it and you cannot stand any longer to see your little girl suffering, of which is beginning to impact the entire family.



IDK but they need to be a wee bit more considerate and understanding and help you, help your baby girl!



~MeMe

Toni - posted on 12/05/2012

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Over the last couple of years I have developed an allergy to dust mites.

I have to keep the house incredibly clean and well dusted everywhere or I break out in hives.

I also have to take anti histamines on my cleaning days so I dont have a bad break out just from cleaning it all away.

Im not saying this is what your daughter has, just another suggestion.

It is possible that your daughter is allergic to dust mites, and they are not in large enough numbers in your house to bother her, but outside they would be everywhere.

[deleted account]

I've been dealing with a mystery pain in my abdomen and lower back for nearly 5 years with zero diagnosis and I'm on morphine now. I've been to the gyno, urologist, neurologist, primary care, gastro (2 of them) and a ton of trips to the ER. No one knows what's wrong and I truly syumpathize with you and your daugter. There are days my pain is so extreme that I throw up. I have been told it's all inmy head. Especially since I had the nervous breakdown over the summer, no one believes me now.



I think you may definitely have an idea. I've read several accounts of this allergy although I've never seen it personally. I would try to get the doctor to go outsde during a visit and I apologize if that's not a good idea, I feel really bad for you and your family.

Jodi - posted on 12/03/2012

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Oh, I know chances are she doesn't have CU (and quite frankly, sinec winter lasts 6+ months here, I HOPE it's not this), I'm just super frustrated that our doctors aren't even pretending to try. At least if we see an allergist, maybe he could prescribe an antihistamine that is stronger than benadryl that might do us some good. And I really hope she grows out this...this week would be nice! lmbo ;)

Jodi - posted on 12/03/2012

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The heavy hives really depend. If we're outside for quite awhile (like, today is supposed to be almost 60 here, so we'll be outside for at least an hour I would suspect), then the hives will be present from the time they start until a good half an hour after we get inside or more. If we're only outside for a bit (which is the usual case since I hate seeing her with them) it will last maybe 15 minutes after we're inside. But she'll have these little pinprick pimply looking things for hours afterwards, it'll be just maybe 4 or 5 in a couple different locations, but the doctor doesn't think they're anything. They are related because they are only ever there AFTER she breaks out.



The allergist we want to make an appointment with is 2 hours away, if I want to see yet another pediatrician, the next town is an hourish away, and I'm getting to that point, but our copays are starting to catch up to us, it really shouldn't be this difficult to get a freakin' doctor to do their job.



*ETA: I am equipping myself with our fully charged video camera today, I plan on documenting the temperature with it, the time of day, her skin before going out, getting dressed, her skin while being out, her skin inside. I will be emailing it to each of our past pedi's in hopes that one of them will help us out and give us the damn referral!

~♥Little Miss - posted on 12/03/2012

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How long do the hives last once she gets them? Just curious. I get hives when i get extremely anxious, excited or upset. Just throwing that out there. In fact, my mom and 2 sisters also get them for this reason.



I think sometimes doctors easily blow off concerns of parents. At this point, I have a great doctor who really listens and takes my concerns seriously. I have moved 1 hour away from his office, and still plan on seeing him cause he is just that fantastic. Doctors who listen are rare to come by these days. Most look at the file and judge what is going on before even walking through the door to see the patient.

[deleted account]

I can see why you are frustrated--she should have given you the referral the first time you asked. DEFINITELY the second time. I can't imagine why she would be hesitant to send you to a specialist--after all, no doctor can know everything there is to know about the body, that's the very reason we HAVE specialists :P



Can you get a second opinion from another pediatrician who might be more willing to give you the referral?



That said, I hope she doesn't have to do an allergy test--those are pure Hell on Earth. Poor baby. I do hope you get it handled soon.



On a side note, I had similar issues having to note EVERYTHING when J was struggling with insomnia. People don't realize how much time and effort and organization that takes--it really messes up everything else in your life when you have to deal with all of those logs and notes.

Jodi - posted on 12/02/2012

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They may not be *trying* to be difficult, but they certainly aren't trying their best to help us. I mean, a referral is hardly a difficult task for a doctor, and once she does that, I'm most likely out of her hair! I'm beginning to think they think I have like... Munchhausen Syndrome or something! So, I'm certainly not asking my pediatrician to treat something she can't verify...I'm asking her to help me verify it so we can find a treatment! Twice I've asked her for a referral, both times she gave me another bottle of the same antihistamines that aren't working and telling me to give it another month, it'll go away, instead of listening to me that it's only getting worse.



And yeah, we can't afford to go without a referral, and really, we shouldn't have to. An allergist could administer tests that could verify an allergy that could be treated, all I need is the referral. But it's like my pediatrician is reluctant to send me somewhere else that might be able to help me when she can't.

[deleted account]

It is very frustrating to get a diagnosis for such rare disorders.



It should not be difficult to get the referral to the allergist from your pediatrician. She should give it to you if you ask for it whether she feels you need to see the allergist or not. If you cannot get one, you can see the allergist without a referral, you just have to pay out of pocket, which can be pricey if you usually depend on insurance.



Unfortunately, there is not much more your doctor or the allergist can do--they cannot diagnose anything if they cannot see the symptoms in person. I mean that literally--they can lose their license if they try to treat something without having seen the symptoms present in person--there is simply way too much margin for error. I assure you, they are not TRYING to be difficult, but things can get difficult when symptoms are sporadic.

Dove - posted on 12/02/2012

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Aw... poor kiddo! Other than the picture thing... I'm not sure what else you can do.



Totally not the same thing, but my son keeps getting red splotches on his back/chest/arms/etc... kind of like a bug bite, but then spreads. Could be hives too, I suppose. I have no clue what causes them cuz if it were bites... you'd think one of the rest of us would get some too. They come and go in different spots pretty much every day. They don't usually bother him though and I have itch cream for on the rare occasion that he complains.



I haven't brought him in for it yet though since they keep going away, changing location, and he's not bothered by it. I hope you figure something out soon!

Jodi - posted on 12/02/2012

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I dont' know about mold, but pollen shouldn't be a factor this time of year, it's so wet and cold that pollen is kind of a "non-factor". I have also never seen mold in our yard, my parents yard, my in-laws yard etc etc. (It doesn't matter WHERE we are outside, our yard, someone else's yard, a park, a car lot etc etc.)



And from what I've read, unless it's familial UC, the hives go away as the skin reheats. So, just the car ride would be enough to make them go away. Although, I should photograph her skin to bring in as proof that I'm not making it up. That's a good idea! Or, I could just have her run around outside for a while until we called into the office...but I really don't want to do that to her, they seem really itchy and uncomfortable, and she'll hold up her hands and say "ow momma...hands ow". :(

Lady Heather - posted on 12/02/2012

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My daughter is allergy ridden and it's been hard just dealing with what I think are food allergies. I have the opposite to the cold hives - I get them when I'm hot, whether it's hot in the environment or I get stressed and my body temp rises. Somebody has to be the one to have it though, right? It's not 0 out of 8 billion. It's 1 in 100,000. Ha.



I don't know why some doctors don't want to refer to specialists. Our family doctor doesn't want to send us to an allergist either. I'm like...but she breaks out in hives every time she so much as looks at a tomato or a banana. I'd kind of like to know for sure if she's allergic. He's all "well, you seem to have figured it out on your own". Except those things combined might indicate a latex allergy (similar proteins) and you kind of need to know about that one douchebag. And no, I am not going to stick latex on my baby and test it myself. Maybe I should take her to the hospital and get her to touch a bunch of shit and if something goes wrong, well...there you go. Sigh. I feel your pain.

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