Child with undiagnosed itchy tongue - please advise!!

Discussion in 'Introduce yourself' started by CapeMom, Aug 3, 2011.

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    CapeMom New Member

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    My 7 year old daughter is suffering from an extremely itchy tongue on and off for 2 years. The doctors are calling her a "medical mystery." She has been to a dentist, an oral surgeon, 2 allergists (one being the Chief of Allergy at Children's Hosp in Boston). No one can find any reason for this problem. The allergists say that they have never heard of a person that has only an itchy tongue with no other complaints. All her skin allergy tests were negatives upon both visits one year apart. We have tried benadryl, zyrtec, flovent. The PCP is thinking perhaps it is Oral Allergy syndrome, but also feels that it is not a typical case because she tested negative for the common allergens associated with this syndrome. Next week we are seeing an ENT. It comes and goes and seems to be gone all winter. We also tried keeping a food diary for a while but found no consistencies there. She has undergone two sets of blood tests and all is okay there. She cries a lot and is misery. When she is suffering, she scratches her tongue using her teeth which then creates white sores on her tongue. Nothing helps and no one has been able to diagnose the problem. My husband and I are heartbroken. We don't know how to help her. She often says she wishes someone would just remove her tongue.

    If you have any information, please pass it on to me.
    Thank you so much!
    Jody


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    AllergyGuy Administrator

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    Jody, I really have no idea, but it sounds like you are going in the right direction.

    One thing I was thinking as I was reading your post was that maybe she is scratching and irritating her tongue. Then I read further about how she scratches with her teeth and I'm thinking that might actually be exacerbating the issue. If she had a mild reaction to something and it caused her tongue to itch then she scratches it and irritates it to itch more it might never heal. Kind of like it you have a rash on your arm and you keep scratching it causing it to never really heal and keep itching.

    I'd talk to a doctor about maybe giving her liquid Benadryl at the first sign of itching and trying to get her to stop using her teeth to scratch her tongue. Unfortunately it's not a part of the body you can wrap up and keep from scratching. It's going to take self control. At this point, without knowing your daughter, is it possible this is a nervous habit?
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    Pieter New Member

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    Sorry... just got here... I have the same thing. For some inexplicable reason, (might only be in Spring?) the back of my tongue itches like mad... like I ate a mouthful of dust or something. Reeeeeaaaallly irritating. But I'm a big kid now, so I deal with it. It's still super annoying, though.
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    Emilie New Member

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    Could she be having a reaction to foods high in histamine? On food diary s sometimes they can unhelpful in the case of intolerances or reactions that are delayed and last longer. For example if she has a problem with chocolate and green beans but her reaction doesn't start for a day or 2, but then lasts for weeks because she is itching it (and I don't blame her for itching it, that sounds very uncomfortable for her). Say she eats a chocolate on the week end then Tuesday the itching starts, Wednesday she has beans, well you would never know she was having a problem with beans too because she is continually triggered by something so it may not goes away then appears. Could she be eating something in the winter that she doesn't in the summer,like for example watermelon?
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    Carastina New Member

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    Hi Jody - I'm freaking out my 6 year old daughter has the same thing. It started this summer with a diagnosis of oral allergy syndrome but it has progressed now to most foods as well coming on with out eating anything. The last 3 days it has been about 75% of the day of constant tongue itching. I see you posted this in 2011, please tell me you have found some relief as the doctors seem to be writing me off as well.
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    AllergyGuy Administrator

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    Have you been able to keep a log of what she's eating to see if there is a pattern? How about candy or something she might be eating or doing without you?
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    Carastina New Member

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    Definitely no candy and it's not possible for her to eat it w/ out me. I can't find a pattern and now it is happening with all foods and with out eating - it is most of the day and getting worse. Two allergists from Mont Sinai and the Children's Hospital of Philadelphia told me it's not allergic and they have never seen it before. No one will help me. She can't go to school now because of the itching and it is affecting the amount of food i can get in her, no fruits or vegetables. I had taken her to the ER of the Children's hopital at Philly that is where i met the allergist but they won't take this seriously. she has bad stomach pains, bad headaches and she has only had one haircut when she was 3 and i have not cut her nails since last year. Something is happening now at an alarming rate and i have no where to turn. I have an appt w/ the children's hospital diagnostic center but not for over two weeks and i don't think she can hang on like this.
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    AllergyGuy Administrator

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    "she has only had one haircut when she was 3 and i have not cut her nails since last year." --- Are you saying they haven't grown? If so, it sounds like malnutrition. She might not be getting enough nutrients and that might lead to some of these other issues.

    I'm not a doctor, and I offer this advice as just a lay person trying to help. But, there should be some food she should be able to eat. I would provide her a single real food each time and monitor. Like an orange or a pear or something that has nutrients that is a single item.

    Also, has she been checked for Ciliac Disease?

    I understand your fear and frustration, but the itchiness doesn't seem to be life threatening, correct? I would think you need to make sure she is eating nutritious foods. That's important because if she is malnourished she will have more serious issues.

    Also, some of this could be psychosomatic....I'm not saying she is making it up. But, because she is so used to felling this way it might start being a normal feeling for her. I would try not to focus on the issue while eating and have her focus on something she enjoys and see if it doesn't help a little.
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    CapeMom New Member

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    Carastina,

    We did finally get an answer and a solution. (This was after trips up to Boston to two top hospitals where they did not help at all)! We found an extremely bright ENT who specializes in allergy. He explained that there are two schools of thought in allergy. Some very competent allergists only believe in the type of allergies that show up on low sensitivity tests, such as scratch tests. But our doctor, who is also a researcher, has evidence that there are true allergic reactions caused by overload of certain substances presented to the body within a certain period of time. To determine which substances were a problem for my daughter we did keep a food log and she had intradermal allergy testing. This kind of allergy testing did find things that she has a reaction to. Some of those same things did not present a problem on traditional scratch allergy tests. The food log was interesting as well. We often look for a unique food that may cause the problem, but in reality people often have reactions to food that they love and eat a lot of. This is a type of "overload" allergy. In my daughter's food log you would see that she ate apple slices, raspberries, and pear slices within a 24 hour period. Someone like me wouldn't notice that those foods could cause a problem, but the allergist explained that those are all part of the same food group - the Rose food group. So if she has a lot of foods from that food group within a 2-day period, it can cause an itchy tongue. Along with the food sensitivities, the intradermal allergy testing found her to be sensitive to a variety of molds, a few trees, ragweed, and grass. So during grass pollen time there are particular foods that have a cross-reaction with grass so she needs to cut down on those particular foods or else she is bombarding her system with the airborne allergen plus the food allergen. Get it? I hope you find this helpful. There is so much more information, but hard to write it all down, so please don't hesitate to ask me more specific questions. As for the solution, I have a list of when to avoid certain foods or at least rotate them every few days so as not to cause an overload. She gets an allegra daily to help her combat the airborne allergens, and most recently she has started taking allergy drops.
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    AllergyGuy Administrator

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    Hey, this is great news...

    Is she doing better?

    Feel free to write as much as you want. I'm sure it will be helpful to other mothers....

    Congrats
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    ben New Member

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    Sorry your child has had to deal with this! My 5 year old daughter has had a itchy tongue for a few months now. She has seasonal allergies (scratch tested)

    We are trying to figure out what is going on with her tongue, but we have found that CRUSHED ICE seems to stop the itching for a while! Just break up some cubes, and let them chew them up.

    I think my daughter is low on iron, but I also think she suffers from unexpected allergies. apparently, the protein in fruit, can mimic the protein in grass/pollen. So when you child eats apples/fruits, the body thinks the proteins are from grass/pollen, since they are so similar!

    The build up of apples, apple juice, etc. is likely the cause!

    Just because someone is a doctor, doesnt make them smart! There are stupid Dr's, so beware! Good luck, I hope your kids get relief from the ice!

    Good Luck,

    Ben.
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    CapeMom New Member

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    Hi Ben, The ice doesn't really work on my daughter, but the doctor has instructed us to take Zantac 75 morning and night plus double dose of allegra when she first gets the itchy tongue. This will help kick the allergen out of her system quicker. Hope this helps you, too. We have now started her on sublingual allergy drops (same as allergy shots but don't have to get a shot every week and can do at home) to build up her resistance to her allergens for the long haul.
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    Pieter New Member

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    For what it's worth, I had the same crazy itchy tongue when I was a kid. Was like I ate a mouthful of feathers. It only happened in the winter, though. Fast forward to a month or so ago.... Was sleeping under my down comforter, and was really uncomfortable - same itchy feeling. Looked at myself in the mirror and I had red rash everywhere on my arms. Turns out I have always been allergic to goose down.
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    InventingJoy New Member

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    Has anyone ever tried lidocane or any other topical anesthetic? Not really a treatment but might be nice to have on hand for quick relief. Puppy love from InventingJoy & Furry folk
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    Lululand New Member

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    Hello, I am new to this forum; however, my daughter has the exact same thing. It started when she was 5 or 6 and has only gotten worse. She is 8 now. She also is tortured by this itching and she cries and begs me to do something. My husband and I feel so terrible about not being able to help her. So, we have followed you, Jody, on another site, and have been looking for the answer for years. We were sent to an oral pathologist who suggested that we start her on Zyrtec nightly and "see what happens." We did this and it seemed to help...but we are not sure. On a few occasions we forgot to give her the Zyrtec and the itchy tongue started up a few days later.

    I am so thankful for your post and sharing your results!! We will tell our doctors (we've been to allergists, ENTs, oral pathologists, gastroenterologists, etc. No one has been able to help. We have tried the lidocane...actually, it was a solution of Benedryl, Mylanta, and Lidocane. It helped her fall asleep for a short time then stopped.

    I hope your daughter continues to do well.

    Thank you for your response!!
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    Lululand New Member

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    I have a question for Capemom. Is your daughter still having relief from these symptoms with this treatment? I made appointments for my daughter with a new allergist but I have to wait until July 10th. I am worried about going off the allergy meds before the appointment because her symptoms get worse every time she gets the itchy tongue. Also, what is intradermal allergy testing?

    Thanks!! I hope your daughter is doing well.
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    theresa New Member

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    My son is now 7 & he has the same problem, itchy tongue, it started last year out of no where & now it's off & on. It seems to be better during winters... but it just started again & there's nothing doctors can do. So who is this bring ENT that explained about the overload of certain substances? I did keep a food log but I can't seem to find any correlation. How often does your daughter do an intradermal allergy test? And has this solve the problem? or at least control it better? Please give me info on this ENT, thank you so much.

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