Thalassemia Patients and Friends
Discussion Forums => Miscellaneous Questions => Topic started by: Sharmin on October 19, 2008, 02:59:55 AM
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Andy,
My son is prone to canker sores, he tends to get one every other month or so. A few days ago his neutrophils dropped (0.0) and then quickly rose again, most likely due to a cold. At the same time he ended up getting numerous canker sores in his mouth, his doctor mentioned that canker sores can occur when neutrophils are low. He is a little tired, but generally doing quite well - considering that his doctor has allowed his hg to drop very low for the phenotype testing next week. We are slowly weaning him off of prednisone as well - can some of this be related to that as well?
Thanks Andy,
Sharmin
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5:10 am. I can't sleep and just finished reading an article about canker sores.
Back to this much later.
Sharni,
You can almost say all of the above as the answer here. Canker sores can be an autoimmune response, can be a response to low neutrophils and since treatment is often prednisone, it would be possible that they reappear when the prednisone dose is reduced.
http://www.maxillofacialcenter.com/BondBook/mucosa/aphthous.html
Inflammatory ulceration of the oral mucosa is quite common (Table 1) and approximately 20% of adults (range in various studies: 5-66%) suffer from very painful aphthous stomatitis or canker sores, usually of the recurring variety. At any one time 1 of every 323 adults have an active ulcer in the mouth. Once thought to be a herpes virus infection, the entire class of canker sores is now thought to be an aggregate of a variety of disease processes, each with the ability, in its own way, to produce rapid but self-limiting destruction of mucous membranes, predominantly through immunologic and ischemic mechanisms. In some individuals the ulcers are a secondary or hypersensitivity response to antigenic stimulus, especially foods (peanuts, tomatoes, strawberries), while in others they are a primary autoimmune disorder. Patients with aphthae have a decreased ratio of T-helper (CD4+) cells to T-suppressor/cytotoxic (CD8+) cells in their circulation, and the ulcer bed itself has a high level of CD8+ cytotoxic cells. While this is a likely contributor to the destruction in these ulcers, initiating causes vary from one person to the next, including: familial predisposition, allergy, nutritional imbalances, infectious agents, hormones, trauma, stress, blood dyscrasias. Patients with AIDS are at increased risk of aphthous ulcers, most likely because of the common increased CD8+ levels resulting from a reduction of CD4+ T lymphocytes.
Certain histocompatibility antigen types, especially HLA-B12, HLA-B51 and HLA-Cw7, are associated with at least some aphthae. This is more likely in individuals with co-morbid extra-oral diseases such as Behçet's disease (Behçet's syndrome), which is associated with HLA-B12, Crohn's disease, celiac disease and ulcerative colitis. Cyclic neutropenia is responsible for a subgroup of aphthous stomatitis patients, with the ulcers occurring at points of minor trauma during times when the number of circulating neutrophils is low. Stress may be indirectly responsible for canker sores, which were once called "stress ulcers," through its modulation of the immune system. Paradoxically, tobacco smoking, with its own immune modulation, is often protective, probably because of the increased keratinization resulting from local irritation of mouth membranes. Conversely, diseases which thin the membranes, such as deficiencies in vitamin B12, folate or iron, increase the risk of aphthae.
The subgroup of aphthous stomatitis patients who develop their ulcers in response to antigenic stimulus are experiencing immune-mediated cytotoxic destruction. No single antigen has been identified, however, and a variety of foods and micro-organisms have been implicated. The micro-organisms include the L forms of streptococci, cytomegalovirus, herpes simplex virus, varicella-zoster virus and adenovirus. Recent research has shown that Behçet's disease is associated with hypercoagulation, possibly producing acute mucosal and skin ulcers via soft tissue infarction in a manner similar to deep vein thrombosis.
Treatment.
There is no effective treatment for an aphthous ulcer but, fortunately, it usually heals without therapy in 6-12 days unless there is an underlying immunoincompetence or the patient suffers from major aphthous stomatitis. Injection of IV prednisolone may be helpful, as may systemic corticosteroids and topical or systemic tetracycline therapy. A mild anesthesia may last for 5-15 minutes (enough to get through most of a meal) with the topical application of a mixture of Maalox and liquid Benadryl or Benalyn (mixed 1:1), or a mixture of these with a Decadron elixir. There is no malignant transformation potential to this lesion.
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Hi Sharmin ,
your son is a brave soldier , he is a super fighter .. he won over anti-bodies , for him these canker sores are nothing ... i m sure he will GET WELL VERY SOON ... stay calm when you face him ....
Best Regards
take care
umair
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Thank you very much Andy - our doctor agrees with you as well - he also said that it may be a combination of the drop in neutrophils and weaning him off of prednisone.
Umair thanks bro:) He looked so miserable with all of the sores in his mouth - and he was having a hard time eating but he is much better now.
Andy, thanks also for the article, it gives me another reason to look into possible deficiencies and introducing more supplements again. I have not given him B12 yet, I will do that soon.
Thanks again,
Sharmin
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Sharni
I just read this.
How is Armaan now?
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Hi Sharmin,
Let me add something to this.. not too long back, (as recent as four months back), i used to have canker sores.. and i cant begin to tell how painful they were... it comes out almost anywhere inside the mouth and stays for almost a week before healing. And not soon after it disappears, it comes back again.. this went on for more than six months!! I had such a painful time:s:s
and evrytime i showed any doctor, i was given pain relievers and mouth disinfectants.. but none of it helped... until this year july, in Maldives, an ENT doctor i showed because i had a severe cold that time saw the cankers and told me that i was vitamin deficient and she thought thats why its happening.. i was only on folic acid, calcium and vitamin E at that time..
She prescribed me vitamin B complex and the canker sores disappeared after abt three weeks i started it.. I havent stopped taking B complex since july and have added some more vitamins such as D, Magnesium and Zinc to my daily pill intake.... and am happy to say no canker sores until now...
hope that helps,
love, maako:D
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Hi Maako ,
i m sorry to hear abt your suffering , i can understand how painful experienced were it will b .. i hope it will never disturb you again ...
Hi sharmin ,
same feelings for your Son ( Little A ) . i hope he will recover soon and it will never come again ...i hope that God bless all the patients who are suffering to any kind of illness ...
Sharmin ,Best Regards for your Son,
Maako, Beest Regards for you too !
Take Cae
Umair
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Thank you kindly my friends:)
The sores are now gone, he was very strong for a week having a mouth full of ulcers - and they all looked so inflamed. During the same time his neutrophils had fallen to 0.0 - so I really freaked out - fearing that it may all point to exjade. It all cleared itself up completely. The doctor said that the two often happen together - the sores and the drop in neutrophils and none were related to exjade. Exjade has been so good for us that I did not want to see anything negative going on that could point to it!!
Things are good now, except my daughter had a fall at school and hurt her arm - the school called me and asked me to go pick her up - once we got home she accidentally slammed her fingers shut in the car door and for a few minutes could not open the door! What a horrible day! Her hand looks awful and blue!! She is a tiny and delicate little girl - so she may need a lot of my attention so please bear with me over the next few days as I may be slow in responding to posts and messages.
Sharmin
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Sharmin, am so sorry to hear that.. i hope her hand gets better quickly... and please dont worry, it will be okay.. give a lot of love and hugs to her frm me.. love, maako
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Thank you Maako,
It is so sad to see her one arm against her chest because the upper arm is sore (she fell off of a swing and as she stood up the swing swung back and hit her arm again) - and she is holding her other hand close to her belly protecting it. She will be better soon though, I am giving her advil for the pain. Injuries are inevitable in childhood.
My son is doing well on the other hand, but thank you so much for the advice on vitamin B! He must be deficient because he does get the sores a lot - I have never considered it a big deal but his eyes tear up when he is eating and they look really flared so I thought that I would finally ask...
Andy, when you have some time could you kindly post what kind of b vitamins and what dose would be appropriate for a 10 year old (27kg) boy? Thank you and please take your time as you have much more pressing issues.
Sharmin
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Sharmin,
What your son experienced with the sudden drop of neutrophils should open some eyes about another issue. Patients on L1 are routinely taken off L1 if their neutrophils drop. It is always assumed that they drop because of L1, but as you saw with your son, they can suddenly drop and it wasn't the chelator at fault. I stopped and talked to the people at the Apo Pharma booth at the conference and asked about what to do when neutrophils drop while taking L1. I was told that unless it is a severe drop, that the drug should not be stopped but rather the patient's white cells should just be closely monitored. Most patients will have only a temporary drop in white cells and there is no reason to stop their chelator unless it is a severe drop. I think far more patients would find L1 suitable if this was followed by doctors everywhere.
As far as B-Complex for children, B vitamins are water soluble so the normal preparations should be safe for kids too. just avoid anything that is a megadose as there are two B vitamins that can cause some problems in the mega dose amounts. The B-Complex preparations do not contain mega doses so they are quite safe. For a child I would recommend either cutting a B-Complex 100 in half or using the B-Complex 50 which is half the strength. Dr Wood very strongly recommended a good B-Complex separate from multi-vitamins which usually only contain minimal doses of B vitamins. He did also recommend a multi, so both are necessary. Check the links for examples of B-Complex.
http://www.puritan.com/b-complex-vitamins-021/b-100-complex-ultra-b-complex-capsules-010282
http://www.puritan.com/b-complex-vitamins-021/b-50-vitamin-b-complex-tablets-000583
Please take B vitamins with food. It is much easier on the stomach.
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Hi Sharmin ,
i m sorry t hear about Little A and your daughter , it seems that was a realy tough time on you , hope your daughter will recover soon as little a is doing , bcoze they both are lucky bcoze thay have a caring mother like you ... i hope tough time like this one will never come again .. wishing you & your Family a smooth healthy and joyfull ride of long life ... and also wish that they ( Little A and your daughter ) will recover very fastly ...
Best Regards
Take Care
Umair
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Thank you kindly my friends :hugfriend
The kids are both doing much better now. I have checked all of the in my daughters hand, I don't think she fractured anything. Little A's neutrophils were normal the very next day. When I heard about the neutrophils and saw the sores in his mouth, I was immediately tempted to stop the exjade. However I continued and found that the neutrophils went up the very next day - and within 4 days they were completely normal. Oakland and our doctor here have told us that neutrophils can drop with viral illness - for any child, therefore we must be careful not to blame the exjade (as Andy has said). Had I stopped the exjade we would have assumed that it was stopping exjade that made alleviated the neutropenia - which was of course not the case. It is amazing how many "normal" children if testing during a viral illness will have neutropenia. So, as Andy has said, this is a valuable lesson for everyone.
Andy, I have picked up a few supplements for my son because I want to start him up on everything now. I have purchased Jamieson Brand - B complex containing:
vit B1, B2, B3, B6, B12, Biotin, Pantothenic Acid all 50mg, Folic acid 0.4mg, choline bitartrate and inositol both 50mg
Zinc 50mg (is this too much?) (I am awaiting the Osteocare that I have ordered for him, I may then not need to give him the zinc)
Smart Squirts omega 3 - fish oil EPA 54mg, DHA 37mg, evening primrose 56mg, vit e 8 IU, vit A 1330 iu, vit D3 100 IU
I will also begin vitamin E 50 mg soon.
I hope this is a good place to start - it may also be good for other children in his age/size group once Andy reviews it.
It will be interesting to see what effect the B12 vitamins and carao have on his energy levels. Andy, I haven't given him any of the supplements yet - I will wait until you have had a peak at the ingredients and then I can post some of this for young children in our vitamins and supplements section - I will then also post updates with my observations there.
Sharmin
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Sharmin,
The Jamieson brand looks good and has the proper amounts of the various B vitamins. I don't think 50 mg zinc daily is needed. Half that amount should be sufficient. The other supplements are also good. I would advise a higher dose of vitamin E daily. At least 200 IU natural E daily for a thal child. I think you should start him on supplements. I think some products like carao and FPP will work better if the vitamins and minerals are also present as they seem to have an ability to enhance the value of the other supplements. FPP has already been shown to raise levels of vitamins and minerals and I think from what Lloyd has seen with carao, that is most likely happening with carao also. There are factors that are not yet understood but they are observed to be present. The cumulative effect of the supplements is what we want even if we can't then point to one specific supplement as more important. What we want is good health for everyone and whether or not it has been studied yet, we still have to continue with what we find does help.
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Thank you kindly Andy.
Surprisingly, I saw a multivitamin for kids today that contained tumeric...
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Sharmin, i wish my sweet little angel a speedy recovery. I know the pain cause i tried it.
hope everything will be much better :getwell :getwell :getwell :getwellin the coming days
manal
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Thank you so much Manal :hugfriend
She is already doing so much better. Kids are so resilient!
Thank you everyone - you have all been so kind!
Sharmin
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Aww, Sharmin I am really sorry to hear about her,give a big hug to her from me :bighug
Zaini.
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Thank you Zaini :hugfriend She is much better now.
Sharmin
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Another remedy i am seeing helping me with Canker Sores is gurgling warm water with honey. Don't know if anyone else has tried it.
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Thank you for that tip Narendra - my son is prone to canker sores and I will keep the warm water & honey in mind :)
Sharmin
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I found this link helpful for Canker Sores
http://www.natural-homeremedies.org/homeremedies-canker-sores.htm
There are quite a few remedies and tips on how to avoid Canker Sores.
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Very good site Narendra, thanks
manal
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Narendra ,
Very useful link buddy , thanx for sharing a very useful link .... :thankyou2
Best Regards
Take Care
Umair
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Thank you for providing the website Narendra :)
Sharmin
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HI
For canker sores, I usually dip a tamarind in a little salt and place it on the newly formed canker sore. It usually goes away after one or two days when I apply this otherwise it stays for much longer.
Hope this helps you
take care
Jade
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We call them aftes (een afte, an afte). (Canker with a K(anker) is cancer in Dutch so first I was confused). I have them a few times a year. They are very painful :thumbdown
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Dore,
it's not (Canker with a K(anker) or cancer, .. the canker sores are being discussing about look's like the pic below .....
(http://thm-a04.yimg.com/image/0a8bbea85d543712)
i hope i answereed right :grin witha right one image .....
Best Regards
Take Care
Umair
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Dore,
it's not (Canker with a K(anker) or cancer, .. the canker sores are being discussing about look's like the pic below .....
(http://thm-a04.yimg.com/image/0a8bbea85d543712)
i hope i answereed right :grin witha right one image .....
Best Regards
Take Care
Umair
Yes, I did understand that a canker sore is an afte in English. I typed it in a messy way. I know how they looks like. We do talk about the same thing. There are also people who got that virus and get them regular, thank god I dont have that. (knocks on wood :wink )
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Lil A is starting to get many canker sores again - they are very painful and he has a hard time eating :( He was better for a while and I had thought that the problem was resolved but for the last few months they have returned and I can see the pain on his face.
I hope there isn't an underlying issue that is causing them. I will also read up on everyone's responses to find possible ideas for solutions.
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Sharmin,
i m sorry to hear that Lil-A is in pain again here a few links about home remedie for canker sores :
http://www.natural-homeremedies.com/homeremedies_canker_sores.htm
http://www.homeremedycafe.com/canker-sore-remedy.htm
http://www.remedyforcankersores.com/index.htm
I hope these links will be helpful for you to cope with that ..
Best of luck , Health and everything lil-A , hope you will b fine soon , always praying for you little-Star ....
Best Regard &
Best Wishes
Umair
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Check the list of foods at this site and also check little A's toothpaste to make sure it does not contain sodium lauryl sulfate.
http://www.mayoclinic.com/health/canker-sore/DS00354/DSECTION=causes
Certain foods, particularly chocolate, coffee, strawberries, eggs, nuts, cheese and highly acidic foods, such as pineapple
Keeping a diary of all he eats and looking for a relationship between a specific food and an outbreak of canker sores may be of some help.
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Thank you Umair and Andy.
Sharmin
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Thats not the news I wanted to hear. I hope the pain will leave him soon!!!
Take care Little Mister A.!!!!
Best wishes, Dore
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Sharmin,
Have you asked Dr Vichinsky about that problem ?
Zaini.
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I might have told you this before. Canker sores are a wellknow side effect of some chemotherapy drugs. I have read once an article of treatment.there is medication for it. I will try to refind it. You ask it on other forums. You have no idea where it comes from? It's not that nasty virus that you can not beat? I mean it comes up a few times a year and for the rest is it like it doesn't exist...?
Hope he feels better soon!
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Hi Sharmin
Have you ever tried applying glycerine on the sores. It really gives instant relief and disappears in two days time. Usually a B-complex settles the matter but he is already on one and you do make sure he is adequately hydrated. I hope the little guy feels better soon.
maha
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Hi Sharmin,
How is Lil-A i hope he will be doing fine ... here are some quoets and links related to the canker sores ...
For Coplete Article : http://hubpages.com/hub/Mouth-ulcers
Application of raw honey on canker sores, blisters and mouth ulcers have been scientifically shown to reduce further inflammation. Furthermore massaging the gums with coconut milk and honey several times during the day also helps. Washing mouth with warm water with salt, application of "Bicarbonate of Soda" or alum on the ulcer, drinking beer or cranberry juice and the application of cider vinegar are all homemade remedies for curing and preventing further abscesses of mouth ulcer.
Modern medicine recommends antihistamines, antacids, corticosteroids and other soothing measures on the surface of the ulcer.
Hummm... i think its nothing harmfull to try , and i also think i found something usefull :grin i m really happy now :grin .. i hope it will relieve/ease the pain of Little-A , God Bless You Buddy , ..
Also check this list of medicines for mouth sores :http://www.globalrph.com/mouthlip.htm
About Canker sores & prevention : for Complete article
http://pinoydental.com/index.php?option=com_content&task=view&id=78&Itemid=124
Prevention
Oral and dental measures
Regular use of mouthwash may help prevent or reduce the frequency of the sores.[14]
In some cases, switching toothpastes can prevent mouth ulcers from occurring with research looking at the role of sodium dodecyl sulfate (sometimes called sodium lauryl sulfate, or simply SLS), a detergent found in most toothpastes. Using toothpaste free of this compound has been found in several studies to help reduce the amount, size and recurrence of ulcers,[15][16] but not in all studies.[17]
A few individuals have noticed that switching to a toothpaste with baking soda prevented recurrence of mouth ulcers.[citation needed]
Some people have reported that the frequency of mouth ulcer occurrences decreased greatly after a particularly large amalgam tooth filling was replaced by some other kind of dental restoration.[citation needed] However, the connection between amalgam fillings and mouth ulcers is not universally accepted, and such replacement can be costly.
Dental braces are a common physical trauma that can lead to mouth ulcers and can be treated with wax to reduce abrasion of the mucosa. Avoidance of other types of physical and chemical trauma will prevent some ulcers, but since such trauma is usually accidental, this type of prevention is not usually practical.
Take caution when brushing or flossing teeth, and be extra careful when using a toothpick.
Nutritional therapy
Zinc deficiency has been reported in people with recurrent mouth ulcers.[18]The few small studies looking into the role of zinc supplementation have mostly reported positive results particularly for those people with deficiency,[19][20]although some research has found no therapeutic effect.[21]
Julian Whitaker, M.D., founder and president of the Whitaker Wellness Center in Newport Beach, California, says that eating at least four tablespoons of yogurt daily can prevent outbreaks.[22] He notes that the yogurt must contain active Lactobacillus acidophilus cultures. (If the yogurt contains these cultures, it will say so on the label.)
Many people have found that taking Lysine-L supplements can help to reduce the frequency of mouth ulcer appearances and speed the healing of those that do occur.[citation needed]
Likewise, abstaining from arginine (lysine's counterpart), which is found in chocolate and nuts, can prevent an outbreak.[citation needed]
The presence of bacterially infected ulcers could be a symptom of intestinal bacterial imbalance.[citation needed] Probiotic supplements or 'good bacteria' found in food like yogurt will treat this condition.[citation needed]
Alternative medicine
Chinese medicine points to one's diet or emotions as potential causes of such symptoms of 'heat in the mouth.'[citation needed]
Greasy/fried foods or 'energetically hot' food (for example: spicy food, alcohol, potato chips) may also trigger mouth ulcers. Some claim that certain emotions, such as anger, frustration, resentment, or stress, can also impede the proper flow of one's energy and create 'heat' in the body, with such manifestations as mouth ulcers, red eyes, sore throats, insomnia, or constipation. In order to neutralize this 'hot energy' certain 'energetically cool' foods such as herbal teas and certain fruits and vegetables must be consumed. Some other examples of such 'cooling' foods include coconut juice (surprisingly the kernel is opposite and is classified 'hot'), mung bean soup, and ginseng tea
For complete article :
http://www.eugene-or.gov/healthierathome/p346-348%20Mouth%20Sores.htm
Self-Care / Prevention
To Treat Canker Sores
Mix 1/2 teaspoon salt in 1 cup of warm water. Rinse the mouth with an ounce of this mixture 4 times a day. Don’t swallow the water.
Put ice on the canker sore. Suck on a frozen popsicle.
Avoid spicy foods and acidic drinks like citrus juices.
Use over-the-counter products, like Anbesol, Blistex, and aloe vera gel.
Swish Mylanta or milk of magnesia around the mouth to coat the sore. Then spit the medicine out.
Take an over-the-counter pain medicine as directed.
To Help Prevent Canker Sores
Avoid things that injure or irritate the mouth, such as hot drinks and sharp objects.
Use a toothbrush with soft bristles. Use a toothpaste without sodium lauryl sulfate. Don’t brush too hard.
Take vitamins and minerals as advised by your doctor
Also Check this carefully :
http://dentistry.about.com/od/basicdentalcare/f/cankertreatment.htm
i hope all this will help you , and sorry for a long post ...
Best Regards
Tak Care
Umair
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I am sorry, I can't refind the info but I am happy to see that others can really help you.
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Umair, Dore, Maha, Zaini,
Thank you all so much for the info. It means so much :hugfriend
Sharmin
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Hi there
I hope you are all fine. Are canker sores same as Herpes? This virus remains in the body constantly and whenever there is a drop in immunity, it manifests itself through blisters and these blisters are highly infectious (should avoid touching them). Otherwise the virus remains dormant until the next drop in immunity.
Take care
Jade
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Hi Jade
Canker sores are more commonly known as mouth ulcers. Herpes is more like chicken pox, only more painful and severe.
maha
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Herpes simplex are cold sores that one gets on the mouth. They are not related to canker sores.
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I have heard and read about a new remedy: (High dosage of) Vitamine E!!!