IC and “Little Ones”: A look at the occurance of IC in children
IC and “Little Ones”: A look at the occurance of IC in children
Posted on Friday, January 14 @ 07:43:23 EST by admin
Interstitial Cystitis articles IC is daunting, frightening and quite often extremely painful. For many it rivals or surpasses the mot painful condition/disease or experience they have ever had in their entire life. Yet for most of us the onset of this condition did not occur until we were in adulthood. Though our lives were suddenly, dramatically changed we were able to look at things from a “grown-up” perspective. For children who develop IC this is not such a simple task, chronic pain is tremendously hard on adults, and even more difficult for children. A group, just as important as any other in the world of IC, who are sadly, all too often over looked.
The Epidermiology of IC has primarily focused on adults, because more adults develop IC then Children (for the purpose of this article children will refer to anyone under the age of 18), but that is not to say that kids can’t develop IC, because they certainly do.
I have never heard of or read about any cases of IC appearing to be present from birth, but I am incredibly curious if this has ever occurred. I imagine that initially it might not be noticed, as babies void in their diapers (nappies) and so the frequency might not be noted as easily as with a potty trained child. Pain resembling colic would perhaps be a sign, but as IC is:
1.) Relatively unknown in society.
2.) More common in adults than children
3.) Not detectable in urine tests/sample (although some research is being carried out in an attempt to find distinguishable urine markers for IC)
4.) Not characterized by any external signs (such as a rash, swelling or coughing)
It stands to reason that unless their was supporting evidence IC would not likely be diagnosed in very young children.
The question as to whether or not IC is genetically inherited or if you are genetically predisposed is a rather “hot” topic. IC has been seen in multiple members of the same imitate family, in twins and in mothers and daughters but as the occurrence is rare and no genetic marker has thus far be discovered there is not concrete evidence to prove whether this is a coincidence or an actual fact. The idea of genetically inherited IC is a catch 22 of sorts because the occurrence of IC in women of childbearing age sometimes (not always by any means) causes them (the female IC patient) to opt not to have children, or they may not be unable to conceive due to overlapping medical conditions such as Endometriosis. I am not implying in any way that IC could cause infertility, that is something that would have to be scrutinized and carefully studied by medical researchers before any solid conclusions could be made.
Not every condition/disease that one parent or both parents has or is a carrier of (meaning that the occurrence of said condition in encoded into their genes but it has not manifested any symptoms {yet}) develops in their children. The perfect example of this, is that not all babies born to HIV positive or AIDS mothers develops the condition (although the number who do is high, sadly). Obviously if it was genetic a woman who had her kids before manifesting IC symptoms would have passed along the gene (or genes) to her children, who would still be just as likely to be at risk for developing IC. And likewise the father could either have IC or carry the gene(s) and pass them along much like the mother. In the majority of genetically predisposed conditions/diseases if both parents either have the condition or carry the marker(s) it dramatically increase the chance that any offspring born to them will develop the shared condition/disease.
IC is predominately more common in women though numbers could reflect misdiagnosis of prostate conditions or urinary tract/bladder infections for IC; typically the numbers are cited at 90% women, 10% men. So if IC was genetic it could be carried by either sex. Of course being predisposed by either one or both parents does not mean that their child or children would necessarily develop IC, but it could theoretically put them at higher risk.
The question as to why IC does happen so much more frequently in women is one of great debate, because it calls into play the consideration that IC could be hormonally derived or influenced. A condition (such as IC) can have multiple causes or factors, which lead to its manifestation. For example cancer can be genetically inherited and it can also be developed due to other causes like radiation exposure or excessive sun damage. Yet it can appear for no known reason as well. IC could be (and research is pointing in this direction) the result of a combination of factors. Until a cause or causes is discovered only speculation and theory can be made as to its origins.
A study out of Seattle has shown that the median age of children who develop IC is 4.5 years, with (IC) diagnosis occurring on average a the 8 year mark. Yet in the patients they studied IC occurred as early as two years old. This corresponds to what I said previously in this article, that perhaps IC could be present at birth but not “discovered” until the child is potty trained and voiding habits are observed. Also by two years of age most children have developed strong enough verbal skills to convey pain or discomfort to their parent. The primary symptoms that the study observed were urinary frequency, urgency (sensory not motor urgency) and lower abdominal pain (81% found this pain to be relived by voiding).
This study carried out and published in the August 1996 Journal of Urology, by Close et al, showed that children with IC have diffuse glomerulations and terminal Hematuria. Almost 94% of the children they studied showed marked symptom improvement following hydrodistension, a number much higher then in the adult IC populations. They concluded that although uncommon IC does occur in children and should not be confused with other bladder conditions.
Children have the advantage over adults in the sense that they are still growing and that they produce different develops of certain hormones and cells then a fully developed adult does. Children naturally regenerate quicker and often more efficiently than adults do. But this does not exclude them from developing “adult” conditions.
Patients who develop IC later in life (after childhood/adolescence) often report that they had a history of bladder “problems” during their childhood, such as urinary tract infections (UTIs). As well those who reported having IC associated medical conditions such as Fibromyalgia, Irritable Bowel Syndrome (IBS) and migraine headaches also seem to more likely to develop IC. This important factor implies that IC could be due to many causes such as autoimmunity, nerve function, hormonal, inherited or somehow passed through infection. When a person develops more then one condition which are typically linked together we have to look at the fact that the combination of conditions becomes something like one giant condition/disease itself. In theory if all of the conditions are of unknown or uncertain causes/origions they could be stemming from the same cause or root problem, yet manifesting themselves in multiple parts of the body and often at multiple times.
Some IC patients develop IC before any other conditions but for others it’s the opposite, and yet others are fortunate enough in a way, to never develop anything but IC. If a child was already diagnosed with a related condition (or multiply related conditions) and bladder symptoms occurred IC might be suspected faster by the treating physician or even a well-read parent/family member. Likewise if a parent already had IC themselves they would be more apt to spot the symptoms in their child, having seen the condition develop in themselves either in their childhood as an adult.
One factor we have to call into play is the fact that children, sometimes are hesitant to complain about pain or symptoms, sometimes out of embarrassment, sometimes because they have been raised to be “tough” (think of the all too well known phrase, little boys don’t cry) and thus think it is nobler to suffer in silence. Certainly this is not always the case but it could throw off statistical numbers in terms of when symptoms truly manifested themselves.
Well meaning parents may also assume that their child has a bladder/urinary tract infection, even when urine tests come up negative for the presence of bacteria and administer antibiotic therapy, which most often does not relive any IC symptoms (unless both IC and a UTI is present, which can occur in IC patients of all ages). A doctor my not think that the child has IC or the idea may not occur to them, as the child is younger then any IC patient they have read about or encountered. Added to that mix is the fact while many doctors are becoming better educated in IC, others still cling to the ridiculous notion that IC is simply a self-manifested condition, more something of the mind then the body, despite extensive medical proof to the contrary.
A child’s health is in the hands of their parents, so the onus falls on the parent or parents (care givers) to continue searching for answers about their child’s health. Almost nothing has been published about the plight of parents whose children were eventually diagnosed with IC, so it is not easy to quote numbers, such as the quantity of doctors they saw before receiving a diagnosis for their child or what struggles they endured to get to that point.
If a child is found to have IC, that is at least an answer. The parents and child both have a name to put to a set of symptoms, but it is only the beginning of a much longer battle.
As pretty much anyone with IC will attest it is very frustrating and at times nerve racking to have a serious, often chronic medical condition with no external symptoms such as coughing, physical deformity or use of medical devices like a hearing aid or wheelchair. Aside from (in some cases) posture and the appearance of general fatigue, IC cannot be determined by simply looking at a person.
For children who have never experience a bladder infection they most likely have no basis of bladder pain to compare this (IC) too, it is new and horrifying. Their friends or peers aren’t peeing every half an hour and likely can not relate beyond empathy to the IC child. Situations like school become instant obstacles. While a letter written by the child’s doctor and given to each of the child’s teachers and the school principle(s) is a necessity, if frequency/urgency is a problem, the teacher might down play IC and not understand the severity of the problem. Which is why it’s a good idea to not only provide the teacher(s) with a doctors note but also copied information outlining what IC is, so that they can better understand it, and work with you for the well being of your child.
While very young school aged children (say 5-7) may not be upset if IC is explained in simple terms to their classmates, older children may (rightfully so) fear teasing, ridicule and bulling as a result of their condition, especially since it primarily relates to the bodily function of urination. This fear alone may cause the child to withdraw from social situations even if he or she has not told any of their peers, simply because they are terrified of that their “secret” will be discovered”. Also IC may exclude the child from participating in certain school actives such as physical education (gym class) or eating a cafeteria provided lunch (as the child should adhere to the basics of the IC diet). Other schoolmates may be afraid of IC, as children even when told something is not contagious, my still believe that it can be passed to them (the cooties myth may ring a bell). If your child is fortunate enough to have one or more close friends who don’t shy away from him or her, they (your child) should be encouraged to remain as active (play dates, no strenuous after school activities) as possible without of course, ever risking their health.
Some parents may opt to home school their IC child, some out of necessity (the child is too ill to attend school) or other out of choice, either theirs or that of your child’s. This has its pros and cons. The child is given the luxury of being at home and not having the stresses of public school life, but they are also missing out on peer interaction and social situations. It is important to point out that you may start your child on home schooling but the child should know that if he or she so choices they can return to public school at any time. If your IC child is telling you that they “hate school, don’t take this lightly, discuss with them the reasons why they feel this way and address each concern with genuine understanding and support. If you do not have IC, you don’t know exactly how your child is feeling, and chances are the majority of their concerns/problems at school are very real and need to be appropriately dealt with.
If your child is telling you that they are experiencing urinary frequency, urgency, pain while voiding or pelvic/bladder pain don’t try to treat them yourself such as by administering high volumes of cranberry products (cranberries though used in UTI treatment sometimes, are extremely hard on the IC bladder and should almost always be avoided by those with IC.) or even giving medication you yourself have on hand from prior UTI (or yeast infections in women/girls) that you-the parent-has used to treat UTIs with.
Immediately take you child to your family doctor, or if at all possible a urologist. If urine test and cultures come back negative, especially more than once (separate tests on different days) do not assume nothing is wrong, or that the condition may clear up on it’s own. Continue to prompt your child’s doctor for further diagnostic procedures. The myth that children are better able to handle pain is false, if anything they feel it more intensely and in different ways then adults do. If your child is not found to have a UTI it doesn’t automatically mean that they have IC but it does mean that this is a possibility which must either be determined or ruled out. If a doctor tells you you’re child can’t have IC, such as “If Sally/Johnny was a 45 year old woman not a 5 year old child, I’d say so, but kids don’t get IC”, politely look him or her in the eyes and say “I’m sorry but you are mistaken medical evidence proves your statement is false, children can and do develop IC”. Chances are you will also want to look for a new doctor for your child at that point as well, because while yes some doctors dismiss the idea that kids can have IC many others do not and will be able to provide the treatment and care that your child needs.
The majority of medications that are used to treat IC have not been properly or fully evaluated on children so dosage is at the treating physician’s digression. If at all possible try to get your child to see a Pediatric urologist, they are few and far between but they do exist, and if you ask your family doctor or your child’s urologist they should provide you with a list in your state/province/country.
If your child does in fact have IC, the doctor may prescribe anticholinergic medications (such as Detrol, Ditropan, Levsin and Bentyl) if there is extreme frequency but very little or no pelvic/bladder pain. These medication work by reducing frequency but are not effective on all IC patients. Elmiron has yet to be FDA approved for children under 18, so doctors may be hesitant to prescribe it, however many do and it often drastically helps the child. Instead, or in conjunction with Elmiron, antihistamines (to block mast cell production in the bladder) like Hydroxyzine may be prescribed. As are antidepressants such as Elavil. The use of medication being administered directly into the bladders of children with IC is very, very rare and typically not done.
Another factor to consider is that not all children (like adults with IC too) have pain, particularly pelvic pain and so a diagnosis may be harder to come by. And children who are wetting the bed should not be excluded from possibly having IC. Ultimately a cystoscopy with hydrodistention is the most accurate way to determine the presence of IC, and it is something that your child should undergo if their symptoms are persisting. Ideally your child should be under general anesthetic for this procedure (note that general anesthetic does carry a small risk of potential complications and even fatality in patients of all ages, but the risk is very minimal) as it is excruciatingly painful for most IC patients, especially if they have particularly sensitive bladders. At the very least your child must be given a strong numbing agent prior to the procedure being carried out. Also in either case, insist that a pediatric gauge (sized) catheter tube is used on you child. Catheters are gauged in increments known as “Frenches”, the smaller the French the smaller the diameter of the catheter.
If your child doesn’t show signs of IC under cystoscopy, they may have IC but it is not advanced enough to be visibly seen yet. Also symptoms of IC may be noted in childhood but full-blown IC does not manifest itself until later in life.
A non-invasive step to take, is altering your child’s diet to reduce potentially bladder hazardous foods such as tomatoes, citrus fruits most melons, caffeine, chocolate, carbonated drinks, excessive preservatives and sweeners, vinegar, alcohol, and spicy foods and seasoning (this is just a few items from what is generally recognized as the IC diet). Also by keeping a voiding diary, plus a list of what your child ate you can begin to see if patterns immerge between food and symptoms. Most IC patients do note a direct correlations between certain foods/beverages and an increase in their symptoms (a “flare”) and find that my eliminating or greatly reducing the amount of problematic foods hey eat, their symptoms may either improve or stay the same. This change in diet may be hard for some children to adjust to but they should be reassured that they can still eat many different foods and that this is to help them, not to punish them in any way. Usually once children realizes and see for themselves that particular foods cause flares or aggravate symptoms they will try to avoid the problem foods.
Just like in adults with IC your child may develop an aversion to drinking water, because they realize that whatever they drink must be expelled at some point and if they are already voiding very frequently they may try to avoid (either consciously or subconsciously) things, which could produce further trips to the bathroom. Yet this can lead to dehydration and a host of other medical problems. Encourage your child to drink water and other bladder friendly fluids as often as possible. Introduce liquid into their diet in other ways too such as serving soup or even popsicles made from bladder friendly juices (like pear).
Obviously older children will respond to IC differently then younger ones, IC and high school presents it’s own complex world of problems and situations. It’s a good idea to watch your child for signs of depression, suicide is not completely unknown amongst IC patients and teenagers are already considered to be a high-risk suicide group. If you do suspect your child is depressed talk to them, and ask them what is causing this feelings and how they (the child) feels that the problems can be solved, if necessary seek professional therapy but don’t force your child to go if they don’t feel comfortable doing so.
IC takes an emotional toll on everyone who develops it. Your child needs you unceasing support. They need to know that they can tell you about all their symptoms/concerns/problems and that you will not judge them or belittle what they are saying. IC is commonly a medical condition which produces chronic pain; chronic pain is not natural or normal at any age, and for a child it is even more scary because they may fear that they will never get better or will continue to get worse While you should never lie to your child, don’t tell him or her that they won’t get better, instead suggest that they might in the future and tell them that some IC patients do experience either temporary or long-term remission at some point.
Be there for your child. IC is not a fun thing to live with and they always need to know that you are their biggest ally as you face IC together. Insure your child that there is always hope and do whatever you can to make their life as comfortable and pleasant as it possibly can be. IC affects not just your child but you too. Assure your child that they are not the only one struggling with this condition, but that there are hundreds of thousands if not millions of people round the world with IC, and of course let your child know that IC is not a fatal condition, they will not die from it.
If your child is interested in learning more about IC, research together with them and discuss what you read, encourage them to become involved in the online world of IC (such as the forums here), and to connect with others who are also living with IC. If you were sick you would want to know all about the condition effecting you, why should children be any different?