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Proctalgia Fugax
Anyone have it or know someone who has?


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#1 rainbow4

Posted 25 July 2011 - 02:28 PM

Hi. My daughter has for the past 2 years or so suffered from symptoms which suggest proctalgia fugax, however children her age (8) don't seem to be "diagnosed" with it. We are seeing a new doctor this week so hopefully we will have some joy. Just wondering who else out there has dealt with it, especially children.

Thanks!

#2 frh4349

Posted 18 March 2012 - 10:06 AM

Yes!  My 4yo boy suffers from this.

He has ALWAYS had pain - which I thought was colic/reflux/abdominal pain - but as he has gotten older and is better able to show where the pain is coming from, he ALWAYS points to his bottom.  It seems excruciating for him.  Tests have revealed nothing.  But the pain comes and goes for hours at a time and the only thing that seems to bring him relief is if I apply pressure to his anus.  

One night is was so bad that he was as white as a ghost and almost passing out.  It was at that point that I rushed to emergency.  That was when the emergency doctor said that it was proctalgia fugax...but every doctor since is sceptical/dismissive because "children don't get proctalgia fugax".

Since he was a baby we have gone to paediatricians, oesteopaths, chiropractors, naturopaths, GPs x 4, and more. We have tried eliminating different foods from his diet - we started this even when I was breastfeeding him (ie. I eliminated the foods from my diet), but it all made not difference.

We are dealing with this in him usually twice a week, but it is not uncommon for it to be four times a week.  The pain usually wakes him around 10-11pm and keeps going until around 1am, but it can be longer.  I am so sleep deprived.  We have had nearly five years of this stuff!

Does this sounds like what you are dealing with?
I would love to hear if you had any insight/success with the doctor that you saw.
Good luck!


#3 joeygreen

Posted 18 July 2012 - 08:50 PM

Oh my gosh, I am so happy to find this. I think my daughter has this! She is four years old and has suffered with these pains on and off for about 2 years. She suffered from constipation since she was 2 and was given lactulose by the doctor.  This helped with the constipation but made her stomach bloat and gave her lots of wind.  She then began having these rectal spasms. She is awoken at night, usually between 9pm and midnight so similar to your son frh4349.  They lasted a couple of minutes then she would drift back off to sleep and then the pain would come again and again and again. This could last up to 90 minutes. She also presses her anus to try and relieve the pain. The pain can get unbearable for her. She cries and screams. We too have been asked about her diet but her diet is really quite good. We wondered whether it was an allergy to bread or something else. At our first appt with the paediatrician she was given mebeverine to help with the spasms and also changed the lactulose to movicol.  We were asked to come back in 6 months time.  We did and I only reported one 'attack'. She therefore discharged my daughter and said we could look at reducing the medication with a view to coming off. I hadn't even started to reduce the medication yet and the pains are back again. She has had 6 episodes in the last week. She has also passed a clear bubbly liquid on two occasions. I've been desperate because I know its more than just constipation. She passes a stool every day now and has done for a long while. Someone else suggested it might be proctalgia fugax and after reading up on it, everything fits in. It obviously does happen to children. My GP said she was going to contact the paediatrician and ask them to investigate further but I cannot wait so have tried to ring them direct myself today. My daughter starts school in September and is going to be absolutely shattered if she's up in the night like this, not to mention everyone else in the house.  Can you please let me know, both of you - have you had any luck with your doctors and paediatricians?  You're right it is an excrutiating pain for them and it breaks my heart that I can't do anything and the doctors don't seem to be able to help either!  Look forward to hearing from you. Many thanks

#4 Drsmudge2

Posted 23 September 2012 - 06:31 PM

Thank you for posting this, when I originally found your post, I was so relieved to find that it wasn't just us with a child suffering with this.  My little boy is 4 and has suffered with this on and off since he could talk - probably longer as he was always a dreadful sleeper when he was a baby!  

He has the same symptoms, sudden acute pain, when he shouts "ow my bottom".  It is transient but comes and goes for hours.  He gets very upset and tense.  At night, he will be asleep and the pain will wake him, when it passes (normally by me pressing his anus) he drifts off to sleep, but the pain shortly come back again waking him again.  It is very distressing for all of us.  

The reason I am posting today, is that we have found a solution that works for our little one.  I am a pharmacologist, having both a BSc and a PhD in Pharmacology and many years working in research.  However, I am not a medical doctor.  Whilst the treatment we use is purely over the counter medication, please check with your own health practitioner before trying it.  

One night my little boy had been suffering for hours and was utterly exhausted.  He was still screaming in pain, but was so tired, he was still half asleep.  In desperation I gave him an antihistamine (chlorphenamine).  It crosses into the brain, so makes people sleepy. We sometimes use it when he has a heavy cold to help him sleep.  My only purpose for giving it to him was to help him sleep.  Within 30minutes he was sleeping peacefully.  

I have to admit I was so shattered by the experience, I didn't think much more of it. A few weeks later he had another attack, and we tried all the ususal, warm bath, massaging his anus, pain relief.  Nothing worked.  Again, hours into the attack, I remember giving him the chlorphenamine last time.  I gave him some and again 30 minutes later he was asleep.  

Now I was interested.  I spent hours that night researching the literature to see if there were any reports of antihistamines being useful in proctalis fugax.  I came up with nothing, there is very little research done into it.  I guess it is not deemed serious enough a problem to warrant spending the money on the research (but I won't get on this soap box!!).  However, I did (re)discover that histamine receptors are in the gut and can cause contractions.  

I decided to try a non-sedative antihistamine the next time my son had an attack to see if it was the sedation that was easing the attack or the antihistamine working on the gut.  The next attack that came, I waited until he had shouted "ow my bottom" 3 times before giving him the medicine (loratidine).  Again the attack subsided (normally once he starts with an attack it is with us for hours).  

Today he had another attack and this time I used loratidine on his first cry, the attack did not continue.  

I am convinced that the antihistamine is working on his gut relaxing whatever it is that is spasming to cause his pain.  I am using a large dose (based on the maximum I can give him for his size).  I don't know if this might work for your children, but as these are well established, safe medicines, it might be worth a try (again please check with your health practitioner).  I assume that the doctor will tell you there is not any evidence that it will work (they will be right, there isn't, I have searched for it).  However it does work for my son, so I would suggest the question you ask is "is there any harm in trying this solution".  

Good luck, I hope you all get some respite from this horrible condition.
x

#5 ppt

Posted 19 October 2012 - 10:19 AM

My daughter was diagnosed with proctalgia fugax by a GP doctor when she had extreme night pain spasms in her anal and vaginal passages, however when we finallly were at our wits end and went to the Royal Childrens Hospital in Melbourne looking for some answers as to how to deal with the pain in the middle of the night, we received the BEST NEWS : they hadn't even heard of proctalgia fugax in children, in fact they believe this pain to be often caused by an acute case of WORMS! Worms don't just cause itchy bottoms, worms can cause the same symptoms of proctalgia fugax, and even if you have wormed your child as I had, you may need to do it again as its easy to become reinfected. So before you accept a diagnosis of proctalgia fugax it is definitely worth trying worming your child. You can see the Combantrin website for directions and information or speak to your chemist (I found my chemist more helpful than my GP). I was told to worm the child with the pain AND the whole family and then 2 weeks later do it again to be sure, plus we were told you need to wash and clean everything, toys, sleeping sheets, clothes, everything! (it's like getting rid of lice was the similarity they said). I had no idea that simple worms could cause this type of pain and obviously neither did my GP. Good luck mums, we don't need any extra worries on our plate, I hope your cases are just worms too because I was so relieved to hear it was very unlikely to be proctalgia fugax. Imagine my daughter's relief to hear too that she didn't have to put up with these painful episodes the rest of her life! I hope your cases are just worms too and you can hopefully be rid of those dreadful nights too.

#6 joeygreen

Posted 05 February 2013 - 12:31 AM

Drsmudge2 - thanks for your comments re antihistimines. I've just taken my daughter to see the paediatrician again who has asked again for us to try and ween her off the mebeverine. She has suffered one 'spasm' in October and two in January. Last time they wanted us to try and ween her off it was when she had an attack every day for about a week so I'm very nervous about this although we will of course try again.  I asked the paediatrician for more information on Proctalgia Fugax and asked whether she'd experienced this before. She said she didn't know much about it at all and never dealt with it before as it was mainly in adults. I therefore asked her to send me any information she could find as its difficult to find anything on the internet with regard to children.  It would be good to try and find a support group or forum somewhere.  We are in the UK by the way.  
I think I'll visit my daughters GP and ask about the antihistimines. It's definitely worth a try. I'll let you know how we get on.
PPT - thank you for your comments too. Although my daughter has been tested for worms too and on all occasions this was not the case with her.


#7 debbiey

Posted 10 May 2013 - 10:33 PM

We just visited a Peadiatric surgeon today who diagnosed my son as suffering from rectal spasms - She didn't specifically call it proctalgia fugax but I'm assuming that is what she is referring to as symptoms are a pretty good match. Sometimes symptoms go for much longer than all the descriptions of this condition. We had 6.5 hours of crying and screaming the other night which was the worst ever. Sounds like lots of you all have really extended bouts of it too.

Will definitely give the antihistamine a go as we haven't had any luck with panadol, nurofen, rectinol or rectogesic. My little one initially had worms which can be one of the initial triggers for the spasms apparently. We gave him multiple doses but pains kept coming back and stool samples showed no trace of worms.

One thig I'm curious about is impact of food on it. The dr today said it might be worth keeping a food diary. Has anyone else had any experience with food affecting the episodes. I'm particularly interested in effect of citrus. The last two or three episodes my 4yo has gone through have been on days he has eaten 2 or 3 mandarins. So, am just wondering...

Anyway - now that I know what to call it, it was great to be able to do this search and hear we're not alone. Thanks everyone.

#8 joeygreen

Posted 14 February 2014 - 05:22 AM

Hi debbiey,

Sorry to hear your son is also suffering from Proctalgia Fugax.  My daughter is also still suffering but not as often. Her last 'attack' was in October 2013. She's still on the Mebeverine and Movicol. She's having tummy ache as well every day and although my query about the problem possibly being bread to her paediatrician some time ago was rejected, at our most recent visit in January she wondered whether something like wheat might be the problem.  My daughters stomach bloats a lot throughout the day (she wears age 7 clothes and is only 5 just so the waist isn't tight on her tummy) and although she goes to the toilet every day, she's still quite blocked and this is therefore giving her tummy ache and she is extremely windy which embarrasses her immensely.  We wondered about Crohns disease so she has been tested by a blood test and we await the results. This is unlikely however as she isn't losing weight.  Depending on the results, she will then be referred to a dietician to try and eliminate some food groups to see whether anything she's eating is causing the problem so its interesting you ask that question also. I'll let you know when we get the results.

#9 Lovemy2kids

Posted 14 February 2014 - 05:52 AM

I'm sorry to read about all these kids suffering from this painful condition. I'm not much help with kids suffering proctalgia fujax but I do know that in women it is very successfully treated in one or two sessions with a women's health Physio doing relaxation/massage /trigger point therapy on the pubotectalis muscle as I understand it is a spasming of this muscle that causes the pain.

#10 debbiey

Posted 21 July 2014 - 11:25 PM

Thanks for this additional information.  My son's condition has been a lot more manageable recently and we are reducing severity and length by a warm bath, distraction (watching octonauts on the iPad whilst in the bath!) and pain stop (not sure if it is the pain relief element or the antihistamine element that is working but I don't care which as it really works!).  From his first complaint, we normally get him back into bed asleep within an hour now and there is no screaming associated with it anymore.

It still comes and goes - we won't see any signs of it for ages  (sometimes a couple of months) (we did a seven week caravan holiday last year and it didn't occur once thank goodness - can you imagine it in the middle of a caravan park? I had a large bucket, hot water bottle and pain stop at the ready just in case...) but then we might have it 10 times in two weeks...

We also tried salbutimol (ventolin liquid) after I did some research and spoke to the GP about it and he was prepared for me to try it, didn't seem to help though...

Still can't determine any trigger but could possibly be worse with tiredness and minor dehydration.

joeygreen - How did you go with your daughter with the food testing?

drsmudge2 - Trying my son on the antihistamine seemed to help - so thanks for this advice.


Debbie

#11 Jods03

Posted 22 January 2015 - 09:47 PM

My daughter is 7 yr old and we have gone through it all. From birth, was suspected reflux/ colic from the crying episodes. We have gone through diet eliminations, spent $1000's on natural paths, Chrioprators, massage therapists... Was diagnosed with proctalgia when she was 5 from gastrologist.  After having a sigmoidoscopy, all was clear. Now seeing a pediatrician with also possible abdominal pain syndrome. All linked together. What starts her attacks I have no idea. Food isn't realted. As it's never consistent. My daughter was put on gabapantine... 300mg and was talking osmolax daily. All her attacks settled a little. Doctors wanted to see if the medication really helped so to see we had to take her off the medication ... We are now on 4 days / nights in a row with pain. Not keen on her taking this medication long term as was pediatrtion so she may be put on something better long term. I just wish there was more research. It seems to be getting more common. I have found phergan has worked a few times. Not always too.

#12 Jods03

Posted 23 January 2015 - 10:35 PM

View PostDrsmudge2, on 23 September 2012 - 06:31 PM, said:

Thank you for posting this, when I originally found your post, I was so relieved to find that it wasn't just us with a child suffering with this.  My little boy is 4 and has suffered with this on and off since he could talk - probably longer as he was always a dreadful sleeper when he was a baby!  

He has the same symptoms, sudden acute pain, when he shouts "ow my bottom".  It is transient but comes and goes for hours.  He gets very upset and tense.  At night, he will be asleep and the pain will wake him, when it passes (normally by me pressing his anus) he drifts off to sleep, but the pain shortly come back again waking him again.  It is very distressing for all of us.  

The reason I am posting today, is that we have found a solution that works for our little one.  I am a pharmacologist, having both a BSc and a PhD in Pharmacology and many years working in research.  However, I am not a medical doctor.  Whilst the treatment we use is purely over the counter medication, please check with your own health practitioner before trying it.  

One night my little boy had been suffering for hours and was utterly exhausted.  He was still screaming in pain, but was so tired, he was still half asleep.  In desperation I gave him an antihistamine (chlorphenamine).  It crosses into the brain, so makes people sleepy. We sometimes use it when he has a heavy cold to help him sleep.  My only purpose for giving it to him was to help him sleep.  Within 30minutes he was sleeping peacefully.  

I have to admit I was so shattered by the experience, I didn't think much more of it. A few weeks later he had another attack, and we tried all the ususal, warm bath, massaging his anus, pain relief.  Nothing worked.  Again, hours into the attack, I remember giving him the chlorphenamine last time.  I gave him some and again 30 minutes later he was asleep.  

Now I was interested.  I spent hours that night researching the literature to see if there were any reports of antihistamines being useful in proctalis fugax.  I came up with nothing, there is very little research done into it.  I guess it is not deemed serious enough a problem to warrant spending the money on the research (but I won't get on this soap box!!).  However, I did (re)discover that histamine receptors are in the gut and can cause contractions.  

I decided to try a non-sedative antihistamine the next time my son had an attack to see if it was the sedation that was easing the attack or the antihistamine working on the gut.  The next attack that came, I waited until he had shouted "ow my bottom" 3 times before giving him the medicine (loratidine).  Again the attack subsided (normally once he starts with an attack it is with us for hours).  

Today he had another attack and this time I used loratidine on his first cry, the attack did not continue.  

I am convinced that the antihistamine is working on his gut relaxing whatever it is that is spasming to cause his pain.  I am using a large dose (based on the maximum I can give him for his size).  I don't know if this might work for your children, but as these are well established, safe medicines, it might be worth a try (again please check with your health practitioner).  I assume that the doctor will tell you there is not any evidence that it will work (they will be right, there isn't, I have searched for it).  However it does work for my son, so I would suggest the question you ask is "is there any harm in trying this solution".  

Good luck, I hope you all get some respite from this horrible condition.
x





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