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My 12 year old- poor kid!

Posted , 4 users are following.

WorriedMum
WorriedMum

I really need some advice and reassurance.

My 12-year old son has been really ill with tonsillitis (a week of antibiotics and not eating), culminating in an attack of PF two nights ago, which (as we both didn't know what was going on and were frightened) lasted around two hours, coming in waves almost like contractions. I've never seen anything like it! Eventually (after an emergency appointment at the GPs and some ineffective local anasthetic cream) it was a warm bath and reassurance that helped him. Although I think he felt worried and had a feeling that it was going to happen again overnight (which it didn't, thank the Lord).

He has always been allergic to cows dairy. But having not eaten well for a week, probably dehydrated and on penicillin, I would imagine his "gut health" and vitamin levels were really low.

Now, knowing what this is, I think he has had it a few times before, when he was younger, following on from loose bowel movements. Previously he has been unable to clearly verbalise his pain, but the location, level and general "thrashing around" was of similar nature.

Is there a link with food allergies?

Also, he seems a lot younger than a lot of the sufferers (on the basis of web searches)?

As it doesn't appear to be happening spontaneously (well not yet anyway) I figure if I can keep him away from cow's milk (although accidental exposure at school is harder), good vitamin and gut bacteria supplements, plus a good diet, I might stand a chance of it not happening too often. He has only had three attacks in two years, so I am hopeful that this will not be a frequent visitor to our house.

There is a part of me that is less relaxed, I am also wondering if we should avoid sleepovers, also what if this happens at school? The rational part of me thinks we should just see if it happens again before getting too worried. The other part of me is concerned that this might happen when I am not with him, I am worried that he won't be able to manage the level of pain without help.

Any advice of any kind is really welcome.

Thanks

WorriedMum

0 likes, 9 replies

9 Replies

  • jodie_69995
    jodie_69995 WorriedMum

    Posted

    Hi my daughter has PF, diagnosed at 6. She's now 8 and has had it her whole life. It is very scary not knowing but be reassured that is not harming them in any way but to be blunt a PAIN IN THE BUTT. It's very painful and can have attacks on and off and come months apart. My poor daughter suffers severely. As in very regularly. Keeping this reply short as I could go on and on. Asthma puffer known to help. Soon as an attack starts have 3 puffs to get the muscle to relax. I have also found phenergan one high dose helps settle her (this is under our pediatrician so always good to check with your doc as all patients r different). Hot baths, sitting on a tennis ball applying pressure to the tectum area. Lots of distraction- drawing, reading, iPod! Before they are too sever some of these work. Walking helps some, sitting can aggravate the spasms. Just have to work out what works for your son. Hopefully you don't have this again. When my daughter is sick she has a flare up. She had croup and her attacks were horrible. Hours and nightly.

    Wish you all the best !

    • prayer
      prayer jodie_69995

      Posted

      I have been suffering from PF from last 7-8 years, it comes once or twice in six months, usually happens during sleep and wakes me up.

      I have discovered that the following exercise always works for me and relieves my pain in about 4-5mins.

      I lay down on my back and move my legs in the air like I'm cycling in the air... It always works for me.

      If I'm sleeping alone I do it on my bed itself, or if my partner is sleeping next to me then I do it on the floor to avoid disturbing partner's sleep.

      I hope it helps your daughter too.

      Regards,

      Prayer

  • jodie_69995
    jodie_69995 WorriedMum

    Posted

    Just saw this was posted over a year ago.

    sad

    • WorriedMum
      WorriedMum jodie_69995

      Posted

      Dear All

      We are now three years on, with a nearly sixteen year old.  I have to say that he no longer suffers.

      We had a very long journey however, with trips to A&E and enemas plus periods where he didnt go to the toilet for up to 20 days and a huge amount of pain.  Eventually we were lucky enough to be seen (privately I add, as we were fed up with getting nowhere with the NHS) by a consultant who was open to the concept of food allergy.  I was always extremely open with doctors about his mils allergy so I dont know why it took four consultations.  Anyway, he was eventually diagnosed with allergic proctocolitis and gastric dismotility, with associated PF.

      Anyway we excluded wheat, dairy and soya from his diet and he was better within weeks.  We then kept off everything for a few months, during which time we saw a reduction in the general pain, however he was still gettting the odd PF attack.

      We eventually reintroduced soya and limited wheat (if he eats too much he gets pain but not PF).  He still never has any mammalian milk (he was always allergic to cows milk).  Thankfull he has not had PF for over two years.

      Lovemuffin, I am so sorry to hear you have so many foods that are related, but........

      I absoluely completely agree with you it is food related!

      My son has always been allergic to milk, however it is interesting that an infection can alter the gut permeability to such an extent that these additional allergies can happen, and with such horrible effects.

      For him it isnt just the PF, that happened as well as other allergic events, but clearly it is allergy. And from the outside PF does look worse than childbirth.

      Now he just cant have dairy or too much wheat, we are in such a better place.  It must be hard for you with such a limited diet.

      I have also become a much more inventive cook.

      Jodie, Prayer, I hope that the food diary might help you guys too.

      Thank you all for your thoughts and help.  I know the post has been open for a long time, so I hope you are all in better places now.

      ​Worried Mum x

    • lovemuffin
      lovemuffin WorriedMum

      Posted

      Thank you so much for sharing this info. I have Kaiser and they haven't a clue. about this condition.
  • prayer
    prayer WorriedMum

    Posted

    I have been suffering from PF from last 7-8 years, it comes once or twice in six months, usually happens during sleep and wakes me up.

    I have discovered that the following exercise always works for me and relieves my pain in about 4-5mins.

    I lay down on my back and move my legs in the air like I'm cycling in the air... It always works for me.

    If I'm sleeping alone I do it on my bed itself, or if my partner is sleeping next to me then I do it on the floor to avoid disturbing partner's sleep.

    I hope it helps your son too.

    Regards,

    Prayer

    • WorriedMum
      WorriedMum prayer

      Posted

      Dear All

      We are now three years on, with a nearly sixteen year old.  I have to say that he no longer suffers.

      We had a very long journey however, with trips to A&E and enemas plus periods where he didnt go to the toilet for up to 20 days and a huge amount of pain.  Eventually we were lucky enough to be seen (privately I add, as we were fed up with getting nowhere with the NHS) by a consultant who was open to the concept of food allergy.  I was always extremely open with doctors about his mils allergy so I dont know why it took four consultations.  Anyway, he was eventually diagnosed with allergic proctocolitis and gastric dismotility, with associated PF.

      Anyway we excluded wheat, dairy and soya from his diet and he was better within weeks.  We then kept off everything for a few months, during which time we saw a reduction in the general pain, however he was still gettting the odd PF attack.

      We eventually reintroduced soya and limited wheat (if he eats too much he gets pain but not PF).  He still never has any mammalian milk (he was always allergic to cows milk).  Thankfull he has not had PF for over two years.

      Lovemuffin, I am so sorry to hear you have so many foods that are related, but........

      I absoluely completely agree with you it is food related!

      My son has always been allergic to milk, however it is interesting that an infection can alter the gut permeability to such an extent that these additional allergies can happen, and with such horrible effects.

      For him it isnt just the PF, that happened as well as other allergic events, but clearly it is allergy. And from the outside PF does look worse than childbirth.

      Now he just cant have dairy or too much wheat, we are in such a better place.  It must be hard for you with such a limited diet.

      I have also become a much more inventive cook.

      Jodie, Prayer, I hope that the food diary might help you guys too.

      Thank you all for your thoughts and help.  I know the post has been open for a long time, so I hope you are all in better places now.

      ​Worried Mum x

  • lovemuffin
    lovemuffin WorriedMum

    Posted

    My.heart goes out to your son and you. I have suffered so for over 40 years but it's gotten worse. And for me it is 100% food related. My pf feels like electrical surges of sharp knifes in my rectal,vaginal. cavity. The pain is worse than natural childbirth. Believe me...I labored 21 hours of completely natural childbirth and pf is worse.

    I'm intolerant to preservatives, soy, dairy ,latex, aspiin all nsaids and nearly all sugars including fruits. Sometimes. I can't comprehend the life diminishing changes that I face daily.

    I suggest you try a strict food diary for your son.

    • WorriedMum
      WorriedMum lovemuffin

      Posted

      Dear All

      We are now three years on, with a nearly sixteen year old.  I have to say that he no longer suffers.

      We had a very long journey however, with trips to A&E and enemas plus periods where he didnt go to the toilet for up to 20 days and a huge amount of pain.  Eventually we were lucky enough to be seen (privately I add, as we were fed up with getting nowhere with the NHS) by a consultant who was open to the concept of food allergy.  I was always extremely open with doctors about his mils allergy so I dont know why it took four consultations.  Anyway, he was eventually diagnosed with allergic proctocolitis and gastric dismotility, with associated PF.

      Anyway we excluded wheat, dairy and soya from his diet and he was better within weeks.  We then kept off everything for a few months, during which time we saw a reduction in the general pain, however he was still gettting the odd PF attack.

      We eventually reintroduced soya and limited wheat (if he eats too much he gets pain but not PF).  He still never has any mammalian milk (he was always allergic to cows milk).  Thankfull he has not had PF for over two years.

      Lovemuffin, I am so sorry to hear you have so many foods that are related, but........

      I absoluely completely agree with you it is food related!

      My son has always been allergic to milk, however it is interesting that an infection can alter the gut permeability to such an extent that these additional allergies can happen, and with such horrible effects.

      For him it isnt just the PF, that happened as well as other allergic events, but clearly it is allergy. And from the outside PF does look worse than childbirth.

      Now he just cant have dairy or too much wheat, we are in such a better place.  It must be hard for you with such a limited diet.

      I have also become a much more inventive cook.

      Jodie, Prayer, I hope that the food diary might help you guys too.

      Thank you all for your thoughts and help.  I know the post has been open for a long time, so I hope you are all in better places now.

      Worried Mum x 

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