Parachoc.
Say it out loud. Doesn’t it sound like it would be a brown sludge, tasting faintly of chemical chocolate and dripping, syrup like from the spoon. It does, doesn’t it.
So when I opened our bottle of parachoc and poured out white gloopy stuff, the consistency of glue and tasting like oil and sugar mixed together, it wasn’t quite what I was expecting.
Parachoc is used to help constipation in children – it’s a paraffin based softener, meaning that the stomach ‘apparently’ doesn’t absorb it, leaving it to help ease everything through the bowel.
To be honest, I’m doubtful this is going to help Isaac’s bowel problems.
Bowel Problems: A recap.
I’m not sure we’ve talked about Isaac’s bowel issues here yet. Anyway, he has trouble pooing. Lots and lots of trouble. To the point that sometimes, it takes him 24 hours after we first see streaks in his nappy for him to actually manage to poo properly and not just streak the nappy every 20 minutes. Sometimes it takes longer than 24 hours.
To begin with, I thought maybe it was a constipation issue. However, with lots of water, apples and veggies, he’s not constipated, he just has lots of trouble with bowel movements.
My personal feeling is that it’s a ‘floppy bowel’ issue, to do with the Ehlers Danlos – which I know in adults causes all kind of gut issues, mostly because I suffer from them myself. So why wouldn’t a floppy toddler be any different?
When we saw the Paed the other week, we discussed Isaac’s bowel issues AGAIN and he reiterated that he’d like to try Isaac on Parachoc, regardless of constipation.
It goes against everything in my nature to willingly feed my child paraffin, but we’re ticking the boxes and at least saying that we’ve tried the parachoc before the Paeds team tries something else.
I think the sooner we sort it out, the better, because my heart can only withstand so much screaming in pain, as I rub Isaac’s back while he sobs into my lap and tries to poo. It’s not a highlight of my week. And at the moment, we’re doing that every day.
So Parachoc. Maybe it will help. Maybe it won’t.
And at the end of the day, at least we will have tried it.
In other EDS stuff, Isaac has been dislocating his ribs. Le sigh. At the very least, I know how to relocate his ribs. His hand also made an awfully suspicious cracking sound the other day as he pulled away from me. It terrifies me that we’re seeing dislocations at 18 months – he’s so young. I worry about him and his future. Amy is getting bendier too and we’re slowly having to talk about how we’ll manage her EDS and school and Coeliacs and everything all rolled into one.
I try not to think about the bigger picture. The bigger picture scares me. We’ll just sort through the issues, one at a time.
Like always.
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{ 28 comments }
Oh Veronica
I can’t even imagine what you’re feeling. Bug is bendy and we think she might be Bendy with a Big ‘B’, and it terrifies me, but to actually watch her dislocate instead of just flop about and stretch in funny directions, would break my heart. It must be so, so tough for you.
I wish I could give you a big cuddle and a pat on the back and make you a cup of tea or whatever you drink for while you deal with Isaac.
Bowel issues scare me. I have IBS and bowel cancer runs in my family, related to the IBS. So when I see others with bowel issues (even though it’s EDS) I think about bowel cancer. Would any of the medications for IBS help at all? Just a thought.
When Emily first tried formula she was constipated and after 6 days Nath’s nan told me to give her brown sugar mixed in water, although I guess you’ve probably already tried that along with the other things to make Isaac poo.
I’d try lots of things, and do tonnes of research. I have bowel issues too and it’s no fun. Let us know how the parachoc goes.
^^^ What the first Fiona said. ^^^
That poor little boy. And how you keep your head on straight dealing with all this stuff I just don’t know.
(Oop… No EDS pun intended with the phrase ‘keep your head on *straight*’!)
Can’t give you any nice anecdotal stuff with the parachoc, had to trial it on the geek kid when he was little due to his bowel issues and it did nothing, but we could put a line through it having honestly tried it.
Good luck xxx
With the parachoc, if he swallows a wick with it, you will have a chocolate candle in a few days. Yum.
I actually wasn’t cringing until I got to the part about Isaac’s ribs. That poor little baby!
Deal with it one day at a time, it’s the only way to go. A long view is overwhelming at the best of times with small children. If Isaac, or Amy for that matter, is having a growth spurt would that impact on the bendy/dislocation issues at all?
Alternative suggestion for the bowel problem as opposed to parachoc, pineapple juice (the thick variety) worked for my ‘pebble’ producer if that’s any help.
Other than that I have only virtual hugs to offer for all of you.
Without the EDS issue, I’d suggest an additive to his cereal such as psyllium husk, it bulks and softens the poos and helps to tone the bowle so that it works regularly and properly.
But WITH the EDS isuue, I’m not sure it will help. But maybe you could give it a try? It can be baked into things like cakes, pancakes etc too, and stirred into yoghurt.
Poor little guy. Poor you. I think you’re 100% right about just tackling 1 issue at a time though. There is definitely head exploding potential if you don’t! All I can offer is big hugs.
x
Jayne – yeah, it’s not making much difference here either. He still screams in pain with every poo and now, every single nappy has poo streaks. Sigh.
Sharon – I would definitely try it, if I thought he was constipated. Issue is, he isn’t. In fact, he’s completely the opposite, but still screaming in pain and having major issues every single bowel movement. Not fun.
Gah, sounds awful. Popping ribs and floppy bowels, not a lovely combination. Good luck with the peads.
And very good luck with Amy and school. How do schools treat allergies there? I’m assuming that if the boy ever reacts again it will be at school.
Oh poor baby! Honestly Veronica, you are so brave! I don’t know how you do it. Hugs.xxx
Hugs. Kisses. Love. Happy psychic vibes…. I’m sending it all your way.
I’m sorry to hear about your son. Perhaps he may have an additional food allergy/intolerance that the doctors fail to diagnose.
Barbara – Hopefully they don’t order a Domino’s gluten free pizza [edited to remove a link] for Amy at school – especially with the risks associated with cross-contamination!!! Nonetheless, I’m sure Amy will do just fine, left up to her.
Veronica – I’m glad you’re willing to share your situations with us as I feel it’s important to get every bit of support you can, when you need it. I’m sure you’ll all get through this fine. Make sure the little ones get to bed on time heeheehheheheh!
There is no one perfect strategy in life for everything! Remember that!
Kelly – he doesn’t have food related issues, he’s clear for the coeliacs gene (which isn’t what the doctors told me at the initial visit, he was reading Amy’s report, we’ve since cleared it up) he is just bendy.
Also, links – leave your links in the relevant section, if people are interested they’ll click through. Gratuitous links aren’t polite, okay? And no, the school wouldn’t order a pizza for her, because it’s a SCHOOL. She will have a packed lunch and not be allowed to share with other students.
Domino’s Pizza offer school pizzas now. They’re quarter size and GF base available. I know, it’s unfortunate! If her teacher buys a GF one for her at a classroom party I guess that’ll be a worry! :S
So, I take it is Isaac off the gluten free diet now?
I’ve never had the experience of parenting so please forgive me if I don’t sound quite as understanding as you may be.
The teacher and I have spoken and she is more than willing to accomodate Amy’s dietary issues. The class also has a little boy with a peanut allergy and a few others with milder allergies.
Isaac is mostly gluten free, in that 99% of what we eat as a family is gluten free. Occasionally he has a square of sandwich with me at lunchtime, although he tends to prefer whatever Amy is eating.
Quoting Veronica:
More food allergies and intolerances are lurking up from everywhere! It was rather unheard of when I went to school! Interesting to see how much things have changed in 10 years. Out of curiosity, how common is EDS?
Kelly: Wikipedia’ing EDS will save you and Veronica time and get you answers faster. There are different types of EDS so there’s no one answer to your question.
http://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndrome will tell you everything you need to know, and if it doesn’t, I hear google is all kinds of helpful.
Also, your comment skates dangerously close to an unspoken suggestion that food issues may not really exist to the extent that they’re diagnosed.
I think, probably, food issue were almost just as common when you were a kid, but a) you didn’t discuss/pay attention to other kids dietary issues in the same way we do as adults, and b) food issues were woefully under-diagnosed. I’ve known I reacted to milk since I was about 14, my mother refused to believe I did so it wasn’t until my daughter had violent, severe allergic reactions to milk as a newborn that I got even close to a confirmation. In the meantime I just accepted that my symptoms were something I had to put up with as ‘normal’.
Your comments are debatable. I cannot actually say that they were an issue 50 years ago. The foods served at that time were far simpler.
1. Firstly, GM soy was virtually non-existent in our foods. It has only become a key ingredient in all our food products, etc. within the last 50 years. It is now in virtually everything. Amy can fill you in on it if you want further information on this, as she’s a soy allergy as well as gluten issues. I’m quite serious when I say it is highly likely that GM foods are responsible for many of our food issues today. I’m sure we’re past the worst of it, due to more effective diagnosis methods, however it is becoming a bigger, BIGGER and even BIGGER issue for many more people. CASE IN POINT: I recently heard (on the news or somewhere) that at least about 1 in 7 kids born (in about 10 years time (i.e. approx 2020)) are likely to have severe food allergies to various substances, many of which we don’t even know about. Though this does not remain a fact, there is certainly some problem with the food we eat today. Frogpondsrock’s blog (forgive me Veronica but I need to post this link just this once) http://frogpondsrock.com/2010/07/gobsmacked-was-the-word-i-was-searching-for/ discusses this quite clearly. Jamie Oliver explains it in his video on the aforementioned link – about child abuse, etc. The fact that kids can’t even identify fruits these days probably explains the vast range of highly processed foods they eat that may be leading up to a greater number of food allergies.
2. Secondly, yes, I believe that what you say is true, however it is also very clear that your daughter’s allergy is far more severe than yours. Based on your comments I’d imagine previous generations within your family had little or no reactivity to milk protein. It’s unfortunate, but I don’t think more effective diagnosis is the main revealing means of our food issues. I feel that our exposure to highly processed foods is not only causing individuals to react to these items but I feel that it is creating problems in all of our natural foods as well (i.e. salicylate, amines, etc. – all natural preservative-type products that people react to more commonly than ever today).
Veronica – Perhaps more frequent chiropractic trips may be of benefit…… I don’t know, you’d know more than me about your kids so I probably shouldn’t say too much.
Hi haven’t time to read all the comments so forgive me for possible repetition. My EDS daughter had exactly the same at the same age. Aside from the reasons for the constipation as we went through the same in appropriate adjustments to diet etc. to no avail. A handy chat with my health visitors proved helpful. She basically said that in part my daughter was associated bowel movements with pain so was resisting the urge to go and unable to express it properly because of her age and therefore resisiting the urge to go until it was absolutely necessary. The staining being a sign of constipation and the leackage inevitable. So we had to go back to basics and assume that she was constipated even if there was no staining as that indicated we were treating the problem too late. Because her situation had got to this we had no choice but to enema’s and then use lactulose? each day as a preventative measure until she basically forgot that pooing was painful. We found massaging particularly helpful there are good books on massaging for children as a general relaxant. The cause of the general motility problems was the EDS but it became an emotional issue for said toddler because of the pain association. Sometimes we found that too high a fibre diet would exacerbate irritable bowel symptoms and that gentle persuasion to assist bowel movements on an everyday level were better. Carrot, Muffins with oat bran were helpful not wheat bran. Prunes chopped up small were also as she loved them and would often gulp them down too quickly and they were not digested enough. Passing whole prunes is not particularly pleasant when little! Eventually she learned as she got older that not going caused more problems in the long run. The bowel problems still remain an issue with bouts or irritable bowel and constipation but she has learned they are triggered by stress also and bolting her food and not chewing to aid digestion. I totally think bowel problems in EDS are a misunderstood and not enough researched area in children and adults alike and many of us suffer too much in silence. Good luck with this as I know seeing one so young in pain and feeling helpless is incredibly stressful. A good friend helped me to learn to be incredibly calm when these episodes happened hence the massaging and relaxation stuff. For a while it made nursery difficult because of the soiling but they were very understanding and this was helpful. For a while we kept a diary but it was so long ago I am afraid I can’t remember if this helped us to see a pattern or not. Mine started in nursery a few mornings a week very young. Teaching her to take time to poo to make sure she was just not rushing also helped. This meant we used to spend ages in the loo basically her on her potty and me on the loo reading! His dad may come in helpful a little later on this one as he can do the man thing – you know that read the paper for hours to crap and he can sit on his potty etc and copy! For a while she had to put her nappy back on to poo after potty/toilet training which I guess was a comfort thing both physical and emotional. I remember the health visitor saying that some children go through a phase if they have had constipation when little where for some reason they think they are going to fall down the loo and much reassurance is needed on this front! Although this is obviously after the nappy/potty/toilet training phase. Breaking the cycle was hard especially with the EDS along with it and I have massive empathy for you and him on this one.
My favorite med in the whole world is Miralax aka Polyethylene glycol 3350. I honestly don’t know if it is available in Australia but it is safe for children. If the Parachoc doesn’t work it might be something to try.
For my hubby, who has IBS but not EDS, it worked far better than Lactalose. I went directly from senna, stool softener, and psyllium to the Miralax and haven’t looked back.
On another note my ribs have gotten much worse in the last week and I wish someone would explain too me how to put them back in. Especially the ones under my breasts in public *laughs*
My left hip was the worst as a kid. I’d never tell my parents I’d dislocated it, or anything for that matter, and would suffer in silence and put it back in myself. Issac is so fortunate to have someone who understands and believes him. Plus someone who can help him reduce his joints. It is sad that it is happening so young and that you know first hand what he’s going through.
Lisa – I get mine back in by stretching, getting Nathan to apply counterpressure and then wriggling a bit until they pop. The ones under my breast, well, I tend to just have to suck it up until it goes back in itself. If anyone else has any ideas for relocating ribs?
Just a point I forgot to mention. It is possible to have a bowel movement every day and still be constipated. According to my health book the bowel becomes so compacted and over full that small poos and streaks are forced out by the pressure.
I don’t believe this is the case with Isaac, but it happens.
Is it possible he has a small anal tear caused by the hard poos? These are extremely painful and would explain the screaming. I had one 15 years ago, needed a couple of stitches.
Just read achelois’s comment which makes a lot of sense.
Just read some stuff in the Corn Gluten post. I agree that this might be a problem. I have recently decided to trial a grain-free diet for 8 weeks. I am totally and completely eliminating grains from my diet and am sticking to nuts, seeds and legumes. My daily bread simply contains quinoa, tapioca, sugar (4%), salt, vegetable oil (canola), sesame seeds, guar and guar gum.
It is a very restrictive diet but I have felt like more than a million bucks since commencing on it
Perhaps you may like to try Amy on one of these, Veronica.
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