DownSyn Forum

beckysmum · Posted: July 27 2012, 2:48 AM Post subject: Pain and blood passing stools

Hello we are looking for some advice from parents who have experience with bowel problems.
Rebekah has a very sluggish bowel and takes stool softening powders to ease constipation but for the last 6 months she screams hystericaly when she is passing the stool even though its soft and at least half the time bright red blood is mixed through the passed stool, there are no visable fissures or piles.
I informed her paedeatrition when it started and she just brushed it off saying it was because she was passing hard stools but this is not the case becsuse of the medicine she takes and there is still pain with blood half a year later !!!
I have taken her back to my doctor several times and each time im told oh its just constipation, ive been waiting 2 weeks now just to hear from her paedetrition to get her sn appointment and im pretty much just getting ignored meanwhile Rebekah screams in pain with every poo Sad

shes now holding it in for as long as she can then letting go in her bath where the warm water must be helping. It is distressing for her and im in tears with her sometimes because I feel helpless to ease her pain.
Shes never been examined or had any tests for this issue, surely this cannot be right ?
Does anyone have any ideas or similar issues , thanks as I said im waiting on an appointment thats taking forever x

_________________
Claire & Chris , Mum and Dad to Bethany 05/03/1998 Calum 03/09/2004 Rebekah DS 13/01/2011

Edensmama · Posted: July 27 2012, 7:45 AM Post subject:

Oh, poor little thing! Sad

I don't know what it is but I say you should definitely trust your mama instinct. Crying and blood with soft stool is NOT right. Plus, maybe you need to get a new pediatrician who actually listens to you. Mad

That makes me so mad! I hope you get some answers soon!!

_________________
Nathalie
Mom to Eden (DS) 4-13-08
Wife to Luciano (the best daddy in the world) since 10-8-2005
www.caringbridge.org/visit/edensalem

Tigger · Posted: July 27 2012, 8:00 AM Post subject:

I have no experience with that specific issue but I do have experience with doctors not listening to me about Talitha. When she was very small she would vomit a mixture of old and new blood and then stop breathing. In the end I took her to the paediatrician and refused to leave until he did something. Fortunately she did it while in his office and within a week she was in the children's hospital and she was getting appropriate treatment.

Unfortunately I have had several similar experiences where I have had to be very assertive, one time I was worried they would call security because I was so angry and upset at their reluctance to believe me and to treat Talitha appropriately. Eventually she got the treatment she needed but I felt it was a terrible thing that I had to fight so hard for her to get it. Evil or Very Mad

You might need to fight them on this and insist that she be urgently referred to a specialist even if that means you go to a different paediatrician. We had to at one point. It sucks but if you get someone who won't listen to you there aren't many other choices. Sad

Poor kid, I hope you get some answers soon.

_________________
Karyn
Mum to Nikki (Jul 89), Stefanie (Sep 96), Joel [June 98] and Talitha (DS) (Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14

TheBradyBunch · Posted: July 27 2012, 9:34 AM Post subject:

Are you waiting to see your pediatrician or a GI Dr? I would think this is a GI issue and beyond a ped's expertise. I'm fairly certain that blood in the stool, that is bright red, needs to be checked out, especially if it's not just a one time thing

_________________
Mom to: Nicholas (May/02), Nathan (April/04), Charlene (June/06), Noah (DS, ASD) (May/07), Jesse Lynn (July/08 ), Tessa (Apr/10), Kaitlyn (Jun/12)

"Sometimes the things we can't change end up changing us"

beckysmum · Posted: July 27 2012, 11:53 AM Post subject:

Thanks for all your responses im at my witts end I phoned the peads office 3 times today and keep getting palmed of with her secretary saying the waiting list is long and we are trying to see if we can sqeeze her in , told id be phoned back and yet again nothing grrrrr so on Monday im going up to the hospital and not moving till I get an appointment.
Bradybunch it works different in Scotland, beacause we dont pay for any of our health care there are waiting lists that we cant do anything about and we literaly get who wr get like it or not , we have a family GP Doctor who is always the first port of call who refers us up to the local hospital then our child has a paediatrition who sees the child firstly and then refers on to the proper depatment for tests etc then all results go back to the paed and they discuss results or what further action is needed etc , this process takes ages and Its crazy cause they know a little about everything so when something specific happens like this I dont want their opinion I want a consultant in that areas opinion.
Tigger thats terrible treatment with poor Talitha just aswell you fought for her and got things done , im going to take a leaf out your book, my poor girls in so much pain at poo time Sad

xx
I will hopefuly be able to update you all that action has been taken on Monday x

_________________
Claire & Chris , Mum and Dad to Bethany 05/03/1998 Calum 03/09/2004 Rebekah DS 13/01/2011

LinMac · Posted: July 27 2012, 12:06 PM Post subject:

I've no experience....just wanted to wish you Good luck on Monday Claire!

_________________
Linda & John
mom to Hannah Kate (Age 14 ), Robert (Aged 9 - DS)

First Communion Day

beckysmum · Posted: July 31 2012, 5:31 AM Post subject:

I got on the phone and complained politely till I go an appointment , its for the 20th of August so hopefully get to the route of the problem Very Happy

x

_________________
Claire & Chris , Mum and Dad to Bethany 05/03/1998 Calum 03/09/2004 Rebekah DS 13/01/2011

JanetG · Posted: August 08 2012, 12:49 PM Post subject:

What kind of milk is she on? Has anyone mentioned food or dairy allergy or sensitivity? It sounds just like my (typical) son. Turns out he was allergic to corn, rice, and egg whites. He also was sensitive to milk proteins. When we cut those things out of his diet, his poop issues vanished. Just a thought...

_________________
Janet (47)
Joshua (angel) '85 (1 day old)
Sarah-age 25
Jaret-age 8
Jacey-born 2/22/08 (dx w/ Ds 9/10/07)

beckysmum · Posted: August 08 2012, 2:41 PM Post subject:

she drinks full fat cows milk , I will deffinately bring it up with her pead , every avenue needs to be looked at , thank you

_________________
Claire & Chris , Mum and Dad to Bethany 05/03/1998 Calum 03/09/2004 Rebekah DS 13/01/2011

TheBradyBunch · Posted: August 09 2012, 10:38 AM Post subject:

I know I can't drink milk, well at least not much of it, and definately not full fat or I get bad diarhea and stomach aches. Maybe try replacing her full fat cows milk with something else and see if it eases up? All of my kids have been lactose intolerant as babies, it's usually not until about 3ish that they can start drinking 1% milk without issue. Full fat equaled projectile vomit with my first amongst other things so I have never tried it with anyone (other than Noah) after that. It didn't work for Noah either (I was desperate at that point, he was underweight and so I mixed his formula with full fat milk...bad idea)

_________________
Mom to: Nicholas (May/02), Nathan (April/04), Charlene (June/06), Noah (DS, ASD) (May/07), Jesse Lynn (July/08 ), Tessa (Apr/10), Kaitlyn (Jun/12)

"Sometimes the things we can't change end up changing us"

beckysmum · Posted: August 09 2012, 2:17 PM Post subject:

Thanks bradybunch im going to buy her soya milk to try out , so fingers crossed

_________________
Claire & Chris , Mum and Dad to Bethany 05/03/1998 Calum 03/09/2004 Rebekah DS 13/01/2011

JanetG · Posted: August 10 2012, 8:50 AM Post subject:

Just a follow-up thought. Many kids who are allergic to dairy are also allergic to soy. You may want to try something other than soy like almond milk (which is delicious, btw). FWIW, my son has outgrown his issues and can drink regular milk now w/ no issues. Good luck! I know how hard it is to see your little one in pain!

_________________
Janet (47)
Joshua (angel) '85 (1 day old)
Sarah-age 25
Jaret-age 8
Jacey-born 2/22/08 (dx w/ Ds 9/10/07)

Karien · Posted: August 10 2012, 12:12 PM Post subject:

I remembered that we previously had a similar thread and found it. If I cankt get the link posted, it was by Maggiebeth25 and it w as under questions-28 Sept 2011
http://www.downsyn.com/phpbb2/viewtopic.php?t=46693&highlight=blood+stoola+allergy
I see neocate was the answer. Hope this is helpful

_________________
Karien: happily married to Neels
Mom to Ewald (19), Eduan (16), Alvin (12) and KALLEN 6

beckysmum · Posted: August 20 2012, 3:34 PM Post subject: UPDATE

Hi ladies , well today we saw Rebekah's paed and explained everything thats going on and now they are setting up loads of tests to get to the bottom of things such as, poo cultures , ultrasound , blood work etc etc they say they are going to test for bowel diseases , also going to be looking for any narrowing of the intestine at her anus and all othet intestinal things Ive never heard off , so now im more worried than I was before cause id never heard of the cinditions she was talking off !!
She is being sent to Yorkhill Childrens Hospital to a specialist in that field so hopefuly in a few weeks I will know if its something simple or something more.
I brought up the subject off food allergies and she says the symptoms Becky had dont match a food allergy , but ive put her on the Almond milk which she loves and cut out all dairy , wheat and gluten and replaced them all with alternatives because if I dont try I just wont know Smile

Thank you all for your input x

_________________
Claire & Chris , Mum and Dad to Bethany 05/03/1998 Calum 03/09/2004 Rebekah DS 13/01/2011

Tigger · Posted: August 21 2012, 12:22 AM Post subject:

So glad you are finally getting some action from the medical experts. It is scary when they come at you with all the possible scenarios but it is great to get answers and be able to make our kids lives easier by treating those issues.

How is she doing on the modified diet?

_________________
Karyn
Mum to Nikki (Jul 89), Stefanie (Sep 96), Joel [June 98] and Talitha (DS) (Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14

LinMac · Posted: August 21 2012, 2:48 AM Post subject:

I'm glad you got a thorough response from your doctor.

One small point to bear in mind..... The blood test for celiac disease is one that tests for the presence of antibodies, so you need to have wheat in your system otherwise you might get a false reading.
I don't know if this is the case for the biopsy testing.....talk with the specialist about this. Maybe another member here might know?

Good luck with the tests.

_________________
Linda & John
mom to Hannah Kate (Age 14 ), Robert (Aged 9 - DS)

First Communion Day

beckysmum · Posted: August 21 2012, 3:29 PM Post subject:

LinMac thanks for that I never considered that , I will make sure I tell them , infact this answers tigger too Very Happy

im not seeing any difference so far with the change of diet but she is really enjoying the new milk so will be keeping her on that for sure but im still going to perservere for longer to get a true picture of any change.

Yeah its scary hearing that shes going to get tested for all these things , ive never had to deal with any health issues uptill now Sad

for any of my children.

_________________
Claire & Chris , Mum and Dad to Bethany 05/03/1998 Calum 03/09/2004 Rebekah DS 13/01/2011

LinMac · Posted: August 22 2012, 2:37 AM Post subject:

Claire

My mom has Coelic Disease (sp) diagnosed in her late 40's so I had some understanding of what it meant before Robert came long.
Because of the genetic link our doctor has tested Robert every year cos of the higher incidence if you have it in your family line and there is also a higher incidence of CD in the DS population.

Robert never had any wheat for the first year of his life, but inorder to test him I had to give him wheat based products.
Its funny Claire, he now won't eat any bread or biscuits or cakes, only rice cakes.
I'm not sure if that's to do with the fact that he didn't get wheat in his early months or if he's just not drawn to wheat based foods!

I know its a bit worrying but you'll get peace of mind once you see the specialist and get the tests done.

_________________
Linda & John
mom to Hannah Kate (Age 14 ), Robert (Aged 9 - DS)

First Communion Day

TheBradyBunch · Posted: August 22 2012, 9:14 AM Post subject:

Even for the biopsy there has to be gluten in her system.

On a side note. Along with projectile vomit on whole milk, my son had diarhea, really dry itchy skin and a wet cough all the time. My dr thought maybe asthma so put him on a nebulizer. It didn't work. Once I got rid of the milk, all of those symptoms went away with it.

My cousin just recently went through a bought of never ending diarhea with blood, she had testing done and through the probe they found she had hemmeroids in her intestines which were causing the blood.

I always know if Noah has been able to get some gluten, he gets a rash on his face and his stimming increases 10 fold. I never did the biopsy with him for the celiac testing. They wanted me to put him back on gluten for at least a month. I still won't do that to him because I know what he looked like when he did have gluten, and I know what he was like, and I'm not interested in putting him in pain just for some dr's satisfaction for a test.

I hope everything goes well with GI. They'll get it sorted out for you Smile

Here in Canada we have to wait too (same type of healthcare as you have). It can be very frustrating and it takes so long to get things worked out for our little ones because we are constantly waiting for OR time or even the first appt to see a specialist.

_________________
Mom to: Nicholas (May/02), Nathan (April/04), Charlene (June/06), Noah (DS, ASD) (May/07), Jesse Lynn (July/08 ), Tessa (Apr/10), Kaitlyn (Jun/12)

"Sometimes the things we can't change end up changing us"

JanetG · Posted: August 24 2012, 3:02 PM Post subject:

After reading the rest of the posts, I had a couple other comments. Dairy takes about 3 weeks to be out of your sistem, so you may not see results right away. Also, look on the internet - there are tons of things that contain milk products. Check labels closely.

Interesting that a doctor told you her symptoms are not allergy related. My son's were exactly like Rebekah's.... As soon as he was free of dairy (and his other allergens), the improvement was dramatic. When Jacey was 14 months old and we started her on cow's milk, within a week she started developing eczema on her face. Put her immediately on almond milk and it went right away. She hasn't had any problems since.

_________________
Janet (47)
Joshua (angel) '85 (1 day old)
Sarah-age 25
Jaret-age 8
Jacey-born 2/22/08 (dx w/ Ds 9/10/07)

JanetG · Posted: August 24 2012, 3:03 PM Post subject:

Duplicate post... sorry.

_________________
Janet (47)
Joshua (angel) '85 (1 day old)
Sarah-age 25
Jaret-age 8
Jacey-born 2/22/08 (dx w/ Ds 9/10/07)

beckysmum · Posted: August 25 2012, 2:55 AM Post subject:

Thaks for all your answers ladies it helps me out with questions for the consultant , there are 2 members of my family with coelic disease on my mums side but the paeds never said anythimg about it , im sure she doesnt listen to half of what I say , so frustrating.

Yeah she said the fact that Rebekah is screaming in agony everytime she poos (just at the point of passing it) is not allergy related she feels it could be something called hirshsprings (exuse the spelling) ive not looked it up or looked up any other bowel disease yet cause I dont want to get svared/worried yet in the hope that its something more simple , my mind often runs away with itself lol Razz

She still suffers from constipation if I dont give her a stool softener every day so I firmly feel changing her diet can only be beneficial for her Smile

Thanks x

_________________
Claire & Chris , Mum and Dad to Bethany 05/03/1998 Calum 03/09/2004 Rebekah DS 13/01/2011

LinMac · Posted: August 25 2012, 6:27 AM Post subject:

Quote:

there are 2 members of my family with coelic disease on my mums side but the paeds never said anythimg about it , im sure she doesnt listen to half of what I say , so frustrating.

Some doctors just don't know about the genetic connection and the higher incidence of CD in DS population.

_________________
Linda & John
mom to Hannah Kate (Age 14 ), Robert (Aged 9 - DS)

First Communion Day

TheBradyBunch · Posted: August 25 2012, 8:46 PM Post subject:

if she suspects hirschsprung's disease then she should be ordering the tests neccessary to find out if that is what it is. Many of our kids can't actually go reglualry without a stool softner. I give Noah PEGS daily (miralax n the US) or he doesn't really go.

Celiac is commin in DS, Noah has celiac disease. IF she has celiac disease, it can also cause lactose intolerance because the whole digestive system is upset so to speak.

_________________
Mom to: Nicholas (May/02), Nathan (April/04), Charlene (June/06), Noah (DS, ASD) (May/07), Jesse Lynn (July/08 ), Tessa (Apr/10), Kaitlyn (Jun/12)

"Sometimes the things we can't change end up changing us"

beckysmum · Posted: August 26 2012, 12:35 PM Post subject:

Bradybunch love your new picture of Noah hes so cute Very Happy

Yeah she's reffered Rebekah to the specialist that deals with bowel conditions at our cities children hospital and he/she will do all the tests needed to discover whats wrong so hopefuly not too long a wait.

The only test she ordered was I handed in two pots of rebekahs number twos to my local hospital and tests for specific bacterias are being done and i will get the rests this week at some point.

_________________
Claire & Chris , Mum and Dad to Bethany 05/03/1998 Calum 03/09/2004 Rebekah DS 13/01/2011

beckysmum · Posted: September 21 2012, 11:29 AM Post subject: Small update

Hi , beckys has her appointment through for the specialist at the kids hospital on the 24th of October , and her stool sames came back clear of any bacteria or infection so now its up to the consultant to work things out Smile

She is getting worse with constipation , i took her to my gp because she has not passed poo for 10 days , i thought she would get a laxative but they only want me to up her stool softener med up from 2 sachets a day to 4 until she sees the consultant !!! Her belly is all swollen and shes crabbitt as hell , no wonder poor girl

_________________
Claire & Chris , Mum and Dad to Bethany 05/03/1998 Calum 03/09/2004 Rebekah DS 13/01/2011

beckysmum · Posted: October 28 2012, 4:38 PM Post subject:

Hey

so saw the consultant at Yorkhill and Rebekah has to have a camera inserted in her back passage ( under a general ) so that he can have a good look at her insides Confused

He thinks it could be a tear inside so hes doing this test 1st and if its clear he will tell us whats next !! But fingers crossed it will be a tear cause thats easy to treat. Shes still screaming with every bowel movement and blood is present 50% if the time.

Will update after test is done ,she is on the waiting list so should be within a couple if months , this has been ongoing since january , far to long and again we wait while her pain continued grr.

_________________
Claire & Chris , Mum and Dad to Bethany 05/03/1998 Calum 03/09/2004 Rebekah DS 13/01/2011

logansmom · Posted: October 28 2012, 7:48 PM Post subject:

So glad you got to see the specialist. Hopefully, he finds the answer and that they know what to do to control her pain.

Please continue to keep us updated!

Kim

_________________

Wife of Marvin
Mom to Logan (3/6/03, Ds) and Carson (9/6/05)