Undiagnosed Kids

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Happy Birthday to your baby !! :dance::dance: double digits ! What a nice age ~ my kids were all very happy to reach that ~ :ghug:
 
I'm new here and thought i would try (haha) to sum up my daughters' issues.
She will be 2 on November 3rd.

She was born @38wks 5lb13oz (normal weight for my kids). I breast fed with the elimination diet starting at 6wks when i noticed mucous in her poo.

side note: we have been down this road before with my oldest - so i knew what was going on

I was unable to keep my milk supply up (never have figured out why) - so we started supplimenting with Neocate - she did WONDERFULLY on this:heart:. One time we had to use Elecare and she reacted with screams and blood in stool - the % of one of the sugars is different between the 2.

6mon rolls around - unable to tolerate peas and other "normal" things - i started her on the "intolerance introduction to solids" diet. Tried soy milk - screams, constipation, mucous....

Back on full Elecare, no solids until poo goes back to "normal".
9mon blood work allergy testing done - all came back negative

12mon - introduction into solids with fluctuating syptoms of:

extreme constipation/Diarrhea
mucous/blood in stool
weight loss/failure to thrive
bloated stomach
sluggish
joint pains
stomach pains/screams
headaches (?)
diaper rash (burn type)
allergy rash

17mon - wakes up SCREAMing, unresponsive, breathing change. Was able only by God to get her breathing regulated back out and calmed. Was on the phone with 911, they showed up and stayed with us for an hour.

Next morning called the Pedi and picked up epi-pen. Pedi scheduled pedi GI doctor.

Introduction to pedi GI.
Thyroid test - normal
CDC - normal
wants to see if Celiac is an issue orders a biopsy

19mon: Lower GI/colonoscopy is scheduled
reintroduction to:
Gluten
Soy
Casein/Lactose

3 days into reintroduction - HORRID rash all over body :( + diarrhea & mucous
lower GI/colonoscopy results:
negative for Celiac
positive for lactose intolerance
inflammation of the colon

immediatly go back to "allergen free" diet. Unable to regulate stomach issues, bowl issues and NOW we have a horridish rash that we can't get to go away.

August:
rast skin allergy testing done - negative, but also determined inconclusive as he can't truly tell what is allergy reaction and current rash.
Was advised to cut out tomatoes and all shade veggies

September:
rash looks like chicken pox, but has lasted more than 4wks. Go to pedi, not chicken pox, not measles - can't explain :(
"constant" diarrhea
joint pain

Pedi GI: orders stool testing done to determine possible Crohn's

and here is where we sit

Foods she cannot currently tolerate:

Lactose - diagnosed intolerance
Casein
Soy
Gluten
Apple Juice
Tomatoes

I think i've listed everything........
 
Poppets mom - HAPPY BIRTHDAY to Amy!!!! scary how quick they grow up!!

Eragsdale - so sorry that you have been through so much with your little lady. When they did the colonoscopy and found the inflammation in her colon I assume they biopsied it and it was negative for UC\crohn's? You say you have been through this with an older child? did they ever get a diganosis for your older one?

Has she had boods tests for various vitamin or mineral deficiencies? and iron? if her guts are not working properly then it may be various deficiencies causing some of her other signs?

When do the results of the stool sample get back?

I hope you get some answers soon xxxx
 
Hi Eragsdale. Welcome to the forum.
My little farm princess Grace is also undiagnosed.
Our stories sound eerily similarly.
I hope you get answers soon.
Please feel free to pm anytime.

Do you or another child have IBD?
 
Farmwife said:
Hi Eragsdale. Welcome to the forum.
Our stories sound eerily similarly.
Click to expand...

I was thinking the same thing!!!!

I am so sorry for all you have been through. I don't have a lot of advice as my daughter's disease and dx came fast but did want to welcome you to the group. Maybe some of the others with more experience will be able to offer advice or suggestions.
 
Few things:
Rast test are blood tests for allergy. There is also a skin prick test.
If she is covered in rashes ( sounds like papicular eczema ) then her allergy load would have been too high. The fact she did well on neocate but had issues once found was introduced raises flags for an eosinophilic disorder .
Eosinophilic colitis can cause inflammation in the Gi tract(colon).
Most Gi miss it unless they are looking for it.
I don't know where you are but national Jewish hospital in Denver Colorado would be a go place to start. They take a team approach and help the kids who don't fit in the box.
EC has triggers it is an EGID disorder and once you figure out the triggers things can get better.
http://apfed.org/drupal/drupal/index.php
 
Suzysu said:
Poppets mom - HAPPY BIRTHDAY to Amy!!!! scary how quick they grow up!!

Eragsdale - so sorry that you have been through so much with your little lady. When they did the colonoscopy and found the inflammation in her colon I assume they biopsied it and it was negative for UC\crohn's? You say you have been through this with an older child? did they ever get a diganosis for your older one?

Has she had boods tests for various vitamin or mineral deficiencies? and iron? if her guts are not working properly then it may be various deficiencies causing some of her other signs?

When do the results of the stool sample get back?

I hope you get some answers soon xxxx
Click to expand...

No, he didn't do anything with the information of the inflammation, because "I wasn't looking for Crohn's I am looking at Celiac. We will keep this in mind if we can't figure it out." :banghead: He has tried to reduce the inflammation with nexum (which i still haven't figured out what he is trying to regulate if he isn't testing her) - green mama in this whole area.

She isn't deficiencant in anything including iron - that was one of the first things I have them check every 6-8mon since she is on a limited diet.

She is currently having diarriah issues, but her rash seems to be clearing up, but I won't hold my breath as I'm pretty sure there will be a flare-up again.

results should be back in a couple of days.

No, my oldest has a slew of allergies/intolerances - also unexplainable. They are thinking IBS. He as well diagnosed with lactose intolerance. He has neurological issues with Gluten/Casein

His allergies/intolerances:
Gluten
Casein
Lactose - intolerant
Soy
Corn - allergy
Strawberries - neuro
Oranges - neuro

They get all this from my side of the family and I feel so bad :(

she doesn't have the main causes of an EGID. My ODS did, but we learned later on that it was sensory than anything.
 
Hi, i am new to this but i thought i would share our story. My daughter was diagnosed with crohns at 5years old after being ill for over a year. She is 18 now and in that time she has had 5 major surgeries, countless investigations, elemental diet 5 or 6 times, first via a ng tube then she had a gastrostomy fitted when she was 10. She is currently n humira, prednisolone, pentasa, iron, selenium, adcal and vitamin b12 injections. We have been told that her crohns is very aggresive and it does not respond well to treatment. The surgeons say they will now only operate as a very last resort because she is still very youbg and has already lost around half if her small bowel. My daughter is a wonderful girl who copes so well with everything she has to deal with. We are so very proud of her. I have an 11 year old daughter too , who thankfully is completely healthy. I also have a 3year old son, who has been having problems for months. He has alot of tummy pain, constipation, diarrhea ( which can have mucus) , loss of appitite, tiredness and pale complexion. He has had blood tests done and we get the results today. We are praying that he doesn't have crohns but it does feel like he s a carbon copy of what his sister was like before she was diagnosed.
 
Sandie hugs.

Happy:

see she doesn't have any issues with the upper part of her body. No reflux, no gagging, nothing=it is all digestive and colon related with the complexity of the rashes.

Now, that does sound like me though. There are several times that I have to excuse myself to the bathroom to sit and wait up-to 30min for it to come back up with lots of acid :/
 
Ec is just colitis cause by an allergic reaction to food . It only affects the colon.
The only way to know would be by biopsy count if EOS present.
Inflammation would still be present.
Does she vomit or have blood pressure drops?
There is such a thing called fpies.
See here


FREQUENTLY ASKED QUESTIONS ABOUT FPIES

What Does FPIES Stand For?
FPIES is Food Protein-Induced Enterocolitis Syndrome. It is commonly pronounced "F-Pies", as in "apple pies", though some physicians may refer to it as FIES (pronounced "fees", considering food-protein as one word). Enterocolitis is inflammation involving both the small intestine and the colon (large intestine).

What is FPIES?
FPIES is a non-IgE mediated immune reaction in the gastrointestinal system to one or more specific foods, commonly characterized by profuse vomiting and diarrhea. FPIES is presumed to be cell mediated. Poor growth may occur with continual ingestion. Upon removing the problem food(s), all FPIES symptoms subside. (Note: Having FPIES does not preclude one from having other allergies/intolerances with the food.) The most common FPIES triggers are cow's milk (dairy) and soy. However, any food can cause an FPIES reaction, even those not commonly considered allergens, such as rice, oat and barley.
Click to expand...

From:
http://community.kidswithfoodallergies.org/displayForumTopic/content/3682717251785982
 
Well we got jamies blood results back. It showshe has raised ESR. We are now waiting for an appointment to see the IBD docs at the childrens hospital. Should be seen within six weeks or so. He has been referred to the same team of docs that took excellent care of my daughter when she was younger. She attends the adult hospital now. We still hoping that jamie doesn't have crohns but at the moment it is all a little bit familiar.:confused2:
 
Sandie - I am so sorry after all you have been through with your daughter and as you say it all seems a little too familiar for poor Jamie. I will keep my fingers crossed that he does not have Crohns. If he does then you will be one of the best parents to deal with it and he will gain valuable insight and support from his sister - sending you big hugs xxxx
 
Hi eragsdale and :welcome:

I am so sorry to hear about your little one...:hug: I don't have any further advice to offer but would like to welcome you to the forum and wish you all the luck in the world in finding solid answers for your daughter, poor love. :ghug:

Dusty. xxx
 
Hi Sandie17 and :welcome:

Oh my goodness, what a difficult and worrying time for you...:hug: I hope your little boy is okay but I well know the deja vu of having travelled that path before. My thoughts and well wishes are with you.

And your daughter, bless her. It is no wonder you are so very proud of her. :) What an amazing young lady she must be!
Has a stem cell transplant ever been mentioned as a possible treatment for her?

I hope more than anything that your younger daughter continues to be blessed with good health. :)

Good luck to you all and welcome aboard!

Dusty. xxx
 
Freddy was sick yesterday for the first time in months - oddly it was a meal he hadn't had since he was really sick (beef meatballs, tomato sauce, and wholewheat pasta). He also has a cold so I am hoping that it is just a bug or something - he has been sent home from nusery today with a low grade fever so I think it is just a bug.

His px for metronidazole (for the supposed SIBO) finally reached the pharmacy. I know that compared to most meds metronidazole is as safe as houses but still after reading the medicine insert I still didn't want to give it too him!!

The low sugar diet is going better than expected luckely he is off the low fiber diet so can have fruit again (which he loves) and my older children are being fairly understanding about it all.

I know compared to everyone elses problems Freddy's are minute - it just helps me to write it down and keep things in perspective!
 
Thanks for the update Suzysu...:hug:

I hope Freddy is soon feeling better and it is indeed only a bug, bless him.

I know my children are much older that your little guy but Matt was on Metronidazole for 6 months and had no issues with it. Having said that, I well understand how you feel about it hun. :hug:

My daughter has cut out processed sugar from her diet and also watches how she consumes natural sugars. She doesn't juice fruit because it concentrates the sugars too much and eats very little, if any, dried fruit for the same reason. Of course Sarah is an adult and so making these changes is her choice but it may be something to think about for Freddy.

Oh hun, Freddy's problems aren't minute compared to ours. He is your boy and it is his story and his alone and it is just as real and valid as anyone's here so don't ever feel that your issues don't match up to anyone else's. :ghug:

Plus writing it down here is a damned good journal! It's amazing what you have forgetten when you back over your own old posts! But that just may be me an my memory! Shut up y'all! :lol:

Dusty. xxx
 
Thanks Dusty!!

Normally I don't really stress out too much if the kids need antibiotics (even though my middle one has had bad reactions to several of them!!) as they usually only need them for a week - I guess I'm just stressed about it this time as its for so much longer!

Luckely Freddy seems unable to tolerate dried fruit so we stay well clear (or suffer the very unpleasant consequences!!!!) and again luckely I just dont really give them bought fruit juices. BUT we do have a juicer and I had been thinking of making them fresh juices and didn't realise that it concentrates the sugar!! OOPS!!!!

Yes he is my baby but compared to what you guys have all been through and the amazing strength you all have to deal with everything his problems are really tiny! - I just hope he 'grows out' of the diarrhoea soon or he will still be in nappies when he goes to school!!!!

As for your memory - it can't honestly be as bad as mine!!!! :)
 
Thanks for your kind words everyone:hug: . It really helps to know that we are not alone. We are still waiting for jamies clinic appointment. He has gone from aving diarrhea to constipation and back again. Yesterday he had a lot of quite mucasy looking diarrhea. Hope this clinic appointment is soon. We want our little boy back and we desperately need answers. :confused2: xx
 
Back for a short visit. My daughter's doc still hasn't called back regarding the motility study appt. I've had a severe concussion recently, so lost track of time etc. It's been well over a month since we were supposed to have been given that appt. I need help remembering to call the doc. Gotta locate her number first. Haven't a clue where I put it last. Also, doc found that my previous blood clots from May have not resolved and she found a third blood clot on the other upper extremity. Now having more pain and some increase in size in left bicep where two of the blood clots are. It just doesn't seem to be slowing down for us. Doc increase Rx of Warfarin. How can I take care of dd if I'm struggling to take care of myself? It's so frustrating....
 
Sorry to hear of your problems Nature lover, I know how dangerous blood clots can be so please monitor them carefully. I was given some good advice yesterday about recording symptoms, keeping track of different clinics, taking down names of professionals and what they do and going to the ER with all pertinent info such as meds etc already printed out. Hope some of this helps.
 
No, she doesn't throw-up.
We had another bout of 2wk D - and she has lost weight again. This is so frusturating.

GI is going to put her on either prednisone or Entocort. Has anyone had any luck with any of these: azathioprine or 6-mercaptopurine.
 
I am new here. I have been reading a lot of stories and I have been doing a lot of research and I am trying to find out what is going on with my DS who is 2yrs old. His story goes back to when he was just 3 months old and he started just screaming out in uncontrolled fits, balling up his legs in pain, and at times vomitiming. During this time we saw his pediatrician who believed that he had reflux and he was given zantac to control it, which did not work well. He was then placed on Prevacid which worked a lot better. These fits sometimes also caused him to lose his breath and one time I had to rush him to the ER because his lips turned blue. It was a scarey moment. It turned out that it was just the reflux, they said and that it was nothing I should worry about ((so they say))!!

Let me back up just a bit, he was breastfed when he was born but he devoleped jaundice and lost more than 10% of his birth weight so we had to supplement and because of my history of lactose intolerance and his brothers we immediately started with soy milk and once we started that he would not got back on the breast and I could not produce enough on the pump. So, when we saw the GI put him on alimemintum (SP?) which did not seem to help much either. He was still having boughts of cramping with constipation/diarhea, and vomiting. The GI then changed him over to Elecare which seemed to help with the vomiting but not with anything else.

We saw an allergist when my son was a little over 1 and he tested positive for soy/milk and peanuts. We now have to carry an EpiPen because of the peanuts. But, the funny thing my DS just had an endoscopy done by his new GI that said that he shows no signs of allergy to milk, but every time he gets milk he is in pain that night. I am getting really frustrated. If we haven't given him any milk would he not show any signs of allergy?? Then the allergist has also frustrated us because my son has broke out when he ate something twice with cinnamon on it and pineapple and he refuses to do more allergy testing on him for 3 months. What is the hold up? To me something is obviously going whacky with my sons system and I do not know what is going on.

Someone also mentioned the severe diaper rashes, my son also gets those. The ones that looks like burns and I have had to rush him to the ER because he couldn't even sit down or I couldn't hold him because it hurt so bad and it just comes on so bad. Where is all of this coming from? Now he is breaking out in these little bumps that look like the chickenpox, but I know they are not because there are only a few and they are not itchy at all to him.

For five nights/days now he has been in pain and I do not know where to turn. I do not know if I should call his GI doctor again or if I should just find yet another doctor. I am starting to think he might have Crohns because it all fits, but I do not know!! I think if I hear that your son is having "night terrors" one more time, I might just scream!! :sign0085:
 
So sorry to hear about your boy. My Grace is three and a half and the has showed signs since the first few months of her precious life. We're in the same horrible category of undiagnosed. Her blood draws (labs) were coming back normal till lately so it must not be that serious doctors thought. We'll here I am today and she failing a bit every day for the past couple weeks. I hope you get answers soon for your little guy. Keep fighting for answers!!!!! Please feel free to PM me anytime with questions if you wish.
 
Hi mytwoboys - I know how Frustrating it is - my boy is 2 and has had gastro problems since he started on solid food. He is negative for all allergies, celiac, and his scopes were normal - and yet he still has problems. - I have no answers for you - just support. If he is constantly in pain then you need to hassle your Dr for more investigations\ answers. - I hope things improve soon xxxx
 
Hi momtwoboys -
I also think that if your DS does not drink any milk than his endoscopy would not show any signs ... but this shsould not mean he is no allergic. What other testing has the GI done? It must be soooooo awful to see your tiny baby suffer so much. Feel free to create a new post in the Parents section so you can get more feedback. They welcome undiagnosed kids.
 
OK few things-
Your Gi was referring to allergic colitis ( milk allergy in infants) which causes inflammation.
If your child was not drinking milk then this would not show up. IT is an non-IgE mediated response.
What your allergist tested for is IgE mediated allergies which is why you were given an epi pen.
This site will help with the allergy side of things and weird non crohn's side of GI things:
http://community.kidswithfoodallergies.org

THere is a starter guide for allergy parents:

http://www.kidswithfoodallergies.org/guide_to_parenting_child_with_food_allergy.html

Did your allergist give you a food allergy action plan ( FAAN FAAP)
on when to give the epi pen?

If not take this to him to sign:
https://www.foodallergy.org/files/FAAP.pdf

Cinnamon is a skin irritant and may cause a rash even if your not allergic ( not saying your kiddo is not allergic) but most atopic kids do tend to have sensitive skin.

IS your child back on whole foods now?
or still elecare only?
Elecare would take care of the vomiting but is very constipating so most kids need miralax while on it. The under 2 crowd tends to need a "milk" so not sure if he is still on it.

Constantly RAST testing or SPT testing is not recommended.
Most allergist would recommend keeping a detailed food diary of ate this at time this and what reaction if any you saw.

IS he on a daily antihistamine?
Sometimes you have a full bucket theory where you would not normally break out to something but because your system is overloaded ( virus + fall pollen+ ...) = reaction when normally it would not be an issue.


COuple of things how soon was the vomiting after ingestion?
How much?

DO you avoid all milk products (read labels for traces , may contains, made in the same facility as, call companies and ask about their manufacturing process)?

Two things come to my mind other than Allergy :
EGID disorder ( EoE):
http://apfed.org/drupal/drupal/index.php

and FPIES
What Does FPIES Stand For?
FPIES is Food Protein-Induced Enterocolitis Syndrome. It is commonly pronounced "F-Pies", as in "apple pies", though some physicians may refer to it as FIES (pronounced "fees", considering food-protein as one word). Enterocolitis is inflammation involving both the small intestine and the colon (large intestine).

What is FPIES?
FPIES is a non-IgE mediated immune reaction in the gastrointestinal system to one or more specific foods, commonly characterized by profuse vomiting and diarrhea. FPIES is presumed to be cell mediated. Poor growth may occur with continual ingestion. Upon removing the problem food(s), all FPIES symptoms subside. (Note: Having FPIES does not preclude one from having other allergies/intolerances with the food.) The most common FPIES triggers are cow's milk (dairy) and soy. However, any food can cause an FPIES reaction, even those not commonly considered allergens, such as rice, oat and barley.

A child with FPIES may experience what appears to be a severe stomach bug, but the "bug" only starts a couple hours after the offending food is given. Many FPIES parents have rushed their children to the ER, limp from extreme, repeated projectile vomiting, only to be told, "It's the stomach flu." However, the next time they feed their children the same solids, the dramatic symptoms return.

What Does IgE vs Cell Mediated Mean?
IgE stands for Immunoglobulin E. It is a type of antibody, formed to protect the body from infection, that functions in allergic reactions. IgE-mediated reactions are considered immediate hypersensitivity immune system reactions, while cell mediated reactions are considered delayed hypersensitivity. Antibodies are not involved in cell mediated reactions. For the purpose of understanding FPIES, you can disregard all you know about IgE-mediated reactions.

When Do FPIES Reactions Occur?
FPIES reactions often show up in the first weeks or months of life, or at an older age for the exclusively breastfed child. Reactions usually occur upon introducing first solid foods, such as infant cereals or formulas, which are typically made with dairy or soy. (Infant formulas are considered solids for FPIES purposes.) While a child may have allergies and intolerances to food proteins they are exposed to through breastmilk, FPIES reactions usually don't occur from breastmilk, regardless of the mother's diet. An FPIES reaction typically takes place when the child has directly ingested the trigger food(s).

What is a Typical FPIES Reaction?
As with all things, each child is different, and the range, severity and duration of symptoms may vary from reaction to reaction. Unlike traditional IgE-mediated allergies, FPIES reactions do not manifest with itching, hives, swelling, coughing or wheezing, etc. Symptoms typically only involve the gastrointestinal system, and other body organs are not involved. FPIES reactions almost always begin with delayed onset vomiting (usually two hours after ingestion, sometimes as late as eight hours after). Symptoms can range from mild (an increase in reflux and several days of runny stools) to life threatening (shock).

In severe cases, after repeatedly vomiting, children often begin vomiting bile. Commonly, diarrhea follows and can last up to several days. In the worst reactions (about 20% of the time), the child has such severe vomiting and diarrhea that s/he rapidly becomes seriously dehydrated and may go into shock.
Click to expand...

from:

http://community.kidswithfoodallergies.org/displayForumTopic/content/3682717251785982




Rashes could be uncontrolled eczema , papicular eczema , allergen (pollen or food).

Have you tried creams or wet wraps?

What did work for us was aggressively treating the eczema. Eczema is not only "the itch that rashes" but is the skin's inability to retain moisture. The loss if vital lipids reduces the moisture barrier which means the skin loses water and becomes dry.
To treat those two problems, we do:
*Daily antihistamine
*Daily soaking baths (with wet towels on skin that is not underwater)
*Immediate slathering with: (a) Vanicream on all skin except where steroid may be needed; (b) one of two steroids where needed.
Desonide (lower strength steroid) goes on face, axilla (armpit), groin
Triamcinolone (slightly higher strength steroid) goes on anywhere that is inflamed that is not the face/groin/axilla

So if there is a flare--red/itchy/etc; that part gets the corresponding steroid for 5 days--even if it has cleared after 2 days because biopsies have shown continued inflammation that can't be seen by the naked eye.

Vanicream and steroids don't get overlapped on the same body part.
Steroids get applied with a tongue depressor and then rubbed in--don't dip in with your hands and intro bacteria into them.
Studies show that if you use the steroid for 5 days (even continuing after it looks cleared), you end up using LESS steroid overall (compared to those who use it sparingly).

I have found this to be true.

*After the Vanicream or topical steroid is put on, then cover the kid with warm wet pajamas and socks (even on arms). Then put warm, dry socks on top of the feet/legs and hands/feet. Then on top of that, put the warm pajamas (long-sleeves). The kid will NOT be able to take them off this way. Leave on for at least 2 hours, or overnight if doing it at bedtime. Bad flares may need bath/wet wraps 2 or 3 times a day.

We are just "maintaining" good skin, so we do it once a day at bedtime; and Vanicream all over the body also in the morning. But during bad flares, repeat the soaking and wrapping method a few times per day/night for best results.
Click to expand...

from:

http://community.kidswithfoodallergies.org/displayForumTopic/content/3682717252137825

For a very allergic kid with GI issues I would call NAtional Jewish hospital in Denver Colorado

They have a week long day program that could help you get to the bottom of all his pain and issues.
http://www.nationaljewish.org/programs/pediatric/atopic-dermatitis/

PM me if you have any questions.:ghug:
 
Thank you all for all of your wonderful information. I am looking into all of it. Yesterday we had a visit at the feeding clinic and my DS was put back on Elecare, prevacid, and taken off of all of dairy food completely. I am glad that they are working closely with my GI's office and it appears that there was some confusion when I went into my last appointment so the feeding clinic took the approach of taking him off of everything.

He can still have some table foods but his diet mainly consists of puree's with his Elecare now to get his calories in and hopefully get him back to gaining weight. I forgot to add in my original post that he has some sensory issues that have also limited his wanting certain foods. Some reasons why we are in the feeding clinic. Another reason is we are having him tested next month for Autism, and if it is not that what the doctor's might think is also going on.

As far as his belly pain, since we have cut out the milk products for 3 days now he has not woke up with any "episodes". His rash hasn't fully gone away but they have told me that it could take a couple of weeks to fully get out of his system. I am optomistic that all of this could be the answer. I just have to be very vigilant in making sure that the labels do not have anything milk in it.

Thank you all again for all your kind words and the information!! :)
 
If the purees are commercial baby food then they are most likely cross contaminated with milk .
They do not have to label for criss contamination by law.
Only what they intend to put in there.
The safest route would be to purée your own.
 
Got her results back, she has ulcerative colitis. So i guess i need to bow out of this forum and go find a ulcerative colitis forum
 
eragsdale said:
Got her results back, she has ulcerative colitis. So i guess i need to bow out of this forum and go find a ulcerative colitis forum
Click to expand...

No!!!!!:ywow: I mean you can but UC and crohn's kids are on the parent's forum.
Mary which is Rowan's mom and Angie which is Izzy's mom both those girls have UC.
Of course their's those of us in the undiagnosed world that are on there to.:ybiggrin
 
Farmwife said:
No!!!!!:ywow: I mean you can but UC and crohn's kids are on the parent's forum.
Mary which is Rowan's mom and Angie which is Izzy's mom both those girls have UC.
Of course their's those of us in the undiagnosed world that are on there to.:ybiggrin
Click to expand...

OH! yeah :ybiggrin:
 
Yes please stay eragsdale ! This is an IBD forum for all forms ! :)

Im sorry she has UC, but I am happy for you that you have some much needed answers :)
Best of luck to your family in your new journey!

:hug::hug::hug:
 
Oh my eragsdale...:hug:...I am so very sorry to hear of your daughter's diagnosis but it is comforting to know that you now have an answer and can tackle things head on.

I know the name of the forum can be confusing but it encompass all forms of IBD, including UC, and we are more than happy for anyone to hang out here that has intestinal issues of any kind and feels they are getting the information and support they need.

Good luck and welcome to the club! The membership that no one wants but my goodness aren't we exclusive! :lol:

Dusty. xxx
 
:depressed:

Yet again my bubble has burst :thumbdown:

So after out last consultant meeting (metronidazole and low sugar diet for suspected SIBO).

The GP took ages to get the px for the MNZ and Freddy was really ill with a nasty cough and cold - all in all I forgot to give his Sennokot for a day and a half, I realised my mistake when I realised he hadn't pooed but thought I would just wait to restart the meds in the evening as I normally would give it - before it was due he did a normal poo! so I didn't give in the evening and the next morning he did another normal poo and so on and so on - so I never gave any MNZ or sennokot and for a couple of weeks everything was NORMAL!!!! (except for the knee pain, which I will come to later!!). And just when I was thinking I should cancel the next consultant app and tell them he is fine.........

He starts the vomiting again:eek:

Poo is dryish but soft and once to twice daily - def not constipated. At first I thought maybe he just has a bit of a bug, then I thought maybe its because he is just getting used to normal food again (after low residue). But after just clearing up the kitchen after projectile vomiting in front of friends we had round Im thinking maybe not :shifty-t: It is starting to happen with increasing frequency and larger volumes - getting worse not better. Today he ate a small amount of lunch, got down from the table - projectile vomited (covered approx 1-2m2 - very strong smelling) and within seconds he was running around playing again so he definatley isn't 'ill' if you know what I mean. He is generally eating less and sleeping more (9 hours at night and up to 4 in the day - he is 28 months old). He has also become quite clingy again.

And now the knees!! All 2 year olds fall over a lot I get that, but Freddy's legs often just seem to 'give way' either when walking or trotting he doesn't trip over or it's not like he is running too fast, he doesn't limp first - literally his leg just seems to give out and he plonks to the floor - not enough to hurt himself but he really (and I mean really) screams, and cry's that his knee is sore. He won't walk a long distance without wanting to be carried or in the buggy. Now he has started to cry and say 'hurt knee' even when he hasn't just fallen over.:sign0085:

He also has a rash (like little red raised spots but without the pimpley bits over his cheeks and chin.

I just honestly don't know what to do - we have our next GI app on Wednesday and the consultant is just going to think I am an utter moron for not giving the meds - but he just honesly seemed fine and I thought maybe it was the sennokot giving him the diarrhoea and making him seem poorly when maybe he wasn't. I have never mentioned the knee business to the consultant but I supposed I had better mention it on Wednesday. I feel we have tried so many different meds, diets, diarys, tests etc etc and he seems to get better for a short while, then worse, then better - every time they ask 'what is different'? 'what has changed' - NOUTHING - I honestly can't say that one particular thing or group of things makes it better or worse:angry-banghead:

My gut feeling is that there is something wrong with him but I just don't know what and am not even sure how I am going to find out - I don't want to put him through anymore tests but if there is something wrong then we have to find out what.

Sorry for the long rant - thanks for listening (well reading really but you know what I mean!) - If anyone has a crystal ball that they could look into and tell me what is going on I would be very grateful!!
 
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:angry-banghead::angry-banghead::angry-banghead:

NOOOOOOO not the blasted knee pain!:ymad:
JUST like Grace!:eek: She can't run more than 20 ft. without falling.
Grace likes to sit on heating pads now. I don't know if it help but she feels like it is something she wants to do when it hits.
So sorry. We're STILL waiting for the appointment with the rheumy.:yfaint:
Ironically we have decided to slowly back Grace off her Miralax.
As long as no damage is happening, we hope to ween her off soon.
But will see about that. :shifty-t:

Have to run, I didn't have time to write this!:yrolleyes:

HUGS
 
Thanks FW and MLP!

I will test the stretchyness of his skin tomorrow, I don't think he scratches easily and I think things heal up ok - but it's worth a look!!
 
There are varying degrees. I know of another child who has this and suddenly falling and trouble walking was the big flag. I think genetics made the dx.
The child has a j-g tube -nutren and aslo has cyclic vomiting from it.
 
MLP - just been reading up more about it and think Freddy's pain\ collapsing legs are very likely down to hypermobility - it was this that meant he didn't walk till very late - so it could fit. I didn't realise that EDS could cause GIT probs as well so I will def mention it to the GI on wednesday - maybe we are closer to an answer than I thought - athough I am not sure he has soft silky skin - I will prod and poke him when he wakes up tomorrow!!
 
Just like Ibd there are four major subtypes of eds plus a lot more minor ones not all even have the stretchy skin
 
Just sending hugs!! :hug: I hope the doctor has some ideas and can get you moving on the path to a diagnosis! :ghug:
 
And we are back on the Sennokot AGAIN
They say that maybe he needs to be on an amount of senna that causes diarrhoea to stop him from getting backed up and vomiting - however today when they felt his tummy they said there was no blockage - so why is he vomiting!!!!??
They also talked about IBD as if he could still have it - but I thought the scopes had ruled it out - confused.com!!!!
They were not really interested in his leg pain so maybe I need to go to the GP about it!
Anyway he has gained 100g in 6 weeks so that's good!
Back inside the bubble again!!
 
Goodness me Suzysu...:hug:...how awful for you and little guy.

I don't have any suggestions but want you to know that you are in my thoughts and I am hoping, wishing and praying that you soon have solid answers and your boy has lasting relief, bless him. :heart:

Dusty. xxx
 
Does anyone know if urine dipsticks also work if you use them to test diarrhoea?

Freddy passed a load of suspicious looking diarrhoea today - not frank blood, not black but had a kind of maroony pinky tinge to it. My MIL (who is a GP practice nurse) had given me some urine dipsticks so I could see if his poo had blood in it (as this has happened before). So I tested it and of course it comes up strongly possitive for blood. My MIL is away for 3 weeks so I can't ask her and I don't want to call the GP or GI nurse in case I look like a total wally and am wasting their time. Freddy is not acutley ill (vomiting seems to have stopped for now!!) but is not eating so well and is quite grumpy as if something is up.:(

So I am hoping that one of you brainboxes knows the answer!!
 
Do you have the name of the sticks? Look up online and see.
You can't be the only one that has ever typed that question. Right? :eek2:Or maybe you are?:confused2:


Glad he's feeling well for now. Please let me now about the stick. I wonder if I can get some?


:ghug:
 
On the web there is only info for using the test for urine. But I did find out that when testing for occult faecal blood you can get a false positive if you have eaten red meat - we did have pasta and meatballs yesterday (although Freddy never really eats the meat part!!). So now I don't know weather to worry or not!!!!
hope the EN is going ok? xx
 
I use them at work at times if I am suspicious that someone has malaena (black tarry stools). I use them if vomitus is suspicious too.

Red meat could give a false positive but either way, with no other symptoms, at this point I would continue to observe.

Just for future reference: I would also ask your MIL to get a couple of stool specimen containers. That way you could always collect a sample and drop it off at the GP's and have the doc have a look at it. If he has concerns he can then just send it off for testing.

Dusty. xxx
 
Just something to brighten everyones day!

Freddy's vomiting seems to have restarted and slightly foolishly after tea tonight I was playing with him and dancing round with him to Michael Jackson - perhaps predicatably he projectile vomited EVERYWHERE - as I was cleaning up 'don't blame it on the boggie' started playing! - Just thought those of you with gastrointestinally challenged children may appreciate the irony!! - and my little story may bring a smile to your day!! :rof::rof:
 
You have certainly brought an ear splitting grin to my face! :ybiggrin:

That is classic! :mademyday:
 
Does anyone have any idea as to what may cause heartburn to get worse at night ?
JJ has been waking up at all hours of the night with what I assume is heartburn ? He is complaining of regurgitation (throwing up in his mouth as he puts it) ~ sometimes 4-5 times per night lately. Obviously, it is disturbing his sleep.

He has been taking Omeprazole daily for about a month now, and seems to be getting worse, not better. :/
He's also complaining of more stomach (lower abdominal) pain lately as well, and having diarrhea 7-10 times a day (according to him).

I'm just not sure what is causing the worsening in the regurgitation during his sleep ?
Any input or advice ?

I have made him an appointment with a GI, at HIS request, but it's not until the 4th of December ~ he is MAD that he has to wait that long...poor kid :/

thanks in advance for any input :)
 
Hey T...:hug:

As a rule reflux will often be worse at night because of the fact that you lying flat or close to it. When you are upright reflux can and does occur but when you are lying down if is far easier for stomach contents to travel the length of the oesophagus and you then wake with that awful feeling of burning in your mouth and the associated choking/coughing.

It certainly is something that needs to reviewed when he waking that frequently, plus the increase in his other symptoms, poor love. :(

I know it can be hard to sleep upright in a normal bed so something that might help is if you elevate the head of the bed about 20-30 degrees. You could use a brick under each leg or blocks of wood.

Good luck hun. I hope JJ soon finds relief!

Dusty. xxx
 
If he put on weight , eats too close to bed or meds are wearing off...
We had to up my oldest sons dose to 3 times a day.
He now sleeps.
Plus ped dose would be way lower than what a Gi would put him on .
 
Thanks Dusty, I will try the elevation and see if that brings him some relief.

MLP, I have thought about upping his dose but I don't want to do it until he sees the doctor. He's on 20mg right now, and usually takes it right after school because he can never remember to take it in the morning.
He's actually losing weight, and we eat dinner usually at least 4-5 hours before he goes to sleep. I'm trying to watch what he eats/drinks to see if it's something with that making it worse lately, but I dont see anything significant enough to make him stop. (except soda..I've made him cut that out completely ).
 
Has he seen a Gi before if so a call maybe all that's needed to up the dose ?
We don't up anything without the doc ordering it.
My oldest at 70 lbs was losing weight as well until he saw a Gi and was put on 30 mg of Prevacid a day which was more than the dose for an adult.
He is now on 75 mg of Zantac 3 times which is way more than the dose on the box again.
So having a Gi on board is key.
Glad you have an appt.
Fwiw my oldest gained 15 lbs while on Prevacid and grew.
Good luck
 
Thanks, I did email his doctor through this great system they have at our children's hospital. He already got back with me. He said that they took several iron measures and all were normal so it was time for him to stop the iron! I guess we will do it and I imagine he will be re-tested at some point. He also said that the elevated c-reactive protein from 0.6-1.3 is something to note and watch but that we needed need to do anything different at this time.

I will see what his plan is for follow up blood work. I may ask to see if we can re-do the c-reactive protein in a month because I know that can change rapidly. The iron takes a lot of time to change so I am sure we can wait until his next visit for that one.

Thanks again, I will let you know what he says!
 
has anybody tried the fodmap diet with kids? We are on day two and it seems so overwhelming and confusing, even though the dietician went through it with us. Also not a very promising start as Amy woke up crying in pain and has felt nauseous all day. Also tried to stop Miralax last week and she quickly became constipated again :poo: with some fresh blood (not a lot) in stools. MRI showed nothing so I guess for now we have to go with the IBS diagnosis although I am far from convinced. Seeing GP next week, hoping she can help us.
 
Poppet's mum - I half tried the FODMAP diet and got too scared and felt it was too difficult and gave up after about 3 days!!!! I did it off my own back and I think if I had a dietician leading the way so to speak I may have been a bit more confident with it - have you tried some of the adult threads about the diets - that may be useful? Are you able to call the dietician to get a bit more advice? Maybe Amy's digestive system is just getting used to things and it will settle down in a few days? - Sorry I cant be more help - good luck xx

Freddy is having a big vomit once every 3-4 days, he is eating but not as much as normal, he has lost a tiny tiny bit of weight (but could just be the difference between the hospital scales and ours). He is a bit clingy and grumpy but not acutely ill, BUT he is still having intermittent pink\red coloured very soft foamy poo, even if he hasn't eaten any red meat - I have used the dip stick a few times when it is this colour and it does keep coming back possitive for blood. Do I need to call the hospital to let them know or just wait till our next appointment (mid december)? just don't know what to do (as usual!)
 
Call!
Can you get a sample. Maybe take it to his doc or to the hospital and see what the say.
Showing them a visible sign might get things rolling faster.

Has Freddy been scoped? Sorry I forget?
 
We did fodmap diet with DS this summer since his extra symptoms were suppose to be Ibs like( biopsies were read wrong-)
http://ibs.about.com/gi/o.htm?zi=1/...p://www.eatingwelltofeelwell.com/?page_id=495

We used a lot of those recipes on the link
He was also still on peptamen jr so I wasn't worried about nutrients.
It did nothing for him.
He aslo could nt stop miralax while on it.
Remicade was the only thing that let us stop.
His ct scan was not consistent with Ibd either.
Only a scope showed the damage.
 
FW - yes he has had the scopes - all fine - I just wish he would get better or we could find out exactly what is wrong with him so we knew how best to tackle things - its just like an endless rollercoaster at the moment, just when I am convinced things are improving everything goes down hill again! I am going to give him the next couple of days and over the weekend if no improvement I guess I will have to call the hospital.
:(
 
Hugs it is so hard when you don't know what is wrong and they are in pain.
Hope your weekend is calm but if he ges bad call your gp/Gi and take him in to the A&E.
 
@poppets mum - no experience with FODMAP here but I know Catherine has tried it too. Good luck with the appointment next week! :hug:

@Suzysu - Unless the symptoms are new or have worsened I would probably hold off, just as you plan to do. Be sure and document everything and the minute there is any sign of deterioration then call or head to the ER. Good luck hun. :hug:

Dusty. xxx
 
Thanks so much MLP for the link just looked at some recipes and they seem a lot better than the ones I have in the diet book. Tried to make Ginger Beef the other day and it looked like Dog food.:tongue: SuzySu I completely understand why you gave up. This is fricking hard. Poor Freddy, how is he doing today?
 
poppet mom

Our experiences with the FODMAP diet are mixed.

Sarah began the diet in November last year after breath testing for lactose and fructose. She tested extreme high for lactose intolence and borderline for fructose.

On advice from a FODMAP dietitian we began to remove lactose, very high fructose foods (eg apples and apple juice), wheat, onion and garlic. Sarah began to lose a large amount of weight 5 kg prior to Christmas, we ceased the diet and she lost another 7 kg in January.

Looking back the weight loss was no caused by the diet but it may not have helped with the initially weighloss

We no longer following the diet, but Sarah also no longer drinks milk and has very limited apple juice.

Now me, I also went to diet i have a history of ibs and heartburn on remove milk from diet the heartburn ceased.

Now a couple of questions for you. What has the dietitian asked that you remove or reduce in your child's diet.
 
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I have sent some messages to a few individuals and Im feeling a little foolishly desperate . . . . . my son who is all but diagnosed on paper is having a terrible flare up. He is only three and tylenol and IBprofen are not helping take the pain away . . . . what else can I do?
 
So here is one of the original messages copied and pasted as instructed . . . .

My 3 year old son is being tested for crohns, actually the only thing missing of his diagnosis is that it hasn't been put to paper. Every few months since he was born we have gone to the Dr about his digestive problems and last year finally started getting tests done. Even so the Dr.'s have been telling me that its nothing and he will grow out of it until this new Dr. I have never heard of anyone diagnosed with crohns so young, but his symptoms fit the bill and the new Dr. says he has "markers" that indicate IBD or Crohns. He is mid flare right now and watching him role and scream, refuse food, and want to sleep or act up inbetween the bouts of pain is killer to me. Tylenol or IBprofen does nothing accept take away any fever he might have. I guess what Im after is some advice as to how I can help him, what to ask from the Dr., and any other advise you have.
 
So sorry to hear that your son is doing so poorly, gigamis. If I understand your post he has not been diagnosed but has shown "markers" in on the blood test? Has he had a colonoscopy or endoscopy, MRI, CT scan? You may not want to give him the ibuprofen as it can exacerbate issues in the GI tract with CD patients. There are a couple of parents on this forum with kids your childs age or round abouts that have IBD or are still on their diagnosis journey, I'll tag them...Farmwife, Suzysu, possibly Jenn, I know there are others but I am drawing a blank at the moment. I'm also going to tag My Little Penguin as she is a wealth of information and has wonderful advice about the testing process. I hope you are able to find answers for your son soon!
 
Hi again gigamis and welcome to the forum...:hug:...and you are not being desperately foolish hun, just a Mum is scared and worried about her boy. There are many parent's with children and sufferer's on the forum that have been diagnosed at your boy's age and younger so you are far alone in this. :hug:

What tests has your little guy had done and do you have copies of the results?

What are his symptoms?

Does he have any Extra Intestinal manifestations (EIM's)?
e.g. sore eyes, rashes, mouth ulcers, joint pain.

Do you keep a journal of his symptoms and daily functioning?
Have a look at the one in the wiki. They can be useful when trying to get a diagnosis...

http://www.crohnsforum.com/wiki/Diary-Inclusions

Could you give an idea as to your location so that others near you, or in the same country, can offer some advice as to where to seek help/opinions if need be.

As I said before, if there is any thought that he may have IBD, and it sounds like there is, please don't give him Ibuprofen. It is a Non Steroidal Anti Inflammatory Drug (NSAID) and they are contraindicated in those with inflammatory bowel disease due to the side effects they can have...causing gastrointestinal bleeding.

As you would well know it can be difficult getting relief for your boy until you nail that diagnosis, Farmwife will attest to that! :( I know how hard it is to see your child in pain and not be able to do anything about it. We will help all we can Mum and hopefully you can get that diagnosis ASAP and your boy can gain long and lasting relief, bless him.

Dusty. xxx
 
So sorry to hear about your little guy. He sounds like my little 3 yr old girl Grace.:frown:
Please PM anytime and I hope you get some answers to help him.

Hugs to you both.:ysmile:
 
Hugs
So sorry to hear about your son .
Has he only had blood tests do far?
If so a colonoscopy and upper endoscopy is generally needed to dx Ibd .
Has he had an upper Gi series with a small bowel follow through or MRI or ct scan?
What meds does the Gi have him on?
If your in the US there are good pediatric Ibd centers found on
Www.improvecarenow.com
Especially since your son is so young most gi's have do not have experience with kids under 10 years olds let alone under 5.
For pain have you tried hot packs ?
For eating ask your Gi about enteral nutrition.
It is easier on the gut and let's your son get the nutrients he needs until they dx and get the right med combo for him.
Your Gi should have samples and be able to write a script.
The script can be filled through a durable medical equipment company.
Most insurances have a durable medical equipment clause where they will cover x% this really helps with cost.

In the us the brands are:
Neocate
Elecare
Peptamen junior
Peptide junior

Some over the counter ones which can work but are harder to digest are
Kids boost and pediasure.
Search for the exclusive enteral nutrition thread most of the company links are there.
More hugs
 
:hug:
Gigamis I am so sorry you are on the rollercoaster too. It is heartbreaking trying to deal with a child so young having severe pain - and it doesn't help that many healthcare professionals just don't listen to what you say or often seem to care much.
At least the Dr you are seeing seems to be taking things seriously, it sounds like he needs to have some scopes to confirm the diagnosis (unless he has had them already).
Things like heat pads (wheat bags or hot water bottle) on his tummy, paracetamol (not ibuprofen), I use a homeopathic remedy when Freddy is in pain and that sometimes seems to work wonders when everything else seems to fail. You might consider dietary changes ie low residue etc but it is probably best not to mess around with things too much unless your GI suggests it.
I hope you get some answers for your little man soon xxxx

Update on Freddy: - More pink\Maroon poo today, lots of pain, very miserable all day, in severe pain after eating a small amount at dinner -vomited all his dinner up and now is running around like nouthing has happened!!!!:ywow:
 
Suzysu
I forget did they do an upper and lower scope on him???
Sometimes in little ones they can have an egid disorder
Which has a lot of similarities to Ibd but they have to be looking for the EOS-
Eosinophilic cells .

Here is a link
http://apfed.org/drupal/drupal/symptoms_of_EGIDs

What are the Symptoms of EGID?
Symptoms may vary considerably, depending on the area affected.

Symptoms include:
Nausea or Vomiting
Diarrhea
Failure to thrive (poor growth or weight loss)
Abdominal or chest pain
Reflux that does not respond to usual therapy (which includes proton pump inhibitors, a medicine which stops acid production)
Dysphagia (Difficulty swallowing)
Food impactions (food gets stuck in the throat)
Gastroparesis (Delayed emptying of the stomach)
Anorexia (poor appetite)
Bloating
Anemia
Blood in the stool
Malnutrition
Difficulty sleeping
Click to expand...
 
HI Gigamis, and welcome :)

Please, please don't ever feel foolish here ! We all understand your feelings and frustrations. :hug:

You have been given some great advice from Mlp and Dusty already, so I just want to wish you the best of luck and support.
I will also just reiterate , please try and refrain from any use of ibuprofen (nsaids) ~ as others have said, they are not good for anyone with digestive issues.

Hang in there mom ~ we're all here for you!
 
Thanks MLP!

They did both upper and lower scopes, said everything looked normal and said the biopsies were also normal (I don't have a copy of the reports). I will suggest EGIDs to them, do you know do they keep the biopsies after they have looked at them - could they look at them again or restain them?

I just don't get how can everything be normal in a child that has had vomiting and diarrhoea for over a year before the biopsies were taken - Do some people need multiple scopes and biopsies before a diagnosis is made?

I'm just thinking out loud!
 
Yes they keep them for a set time.
I asked the same thing to my doc. We will need to send the biopsies to another clinic that looks for ME of MIBD. I think I heard 16 months? I could be wrong.
 
They keep the slides for a while.
We had DS's restained after 6 months for mast cells.
Let me check with some folks there is a place in the uk that specializes in egids .
 
Thank you all very much :). I don't think he has EGID because he only vomits when he cries or coughs too hard and it triggers his gag reflex and even then its mostly a lot of dry heaving. I will start keeping a detailed record of his symptom activity and diet. The last Dr. he saw seemed to take it a bit more seriously, but its still like pulling teeth to get anything else done. I have written down the info on tests in your messages and will be asking about getting some scopes done and start pushing for other tests. The only thing done so far is blood tests and fecal collection for a parasite test. So after that I know he doesn't have parasites and he has markers for IBD or Crohns and that was last June. I have almost completely replaced milk with soy and am wondering if thats a good idea.
:sign0085:
 
Did the Gi or ped recommend you replace milk (cow's) with soy???
If its allergic colitis then that may or may not help since most soy milk is cross contaminated with milk protein since at least in the Us they are run on the same manufacturing lines.
If he is lactose intolerant then milk could be an issue but there is a test for it.
Little kids get a lot of their nutrients from milk so if you pulled it you may want to look at a supplement.
In the us there is bright beginning ( soy based ).
Also neocate , e028 splash , and elecare.
E028 splash comes in juice boxes and can be ordered from the manufacturer or script from the doc .
Unless he has been scoped or the doc told you to specifically pull a food I would be hestitant to do it.
It could be the difference of getting a true dx.
Since it can muddy the waters by slightly fixing things and you wouldn't know for sure what you were fixing .
If the Gi thinks it is crohn's I would ask why they haven't done a scope yet since that is standard of care.
Also if it isn't then what does the Gi think it is and what is the time frame to expect him to recover.
 
Update -
Less pain, no more vomiting (but is usually intermittent anyway), very subdued but with short bursts of energy (had to take him to a garden centre while we waitied for hubby to get his leg replastered at the hospital - he walked round slowly holding my hand then sat quietly cuddling his bear in the cafe while I had coffee - that is not normal behaviour for a 2 year old boy in my experience!). Nearly had to call an ambulance when he didn't eat his most favourite foods ;) (baked beans and potatoes) - he ALWAYS eats those no matter what - but he ate his yoghurt - so I didnt call the blue lights!!
GI nurse says take sample to GP, GP receptionist very grumpy about it and says I have to get it cleared with the GP as I have no paperwork, so waiting for GP to call back :( GI nurse says if bleeding continues (how long????) to call her back and he will need to be seen.
I am tired and want to sleep for 100 years and wake up when everyone is well again and I no longer have to organise my life around Drs and hospitals!!! - ok ive put my violin and tissues away now!!!!
 
I've been lurking the last day or two....my son has an upper GI w/sbft tomorrow. After 2 months we finally got in with the only pediatric gastro in town. The peds office did bloodwork that came up "normal" but the GI said given my history he would do more. He said they only did basic labs that might not have shown anything anyway.

My husband wants it to be anything but Crohn's (obviously I do too!) but I think that he is trying to rationalize symptoms away. He is very quick to attribute any stomach pain or bathroom issues to anything else. I understand, but my son is starting pick up on it. If he starts to have pain right after dinner, he'll tell me, "Oh, it's probably just gas." Or the ever popular, "I think I just ate too fast." He is the slowest eater ever!

The GI has also ordered a stool sample, and has made him go lactose free. He also mentioned checking for food allergies. I just want things to move quicker I guess. I had pain my entire childhood, and my mom took me to the doctor a few times over the years but no one did anything. By the time I was diagnosed at 19, my guts were a tangled mess of fistulas and ulceration. I just don't want him to go through that! I'm scared that we'll find something, and I'm scared that we won't.
 
Oh SaraAnn that sound like me dear hubby.
I started to put Grace right in front of him when the pains at their worst.
He got the point. Grace's labs are still somewhat normal but now she's pooing blood.
So I really could care less about the labs.
I hope you get answers soon.
 
Sarah Anne - big hugs - Of course you don't want him to go through what you did as a child but even if he does have Crohn's he won't go through what you did because you are doing something about it now and you are making sure he gets the test's he needs so that if the worst happens and he is diagnosed he won't get to the same state that you did.
I really feel for you - nearly cried when I read your post - sending you lots of strength for tomorrow xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
PS - my hubby is also the same 'its just a bug' - really? for 2 years now? How many 'bugs' can one kid get!!!!
but seriously good luck for tomorrow, will be keeping my fingers crossed that everything comes back ok - please let us know how it goes xx
 
Suzysu big hugs for you and keep pushing that GP dear ! I know all too well those feelings of revolving your life around drs appointments ~ no fun at all ! We spend nearly three full years that way; and this past year is a little less, but seeming to pick up speed now argh. Hang in there ! :hug:

SarahAnne hi :) Haven't seen you around in a while :hug: I can so relate to hearing those excuses of "I just ate too fast" argh ! My middle son still uses those same excuses and refuses to let me take him for any more testing, even tho his uppergi showed he had a narrowing and the radiologist said it looked like Crohn's to him. :( He is 18 now tho, so I can't force him; and he's away for a few months too so that doesn't help me trying to persuade. You are doing the right thing by pursuing testing for your baby !
Of course you don't wish this on him, but you are smart enough to know what could happen if he goes untreated. I remember your personal story from here, and your's was very similar to my daughters :hug: Hang in there and best of luck tomorrow !
We're here for you :)
 
Same here with Hubby (she's overtired which explains screaming and crying in bed at night) and test results that don't show enough to keep the Doctors happy.
Catherine, regarding Fodmap diet, she is not allowed any wheat spelt, Mannitol,sorbitol,Gluten,fructose,most beans or nuts,most dairy apart from hard cheese,processed food,onions and any spice with onion or garlic powder. Plus certain fruits or veg. I have a 6 page booklet here. The small list of what she can have, has to be in small quantities with meals 6 times per day. (this part not going well at all as eating hurts)Been doing this for one week and so far she is still in same amount of pain/nausea and the occasional bowel movement that either has blood in and dripping blood. Really hoping we see some improvement soon.;);)
 
Sarah Anne - Any news? how did the test go? - have been thinking of you.

Freddy passed some very dark poo and remained very quiet, He is still not really eating but poo is now disgusting mucousy diarrhoea that is pink tinged rather than a strong pink colour and he had a massive tantrum at the supermarket (lying facedown on floor kicking legs etc) - so I am taking these as a sign that he is feeling better! He does seem to have a bit more of a spark about him today, just wish he would start eating and stop regurgitating everything he does try to eat! - Hopefully the stool sample will show infection with a virus or something mundane like that!
 
The test went fine, Ewan struggled to keep the barium down but he got enough for the pictures. They said everything looked normal, no evidence of inflammation or anything that would suggest Crohn's. We still have labs and a stool sample to return. I don't have the lab slip in front of me, but I know the GI is checking for Celiac markers, H.Pylori, and some other stuff.

My husband was relieved. We went to see him at work after the test. "So everythings normal? It's just anxiety?"

It's a good thing looks can't kill; I'd be a widow today. I told him there were a lot of other things it could be, just because they didn't see anything on one test does not mean it's in his head (or mine!)

He had to go poop halfway through the test. 3 hard tiny pellets. His problem is constipation, and I think he might be having intestinal spasms because he says he feels like he needs to go all the time but nothing will come out. There's no failure to thrive here, he's probably slightly overweight for his height. I'm short, and so is my ex-husband so the height might just be genetic.

If nothing shows up in the blood work or stool tests I guess I will just calm down for a while. There were several days last month where he was crying in pain after eating, and it just scares me to think he might be going through what I did at his age. I know that my husband and mom think I am overreacting, but I will never forgive myself if I ignore symptoms and something turns up later.
 
I don't know your husband and mom, but I suspect they'd like for you to be overreacting more than they actually believe that you are. Of course you should do all due diligence given the family history. Here's hoping it's not IBD of any kind and that it turns out to be something mundane.
 
I'm with Muppet on this one! - maybe they act like your overreacting so as not to make the situation worse (Im not sure that makes sense but I know what I mean! - like maybe they don't agree with you all the time so as not to worry and your boy further?), but I expect they are glad that you are taking things seriously and doing everything you can for your boy xxxx
 
I'm glad the test came back clear.
There's a lot of things I could write about families but I'm in the same boat you are.
Still something is wrong! It has to be figured out.
We don't have the luxuries of sitting back and saying.... good his test is clear.
We still carry the burden of getting help for them.
Can you tell what kind of day I've been having. Sorry!

I hope you get answers to whatever this is. That goes for all of us.
 
Glad the tests were normal.
Fwiw all of my son's tests were normal except the scope.
Hope you get to the bottom of it.
 
Wouldn't it be nice if symptoms were normal, to go along with tests? Then no one on here would have anything to worry about.:yrolleyes:
 
I so agree with the above posts. I see that parents of undiagnosed children experience a lot of the same reactions. Keep going Sarah Anne!
 
So yesterday Freddy's nursery call me because he is only passing small amounts of mucous, has been sleeping loads, and is clingy and not happy. This morning he passes a large amount of black\very dark green diarrhoea (possitive for blood on the urine dipstick), and is bent over crying (i guess tummy pain), but also has moments of being 'normal' - the faecal results should be back today - If it doesn't show some kind of infection I will totally freak out!!!!
 

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