Undiagnosed Kids

[Farmwife]

We're big on soy in my house but I've read lots about soy potentially containing or mimicking hormones and now I'm loathe to suggest it until I do more research.

That's why we got off it muppet. My hubby studied the effects of GMO soy and it's effects and he said no way and now were soy free.

 

[my little penguin]

Rice milk is not recommend - high in arsenic .
Kids boost would be the best since its complete- lactose free and soy free.
Good luck

 

[Suzysu]

Well the special really expensive soy baby formula milk was spat out in seconds - redecorating the kitchen with a resounding 'I no like mummy', and sadly the almond milk went the same way soon after!! (however he did take the almond milk in his cereal this morning - no problems!!).
I now have the damn virus and I can say I totally understand why he is not eating and is so grumpy owwwwwwwwchy abdo spasms!! He is has had a lot of pain today but NO BLOOD!!!!! YAY!!

PS chemist would not give me any of the nutritional shakes or whatever you call them - I guess you need a prescription for them, there were a few convalescing type drinks but they were all milk based.

 

[Crohn's Mom]

:hug: Suzysu :hug:

I feel so bad for you ~ nothing worse than catching something in the middle of trying to take care of a sick little one :ymad:

I think I've had a similar bug this week myself, but I don't have any little ones running around spatting out yucky "milk", or projectile vomiting anymore :lol:

Hang in there and I hope you feel better soon ! :ghug:

 

[Suzysu]

:ylol2:
Ok - I guess you are all familiar with the phrase 'I spoke too soon'!!

So Freddy had a ton of disgusting liquid, blood tinged diarrhoea before dinner, he did eat a small amount of pasta and tomato sauce for dinner.

After dinner I decided to attempt to 'manage' 3 excited small children in putting up the christmas tree etc in our Lounge. Mid way through trying to put on the christmas lights with the 'help' of my 4 year old Freddy decided to start vomiting, our lounge has a cream carpet (not my choice - from the previous occupants of the house, but as we cannot afford a new carpet I am anxious to keep it clean). In my panicked attempt to limit the potential tomato stain I grabbed Freddy and carried him through the hall and into the kitchen - while he vomited all the way - this was not my best idea as you can imagine. While I was cleaning up the copious mess and dealing with Freddy my other two carried on 'decorating' - I will leave the state or our downstairs to your imaginations!!!!

Poor Freddy he has been so miserable all day - this virus is just going on forever (2.5 weeks now). Hopefully tomorrow will be a better day!!:confused2:

 

[DustyKat]

@SarahAnne :hug: I am so sorry to hear about your boy, bless him. I can't even begin to imagine what you must be going through when you also have this disease, it must be so very overwhelming. Sometimes for the significant loved ones in our lives, and I don't mean for this to sound flippant or disrespectful, they have the 'luxury' of retreating into denial as a way of coping with what may be the awful truth but someone has to tackle the issues head on and that someone is you. :hug:
If I were in your shoes I would be doing the same thing. Doggedly pursuing until you have a solid answer one way or the other. I know full well you find no joy whatsoever in putting your lad through tests but I also know that knowing what you do you couldn't live with him having to endure years of unexplained symptoms. :hug:
Sending loads and loads of love, luck and healing thoughts your way. :heart:

@Suzysu - Oh my goodness, what an awful time you are having and poor little Freddy, bless his cotton socks...:hug: Thank goodness the issues can be explained away as a virus! YAY! But it sucks that you are now both dealing with it...bleh! I hope you both are soon over it and starting to feel fab...:getwell:

The milk of choice for Sarah at this point in time is oat. I don't know that Freddy would think it was the ants pants though! :eek2:

Good luck guys, :Karl:
Dusty. xxx

 

[Pavsky]

Hie there! I have had Crohn's for 15 years, and I have 4 kids. My youngest son, Aman, was diagnosed just last year at age 7.5 with having Crohn's too. His early symptoms were returning low grade fever despite repeated antibiotics, eczema around the eyes, oral ulcers, abdo pain and eventually he had erythema nodusum, lesions on his legs. Prior to all this happening he had a bad case of conjunctivitis. He was also not gaining weight and very tired all afternoon. Eating was a chore, and he developed gastritis. He was asked to try a drink called "Modulen" with no food for 8 weeks, and he managed it, and all his symptoms went away. His ESR was 80+, it went down to 15. All his blood work is normal, including iron levels which went up. He is doing well, but not on any meds at the moment. The doc said to wait and see as some kids just remain well. I pray he does. My other 3 kids (two older boys and a girl) are well so far. I pray they remain so. I hope all of your kids stay well. Big hugs to all Mums.

 

[Farmwife]

Hi and welcome the the forum.
Sorry you had to find your way here.
I know more wonderful parents will be around to give there advice and support.
My only word of caution is that crohn's can fester. Meaning your dear son looks well but inside the inflammation can be causing lots of damage. So please be careful with that.
But I'm so glad he's feeling well.

 

[Farmwife]

:ylol2:
Ok - I guess you are all familiar with the phrase 'I spoke too soon'!!

So Freddy had a ton of disgusting liquid, blood tinged diarrhoea before dinner, he did eat a small amount of pasta and tomato sauce for dinner.

After dinner I decided to attempt to 'manage' 3 excited small children in putting up the christmas tree etc in our Lounge. Mid way through trying to put on the christmas lights with the 'help' of my 4 year old Freddy decided to start vomiting, our lounge has a cream carpet (not my choice - from the previous occupants of the house, but as we cannot afford a new carpet I am anxious to keep it clean). In my panicked attempt to limit the potential tomato stain I grabbed Freddy and carried him through the hall and into the kitchen - while he vomited all the way - this was not my best idea as you can imagine. While I was cleaning up the copious mess and dealing with Freddy my other two carried on 'decorating' - I will leave the state or our downstairs to your imaginations!!!!

Poor Freddy he has been so miserable all day - this virus is just going on forever (2.5 weeks now). Hopefully tomorrow will be a better day!!:confused2:

:shifty-t:My son was throwing up years ago and without thinking I rushed him to the kitchen sink and let me vomit there. I still hadn't done the dishes.

Is Freddy any better?:rosette2:
Grace has been having an ok week-end. Nothing like getting some family time to cheer us up.

 

[Pavsky]

Forgot to mention that he's been having regular check ups and blood work, so we are monitoring him. Having lived with Crohn's for 15 years myself I am aware that it festers thanks for the reminder and the good wishes.

 

[Suzysu]

pavsky - I am glad that your son is doing well at the moment - and long may it continue!! I am sorry though that you have had to deal with both yourself and your little guy having crohns, at least you have been through much of what he has gone through so are best placed to help him.

FW - He is still pretty miserable, still got disgusting diarrhoea, and not eating much but he has taken a little of the almond milk so that is good. Just freaking out about his height charts -has dropped quite a few centiles I wonder if his last reading was a mistake though as I measure him a few cm below it - and I don't think children can shrink height wise!!!!
Glad you are having a good weekend, get some rest while things are going well and enjoy that precious family time!! xx

 

[Suzysu]

Dusty - we need a santa smiley!! xx

 

[my little penguin]

Hope your day is better.

 

[DustyKat]

Oh so many choices:

Dancing:

Waving:

Eating:

Naughty:

Crazy:

Dusty. :ybiggrin:

 

[Crohn's Mom]

thanks Dusty !
and of course...Naughty Santa is my favorite ~ but Crazy takes a close 2nd!
:rof:

 

[my little penguin]

Love the santas

 

[DustyKat]

Naught but coal in your stocking this year!

Oh man...not even a cotton reel to go with the coal???

 

[happy]

What is a cotton reel?!

 

[DustyKat]

What cotton is wound onto.

 

[izzi'smom]

I'm going to guess a cotton reel can be considered a toy in some parts, so no.

 

[Farmwife]

:shifty-t:I call that thread where I'm from. Is it used for something else where your from?

 

[jmckinley]

That's a "spool" in Alabama :biggrin:

 

[DustyKat]

That's a "spool" in Alabama :biggrin:

We have spools here too...it's what those that have partaken a little too much in the demon drink call a pool. :ybiggrin:

Not sure what you mean Farmwife, except for thread, I know what that is...maybe I am pissed and need the spool! :lol:

Hmph, well you can just have the naughty Santa Angie for being a Bah Humbug! :ylol2:

 

[izzi'smom]

:rof:

 

[Crohn's Mom]

Holy cow ~ patience really is good sometimes ! :ylol2:

Just returned from JJ's GI visit.
We went over all of his persisting symptoms and she's paying attention!
He is scheduled for a Upper GI w a small bowel followthrough this Friday.
She has also ordered a Fecal Calprotectin / Lactoferrin test.
And, depending on the results of the upper GI, she is going to do a PillCam. We just have to make sure he doesn't have any signs of a stricture first.

She also agreed that he needs a higher dose of Omeprazole, so now he is going to try 20mg, twice a day, for 8 weeks and if that helps than prn.

No bloods ordered just yet since he just had them done in July by his Endo. I'm ok with that for now.

Interestingly we also discussed in depth how Gab is doing now since she hasn't seen her since we switched to the Mayo Clinic. We both think that gab should try 8 weeks of exclusive EN to try before any thoughts of possible surgery again. I'm going to discuss this with Gab and see how she feels about it, and then we can present this idea to her GI and see how they feel about it.

I'm very happy that I didn't feel l like she thought I was over reacting, or neurotic, or whatever this time around; as a matter of fact I almost got the feeling that she's more concerned about possible IBD with JJ now than I am ? :lol:

At least the ball is rolling in the right direction again

 

[muppet]

Statistically odds of a sibling also having IBD is around 30% I think. Decent reason for care to be taken.

 

[muppet]

Ah, fair enough, and I hope so, too of course!

 

[my little penguin]

Hugs glad the Gi visit went well.
If the upper is clear I would still push for a scope/ pill cam combo.
For DS that was the only way we found he disease through biopsies.
All other Tests looked clear and good especially if you are catching it early.
Plus with the scope they can place the pillcam where they want it.
Hugs

 

[Suzysu]

glad the GI visit was productive and glad she is taking you seriously, and good luck for Friday - let us know how it goes xx

 

[Farmwife]

YA!!!! For good GI appointments.
I hope you get answers soon

 

[Crohn's Mom]

Thanks mlp
He was scoped a little over a year ago - upper and lower - there was (non specific) chronic inflammation in all areas.
She wants to do the pill cam - especially if the upper GI doesn't show us anything. Just have to be sure there's no sign of a stricture first.
She did mention she may have to scope him again, but I think she's trying to do less invasive tests first

 

[my little penguin]

Not to discount your doc but how did they treat the chronic unspecified inflammation they found last year?
I would still push for a scope / pill cam since they know he had previous inflammation going on.
Did they have an explanation for the inflammation ?
Did they do an eosinophilic count on the biopsy slides ?
If they caught the disease early there may not have been ulcers yet( DS does not have any)
The only reason we got the Ibd crohn's dx was due to the granulomas found- which is hit or miss on biopsies. DS's first scope looked visually normal .
I would really push for both and then a game plan on how to stop the inflammation .
I would not want to wait for damage to first ptove he had the disease or worse wait until they found a granuloma.
Hugs.

 

[my little penguin]

How is IBD different from Irritable Bowel Syndrome?
IBD develops due to inflammation in the intestine which can result in bleeding, fever, elevation of the white blood cell count, as well as diarrhea and cramping abdominal pain. The abnormalities in IBD can usually be visualized by cross-sectional imaging (for instance a CT scan) or colonoscopy. Irritable Bowel Syndrome (IBS) is a set of symptoms resulting from disordered sensation or abnormal function of the small and large bowel. Irritable Bowel Syndrome is characterized by crampy abdominal pain, diarrhea, and/or constipation, but is not accompanied by fever, bleeding or an elevated white blood cell count. Examination by colonoscopy or barium x-ray reveals no abnormal findings.

From:
http://patients.gi.org/topics/inflammatory-bowel-disease/#tabs3

How is CD diagnosed?
There is no single test to confirm the diagnosis of CD. Instead, multiple tests are usually used in combination to help arrive at the diagnosis depending on the symptoms that lead individuals to seek care. Ultimately, a colonoscopy or flexible sigmoidoscopy must be performed to directly visualize the intestine internally and to obtain small tissue samples (biopsies) for evaluation under the microscope. Other imagines studies can be used in conjunction with a colonoscopy to help in the evaluation including a barium enema, upper gastrointestinal series (UGI series) with small bowel follow through, computerized tomography scans (CT scans or 'cat scans'), magnetic resonance imaging (MRI) or a pill camera study (capsule endoscopy) but are not mandated. Blood tests which look for antibodies and markers of inflammation along with stool specimen tests for hidden blood and infection may also be used to help confirm or exclude the diagnosis of CD

 

[Crohn's Mom]

Not to discount your doc but how did they treat the chronic unspecified inflammation they found last year?

No. She prescribed Prilosec for 2 weeks.
Don't worry about discounting the doc, or putting your two cents in with me, I don't mind a bit. And trust me ~ it has been a crazy roller coaster ride of opinions/questions/emotions with me and this ped GI. I have gone back and forth sooo many times ~ quite a bit of it in the beginning of this thread.
I actually read through the first 8 pages of this again today and it brought back so many memories of my feelings and apprehensions
Regardless, I made the decision to go back to her again for now..right or wrong ya know. But I have NO problem with someone disagreeing with me ~ I am here not only to get support, and give it as well, but also to LEARN.

I would still push for a scope / pill cam since they know he had previous inflammation going on.

I will push for the pill cam as long as there's no sign of a stricture/narrowing. After that, if we still don't have acceptable answers than I will either push for another scope, or will follow through with my thoughts of another opinion from a children's hospital GI. ( I have admittedly been very wishy washy with this as well)

Did they have an explanation for the inflammation ?

If I remember correctly, she said it could be from soda ? :confused2:

If they caught the disease early there may not have been ulcers yet( DS does not have any)
The only reason we got the Ibd crohn's dx was due to the granulomas found- which is hit or miss on biopsies. DS's first scope looked visually normal

Gab had granulomas all throughout her digestive tract with her first scopes at 9 yrs old and unfortunately still wasn't diagnosed until 16. JJ's biopsies did not show granulomas , only mild chronic inflammation.

I would not want to wait for damage to first ptove he had the disease or worse wait until they found a granuloma

I live with the fear every day that something is festering in him, as it did his sister. However, I did take a step back from all the doctors and the testing to take time to "watch". I was very concerned that I may have been "projecting", as at the time of my first suspicion my middle son was also starting to show symptoms as well. Also, Gab had just had her first surgery and had a temporary ileostomy unexpectedly placed a few months before.
I look back on my posts from when I started this thread and think 2 things...

1) I had VERY valid reasons for pursuing a diagnosis with both of my sons
2) I was VERY stressed out and overwhelmed and scared ~ and neurotic ~ out of my mind that my boys were sick too and I was going to do everything I could to make sure they (doctors) didn't "miss" it like they did her sister

So here I am again pursuing answers. I am much calmer as far as "immediate fear". Whereas I would hate the thought that he is much worse on the inside than he even feels, there's nothing I can do to change the path we have already gone down. All I can do is try and keep my anxiety about it all under control, and take it one day at a time

Sorry this is so long MLP, but I felt you ( and others) deserved an explanation as to where I am coming from :kiss:
But please...by all means, keep pushing me and asking questions and giving your wonderful advice ! I truly appreciate it and it helps me think !
:ghug:

 

[Suzysu]

Crohns mom - :ghug:
I am not a Dr nor am I as experienced with crohns as most of the people on this forum but I thought that if you had a person showing GI signs and they had granuloma's on their biopsies that was pretty much diagnostic for IBD? I don't know the full story but I am so sorry that Gab didn't get diagnosed the first time - I actually can't believe it - I hope you sued the ass of the Dr that missed it and I hope that they are no longer in practice (I am assuming that this is not the same Dr that you are seeing with JJ?).
I totally understand when you talk about not wanting things to get missed but not wanting to rush into anything either - it is a tricky balancing act - and it sounds like you have the insight to monitor JJ's condition and to raise concerns when it is needed. I hope you get some answers with the less invasive tests - sending big hugs to you and your family :ghug:

 

[Crohn's Mom]

I am not a Dr nor am I as experienced with crohns as most of the people on this forum but I thought that if you had a person showing GI signs and they had granuloma's on their biopsies that was pretty much diagnostic for IBD?

From my understanding at the time granuloma's are indeed indicative of Crohn's disease, however they are not specific to CD.

I don't know the full story but I am so sorry that Gab didn't get diagnosed the first time - I actually can't believe it - I hope you sued the ass of the Dr that missed it and I hope that they are no longer in practice (I am assuming that this is not the same Dr that you are seeing with JJ?).

Ok ~ this may upset some people, but I'm an honest person so I will just say it~ Yes, JJ is seeing the same GI.
NO, no law suits.
I am ok with this for now.
I will attempt to explain, and hopefully it makes sense

Recently back in November when I had to take Gab to the ER at Mayo, I guess her and I both had an AHA moment of sorts ?
We went in thinking that the sores on her resection scar were infection, or old sutures coming through.
We left with the knowledge that it was actually two fistulas
That being said, on the way home we started talking about her bad luck, this crazy disease, etc. We were in such disbelief that her disease was back so soon, and SO aggressively AGAIN.
That led us to bringing up her old ped GI ~ we started discussing the roller coaster ride we went through trying to get her diagnosed, and then getting her into remission, and now were right back on that ride.
We discussed the vast amount of meds that she has been on that have failed her, all the hospital admissions, tests, doctors appointments, etc. We discussed all of the doctors we BLAMED for her being such a mess inside when she finally had her first surgery.
Then one thing led to another and I was like hey, you know what ~ we have you in one of the top hospitals in the world, with a team of amazing doctors now. They have given you and your case amazing attention and medication and research and surgery and after care and now look at you. It's ALL back, and just as aggressive as it was when the ped GI was trying everything she knew how to help you.
We came to the conclusion that this was NOT all the previous doctors fault ~ its the damn diseases fault ! The amazing doctors she has NOW can't keep her disease from raging through her and they have every means available !

Anyhow, while I do still have many reservations about the doc still, I don't believe she was "liable". It's a VERY long story as to everything gab went through getting to this day, from when she was 9, and I couldn't possibly put it all here. But, I am comfortable right now letting this doc run the tests on JJ, the same tests that any other doctor would be doing at this point with him. Also, she knows Gab and her case very well and that is to our benefit at this stage in the game.
I don't intend on staying with her if he is diagnosed, but I'm not positive. She's usually willing to listen to us and is not opposed to discussing treatment and how WE feel about it and what WE want. I honestly wasn't educated enough on CD when gab was 9 to question things too much; so if I were to blame it ALL on that doc, than I am just as liable for Gabs illness quite frankly. :yrolleyes:

I hope that all makes sense ? Sorry, I didn't mean for this post to be this long either ~ trust me I could have gone on babbling much longer :lol:

 

[my little penguin]

Glad you got her help and are looking into JJ.
There are only two reasons for granulomas in the intestine.
Ibd and wegners granulomtous ( sp?) - kids have low immune systems constantly sick etc...
We had this explained to us by a very well known Gi when we took DS for a second opinion about whether he even had Ibd since there were no ulcers just inflammation and granulomas.

After the pillcam please look for a second opinion Gi at least since the first one may not be as informed about odd presentations as your lo may need.

As you said the disease is still ugly but 2nd and 3rd opinions are really helpful . They have been for DS.

Llater when I get off the phone I will post the paper that states there are the only two things that can cause those.

 

[Farmwife]

It makes sense to me Tracey, but then again ......:shifty:
I reason with a three year old on a daily basis.:redface:

I hope you get the answers you need for both of them.
:heart:Hugs:heart:

 

[my little penguin]

Opps - forgot the one important detail there are different types of granulomas that can be found in the Gi tract . So for the noncasesting ones DS had well Gi said it could only two things and he didn't have the other one.
Your dd granulomas may not have been that type.

 

[Suzysu]

Crohn's mom if I were a millionare I would charter a plane over to the US just to come and give you and your family a hug!! - you are an amazing person :ghug: Given the same situation I just don't know if I could do the same - but would strive to do so. I hope JJ's tests go ok, I will keep my fingers crossed for you guys xxxx

 

[Crohn's Mom]

Suzysu you're so sweet
Thanks a bunch!

:hug:

 

[dannysmom]

There are only two reasons for granulomas in the intestine.
Ibd and wegners granulomtous ( sp?) - kids have low immune systems constantly sick etc....

I've read that certain bacteria can also cause granulomas ...

and now I just read your follow up on differnt types of granulomas
thanks

 

[Farmwife]

Crohn's mom if I were a millionare I would charter a plane over to the US just to come and give you and your family a hug!! - you are an amazing person :ghug: Given the same situation I just don't know if I could do the same - but would strive to do so. I hope JJ's tests go ok, I will keep my fingers crossed for you guys xxxx

That's sweet Suzysu but...:shifty:
I mean what are we? Nothing to you?
Ok, whatever.
We write you nice things.
Fine, so be it.
I pm all the time and ask about Freddy.
But take a flight to visit her. Hope you have fun.
The rest of can sit here and feel like chopped liver.
Like I said whatever!
I mean when you favor the one you hurt the others,
but if your OK with that.



:rof::rof::rof:

 

[Crohn's Mom]

Attention Parents:

For the record,
When you're child gets scheduled for an Upper GI w/ Small Bowel followthrough, and a stool test ~ when they (the child) comes to you after you are home, and the Upper GI is over and says btw mom, I need to poop should I do the stool test now ? The answer is NO ! :rof::rof:

I'm quite sure the lab is not interested in checking your expelled barium !!
:rof::rof:

( I can't believe I said yes to this...:ywow:....obviously experience means nothing in my world LOL)

 

[Suzysu]

OK ok ok ok FW - I would also charter a plane to your house, take you and your family out for a fancy meal, and look after your kids while you had a relaxing spa day.
Happy now?
xxxx

 

[Farmwife]

That's all I'm asking!

 

[izzi'smom]

LMAO at the barium sample. I always forget to hit up this thread...so sharing some love, T...and a hug! XO!
We got checked by infectious Disease for another disease causing granulomas (just because Izz was presenting SO much like UC and we were facing surgery...can't remember what we were tested for now...losing my memory like Dusty!

 

[rhosymynydd]

Just for calorific value, the doc prescribed Nutricia choc puddings, each small pot has 200 cal. they also come in vanilla but taste awful. Have you ever considered goats or sheep's milk? It is now quite easy to obtain in the UK although goats milk smells if it is made from a farm that keeps billy goats as well. There is a distinct difference in flavour and taste so try and buy a commercial brand rather than a "local" farm variety due to the taste aspect only. Goats milk is also available on prescription as it is expensive. http://www,thebowelmovement.info also try linking up with mums at http://www.champsappeal.co.uk, they have a lot of kids with the same dietary problems, based in Wigan but worlwide members.

 

[Crohn's Mom]

If stool samples for tests are collected in the evening- what are you supposed to do? Refrigerate ? Or leave them at room temp?
Help ! LOL

 

[Farmwife]

Fridge.:hug:
I had many in time past over night. Poor hubby, tired and thinks he's grabbing katch-up.:rof:

 

[rhosymynydd]

This is the nutricia coding for the choco puddings (that really taste ok - like the original baby choc puddings) for prescrption only are: Forticreme complete choco code: 65621. They have "high calorific value, gluten free, high energy, nutrionally complete" and are recommended for Crohn's colitis children and adults, without them my weight loss would have been dreadful and I know 2 local crohn's kids who are thriving on them, which is how my dietician knew about them. Also contains vit d. (plus others). There is also a variety of soups now on prescription with the same calorific value but cannot trace the manufacturer as they changed the name last year, they did chicken and a veg variety - hope this might help.

 

[DustyKat]

Probably too late now T but it depends on what they testing for:

If it is for infection and/or parasites then you refrigerate but you can always err to caution and refrigerate anyway.

Dusty.

 

[Crohn's Mom]

Thanks Dusty and FW

There were two of them that didn't need refrigerated for sure, ( i had directions for those) but the other 3 tubes didn't have any directions so I had no clue. Hopefully I didn't screw them up :stinks:

 

[Suzysu]

5 tubes - WOW!!!! that's a lot to fill!! - how long will it take to get some results? xx

 

[Crohn's Mom]

That's what I thought Suzy! LOL
I'm assuming less than a week for result ?

 

[Suzysu]

I suppose it depends what they are testing for, Freddy's last sample was handed in on Monday and the results were back by Thurs\Fri. - Hope you start getting some answers soon! xx

 

[Crohn's Mom]

Just a quick update to say jjs upper GI was completely normal

 

[my little penguin]

Wonderful cautious news.
I am jaded since DS first upper Gi sbft was the first time I ever had heard the word crohn I reference to DS as in we were extremely lucky they could tell us right then crohn was definitely not something he had to worry about .

 

[Crohn's Mom]

Wonderful cautious news.

My sentiments exactly !

 

[Suzysu]

Crohn's mom - YAY!
MLP - YAY!

hugs to everyone!

 

[Suzysu]

:ymad::ymad::ymad::ymad:
just got back fro Freddy's GI app, he has lost 700g since last app, continues to have diarrhoea with lots of yellow mucus, and often has pink\ dark red BM's despite me removing everything red\pink from his diet.
Freddy has episodes of severe abdominal pain lasting 10mins or so and other episodes where he is miserable for several hours. He never has these episodes at the hospital and today was giggly and cheeky during our appointment! (which bearing in mind I had just written an A4 page of how ill Freddy had been and how I was worried about him and how I didn't think that as this has been going on for 4 weeks it could just be a virus - was actually not helpful).
The Dr thinks Freddy has a dysmotility problem and went on about possible diet, meds, barium investigation blah blah blah. but as he has just had the virus and probable lactose intolerence we are not going to do any of that and are just going to wait and see AGAIN.
I don't think the Dr thinks that Freddy does have blood in his stool.
I know he is right to wait and see it just seems like we are going through this continous cycle of wait and see, Freddy gets better,Freddy gets worse, Freddy looses weight, Freddy puts it back on, and I just think well how long can we 'wait and see for?' This has been going on since Freddy was 5 months old and he is now 2 and a half. But at the same time I know if the Dr was concerned he would do something, and any investigation he has had has been normal (except for the low iron and anaemia) - I just know this isn't normal and I hate to see him in pain but I don't know what else I can do to help him.
Sorry I ust feel so depressed about it all and feel like I am going totally mad.

 

[muppet]

I think it's good that he's being cautious with such a little patient. I can certainly understand the frustration, though. I don't know Freddy's whole history, but it sounds like the doc knows what could be done and is trying not to be overzealous and cause more issues.

 

[Suzysu]

Thanks Muppet - you (and the Doc) are totally right! I think I am just tired and finding it hard to deal with everything that is going on at the moment (stuff other than Freddy!), If the Doc thought it was anything to worry about he would have advised more tests etc and I should take that as a very positive sign! Thanks! xx

 

[muppet]

Well, you should always trust your instincts and if you think the doc is being too cavalier or not responding appropriately to Freddy's needs, you need to take him to task or find a new doctor, but it doesn't sound like you're at that point, to me, based on your last few posts anyway.

 

[Farmwife]

Hang in there Suszy. Your doing a great Job.

muppet- Are you the lite in a dark world; or are you the darkness and WE bring lite into your world????

 

[muppet]

The school shooting today in Newton CT was just a few miles from my home. We don't know the victims but we're pretty upset.

 

[Farmwife]

Yes, isn't that horrible. My heart breaks for one and all.

 

[Suzysu]

Didn't hear the news last night, so only heard about it the morning - totally shocking -thinking of all the affected families.

 

[Crohn's Mom]

Got a voice mail from the GI nurse today....JJ's stool tests were all normal/negative.
Those are including the fecal calprotection test.

I am happy to hear this.

When we went for his first follow up appt. the other day with the Endo doc, he had grown an inch and a half since starting his HGH this past end of August;
So...I'm not sure what to do, or where to go from here, but I have decided to delay the pill cam test for now.
With these "normal" test again recently, I don't want to traumatize the kiddo ya know ?

He has a follow up appointment in a month + so I will keep track of his symptoms until then and see how he feels at his appt. then.
My biggest concern is his headaches the last few days ~ they are bad enough that he is complaining quite a bit, so I will keep a close eye.

We were warned about headaches when he started the HGH but it hasn't been an issue since.
I have a theory tho...
Do you think that his body has finally started to produce his own growth hormone so therefore, his dosage may possibly need lowered now and thats whats causing the headaches ?
He's not due for blood check for a couple of months to check his IG-1 (?) levels, but I could always request it be done sooner if the situation requires it.
Uggghhh....
I am honestly so confused with him lately.
I am starting to convince myself that the HGH could be helping his "digestive issues" and maybe I should back off of any further medical investigations ??

Just having a moment maybe....??

 

[muppet]

I'm only speculating based on very little knowledge, but my intuition would be that if HGH was going to have any effect on Crohn's, it would be to exacerbate it rather than resolve it, since it's an immune booster. Don't be lulled, keep an eye on things.

I totally get not wanting to go full bore into more testing when you just want to give the kid a rest. Just be vigilant.

EDIT - as it turns out, looks like there was a study back in 2000 talking about using HGH as therapy for Crohn's, specifically for short bowel syndrome for those who had been resected. Haven't found anything more recent yet.

 

[dannysmom]

Hi T. I'd be thinking the same things ... and would be just as confused!
Danny has now been sick for 4 years ... and we have no clue still. His follow up with his GI is next week. The last month has been a slow progression down hill with more ab pain and more fatigue. (D still there a couple times a day). Jaw pain started a few days ago (for no apparent reason as always). He missed school yesterday & today because of the ab pain & he came down with a cold. It is so disheartening having an undiagnosed child for so long.

 

[muppet]

Hmm I don't know Danny's whole story as I haven't read it yet, but looking at your sig, is the lack of response to prednisone one time the only reason the dx is being questioned? Prednisone usually, but doesn't always work. Sarah had a very scary period where it stopped working entirely and that's how we briefly ended up on Remicade.

 

[muppet]

Oh my goodness I just read your story link. I'm so sorry that Danny has had such a rough time of it. Is there any utility in looking into Mayo, or Cleveland or something, for him?

 

[my little penguin]

Dannysmom -Yes what muppet said - DS first round of pred did not help at all.
Apparently not high enough of a dose long enough etc...
Second time helped some but still not enough for 3 months .
It wasn't until he was on remicade a while (8 weeks)after being on pred for 3 months that he actually got better.

No one knows why but the whole thing finally worked .

Ever try h1/h2 blocker combo or cromyln since it can stop unexplained stomach pain.

 

[dannysmom]

Thanks Muppet and MLP. It wasn't a lack of repsonse to prednisone, but an extremely negative response. I asked about possibly trying another steroid but the GI did not want to risk it. He has tried some H1 blockers (ie claritin) and H2 (zantac) without any benefit. I mostly think we've exhausted all of the standard medical options (by seeing >30 doctors at children's hospitals like Columbia/NYP, Mount Sinai NY & Johns Hopkins; and researching options myself for way too long now) ... I wonder if Mayo or Cinn would do anything different. Good news is he is not that bad ... and we keep an eye on that closely. Some treatments have had negative impact that lasted for months and his current GI feels he is not quite desperate enough to try biologics. Thanks again for your support ... and encouragement.

 

[Suzysu]

:confused2::confused2::confused2::voodoo:
2 weeks no vomiting, mostly diarrhoea but a few normal poo's as well, minimal painful episodes - last night bending over and crying in pain, holding hands over lower abdomen, lying on foor (head down and bottom up - odd position) crying with hands on tummy. Today very unhappy all morning, looking pale, coughing (normal for him), vomited up all lunch (but managed to get him to the bathroom just in time - hurrah!!).
Another virus? when is this endless cycle going to stop? Sorry just needed a quick vent - feel better now!!

 

[my little penguin]

Have they considered cyclic vomiting syndrome for him?
Looked at mitochondrial disorders ?

What is cyclic vomiting syndrome (CVS)?
CVS is characterized by episodes or cycles of severe nausea and vomiting that last for hours, or even days, that alternate with intervals with no symptoms. Although originally thought to be a pediatric disease, CVS occurs in all age groups. Medical researchers believe CVS and migraine headaches are related (see CVS and Migraine).
Each episode of CVS is similar to previous ones, meaning the episodes tend to start at the same time of day, last the same length of time, and occur with the same symptoms and level of intensity. Although CVS can begin at any age, in children it starts most often between the ages of 3 and 7.
Episodes can be so severe that a person has to stay in bed for days, unable to go to school or work. The exact number of people with CVS is unknown, but medical researchers believe more people may have the disorder than commonly thought. Because other more common diseases and disorders also cause cycles of vomiting, many people with CVS are initially misdiagnosed until other disorders can be ruled out. CVS can be disruptive and frightening not just to people who have it but to family members as well.
[Top]
The Four Phases of CVS
CVS has four phases:
Symptom-free interval phase. This phase is the period between episodes when no symptoms are present.
Prodrome phase. This phase signals that an episode of nausea and vomiting is about to begin. Often marked by nausea—with or without abdominal pain—this phase can last from just a few minutes to several hours. Sometimes, taking medicine early in the phase can stop an episode in progress. However, sometimes there is no warning; a person may simply wake up in the morning and begin vomiting.
Vomiting phase. This phase consists of nausea and vomiting; an inability to eat, drink, or take medicines without vomiting; paleness; drowsiness; and exhaustion.
Recovery phase. This phase begins when the nausea and vomiting stop. Healthy color, appetite, and energy return.

From:
http://digestive.niddk.nih.gov/ddiseases/pubs/cvs/index.aspx

Possible Symptoms
Brain

Developmental delays
Dementia
Neuro-psychiatric disturbances
Migraines
Autistic Features
Mental retardation
Seizures
Atypical cerebral palsy
Strokes


Nerves


Weakness (may be intermittent)
Absent reflexes
Fainting
Neuropathic pain
Dysautonomia - temperature instability&
other dysautonomic problems
Muscles

Weakness
Cramping
Gastrointestinal problems
Dysmotility
Irritable bowel syndrome
Hypotonia
Muscle pain
Gastroesophogeal reflux
Diarrhea or constipation
Pseudo-obstruction
Kidneys

Renal tubular acidosis or wasting


Heart

Cardiac conduction defects (heart blocks)
Cardiomyopathy

Liver

Hypoglycemia (low blood sugar)
Liver failure

Ears & Eyes

Visual loss and blindness
Ptosis
Ophthalmoplegia
Optic atrophy
Hearing loss and deafness
Acquired strabismus
Retinitis pigmentosa
Pancreas & other glands

Diabetes and exocrine pancreatic failure
(inability to make digestive enzymes)
Parathyroid failure (low calcium)

Systemic

Failure to gain weight
Fatigue
Unexplained vomiting
Short stature
Respiratory problems

From:
http://www.umdf.org/site/pp.aspx?c=8qKOJ0MvF7LUG&b=7934631

 

[my little penguin]

For mito anytime more than one system is affected it needs to be considered.

 

[Suzysu]

They did consider CVS but I think they dismissed the idea because of the more or less constant diarrhoea, although he will have the odd normal poo, he never has a 'clear run' of normal poo's if you know what I mean, I think he has had a total of 4 weeks (split into 2 lots of 2 weeks) in the last 18 months where he has been more or less symptom free.
I hope it's not a mitochondrial disorder they all sound very scary and difficult to diagnose - I dismissed them as I don't think he is ill enough, but the coughing has started to worry me. My middle child has asthma so maybe it's just a mild form of that (he doesn't wheeze and the coughing is no where near as severe as my middle child had it before all the meds).
Thanks xx

 

[my little penguin]

You can have asthma and never wheeze .
My oldest has that.
Uncontrolled asthma can cause vomiting.
Mito is hard to dx
Hugs

 

[Suzysu]

I am off to my parents of Christmas so may not be able to check the forum to see how everyone is - so I just wanted to wish you all a merry and healthy Christmas!!!! I hope everyone's tummies behave themselves enough for everyone to have a great few days xxxx

 

[Crohn's Mom]

Thanks suzysu ! Hope you enjoy your holidays as well ! :ghug:

 

[Farmwife]

Have a great time at Christmas Suzysu.
I hope you know your a great treasure to this forum and we'll miss you while your gone!

 

[DustyKat]

Thinking of you T, Suzysu and dannysmom. :ghug: :heart: :ghug:

I have known the pain and uncertainty of an undiagnosed child and my heart goes out to you and all you and your children are going through.

Dusty. xxx

 

[Rose24689]

Hi Everyone! Crohn'smom, i was just wondering what qualified JJ to be elidgible for hormone injections. I myself am very short and 13.5 years old and have been tested for many things to see why i have not grown in any way at all for 3 years. My endocronoligist said growth hormone therepy can have a lot of terrible side effects, but maybe JJ is taking some other thing then she's talking about? Anyway, they havent suggested i take any kind of hormones and i dont know why. Im not growing, going through puberty, or anything and they tested my puberty hormones and said they were very low. What do you think?

 

[Suzysu]

Hi Rose - I'm sorry you are going through hard times and I hope that your Dr can come up with something that will help you soon - If not can you get a second opinion somewhere? there is still time that things will start to happen soon as you are 13.5 and at least you are being monitored ie you are 'in the system'.
I hope you get some answers and some help soon xx

 

[Suzysu]

So we have had a stressful Christmas and New Year! Freddy has been sick since a couple of days before Christmas (really nasty cough and cold). At the moment he has a fever (since sunday) that I can't get to go below 38.6 (even after paracetamol). He passed a load of bright yellow mucus yesterday afternoon (like beaten eggs) and nothing since (very unusual for him), His knees are sore again and keep giving way. He seems to be having a lot of tummy pain especially after eating (but seems to want to eat which is weird). He looks pale and apart from a short period (40mins or so) when he played with the others, he has either been asleep or sitting on my or my hubby's knee feeling very sorry for himself. Poor thing it just goes on and on.

 

[Farmwife]

Poor Freddy! Love and hugs to you both.
Keep searching. It's hard but when you get the answers, what ever they may be it will be worth it!

 

[Catherine]

Were you seeing bile, it usually a bright yellow or sometimes green. When there is nothing left to throw you begin to bring up bile. Giving small amounts of water can help.

 

[DustyKat]

I hope Freddy is soon feeling on top of things Suzysu. Poor little lad has enough going on, bless him. :hug:

Dusty. :heart:

 

[Suzysu]

Thanks everyone!
He had a load of dried bright green stuff on his sheets this morning, may have been bile but could have been from his ear as this also burst this morning although it was straw coloured creamy stuff with no green so who knows. His diarrhoea is disgusting tonnes of mucus and smells like something died! The Dr felt his tummy and said the pain he was having def wasn't appendicitis as he let the Dr touch his tummy, could be urinary although this is unlikely as he is a boy. Basically he said we had to treat what we can see ie the ear - but to keep a close eye on him and bring him back if things didn't improve. Poor thing he is so miserable and isn't really eating - he just needs a break and a chance to recover from everything.

 

[Crohn's Mom]

Oh Suzy I sure hope something gives soon for the lil guy - he definitely deserves a break! :hug:

 

[upsetmom]

Your poor little boy......he has been through so much.

He sure does deserve a break...... ..:ghug:

 

[my little penguin]

Hugs so frustrating
Hope they can get him better soon

 

[DustyKat]

Oh my goodness Suzysu...how heartbreaking for you and how unfair for him...:ghug:

In my thoughts. :heart:
Dusty. xxx

 

[Catherine]

UTI are uncommon in young girls and even more uncommon in young boys they sometime refer to as a honeymoon disease.

There is condition called renal reflux. This is condition where due to a problem angle of the tube from the kidney to the bladder the urine is able to back flow which can cause kidney infections. It occurs in both boys and girls usually dx under the age of four.

My middle daughter was dx with renal reflux aged 2 and half. She presented with fever, vomiting of bile and what appeared to stomach pain. She had a kidney infection at dx. This one infection has resulted in scarring to her kidney.

It is a very simple test for UTI, I would ask your doctor to rule out.

 

[Crohn's Mom]

sorry it's so big ! How can I resize ?? Or someone ??

This is the 4th episode (or 5th?) in the last year that JJ get's these "sores" in his mouth. Can it just be a "cold sore" ? do you think?
Or should I still be thinking it's "ulcers" ? argghhh....

 

[Crohn's Mom]

Well we went to the follow up GI appointment this morning and JJ still has the ulcers in his mouth , so he is definitely getting the pill cam done !
Waiting on the appointment as we speak
Oh and he has lost 5 pounds in the last 4 weeks since he was here ... :/

 

[Suzysu]

Sounds like the pill cam is definatly needed - I hope they can do it soon before he looses too much more weight - did they suggest supplementing with shakes or anything? sending lots of hugs xxxx

 

[Farmwife]

Pill cam time!:heart: We're you able to get some of that magic mouth wash from the doc? My son got it and it is magic!

Hugs to you and yours!:kiss: