CT scan - some thickening of proximal duodenum?

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We've gone from pretty good to pretty awful in the last few weeks.

The only thing that is working at all with Jaime's bowels is Citramag. Her vomiting is back with vengeance and she is often vomiting blood. Last week she had to be catheterized as she just couldn't urinate! And to top it all off, today was blue lighted to hospital with severe chest pains. I really don't know how she is still going. ENOUGH ALREADY!

While she was in today, her chest pain eased, but she had blurry vision in her right eye. Her right side of her mouth dropped and she couldn't drink without it dripping out of her mouth. Not great!

I left her at 11.30pm, she was still waiting for a Consultant, they said it could be in the morning. The feeling has come back in her face, but she had another bad attack of chest pain. ECG normal.

I think her bowels are just starting to affect every part of her body now :(
 
I'm not holding my breath on answers soon! She had Urinary CT Scan last week, and appointment on Tuesday for results from that, but Gastro Appointment keeps getting put back and I know that this is where all her problems lie.

She really needs to be referred to London, but until she has her appointment we can't insist this happens :ybatty:
 
Surely with this emergency admission they could speed up the appointment? You could start nagging the secretary for any cancellations (that's what I usually do :))
 
Will see what comes of this admission. I doubt nothing will!

Farmwife, she has had blood in stool, not always, but she rarely goes now without using Citramag, and then what comes out although like water is very dark.

She is also intermittently peeing blood! Coming from all directions, and yet still her bloods are normal!
 
I can't believe your dear girl can go through ask this and still not have answers.
Is she able to work? Is she able to live on her own?
 
She lives with me, but I don't like leaving her on her own too long!

Yes she still works when she can! It tends to be work that call ambulances when she's bad.

This morning she tried toast and immediately vomited. She then had the really severe chest pains lasting 45 mins. Has anyone experienced this? Also has anyone experienced urine retention? These are new things to her.
 
My then 2 year had urinary retention due to UTI and kidney infection. She also had a fever and was vomiting bile.
 
Thanks Catherine. She didn't have a UTI, the Doctor she saw was convinced it was because her bulging bowels were pushing everything out of place.

I didn't even know that could happen, but I guess it could make sense.
 
Hi Niks,

so sorry to here your girl is so bad again, way back I told you about a friends daughter, she has very similar symptoms to Jamie vomiting abdo pain, massive weight lossvery poorly, she has had loads of test weeks in hospital they have discovered her large bowel has lost its nerve supply so no peristalsis she is currently being fed by a tube into her small bowel and needing alternate day enemas and citramag. she has had urinary retention problems too, she is currently waiting for appointment to gastro at UCL, they do not know for sure what caused the nerves to die but think it maybe an virus. her Drs have been discussing her case with Drs in US.
I don't know if this helps but her disease pattern is spookly similar.
pops xx
 
Your poor girl. This must be so tough on all of you. That appt needs to be moved up, not back. I hope your daughter gets the attention she needs and starts feeling better soon. My thoughts and prayers are with you.
 
Niks,
I was just thinking of you guys. So sorry to hear that Jaime is doing so poorly again. I am concerned about the pai she is having on vomiting. It is possible to get a small hole in the esophagus from vomiting. That can be very serious and needs to be treated immediately. Please mention this to the doctor.
 
Did they at least do an ultrasound to look at her kidneys -
Kidneys stones can also cause a lot of what you described .
 
MLP - she had a urinary CT Scan last Thursday. The Drs said today it was normal, but she has appointment next Tuesday with Urology.

Pops! I wish I could find something online about this condition! I really think it sounds to close to be a coincidence too! Thanks for this.

Thanks everyone else for your kind words and thoughts xx
 
Hi Niks l don't think you will the poor love has had every test under the sun and still no definite diagnosis, the nearest is an condition called hirschsprung this condition is normally diagnosed as a baby but l have seen it can be missed and be diagnosed in adult hood, she had a laparoscopy and nerve biopsies they have found her nerves feeding the large bowel are just not working. she is back in hospital again they hope her local hospital will transfer her up to UCL. if l here any more l will let her know what would be ideal is if you can get Jamie refer to ucl too if they had them both with such a rare condition it may shed some light and help for both the girls.

Much love pops
 
Hi niks,
Have heard today of another girl who has similar symptoms to Jamie apparently her drs think she has picked up an virus swimming abroad which has paralysed her stomach so what ever she eats just gets vomited back she is in hospital on iv feeds . talk to jamies drs about this if she is still vomiting she needs replacement feeds how has she been over last few days.
pops x
 
Thanks Pops.

She's still vomiting all food! She has lost 10lb in a week. Luckily she had put on a good amount of weight before this flare.

I just don't know where to turn. Swindon can't help her as it's gastro. Oxford seem uninterested, I have e-mailed them though with everything she's been going through.

She's been taking Omeprazole and Ondazetron, which s reduced the chest pain episodes, but she is still getting them, just not every time now.

Johnny'smom - do you think they would have found Hirschsprung's in previous biopsies?

I just don't know where to go!
 
Sascot said:
Poor girl! Can they not send her to London now?
Click to expand...

I agree. I think you should insist. I saw a young girl at St Marks years ago who was so poorly because of years of steroids and hadn't been able to enjoy school and they turned her life around. Ask to see Dr Nightingale.
 
I read this whole thread with horror and dreadful flashbacks to both mine and my sister's awful young adult time with undiagnosed crohn's disease. I'm rooting hard for you both. Our mom has been through the ringer like you, (she's the one you need to talk to!)

I remember my sister refusing to go to hospital while she became septic from a ruptured bowel. High pain tolerance can equal poor decisions! When I was Jaime's age, I used to go to work on 45 minutes of sleep, on the potty all night with cramps, blood, ugh.

You are a great mom! I hope she can see a crohn's expert, soon. I think some gastro docs think they know this disease, but they really, really don't. If that is what Jaime has. It's all so familiar to me. Also, I joined this forum just to keep track of Jaime's progress.
 
Aw thank you!

Did you and your sister have loads of negative tests? At the moment every single thing she is eating is coming straight back up violently. She had lost 16 lb in two weeks.

She called Oxford, they said she has an appointment in September and to wait until then! Just soooo frustrating! She's getting us she upset as she feels so hungry all the time.

I took her to A&E in Oxford last Monday, the Doctor was lovely, but he said it is not an emergency so needed to be dealt with in Clinic and he would make sure that would be brought forward. We've heard nothing though and I am not holding my breath!

GRRRRRRRR
 
Niks, the answer to your question is yes, but this was 30+ years ago. I was told at 16 that I did NOT have crohn's, but it was IBS and was 'nervous'. My sister's disease was found earlier on during a surgery, I think? She was still in her 20's.

I went misdiagnosed for almost 35 years (no health insurance!) and had abdominal obstructions annually for the last 15 or so years. Nasty business, that.

My sister goes to Bassett Hospital in Cooperstown, NY. They have a team of crohn's specialists there, I'm headed there in October.

I think Jaime needs to give her system a time to rest. I put myself on 100% liquids for a month a couple of weeks ago. It stopped the constant nausea and barfing when brushing my teeth. Also, I've been so hungry that I threw up.
 
I don't think St Marks has and Emergency Department, it needs to be referrals.

She's not any better. I think trying just fluids will be a good idea, however she is vomiting supplement drinks and soup. She is holding down sips of water as long as she takes it slowly.
 
Niks ,go to UCL Northwick park is a dump you could get stuck on a ward there and be far worse off go to your GP and get him to refer her she has suffered enough.

Pops
 
Things aren't great. Her appointment at Oxford was something of nothing. He kept saying that 'people with IBS who have a positive attitude always do much better'! I could have hit him!

Jaime broke down. He then decided he would arrange a gastric emptying study, which is booked for next month. I have asked for this so many times!!

I asked for referral to London. He said she should wait until after Gastric Emptying Study.

Since Jaime has had chronic pain, passing out, peeing blood, vomiting blood, rectal bleeding, so much that she has woken up covered in blood! Several stays overnight for fluids and potassium.

She has had horrendous headaches causing vision loss in her right eye. (Eyes checked and nothing showing on any of their tests). They are following her up in a few weeks. The headaches come and go along with the vision loss. She finds patching the bad eye better than trying to see through it.

Yesterday morning she was on her own (was at work on sleep in). She called our NHS helpline who called her an ambulance. She was in A&E for 8 hours, trying to get pain under control. They had her drink a Citramag (she had taken one the evening before). Once they knew she had held it down let her home.

Once home and Citramag started working she was passing stones in her stool!!! What the hell is that all about? Poor girl. So GP appoint today. Is sending her for scan on Monday with query gallstones.

Seriously, is there anything else?

IBS can be bloody rotten sometimes!!! GRRRRRRRRR
 
Is it your GP how has told you to wait until after the gastric emptying? I am extremely concerned as to how ill your daughter is and how badly she is treated. You could book a private appointment at a London hospital, and then if they take her on she can be transferred back to NHS. This is what my parents did.
 
No it was Oxford who want her to wait!

She has Scan on Monday and Gastric Emptying on 16th Oct, so hopefully one of them will show something.

She had bloods done yesterday and apart from potassium being a little low, everything else is fine. I really think this is the problem! Her bloodwork is always spot on (apart from B12 and Ferritin in the past). I just don't think they believe that she goes through all of this
 
My bloods are usually fine, although I struggle with potassium levels. A second opinion is something that your GP can arrange. I just think the way your daughter is being treated is appalling.
 
It's a nightmare. She has gone back to keeping a diary of everything. Hospital admissions, symptoms, pain levels etc and I have told her to take pictures of everything. She has pictures of the stones in her stool, I think that's what made GP refer her for urgent scan.

Her weight is still dropping, but not as fast as it was.
 
Hi Catherine

The stones are right yellow. Some bigger ones but a lot of gritty sandy bits too.

I know that blood isn't a symptom, but because they can't find any other diagnosis, and shad had a fair few tests, IBS is what her Doctor says she has!!

Thanks for links. I doubt scan on Monday will reveal anything, we'll see!!
 
I suggest is to read the guidelines and be ready to point out where J doesnot meet the guidelines.

Also if the GI is saying this IBS, have they tried any of the treatments mentioned in the guidelines?
 
Mostly she's tried everything. Laxatives just don't work except for Citramag, if she keeps it down.

Diet makes no difference and CBT therapist told her it was medical, so couldn't help.

I have researched other reasons for stones in faeces and came up with fecaloma. http://en.wikipedia.org/wiki/Fecaloma

I guess this could be the problem, considering her chronic constipation,
 
Thanks everyone

No stones! So not gallbladder. So pinning everything on Gastric Emptying. I have a feeling nothing will be conclusive with that either!

Just running out of steam. She is no waking up in agony pretty much every night, vomiting bile throughout the night, and everything she's eating throughout the day.

Just hope for her that what ever this flare is, eases off really soon!
 
Niks,
My heart is breaking for both of you. It is surreal that Jamie is continuing on without any medical diagnosis progress.
Lots of Hugs and Prayers going your way!
Cheryl VT
 
Thank you!

She has been in Swindon since Tuesday with pain more extreme than ever. I videoed her in A&E to show her Doctor.

Her pain comes on so quickly and she is in and out of consciousness. Every single nurse/Doctor is pretty horrified.

She lost 3lb in 3 days so they are now monitoring her intake and vomiting. Needless to say she is holding no solid food down. We have certainly been here before, but her pain levels are far worse than ever before. She is passing out upto 30 times per episode and for up to 5 mins at times
The Doctors in Swindon have liaised with Oxford and they are just 'trying to keep her going' until the 16th when she has her Gastric Emptying Scan.

I wanted to upload video to see if anyone else had seen anything like this, but it's too big.

Does this sound familiar?? http://www.dailymail.co.uk/health/a...covers-youngest-Briton-gastric-pacemaker.html This story could be about Jaime!

She is very fed up poor girl.
 
One question - no anti-sickness is working at all.

They gave her 2 Citramag on Wednesday and trying to get her to drink 3 Klean-prep today, without much success!!

If she has to eat a small 'meal' eggs for instance for Gastric Emptying Study and vomits it up immediately, will the test be negative? I can't see how she will tolerate it :(
 
You can do both a liquid and a solid study.
My oldest did both.
That way you can see at least one.

I think there are rules on how fast you vomit and how much .
Liquids just a few oz of liquid
Solids -one scrambled -had to eat it all
Toast plus water optional

Good luck no standards by the way so it's hit or miss for dx .
 
Thanks MLP.

Her test is on 16th Kim. I am really concerned that she'll vomit it all too quickly so will be inconclusive!
 
Niks,
I will be praying that she does okay. Have them give her a strong antinausea medicine beforehand. We are using a new antinausea medicine, called Granisetron HCL. It works better then zofran. Maybe you could see if it is available there.
 
Hi Niks,
Most of the anti nausea meds don't work for me either (I have gastroparesis). The only ones that help marginally are levomepromazine injections and ondansetron. At the time of the gastric emptying study though I wasn't able to take most of the anti-emetics as they affect the results, but some can be had so I would ask now about what can and cannot be taken. It would be much better if she could have what she is allowed intravenously or sub cut.

Are they giving her iv anti-emetics whilst she is an inpatient?
 
Yes littlemissh they've tried IV anti sickness, but nothing seems to help.

I haven't heard of Granisetron HCL, I will ask! Thanks Kim.

They have tried yet another two Citramag today, but apart from pain relief that is all they keep doing.
 
Yes! They are waiting until after Gastric Emptying Study. If nothing comes from that I'm going to pay for her to be seen privately in London xx
 
Well they sent her home!

FFS - not holding any food down. Severe pain and yet she's back home.

I just don't know how they think she can keep going like this :(
 
Endoscopy is useful to exclude mechanical obstruction of the esophagus,
stomach, duodenum, and colon. Standard mucosal biopsies do not sample
the deeper muscularis propria or myenteric plexus and cannot be used to
make the diagnosis of CIP per se. Mucosal biopsy specimens can demonstrate infections (eg, cytomegalovirus. Epstein-Barr virus) or infiltrative
disorders (eg, amyloidosis). Small bowel biopsies may be confusing in this
setting, because patients with chronic small bowel CIP. may have villous
blunting indistinguishable from celiac sprue [172]. Endoscopically or
surgically obtained deep suction rectal biopsies can identify HSD and other
familial visceral neuropathies.

Just found this on http://medicina.iztacala.unam.mx/medicina/Diagnosis and treatment of chronic.pdf

The more I read up on chronic intestinal pseudo-obstruction and chronic gastroparesis, I think this is what her problem is, either one or the other or probably both. When I read about biopsies being confused for coeliac disease seemed to cement this, as this was her initial diagnosis!

It makes me so cross that she is expected to 'have a positive attitude'. She is in agony and literally projectile vomiting any meal she eats. Small dry snacks or chocolate, she seems to do better with. The bad side of this is if this is her actual diagnosis there seems very little that can be done about it!! :mad:
 
Does anyone know if bowel problems can have an effect on eye sight? Jaime had horrendous headaches leaving her left eye pretty blurry. (she thinks brought on by vomiting) She was tested at the hospital and her left eye has improved a little but her right eye has overcompensated and she now has to wear glasses all the time, with corrections on both eyes.

Her eyesight was absolutely fine 6 months ago!
 
Have her see a retinologist. Extreme vomiting can cause a valsalva retinopathy that affects the blood supply in the eye. This sometimes happens to people after they are sick from drinking too much alcohol.
 
Yes, I didn't mean to say that her vomiting was from drinking alcohol, but that the mechanism of an eye injury could be the same.
 
Niks said:
Does anyone know if bowel problems can have an effect on eye sight? Jaime had horrendous headaches leaving her left eye pretty blurry. (she thinks brought on by vomiting) She was tested at the hospital and her left eye has improved a little but her right eye has overcompensated and she now has to wear glasses all the time, with corrections on both eyes.

Her eyesight was absolutely fine 6 months ago!
Click to expand...

Certainly with IBD they can Niks. These are the ocular EIM’s…

  • Conjunctivitis
  • Uveitis
  • Iritis
  • Episcleritis
  • Scleritis
  • Retrobulbar Neuritis
  • Crohn's Keratopathy

Sarah had ocular issues associated with headaches, very migraine like, that plagued her until remission was achieved.

I hope Jaime will alright hun, bless her. :heart:

Dusty. xxx
 
Has she tried erythomycin ?
My oldest is on this (perfect gastric emptying scan)
Seems to help move things in the stomach through .
Would her gp let her try something that improves stomach movement ?
 
Hi MLP.

No she hasn't tried erythomycin. It would be worth looking at though! Thank you.

Her Gastric Emptying Scan is next week, as I said I don't think she she'll hold down the meal. So will wait until after that before she tries anything else because if could affect result.

Initially I thought her vomiting was due to chronic constipation, but in hospital she was having TWO Citramag every other day. She must be cleared out by now, especially as nothing much going through.

She doesn't seem to be able to open her bowels at all now without Citramag :(
 
Niks,
The constipation is also a sign of gastroparesis. Since my daughter started with the gastroparesis she can't go without taking miralax daily. Though once she does go it is always diarrhea. Since her intestines don't move properly the stool won't move unless the Mirlax helps it get through. It is a viscous cycle.
 
UPDATE!

Jaime managed to keep down Gastric Emptying Study, She promptly vomited as soon as she sat up, and had to really fight it, but at least they got a good study!

She had results appointment today (only because I complained to PALS) and saw her actual GI.

He faffed around about everything. I showed him video of her in agony, passing out, and heart rate up to 180, then going straight down when unconscious. He said this is 'normal' for some people in extreme pain. Oh well at least we're acknowledging extreme pain at last!

She told him about waking up in a pool of blood, having to wash all her. bedding for 7 days in a row. He wrote it down, no comment. He said he just couldn't explain why Jaime gets so sick and has such agonizing pain.

I showed him a paper with highlighted areas on things that happens exactly to Jaime, with Gastroparesis and Chronic Intestinal Pseudo-obstruction, He said he'd thought about both for Jaime. (he has NEVER mentioned either!) GRRR.

After a good 45 mins, I asked about the Gastric Emptying Scan. He was pretty flustered, but said he always knew that it would come back positive for her!!! WHAT?? Apparently she does have Gastroparesis, however he thinks this is just the tip of the iceberg of her problems.... WHAT again???? Last time she was there she had IBS!

Do we want another opinion as he has hit a brick wall! YES! So he has now referred her to a Dr Emmanuel at University Hospital London! Not St Marks, but surely has to be a start.

She is actually feeling better this week and holding down some smaller meals, and pain is so much better.... Sods law huh!
 
Glad she is feeling a bit better this week. Very glad to hear he is at last taking things seriously. Have you been able to find out any info on that doctor he referred her to?
 
Glad something showed up at least. Hope they can get the London appt fairly quickly. Hope she continues to feel a bit better for a while!
 
Hi Niks,

So pleased your finally being referred on. The nhs has a very bizarre system these days, I'm still trying to work it out. Have had similar experiences to you, with the 'blame the patient' tactic and once you go in armed with evidence/information and are determined, they refer you to someone else. I assume it's because they are out of there depth. The doctor you saw definitely was, I bet he was squirming. It's so sad though, they don't have the knowledge/ inclination to help you, so instead of holding there hands up, they blame you, the patient and blatantly lie, crazy!!

I will keep my fingers crossed this doctor helps your daughter, she has gone through too much. I have been to the ucl and was under prof Forbes, I had a good experience.
 
So glad they gave you a referral
Did they at least give her meds for the gastroparesis until they figure out what else is wrong?
I know the meds made a big difference for my older non Ibd kiddo .


Hope they get her in quickly .
 
Wow! Sounds like it was a big day for you. It isn't easy for the docs to admit they are out of their depth and need to pass a patient on to someone with more experience. Hopefully, you will be able to have a better starting point with the new docs, where they acknowledge it must be something else, something big for Jamie to be referred to them to start with.

Best wishes!
Cheryl VT
 
Thanks everyone!

MLP - Jaime has already taken metocopromide with no change in her condition.

Her GI wanted to wait to see what Dr Emmanuel thinks. I have done research on him, and worried about this!
http://www.youtube.com/watch?v=Rw_U7P07vK8 I am wondering if her GI thinks he will confirm IBS as her main condition and has referred her to basically shut me up!

Now not feeling so confident but will go armed with a list of everything that has happened with her.
 
I would go to every specialist going forward with a firm statement of, "Since IBS is a diagnosis of exclusion and it has been determined she has gastroparesis, I no longer will consider IBS an explanation of her symptoms until serious consideration has been giving toward her gastroparesis and treatments have commenced to help her in that regard."

I know gastroparesis is not a dx you all wanted to hear but going forward I would wear it like a badge and not let one medical professional forget that her symptoms are more likely a result of that dx and not some extreme case of IBS.

Hugs and I hope the path going forward is one where her specialists will truly listen and understand the suffering she has faced!
 
Niks,
I agree with Clash. Approach him from the begining with the attitude that we have proven through testing that this is not IBS. Fingers crossed for a good experience with him!
 
Give it a week then phone his secretary and make sure she has your mobile number. Let her know that you are desperate for any cancellations
 
Hi Niks
sorry l have been busy and had not checked up for a while so pleased you have eventually been revered to London my sister niece l told you about has been seen at UCL has had shed loads of new tests do not know results of all, will try and find out she has been told it was caused by virus which has paralysed the nerves supplying her gut so no peristalsis , think they said floppy bowel ?? she and her parents have been very impressed by them. do hope you here about apt soon
Pops
 
Hi Pops.

She's actually been much better over last few weeks. She seems to have huge flare ups and then it eases off.

It is weird that she can go from being so poorly to being pretty much normal! (She has had a couple of kidney stones, which has been a problem)

She STILL hasn't had appointment, but as she's doing ok right now I'm worried that if she's fine when she goes they'll think there's nothing wrong!

It's her 21st on 21st December and she has booked to go to London with some friends and is so hoping that she continues feeling well!!

Fingers crossed
 
Finally had letter confirming referral to specialist in London, no date yet though!!

Her diagnosis now is

1. Upper GI and colonic dysmotility with viscernal hypersensitivity.
2. Predominant Constipation with slow colonic transit and moderate gastroparesis,
3. Nephrolithiasis
4. Osteopenia bordering on osteoporosis with previous T-score -2.5 at the spine with normal femoral neck and hip. (however her neck and hip have now deteriorated to -2.2 on both. GP just had these results)

At least no mention of IBS!!!

I personally think her Gastroparesis is not moderate. She was definitely starting to get better when she had the gastric emptying scan. I think if they did it again at her worst she would come back as severe. However at least it is a diagnosis at last!!
 
Colonic - on the colon or effecting the colon

Dysmotility - a condition in which muscles of the digestive system become impaired and changes in the speed, strength or coordination in the digestive organs occurs. In the normal small intestine, liquefied food and secretions including digestive enzymes are pushed onwards by waves of muscular contraction.

viscernal - elating to the viscera.
"the visceral nervous system"

hypersensitivity - An excessive or abnormal sensitivity to a substance. A person who is hypersensitive to a certain drug will often suffer a severe allergic reaction (see allergy) if given the drug.
 
Agree with MLK, they had this on C's notes and when I asked they stated IBS. Of course they sang a different tune when the testing showed still active CD.

I do think it is awesome that they have stated moderate GP even though I agree with you that had they done the test during one of her declining times instead of when she was doing well it would have come out more than severe. It is just so great to hear that someone is finally listening and taking her symptoms seriously!

HUGS!
 
A person who is hypersensitive to a certain drug will often suffer a severe allergic reaction (see allergy) if given the drug.[/QUOTE said:
Jaime has a severe reaction to cyclizine! She used to be fine with it but a couple of years ago when in hospital (luckily) had anaphylaxis in the middle of the night after taking cyclizine.

Thanks everyone! The Visceral hypersensivity is apparently because of her lower left abdo severe pain at times. She always has pain there, even when well.

So now just waiting for referral!!
Click to expand...
 
Does anyone know if Gastroparesis can affect Bladder function?

Jaime is more and more getting urine retention and for the second time had to be catheterized today. She gets so bad that she looks like she's 5-6 months pregnant! When they drain it it just goes back to normal.

She has had a couple of episodes of kidney stones and bleeding, She saw the Urologist last week, who informed us that the last time she was in A&E back in November (she passed a stone while she was there and her urine was very bloody). The lab tests came back with a really nasty infection. She was not told about this and was not given anything to help clear it up!

He is putting her on long term low dose antibiotics and she has an ultrasound booked in January, they are going to scan her before and after she has urinated to see if she retains much. At the moment though nothing is helping her. She has tried sitting in a warm bath, running taps and anti inflammatories.

Just wondered if Gastroparesis or bowel dysmotility might affect bladder function!?
 

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