Daughter in pain, no one knows why - anyone else have this issue?

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JessMN

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My daughter - aged 17 this month - has spent the last 3 weeks in pain. We have been to her clinic twice and the ER once and they have done a million tests - blood, urine, CT, Ultrasound, xray - and everything is "fine" according to them. We have an appointment with a GI on the 24th (and call every day to see if there are earlier cancellations) but she is in so much pain she cant eat and I don't know what to do. I have been searching around the internet and think that her symptoms might point toward gastroduodenal crohns which is how I ended up here.
I know no one can diagnose her here but I need to know that others have experienced this helplessness of not knowing what to do.

Symptoms:
Pain in Lower right abdomen, one doctor said it was right by the appendix/iliac area but no signs of appendicitis
Hurts when she eats or drinks anything. Has lost 20+ lbs in the last 3 weeks because of this. She is pale and very weak.
No signs of infection in bloodwork but I noted that her breath smells like infection though when I mentioned it to the last doctor she pretty much ignored me.
Around 4 years ago she started having issues sleeping. She has low ferratin and vitamin D levels and we took out gluten because it makes her feel sick even though doctors have said she is not celiac (just from bloodwork, not biopsies) She also does not eat dairy and hasn't since she was very young.

I don't know what to do. I'm starting to feel like everyone thinks she is a hypochondriac but she's not!

Thank you for "listening"

Jess
 
Honestly -GI issues take a long time to dx because there is so much overlap .
That said have you tried formula to supplement her diet .
Polymeric formula like boost or ensure can be used to help keep her nutrition up until you figure out what is going on.
DS was dx at age 7 but it took 8 months to get to the point of scoping him.
Good luck
 
Hope you get some answers soon. Have they done a faecal calprotectin ? It's the only test that showed inflammation in my son - his bloods have always been fine even before diagnosis. I could tell the docs thought it was all in his head.
 
Hi JessMN and :welcome:

I am so sorry to hear of what your daughter is going through. :( You will find so many here that know exactly what you going through hun, me included!,...the helplessness, the worry and the feelings of fear. :ghug:

As mlp has said, the symptoms of Crohn’s unfortunately can overlap with numerous GI conditions but that also means that IBD can’t be ruled out. That and the fact that your lass has enough red flags…RLQ pain, weight loss, low Vit D, altered appetite...that it needs to be given serious consideration until they can definitively say otherwise.

My daughter went undiagnosed for 18 months and she too had imaging and bloods that showed nothing. She did not have classic symptoms of Crohn’s so it wasn’t on the radar. Want she didn’t have though was an upper and lower and scope and in her case it would have provided a diagnosis.

After our experience and after discussions with doctors over the years I believe that if your child, or an adult, has multiple presentations to the doctor in which non invasive tests prove negative and after which abdominal pain persists then it is obligatory that the doctor should order scopes. Also as Sascot has suggested, perhaps try and get a FC in before you see the GI.

In the interim also start keeping symptoms diary. Have a look at the suggestions we have here in the wiki:

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

This can be an invaluable tool when attempting to obtain a diagnosis as it is in black and white and takes the emotion out of the situation, you don’t have to rely on your memory in stressful situations and a log can be pretty irrefutable evidence when it comes to consulting with doctors.

:hang: mum. Keep pushing for answers and please know you are no longer alone with this. :heart: You will always find someone hanging out here no matter the time of day or night. That is the true beauty of a worldwide forum! :)

Dusty. xxx
 
Thank you all! I should mention she has had pain off an on in this area for a couple years but nothing like this where she can't eat.
No they have not done any scopes or fecal tests.

I just called the GI and they still can't get her in until the 24th :( I'm considering going back to the ER and demanding they call in a GI (can I do that?)
 
my little penguin said:
Honestly -GI issues take a long time to dx because there is so much overlap .
That said have you tried formula to supplement her diet .
Polymeric formula like boost or ensure can be used to help keep her nutrition up until you figure out what is going on.
DS was dx at age 7 but it took 8 months to get to the point of scoping him.
Good luck
Click to expand...

Thanks - I was under the impression that boost and ensure were dairy based and she can't eat dairy - am I wrong? I will have to take a look
 
It depends on the boost and ensure
If she is lactose intolerant or truely allergic to milk.
Kids boost at least is tolerated by most with lactose intolerance since the lactose level is extremely low

There is also e028 splash from neocate , neocate
Elecare -from abbott
All are amino acid based -elemental formula -taste horrid but are used by those extremely allergic to all foods

DS drinks peptamen jr from nestle nutrition -semi elemental so more broken down proteins easy to digest and absorb ( low lactose as well )


Peptide by abbott is also semi elemental
All can be mail ordered from the company


There are soy based as well bright beginning has a soy drink

Completely vegan shakes by orgain can be found at whole foods but they are not complete nutrition
Whole foods carries another brand as well that is complete nutrition but tastes foul
 
My first daughter had very few symptoms so no referral to GI until her first big flare two years later. My second, with worse symptoms and a dx'd sister, took 3 years to get a dx. You are not alone.

I would ask the GI or her GP to order a fecal calprotectin now. It is very helpful in uncovering inflammation specific to the intestines. But it still doesn't mean an elevated level is definitely IBD...just the usual suspect. The test takes at least a week to get back. It would be nice if those results could be at the GI's office by the time of your consult so you are not left waiting even longer.

One other caveat while you are waiting in undiagnosed land, if she takes any NSAID's for pain (ibuprofen etc), stop. The do cause inflammation to the intestines and can muddy the waters and make her condition worse. Tylenol is fine...yeah I know...it isn't as effective:(

Good luck with your appointment and possibly getting in sooner.
 
crohnsinct said:
My first daughter had very few symptoms so no referral to GI until her first big flare two years later. My second, with worse symptoms and a dx'd sister, took 3 years to get a dx. You are not alone.

I would ask the GI or her GP to order a fecal calprotectin now. It is very helpful in uncovering inflammation specific to the intestines. But it still doesn't mean an elevated level is definitely IBD...just the usual suspect. The test takes at least a week to get back. It would be nice if those results could be at the GI's office by the time of your consult so you are not left waiting even longer.

One other caveat while you are waiting in undiagnosed land, if she takes any NSAID's for pain (ibuprofen etc), stop. The do cause inflammation to the intestines and can muddy the waters and make her condition worse. Tylenol is fine...yeah I know...it isn't as effective:(

Good luck with your appointment and possibly getting in sooner.
Click to expand...

Good idea, thank you - shes not taking any NSAIDs, I know they are hard on the stomach.
 
I hope you can get the appointment with the GI moved up. It's hard to tell what belly pain is without tests. I'm sure you've tried this, but if not, a heating pad might help while you're waiting.
My daughter also had low ferritin (so low that she needed iron infusions) and vitamin D before being diagnosed. That doesn't mean it's definitely IBD, but they should investigate (and I bet they will).

If the pain gets severe definitely take her to the ER.
Hang in there!
 
Maya142 said:
I hope you can get the appointment with the GI moved up. It's hard to tell what belly pain is without tests. I'm sure you've tried this, but if not, a heating pad might help while you're waiting.
My daughter also had low ferritin (so low that she needed iron infusions) and vitamin D before being diagnosed. That doesn't mean it's definitely IBD, but they should investigate (and I bet they will).

If the pain gets severe definitely take her to the ER.
Hang in there!
Click to expand...

She does occasionally use a heating pad. I called the GI twice already today and they still don't have cancellations so I asked if they have "emergency" services and they suggested I get her GP to call them. Of course her GP is on vacation but I gave the message to a nurse who was going to get it to the person managing the GP's messages while she's gone so I am hoping they can work some magic.

Jess
 
Scopes are hard to push faster than the medical team sees fit, especially when you are an outpatient. I have found when you are admitted to the hospital they have more ability to slide you into a scope slot because they can just wheel you down if one opens up. You could push for an ultrasound which could be done quicker but certainly does not have the whole picture and is more suited for an obstruction in my experience.

I am not suggesting you should go admit your kid into the hospital, as it comes with its own set of issues (my kid has been in 6 times in 2.5 years from 5 days-1 month) but there is more access to everyone when you are a patient.

Diary is critical at this stage. I still refer back to ours from time to time. There is a few apps that help with this if she prefers to do this on her own like myIBD.

My daughter pretty much stops eating when she starts vomiting or goes the bathroom more than 10x a day. The only thing I can get into her is vitamin water/ Gatorade & saltine crackers. If you can convince her to try a protein shake or boost/ensure that would be more ideal to help her keep her strength up.

How is her mental state? Being away from friends can be tough when you are sick. I try to set up a few go to things to do that require very little energy when my kid is in a flare or in hospital to keep her mind sharp. If you need a few ideas I am happy to add some things we do.

As the parent, try to stay positive, read EVERYTHING and constantly ask questions. If a doc comes to a decision & you don't know why, ask how they made that decision & why that course of treatment. You have a right to know.
 
So sorry your daughter is in so much pain. You really do need to see that GI. My son was able to see a GI quickly, but I think it was due to the fact that he was sent to the ER by our GP, and then the ER referred us the GI. So, if you end up in the ER again and they can refer you to the GI, perhaps it would be quicker. Worth asking anyway. I hope your daughter strarts feeling better soon!
 
Just a couple of other things to keep at the back of your mind as you are attempting to get solid answers for your girl. Whilst I am in no way suggesting that your daughter has Crohn’s just be aware of the following:

- EIM’s (Extra Intestinal Manifestations), you will find these have been prompted in the diary inclusions. It is only natural that when someone has abdominal pain that you tie other GI issues with it but inflammatory diseases like IBD can pull in other body systems as well. So have a think if other seemingly unrelated issues are going on as well. Things like sore eyes, mouth ulcers, rashes, joint pain, headaches and so on. They don’t have to run parallel with attacks either.

- Classic presentation versus non classic presentation. It is also only natural that when doctors think of IBD they think diarrhoea and blood. Of course many people present with these symptoms but not all do. Unfortunately some doctors will dismiss IBD if these symptoms aren’t present and will tell you that IBD is not a possible without them. This is not true, it is not uncommon to have Crohn’s without diarrhoea and blood and also to be the opposite as far as bowels movement is concerned and be constipated, especially if disease is located in the small bowel and higher. My two never had diarrhoea or blood as a presenting symptom.

Dusty. xxx
 
Your poor girl. Crohn's does sound possible, but I hope for her sake it is something curable. Keep knocking. The 24th will come! Try giving her clear liquids only for a couple of days if needed to calm things down. Tummy cramps are the worst!
 
I'm so sorry you are dealing with this. :(

RE heading to the ER... this is what we did and my son was quickly diagnosed. Our GP was in the process of referring to a GI but said that if things worsened during the wait for the apptmt, we should head to the children's hospital's ER as that woud give us direct access to a GI (GP said that's what she would do with her own children!). So, that is what we did. Took to him ER, saw on call GI within hours, he was admitted, tests were run immediately (ie that day and following days), scopes a few days later and then dx.

Is the GI you are waiting to hear back from affiliated with a hospital (not sure how it works in Minnesota??)? If yes, is it possible to go to that hospital's ER? I'm thinking that even though she will be seen by the hospital's GI, her care can then be more easily and, perhaps, more quickly transferred to the permanent GI.
 
We also got our daughter to be diagnosed faster by taking our daughter to the ER. I reccomend doing that if you can't get her appt. moved up. Once in the ER they admitted her and then we saw the on call GI doctor who reccomended doing a colonoscopy. They kept her in the hospital and did the prep and then the scope two days later.
 
Jess,
Did you take her to a pediatric hospital? I would reccomend if there is one within a reasonable distance then take her there if you go the ER again.
 
I'm so sorry that your daughter is feeling so sick. Gosh 20 lbs in 3 weeks is a lot.

Does her abdomen hurt when they examine her? when she walks or moves?
Did she have a gyn exam?
Any fever?

Among all the tests, do you have the results? did she have a ESR (sed rate) or CrP?
What was her CBC like? Hgb Wbc diff? What does her doctor think is going on?

Her breath- perhaps she's ketotic if she's not eating and losing weight.

Low vit D is very common in healthy folks. Low ferritin can be associated with menstrual blood loss depending on diet and bleeding.)

How much does she weigh? Is she going to school? Is she able to be active at all?
 
xmdmom said:
I'm so sorry that your daughter is feeling so sick. Gosh 20 lbs in 3 weeks is a lot.

Does her abdomen hurt when they examine her? when she walks or moves?
Did she have a gyn exam?
Any fever?

Among all the tests, do you have the results? did she have a ESR (sed rate) or CrP?
What was her CBC like? Hgb Wbc diff? What does her doctor think is going on?

Her breath- perhaps she's ketotic if she's not eating and losing weight.

Low vit D is very common in healthy folks. Low ferritin can be associated with menstrual blood loss depending on diet and bleeding.)

How much does she weigh? Is she going to school? Is she able to be active at all?
Click to expand...

No fever, she didn't have a gyno exam this time though she has in the past when she has had this pain. I don't have the test results in front of me but I know they said everything was normal. Her Dr doesn't know what's going on- every doc we have seen just says to wait for the GI appt.

We are in MN so yes low vitamin D is very common, but the low ferritin surprised me - she has always been a good eater and loves her meat.

She had put on some weight this last year since she switched schools and is no longer dancing - her "thin" weight is 150 - she's built like a football player - but apparently has reached around 200 this winter - which I would have never guessed, she carries it well - and is now close to 170 - 30 lbs in a month.

She is attending online school now so luckily (?) she can be in pain on the couch and do school work, but one of the reasons I ended up switching her to online school was because of her health and last year she would miss school and fall behind and get over-stressed because of it. She also has a part time job and one of her managers was close to firing her because of this and I had to step in and call the store manager and explain the issue. They are cutting down her hours to one day a week until we can get it figured out.

I'm exhausted from the stress and just wish we could figure this out.

Thank you once again to everyone for all the helpful replies and sympathy :)
 
It's very stressful to be dealing with something like this-- seeing your child sick and not getting answers.

Is the pain only when eating or constant? Crampy? What makes the pain worse and what makes the pain better? If the pain gets worse with eating, does it happen immediately or some time later, (and if so, how long after eating)? Any change in bathroom habits-- urination or defecation? How bad is the pain on a scale of 1 to 10 where 10 is the worst pain ever and 1 is no pain? Does the pain radiate (move) to any other areas or does it stay in theright lower area?

Sending hugs!
 
xmdmom said:
It's very stressful to be dealing with something like this-- seeing your child sick and not getting answers.

Is the pain only when eating or constant? Crampy? What makes the pain worse and what makes the pain better? If the pain gets worse with eating, does it happen immediately or some time later, (and if so, how long after eating)? Any change in bathroom habits-- urination or defecation? How bad is the pain on a scale of 1 to 10 where 10 is the worst pain ever and 1 is no pain? Does the pain radiate (move) to any other areas or does it stay in theright lower area?

Sending hugs!
Click to expand...

She says is pretty much always there though its worse after she eats/drinks. There seems to be a bit of a delay after she eats before she feels nauseated and the pain gets worse, the length of time is proportionate to the amount she eats. The pain is in the same area - she's said its an 8 1/2 on a scale of 1-10 and she has said her bathroom habits are the same as always, except less because shes not eating much. The last doc we saw said it seems to be centered on the area of the illiac/cecum/appendix (they say its not the appendix though).

Interestingly the first issue she has in this area was 2 1/2 years ago - she has a sudden sharp pain and I took her to the ER - they couldn't find anything wrong but theorized it may have been an ovarian cyst rupture. She was in bed in severe pain for a week. Since then we have been told that it was not a cyst since none of the scans showed anything that looked like one or the aftermath of one. Ever since then she has had periodic lower right abdominal pain the the exact same spot - never as severe as the first time though.
 
xmdmom said:
Is she sexually active? Pelvic inflammatory disease (infection) causes pain in this area.
Click to expand...

Yes but its not gynecological, we were at a gyno last fall - after discussing her symptoms she literately said it wasn't gynecological that is was digestive and to take more probiotics and sent us on our way :(
 
Just thought I'd give everyone an update - Thursday night she had a sharp stabbing pain in her abdomen within an hour of eating and vomited from the pain and nausea. I took her to the ER where we waited 2 1/2 hours for someone to see her which by that time she was doing better. They gave her an IV and some painkillers, did an Xray and urine test (both showed nothing) and sent us on our way. After being there 6+ hours - we left at 5 am - I was exhausted and didn't have the gumption to argue for them to call a GI.

Saturday she had the same pain, again within an hour of eating. Since the ER is useless I didn't take her and instead dug up some painkillers she had been prescribed one time when we were at urgent care for abdominal pain. They worked but I can't exactly keep drugging her up.

Our GI appointment is in a week, it's getting closer and I hope to god they do any and every test they can, I can't take much more of this :(
 
We're in MN also. I'm assuming your appt is with MN Gastro since they can't get you in sooner? I'd give the U of M Childrens a call. I bet they can see you sooner. Any of the GI's there are good. Dr. Baldridge is the newest and likely most open. We see Dr. Sudel.

We had a horrible experience with MN Gastro and if I can save someone else from that, I will. Feel free to PM me if you want. I also know of some good adult GI's if you don't want to go the pediatric route.
 
Did you get blood and stool tests ordered? Good to have those results hen you walk in the door so you don't delay yet another week.
 
Mehita said:
We're in MN also. I'm assuming your appt is with MN Gastro since they can't get you in sooner? I'd give the U of M Childrens a call. I bet they can see you sooner. Any of the GI's there are good. Dr. Baldridge is the newest and likely most open. We see Dr. Sudel.

We had a horrible experience with MN Gastro and if I can save someone else from that, I will. Feel free to PM me if you want. I also know of some good adult GI's if you don't want to go the pediatric route.
Click to expand...

Ugh, unfortunately her insurance is Tricare (military) so we are limited as to where we go :(
 
Her symptoms sound a lot like my sons when he had a stricture. Maybe file that away in the back of your mind to ask about. Dx would entail an MRE since scopes can't reach too far into the small intestine.

Does your insurance cover Mayo? Bit of a drive, I know, but if your daughter is complicated you might want a second opinion (or a records review) at some point.

I guess I'd just suggest going into your appt fully prepared and don't leave until you have a plan. Like others have said, fecal calprotectin, labs, and schedule scopes or MRE. Also get name and number to call for if things take a turn for the worse. Ask where you should go and what you should do so that you don't get blown off again if you end up in the ER. I'm guessing part of the issue you had at Childrens is that you weren't already an established GI patient.

Obviously, I'm not an MNGI fan, but it doesn't sound like you have much choice. Just don't give up, Momma. Push until you get answers and your daughter gets some relief.
 
I just checked, Mayo is out of network. Looks like U of MN childrens is too. Almost everyone listed for GI that is in network is MNGI and those that aren't there don't do pediatrics.

I'd love to know your issues with MNGI. If we dont get some answers there I may have to go to Mayo or Childrens and just pay for it but that thought makes me a bit sick - these things aren't cheap :)
 
You can apply to medical assistance in most states as a secondary insurance for kids
Your DPW should have links for your state might bring other places available as a second opinion
 
It's based on dx not on income
Trust me no one would qualify if it's income based
Just for kids not adults
Stops at 18 though in most states
 
We have this type of insurance for Grace.
Even thou we have private insurance, the deductibles are so high, we could never afford it.
The special children's insurance thru are state has been a big blessing at covering all the deductibles.:rosette2:
 
Minnesotacare takes into account your income. you are right I've never heard of anything like it in MN but I definitely will look around
 
Kind of random, but a friend was having similar issues and it's looking like abdominal migraine. Pretty rare in adults, really common in kids as a precursor to traditional migraine. Something to consider with GI and neurologist. Does she get migraines? Are there specific foods she's eating that trigger the pain? Hope you get it sorted soon.
 
Interesting, I've never heard of that - hes had a couple migraines over the last few years but they've been stress triggered (during school finals). The GI is going to scope her on Friday so keeping my fingers crossed for something....anything!
 
no inflammation visible but they took a bunch of biopsies and we should have those results this week. keeping my fingers croased
 
Well I just got notice that all of her biopsies were fine. I'm not sure if I'm happy or not - I just want to know what's wrong! Next thing they want to do is a HIDA scan for her gallbladder and if that is fine they said they will treat her for IBS. I'm not sure how I feel about treating for something just because they didn't find anything else :(
 
Totally understand!!! IBS HAS to be a diagnosis of exclusion. I am glad they were able to exclude Crohn's and UC though. I am also glad they are not jumping to dx IBS without first checking into other causes.

The gall bladder seems like a reasonable suspicion and I would add the pancreas to that as well.

So sorry there is more waiting and suffering in your future but hopefully they can move things along quickly and get a solid dx and treatment plan soon.

:ghug:
 
It's difficult to know how anyone could say IBS with that weight loss. Hope you have better clarity and that she feels better soon.
 
I'd push for small bowel imaging if they haven't done that yet. Sometimes Crohn's can be hiding there.
 
what scope did she have, colonoscopy or gastroscopy? as another member mentionned, it is true further exam of the small bowel could be interesting.

is she keeping a food diary? maybe there is a association between specific foods and violent attacks.

stones in the gallbladder can be very painful too, its good they want to check that.
 
Been thinking about your girl all day and last night. Did they mention if biopsies from endoscopy ruled out Celiac? I know her blood tests didn't show Celiac but it is possible to still have it and have it show in biopsies.

Did they ever run a fecal calprotectin test? If not, I would demand that one get run asap. Even your ped could order it. It is a simple non invasive test. If it is elevated, that rules out IBS and they will be compelled to do further imaging of the small bowel. If it comes out normal then that would set my mind at ease as far as IBD goes.
 
She had both an endoscopy and a colonoscopy. It was negative for celiac sprue. They have not done any fecal tests - I asked about it at they said the scope is a better indicator. I will ask them to do one anyway.

She says shes been writing down what she eats though I am not hounding her about it - it seems like it doesn't matter though, no matter what she eats hurts. Last night it took a couple hours but the pain did eventually come on.
 
Hi just throwing in my 2 cents, few posts back someone posted regarding being tested for crohn's and uc and it coming back clear - that doesnt make much sense as there arent any tests that can be done to know if the infections which cause crohn's/UC are there due to the fact these tests dont exist yet (it is not even understood which exact sub-species of infection crohns and uc are comprised of) ... am i missing something?

In the hope of providing something that can make things a bit easier for your daughter I can recommend suggesting eating more white rice (maybe a bowl a day) as it helps reduce the pain for me.

If it does turn out to be Crohn's/UC do as much research as possible into the conditions and medications on offer so that you understand that the drugs currently on offer only target the symptoms of the condition and are not effective at curing the disease.

I hope your daughter does not have Crohn's or UC.
 
I had pain in the same general area years ago. I am pretty sure it was from E-Coli. I seem to be hyper sensitive to it.

I treated it myself, and the pain went with it. I know,of another person that experienced the same.

I won't recommend what I used, but there are likely a number of ways to clear it out.

Good luck.

Dan
 
D Bergy said:
I had pain in the same general area years ago. I am pretty sure it was from E-Coli. I seem to be hyper sensitive to it.

I treated it myself, and the pain went with it. I know,of another person that experienced the same.

I won't recommend what I used, but there are likely a number of ways to clear it out.

Good luck.

Dan
Click to expand...

Dan that is very interesting, I wouldn't have thought of it. Its also been recommended I have them test for H Pylori
 
When I had a stricture, but didn't know it yet, I had H-Pylori move up, into my stomach. I think it was from using antacids a lot, due to discomfort of the stricture.
Once I reduced the stomach acid the H-Pylori creeped up into the stomach.

This caused a lot of pain in my stomach, but not any lower than that. What hindered my figuring out what was causing it was two different negative H-Pylori tests. One by a biopsy.

Prior to my Crohns diagnosis, I was already treating my wife for Lyme disease and coinfections using frequency treatments. I knew how effective they could be in killing pathogens, because she improved greatly as a result of the treatments.

I tried treating for 20 or more possible pathogens, but not H-Pylori, because of the negative tests.

Eventually, I had nothing left to try that was a likely candidate for burning stomach pain. I ran the frequencies listed for H-Pylori and the bad pain went away as I ran the treatment.

Since that time I have identified four pathogens involved with my Crohns. H-Pylori & E-Coli being among them.

I guess the moral of the story is that lab tests can only prove you have an infection, not that you don't. The amount of a pathogen needs to be at a certain threshold for a positive test. If someone is particularly sensitive to a pathogen, it can cause problems that may not affect someone else.

Nice to see a fellow Minnesotan Here.

Dan
 

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