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He's still admitted.
They're trying now to switch him to oral meds again and send him home
With no solid answers I guess.
They did another ultrasound last night but we don't know what the results are yet.

I came home last night to get some rest myself after work and sleep. It was so nice :)
My heads still a spinning here and there, (literally and figuratively lol), but hopefully it will stop soon.

This is so frustrating I tell ya !

Oh and btw- the new biopsies are back and negative for celiac and crohns - only shows chronic inflammation. 😁
 
Thanks for the update T. :ghug:

Frustrating is right! :(:(:(

What did the GI say about they saw when scoping?

Is the no go with the Crohn's diagnosis based on granuloma's?

Thinking of you! :heart:

Dusty. xxx
 
Hey T...

I'm sorry I've been out of the loop - I've been down with some kind of virus (stomach flu with vertigo - serious, serious vertigo... ugh...)...

Sounds like the rollercoaster from hell you've been on! I'm so sorry... IF the surgery really happens tomorrow my thoughts and prayers are with you all and everyone involved with the surgery...

God bless....
 
Thanks everyone !
It really is happening tomorrow ; we signed papers and everything ! LOL

Champsmom, I hope you feel better quickly !
I can totally relate to you with that serious vertigo right now ... :ybatty::ybatty:
 
Wow, I'm so sorry the surgery has to go ahead! You really have had quite the ride lately :ghug: take care of yourself!!!

Thinking of you and praying all goes well tomorrow! :ghug: :ghug:
 
:eek2::eek2::eek2:

Oh my goodness T...:ghug:...Sending tons of love, luck and healing thoughts that all goes well Austin! :goodluck::goodluck::goodluck:

Are they going to have a bit of a look around too?

Is it keyhole or open?

Thinking of you! :heart:

Dusty. xxx
 
Goodness, I'm nervous!

You would think with all the surgeries I have been through, and Gab's, and JJ I'd be used to this ... Nope! LOL

I know he'll be ok tho :)
This waiting is the worst part ...


HD
 
He pulled through surgery just fine :)

Surgeon said he didn't really see anything else "abnormal" in there, which is always a good thing to hear.
He said it may take him a little longer to heal because of the duodenal ulcers, but hopefully this will help his pain now.

If he tolerates things well enough today he said he should be able to go home this evening sometime :)
 
Glad it went well!!! Hope all go smoothly today; I'm sure you both just want to get home!!! :ghug:
 
So glad to hear the surgery went well! I'm surprised that after being there so long that they would let him go the same day after the surgery? Is his fever gone?

I really hope he's feeling better T... (and you too!!)

:hug:
 
My Internet has been spotty the past several days so I totally missed about the surgery. So glad he is done with it and sending prayers for a smooth recovery!
 
We are home !

They gave him the option of staying tonight and letting them control his pain, but momma nixed that :p

He's doing good tho and resting - I don't even think he realized how much better it would be just being out of that place :)

Going to have to put JJ on "nurse" duty tomorrow while Gab and I work tho! It's a good thing I taught my kids to cook at an early age LOL.

Thanks for the support everyone !
 
Woohoo! :):):)

So good to hear the surgery went well and Austin is home! :dusty::dusty::dusty:

God I hope things settle for you all T, it is long overdue. :ghug:

In my thoughts mate! :heart:

Dusty. xxx
 
He made it through the night pretty well. He only woke me once for his pain medicine. Seems he's in more pain this morning, but I kind of expected that since he's on much less medication now, thank he was at the hospital.
Eating small amounts and drinking a good amount of water - so, so far so good :)

I'm going to try and talk to Gabs GI doc on Thursday and see if they are willing to take him on as a patient.

On a side note - Gab is due for her Cimzia injection on Wednesday. Usually by the Sunday/Monday before its due (she takes it every two weeks) she is exhausted, and aches in her bones and her eyes start getting very dark.
Well she started taking Magnesuim supplements about 10 days ago, and we are assuming they are the culprit for her NOT looking and feeling sooo terrible right now! Don't get me wrong, she's not "healthy" but there's a definite difference in her energy level and her arthritis pain; and her muscle twitches have stopped !
Hey, we'll take it ! lol
 
That is amazing about Gabs! I am glad Austin is home and eating and drinking. Sending thoughts for a speedy recovery. I will be interested to hear if the magnesium continues to help with those symptoms.
 
Glad to hear things are improving for both Austin and Gab!!!

Hoping for a quick and uneventful recovery for Austin!

And, good news on Gab - that would be so great if the magnesium can continue to help alleviate some of her symptoms!

:ghug:
 
Hoping all continues to go well for Austin T! :ghug: and Gab's doc takes him on. Good luck!

Wow, that is good to hear about Gab! I'm with Kim, I will be very interested to see how she continues to go. Having Matt and Sarah on supplements and in remission I can't gauge if they make a difference. Is Gab on zinc too?

Dusty. :heart:
 
DId they test Gab for Mg or did you just add it to see if it helped?

WE are grasping at straws here for Ds so,,,,,,,
 
We are doing it on our own MLP.
Her GI didn't really agree that she should take it because he said it has a tendency to cause diarrheal, which of course with Crohns patients isn't good :p
Gab did her own research on it, and I have been for quite some time. She decided it was worth the risk w BM issues if it helped with other things. Turns out she's not having BM issues any worse than the "usual", but it definitely seems to be benefiting her in ways.

Now if only it would cure those 2 nasty fistulas on her scar that are causing her LOTS of pain today :(

Dusty - she is not using Zinc.
What are the possible benefits of that?

She also takes D3 for the last few months (her Vitamin D level as of 2 weeks ago is 43.) (I think that's still on the low side ??)

And, 1000 of B12 and as of 2 weeks ago her level is 1089 so it's high right now. (She hasn't taken it this week since we got the blood results - waiting to see what GI has to say as to why it's high - she's been taking that for a year at least with no problems)
 
I know his neuro said if he ever used Mg to balance it out with B2 ( riboflavin) since that helps from a migraine standpoint.
May ask the GI about adding Mg.
 
Have Gab tested for zinc deficiency. I had Matt done and sure enough he was low, thanks David!

It has been linked to symptom improvement and improvement with issues associated with leaky gut (intestinal permeability)

http://www.ncbi.nlm.nih.gov/pubmed/11383597

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1419071/

http://www.bcm.edu/cnrc/consumer/archives/zinc-Crohn's.htm

I have Matt's levels tested each time he has his bloods done.

Matt has had no issues with his magnesium supplementation either. :)

ETA:

Zinc is involved in numerous aspects of cellular metabolism. It is required for the catalytic activity of approximately 100 enzymes [1,2] and it plays a role in immune function [3,4], protein synthesis [4], wound healing [5], DNA synthesis [2,4], and cell division [4]. Zinc also supports normal growth and development during pregnancy, childhood, and adolescence [6-8] and is required for proper sense of taste and smell [9]. A daily intake of zinc is required to maintain a steady state because the body has no specialized zinc storage system [10].

http://ods.od.nih.gov/factsheets/Zinc-HealthProfessional/
Click to expand...

Dusty. xxx
 
Hmmm ... Seeing as how she just had bloods drawn two weeks ago it may be a while before they're done again.
Is there any potential harm in supplementing blindly ?
 
It is possible to have zinc toxicity but in view of Gab's resection I doubt this would occur if you start conservatively and also look at what her dietary intake may be.

I know with Matt his has never really moved away from his favoured diet that closely resembles that of a low residue, so not huge amounts in that.

Have a look at Matt's thread from close to the bottom of page 18 on, David has some good info and links re zinc and magnesium. Here is a link for zinc:

http://lpi.oregonstate.edu/infocenter/minerals/zinc/

Dusty. xxx
 
Just a little update :
I've sorta crawled into a bubble for a few days so I don't get too overwhelmed with all this illness going on with my kiddos.
Austin is still about the same. He started vomiting again yesterday and insisting that I take him back to the ER so I did. They ran another ct and X-ray and said they were negative for any perforations or anything else. They also ran blood and urine tests and they were fine as well. No fevers. They gave him pain meds and nausea meds and sent him home. I have made an appt w Gabs GI doc but it's not until the 7th next month.
That's really good tho considering I was told theyre on a waiting list for new patients till November ! Thankfully, we have a long standing relationship w the doctor and he didnt hesitate to take him on.

I hate to say this, but honestly , I think he's having withdrawals from having sooooo much iv pain med while he was hospitalized and he doesn't even realize it. :(

As far as Gab - well, ill update her Cimzia thread soon, but long story short - she is officially done with Cimzia and it has failed her. She has very large ulcers, and a lot of them, at the resection site. She will be switching to Remicade and will be getting her first infusion this coming Wednesday in hopes to stop this monster in its tracks. Her doc is very concerned that she has a fistula forming beneath the stoma scar and doesn't wanna waste any time.

Fun stuff huh! :p
 
Good luck with the appt.
Fwiw DS had chronic vomiting with his crohn's in the beginning
Once or twice every week or two weeks .
We didn't know he had crohn's at the time.
His blood work was normal as well
So was his upper Gi with sbft.
Never easy

Wishing Gabs lots of luck with remicade.
It was our wonder drug
Hope it is hers as well.
 
I'm so sorry that Austen is still feeling ill. I may have missed this- what did the gallbladder end up looking like when they took it out? Did the doctors feel sure that the gallbladder was the cause of the symptoms?

Also, are his doctors able to do MRIs to limit CT exposure?

Hoping Austen feels better soon!
 
I'm glad you were able to get an apptmt relatively quickly! Hopefully, he will be able to give some guidance as to what exactly is causing all of Austin's symptoms and how to move ahead with treatment. If you're right about the withdrawal, is there anything you can give him to help lessen the side effects?

I also hope the remicade does the trick for Gab!!!

Stay strong yourself, I hope you're taking care of YOU... there's been lots going on and I'd bet you're keeping everyone else taken care of!!! Don't forget about you!

:ghug:
 
I have NO idea what to do about the withdrawals except what I am currently doing and that's basically insisting that he doesn't take what we have at home one second too early. I give him Tylenol in between.
I've honestly never seen anything like how he's behaving and while I feel really bad that he thinks he's in that much pain, I don't feel like he really is. I know he's really uncomfortable, but there are definitely signs that it's not to the level he claims it is. It's unreal.
Then there's that guilt that what if I'm wrong? What if all those scans and blood tests and scopes somehow missed something huge?
I just don't know :/
 
That is a tough call to make. :( However, there's certainly no reason for you to feel any guilt... at this point, you're doing all the right things whether or not the tests have missed something! I have no doubt your instinct will tell you if he needs to go back to ER and, if not, then what you're doing for him is all you can do until his apptmt. :ghug:

But, re the withdrawal, perhaps if you ask in the General IBD section, there may be other members who have had to deal with withdrawal... they may have some suggestions for you??
 
Gosh, you shouldn't be the one who has to determine whether this is withdrawal or something else. What do the doctors or nurses think? Is withdrawal a real possibility given the doses of meds he received-- I have no idea. You'd think the surgeon who operated could tell you how likely this was given the doses he got.

One more thing, was Austen on narcotics when he had the HIDA scan? I ask because I just read that narcotics can cause a false positive scan.

"False positive HIDA scans may occur if the patient is not fasting, or has been fasting for a long period, if opiates have been administered (causing sphincter of Oddi spasm and failure of isotope to pass into the intestine), and in patients with a history of ethanol abuse."
 
Damn T! That's tough especially about Gabs! I hope the remi can clear all that up quickly! God bless you mom!! What a year so far for you guys!
 
I agree I shouldn't have to be the one deciding this :(
I just want to baby him and let the (doctors) deal with their jobs. Wishful thinking ! lol

I've FINALLY got him calmed down after hours of crying and screaming and snuggled on the couch so hopefully he'll be back to sleep soon.

Wow, this is hard !
 
Yes, he was definitely on high doses of iv narcotics ! They were alternating 2 mg of diluadid and roxycodone every two hours !
That may explain why the surgeons were so against the surgery for so long?
 
:hug:Hugs! It sounds super rough.

So, was there any other indication (pathology, or other test) that showed the gallbladder was abnormal? As I said, you may have already posted and I may have missed this.
 
Yes there were also two ultrasounds that's showed a significant amount of sludge backed up into his gallbladder.

Guess it doesn't matter now since they took it out lol.
 
Yes they all went back to normal before he was released.
I've seen his blood results myself and they all looked (fine).
 
Ok I really have no expert knowledge of gallbladders but am trying to discern if the sludge was an incidentaloma rather than the actual cause of his pain. If it wasn't the cause, then of course one wants to know what was, because that could be the cause of his current pain. Does that make some sense?

I just read sludge can occur simply due to decreased intake and in most people sludge doesn't cause any symptoms. But in some, it does cause severe right upper quadrant abdominal pain nausea vomiting diarrhea, fever chills pain after fatty or spicy foods.
 
Oh man T...:hug::hug::hug:...my heart breaks for you. :(

I hope the change of med is just what Gab needs mate, lord knows she is long overdue for a very, very long break from this. :ghug:

Austin: I will be honest T and say I have very real doubts that all this is down to his gallbladder. Don't get me wrong, I hope it is and all this will soon be a long distant memory! No doubt it is more than possible for a young, fit, adult male to have a primary problem with his gallbladder but it would surely be the exception than the rule.

In all the tests they have done has a faecal calprotectin been performed? If not ring and see if the GI (Gabs) will order a test now before he has consulted with him.

The pain: You know your boy better than anyone so go with your gut T and no you shouldn't have to be the one trying to nut out if Austin is having withdrawals.
Stranger things have happened and an addiction can occur quite quickly but i would still have a level of doubt it would occur that quickly given the level of pain his was in.
Then there is the subjective nature of pain. I know for a fact that Sarah's pain threshold is considerably higher than Matthew's. That is not to say that his pain is any less real or valid but just that he is far more sensitive to it and doesn't cope as well with it and yes...I have seen some...dare I say it :ack:...what to me were quite dramatic reactions. Now strike me down! :lol: I will be honest and say that I do have to remind myself that he isn't me, or Sarah, IYKWIM. :wink:

Thinking of you! Always! :heart:

Dusty. xxx
 
Oh T...:(:(:( :ghug:

Thinking of you buddy and hoping more than anything you get solid answers this time round! Sending you all the luck in the world that it is so!

Dusty. :wub:
 
I'm glad you can at least not worry about the should we or shouldn't we go back in T! My heart goes out to you!
 
Just wanted to send a hug! Is there any way he can be transferred to the hospital where Gabs doctor is? That's Mayoclinic correct? If he is there inpatient wouldn't he then be seen by her doctor and not have to be waiting for an appt.
 
Oh T ... so sorry. Was Austin given oral dilaudid for home?
My husband and daughter both had spine surgery this year (Feb and May). We now realize that dilaudid does not work well for them. It does take away their pain but they insist within an hour that their pain is an 11 (yet by looking at their movement levels, I found it hard to believe.) When my daughter was finally switched to a proper amount of oxycontin & oxycodone - things were so much better. Coming off dilaudid (and even valium) caused mood issues. Maybe the pain doctor can switch the opioid.
HUGS!!!!
 
I was actually going to take him to the Mayo ER today if he wasn't any calmer - he just kept insisting he needed to come back to this hospital last night.
Considering he's 18, (almost 19) and he was calling friends to come get him, not much I could do.
I have realized that he has a great deal of anxiety and he's really scared that he has some super rare disease and he's doomed.
I feel like this hospital admission will be another waste of time but maybe ill be wrong ?

They've got him on the exact meds as before - protonix, carafate, zofran, diluadid, and zolysn, along with iv fluids and he's NPO for now.
He's down to 138 lbs :(

We're waiting on a GI consult - the surgeon came in and doesn't think it's a surgical issue and thinks its the duodenal ulcers still; the GP came in and doesn't have a clue. (Go figure)
 
Can you talk to him to try and transfer to the mayo hospital asap?
I would since the current place seems to be in the same pattern as before kwim.

explain that is he has something out of the ordinary you want him to go to the best docs who deal with that.
to get him fixed this time.
hugs
 
That's what I kept telling him last night MLP. I told him I already have him in the system there and Gabs doc and nurse already know the situation and they're amazing and he's so lucky he's getting in to see them so quickly ; I also told him I would take him to their ER before hand if needed. He's just such an intense person, and as I said very high anxiety - couple that with ADHD and no impulse control and well- love him to pieces but he's bit impossible to get through to, and that's putting it mildly :p

My gut is telling me that they won't keep him long here. Maybe another upper endoscopy to check on his ulcers, than they'll be lost again and say oh they just need to heal so were letting you go.
😖
 
So the surgical team just came in again and said obviously it wasn't the gall bladder causing the pain.
We discussed that he has an appt w Gabs doc on the 7th and about her Crohns and the possibility of Austins Crohns. I told them that the only med that I have seen him respond to so far is the IV salumedrol while admitted the first time , but after being released and put on oral Prednisone things worsened. After speaking with him, and us both agreeing that just because his biopsies are negative , if it looks like a duck ...
He is going to recommend to the GI consult that is supposed to be coming in that we start treating him as if he already has a Crohns diagnosis and then medicating him accordingly to see if it helps him.
So now we wait to see if the GI agrees with the surgeon and dr. Mom :p
 
Sorry to butt in, but even if you think that his reported pain is more than what he is actually experiencing, I think that right now he needs you to support him 100%. You can certainly use language such as he says, he feels, he reports etc., but as he is undiagnosed and they really are not sure what, or if something else, is wrong, he needs to be able to trust that you will advocate for him, no matter what. Young adults (actually anyone) can regress developmentally when under severe stress or pain--it is not pretty, but it does happen, just as a potty-trained child can become 'un-trained' when there is a death or separation in the family. (By the way, I had lots of sludge backed up too; went away when the IBD was treated; and the liver enzymes always went down again when I stopped eating.)

I have experienced severe, excruciating nerve pain from a large disc protrusion in my neck that did not present in the 'textbook' way. I had to keep my arm resting above my head to take the pressure off the nerve and I had to keep moving--very entertaining for the medical staff to watch. I saw several doctors in two emergency departments who thought that I was nuts and did not want to treat the pain (except for one kind one--who has chronic pain from AS.) Once everyone saw the huge protrusion on the MRI, they couldn't write prescriptions fast enough. It was so large, it also affected my legs, which everyone had thought was impossible, so they thought I must have been malingering. Although my husband didn't understand what was going on at first, he stood by throughout the whole awful experience--our relationship would be very different now if he hadn't. It took quite a bit of fiddling to get the correct narcotic in the right dose and schedule to relieve the pain. Once the inflammation settled, I quite naturally didn't need the narcotics and was able to taper off myself, very gradually so as not to experience withdrawal.

The year I was diagnosed with IBD, the inflammation was first seen on a scope in September. I saw them on the scope. (If your son currently has unhealed ulcers like I saw, it is not surprising that he is in severe pain.) By December I was desperate, nothing else mattered in the world, but trying to find a way to eat without the pain and symptoms. If I had been younger, with parents to care for me, I suspect that I would have behaved very much like your son--you just want it to stop.

I suspect that you are really worn out by now, Crohn's Mom. Don't let this problem jeopardize your relationship with your son--he needs your support, despite how he acts. ( And I know that you have given more support already than you probably even thought was possible .)

One more thing, I have experienced this regression from one of my own children this year. Once the stressor stabilized, they regained their independence and maturity. I had had one blow-up with them about their behavior- I am glad that there were no more, especially once we realized what the cause of the behaviour was. I believe that they would not have forgiven me, if I had given less support, and I would have found it hard to have forgiven myself. Now I can look back and be amazed that this adult child managed as well as they did during very trying times.

I so hope that you and your family get some answers and more help soon. :hug:
 
Sorry Crohn's Mom--I was crafting my post-and missed your latest. Good for you!! Why we have to be our own children's doctors sometimes frustrates the heck out of me. (Not for IBD at my house though.)

May he soon be feeling better and may you soon be able to rest.
 
Oh man T! Can you juggle and more balls?! I agree with treating him as if he has an IBD dx now! O's doc did that the minute she was admitted and scopes weren't scheduled for another two days. He said he HAD to go through all the protocol...test for C diff and other things first and wait for those tests but that he was so sure it was IBD and that she wouldn't survive the clean out and scopes without first getting some healing so started her on IV steroids right away. So they CAN do it. I hope they do it.
 
As much as I loathed being in the hospital with my son, leaving was even scarier - while there I felt like we had best chance of getting him what he needed.

I pray they are able to get his pain under control T... What a great Mum you are being there for him and your daughter... they are *so* blessed to have you...

(((Hugs))))
 
You know ChampsMom, I have never really feared being home with an ill child after a hospital stay - until this time!
I know everyone "feels" pain different and one may be more sensitive to it than the next (just as dusty said in an earlier post).
It has really thrown me that my 6ft tall, previously 170 lb (boy) can be doubled over and literally crying and crying and begging mommy to help him. It really breaks my heart and I just don't know what to do to help. Doesn't help that he doesn't have a proper diagnosis either so I can't truly reassure him kwim?
Also, Austin has truly been a difficult child through the years and has had his share of rebellion and doing whatever he feels like doing (hence the reason he has his own apartment). So, in saying that, it truly is hard for me to decipher his true pain from possible (assumed) pain with his history.
When I speculate that he may not be in all the pain he thinks he's in, it's not because I think he's faking for drugs, it's just because I am thinking out loud and I have VERY good reasons to suspect unfortunately. (I truly wish I didnt).
I of course, will not put all of the details of his personal choices on here, but trust me when I say I KNOW him.
I am his biggest, and quite frankly and sadly, his only advocate at this point in time.
I do think he is realizing the error of his ways lately tho and hopefully this scary part of his life will get his attention and put him on the right track.
I have complete faith in him no matter what and will be by his side every single second if that's what is needed.
Happy - this was a response to you as well. I know you are well intentioned, but I feel the need to clarify that he and I have a good relationship and were actually getting closer through this.

I so appreciate all the love and support here ! This has truly been so difficult and were no wheres near done - and it's even harder with Gab not being well at the same time.
 
Oh my goodness! What a lot to deal with all at once.

I really hope Austin gets sorted this time, and Gabs new meds does the trick.

Thinking of you all.

(((HUGS))) :ghug: xx
 
Just thought you might need a bit of a laugh T...this isn't you is it?!...
 

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No word from the GI doc yet except for yesterday when he came in and asked for his history and said he's going to look at his previous scopes again.
Waiting.. Waiting... Waiting ...
 
The waiting is so hard! :ghug: I hope you hear something soon!

How is Austin feeling?
 
I so sope you hear something soon. I also soooo understand about stubborn teenagers who think they know best and won't listen. ( I have an 18 year old son.) it's very interesting that the solumedrol helpd and nothing else. How long was he on the prednisone by mouth? Maybe it just didn't that've enough time to work. Anywa I hope you get some answers today!
 
Ugh! Waiting must be the suckiest thing ever! :voodoo:

I don't expect you to recall T with the way I blether on but while I think the Prednisone did help stabilise Matt as such he really only showed the response you would expect from steroids when they were given IV in the form of Hydrocortisone.

:hang:

Dusty. :heart:
 
I think I do recall that Dusty :)

He is scheduled to have an Enteroscopy in the morning with the GI doc to try and get a better look at his small bowel.

They are also checking for Porphyria through the bloods and urine? I tried to read up on that a bit cause I've never heard of it.
I guess it's good that they're trying to take a step back and see a different picture ?
 
Glad he's, at least, feeling a bit more comfortable - nothing worse than seeing them suffering! :cry:

Ugghh, more tests! But, they'll hopefully give you some real answers!

:ghug:
 
Porphyria? Like you say it is good they seem to be thinking outside the square and covering all bases so I assume they are basing this on his severe abdominal pain and the fact that it can mimic IBS? Seems a long bow T but I'm sure stranger have happened! :eek2:

I don't know a lot about it except that it is generally genetic and is a metabolic disorder. As far as I am aware though it does not have the ability to cause structural changes to the bowel.

Good luck with the tests and sending you tons of luck that they provide real answers!

Dusty. xxx
 
Ulcers, ulcers and more ulcers is all I know right now ...
They want to do a colonoscopy tomorrow again.
Argh
 
Sorry to hear that. Hope the colonoscopy goes well. Hope they manage to come to a diagnosis for sure so he doesn't have to keep going through all the tests!
 
Sorry T, been away a couple of days, was hoping he would be feeling better and you would have answers. ((HUGS))
 
Just got to the Mayo for Gabs first Remicade infusion and on the way here got the phone call, after Austins colonoscopy, ... It's officially Crohns :(

Austin is MAD as hell.
Hopefully he'll calm down by the time I get back and I can try and reassure him that his life's not over (as he puts it).

Oh joy ...
Even tho I "knew" it, it's still so hard to take in.
 

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