8-year-old son diagnosed with Crohn's...doc wants to go straight to Remicade.

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Steve S

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**I'm just cross-posting this from the "Your Story" section since I was told there may be more help in this section**

So my son has been dealing with issues for the past 3 months or so. It started with a fissure, and he ended up having a fistula not long after. He had a fistulotomy in mid-December, and it was his unusually slow healing time that caused his doctor to even suspect Crohn's (there were no other markers - he's chunky, seems to have decent energy levels, and had never had any abdominal pain or previous bottom issues).

Well, on Monday we had his endoscopy and colonoscopy (the upper GI came back clean), and the doctor informed us that he believes he has Crohn's. He said he'd call the intestinal portion mild (he had some ulcers on his esophagus and some pussy looking areas near his ilium - I forget if he called that ulcers, swelling or what, but it wasn't out of control by any means). He did say, though, that he'd say the perianal portion he'd call moderate.

Long story short(er), he's recommending Remicade, and his mother and I are not entirely sure we want to go this route. He wants to take a chest x-ray to check for TB, of course, and wants to start him on Entocort today. The side effects of Remicade (though obviously rare) are extremely concerning to us. I've seen that some doctors take a Top-Down approach (and go right for the heavy meds) while others take a Step-Up approach. Even Remicade's site says it's to be used when other meds fail.

The doctor mentioned wanting to go with Remicade because he wants his bottom to heal (like I said, it's been three months....though he's actually feeling pretty good now, and his bottom looks better than it has at any point...but it's not healed completely).

This isn't even taking into account the cost. We have Blue Cross Blue Shield for the kids' insurance, and we don't yet know what they'll cover. We were actually thinking we'd be better off going with more natural things (fish oil, coconut water) in combination with more conservative meds (steroids, maybe, for flare-ups....something other than Remicade).

Sorry for the long post, but it's more than just a little overwhelming. Any help, input, insight, encouragement, et cetera, would be greatly appreciated.

Steve

PS - I'm now reading the posts in this area, and I can already tell they're going to be extremely helpful, but I just figured I'd post here as well. Thanks again.
 
Hello Steve,

Welcome, I am sure you will find this forum very supportive. I am sorry though that our son is having to deal with all of this.

I too have a little boy - 6 years old - with Crohn's. He too started with perianal issures - fissures, then a perianal abscess and then a fistula. He now has some mouth issues too. So far we haven't had any of the 'crohn's drugs' just some antibiotics, surgical treatments for the abscess and fistula.

Our doc too is possibly looking at starting something more 'heavy-duty'. And I just wanted to say that I know exactly how you feel - it is quite daunting when faced with these sorts of decisions. I can't offer you any advise on the medicines choice - I just don't have that expertise.

My plan to cope with the decisions, is to ask lots of questions and do lots of reading and I know some people go to get a second gastro opinion.

All we want as parents is to do the best for our kids, for them to be well and for the disease to have as little effect as possible on their life.

Many people are out there living well and getting on with life with crohns. But I know it is very hard when our little kids are suddenlly faced with something like this.

Take care,
LilyRose
 
Welcome Steve! It's such a personal decision, it is very hard to make recommendations! You'll find support either way but you'll also run across those who will blast all western meds. My son (12) has been on Humira for nearly a year with no crohns symptoms or any other bloodwork indicators of any sort. They will keep a careful eye on his blood work whatever you decide.

Good luck whatever you decide!! Let us know how he's going!
 
Hey there!
Another case wherein the child seems relatively well and hasn't dramatic GI symptoms causing doubt as to treatment...yep, welcome to my personal hell.

I too have a kid who looks GREAT, has ZERO GI sx, and maintained with NO DRUGS from dx in 09/08 until last week when she started Humira. We chose the TOP DOWN route, though I am as opposed to using meds as anyone and far moreso than many.
She did do a short course of Pentasa when she started having weakness (her ONLY symptom) in Oct; it caused rectal bleeding.
So instead of messing about with 6mp -which her GI said is equally "scary" as Humira- we opted to go for the big gun for three mo trial only.

I have heard that Remicade is the drug of choice for fistulizing CD. Perhaps your GI is thinking your son shall form fistulas if not aggressively treated; those can be very difficult to heal once formed.

Top down IS SCARY. But if effective, seems worth it. In our case, QOL was the deciding factor. If your son has that already, that may weigh more heavily in favor of avoiding drugs unless that declines. The flip side to THAT approach, is untreated disease can cause serious problems.

There is NO easy choice with this rotten disease.
I know exactly how you feel.
 
Thanks so much for the input. So, LilyRose, it sounds like you've been down a very similar path. Did they lean towards Crohn's before the fistulotomy? His fissuers were fairly close in time to his abscess, which then led to them deciding it was caused by a fistula, but it wasn't until that area didn't heal like it was supposed to that the doctor even started to consider Crohn's. He did have a tag or two, but it was the non-healing nature post-surgery that made her refer us to a gastrointerologist.

So did your boy not heal post-surgery as well? How many abscesses has he had? Does each one come with a fistulotomy, or can they be more "simple" and just have to be drained surgically? We're just so overwhelmed at this point, and we're really wondering if Remicaid is the right step. He just took his first three pills of Entocort this morning (he just learned how to take pills, so that will help), and even that seems to be on the more "heavy-duty" end of things.

Honestly, we didn't even research Crohn's much because we wanted to cross that bridge when and if we came to it. Well, we're at that bridge, and honestly the more we look into it, the more concerned I am for my little man. He absolutely loves playing football and actually played through the fissure before the abscess sidelined him for his final tournament. We don't know whether to pump him full of fish oils and coconut milk, go the steroid route, or pull out the big guns and try this Remicaid.

Someone else mentioned enteral nutrition (liquid diet?).....is that for weight loss issues (not his problem at this point) or just generally a good way to help out the digestive tract? I'm actually really concerned that his issue showed itself perianally . I'm so glad to have heard from someone who has dealt with this very issue. Most of the time it seems stomach pain is the factor that gets most people's attention.

Sorry...I'm rambling. I think I may be best served by just checking out some of y'all's prior posts...which I plan to do right now.

Thanks again!

Steve
 
Enteral nutrition, which Violet has used for 3.5 years and shall continue with, is for BOTH nutrition AND has anticytokinergic effect, i.e., it actually "blunts" (V's doc's word) the systemic effect of intestinal inflammation. V's doc credits it with how well she has done, her excellent growth/development despite active disease, her ability to fight infection, and overall excellent global health.
She doesn't have weight loss, nor abd pain. She did at dx. But she is now 63in and 128lbs.
She has small bowel disease, though, and I am told EN is not as effective for lower bowel issues. I'd still use it though, as I feel these kids all have some malabsorption and the EN guarantees nutrition.
 
Thanks for the info, imaboveitall. So how are the different ways to do the EN thing? I ready something about nasogastric tubes and I think something else about maybe a feeding tube somewhere else? With him wanting to play sports, I'm wondering how we'd take that route.

Again....this is all so overwhelming. My wife is currently getting caught up on these threads, and I have a feeling she'll "drop by" any minute to introduce herself. 8^)

Steve
 
Hi Steve,

I just wanted to jump in and say how sorry I am that your family is facing these tough decisions. My son has been using EN as a treatment since diagnosis, however, at one point, his GI has warned that we may have to move to methotrexate eventually. Being faced with that was heartwrenching! His inflammation has come down so I feel we've been given a reprieve, however, I so worry that it is only a temporary reprieve.

Unfortunately, doing nothing is not an option for us parents. :( (Trying to convince myself as much as anyone else! :redface: ) I believe supplements can help, however, I'm not sure that they are enough. :( Does your son's GI want him to start on the Remicade immediately? Is there a reason why the GI can't review the situation once the Entocort has some time to, hopefully, improve your son's condition? As I'm not familiar with perianal issues, I'm not sure of the urgency or risks of not commencing Remicade immediately???

Just one more note, a close friend has a 10 year old daughter who was quite sick with Crohns, was in the hospital for approx. 4 weeks over the summer and was facing surgery. Although their daughter was on methotrexate, my friends were very scared of moving to Remicade. Their daughter improved so that surgery was not needed and then started Remicade. Thus far, there has been a huge improvement, the little girl is much, much healthier (no issues at all) and has had no side effects from the Remicade. It has given her back her quality of life and, I hope, is also healing her insides!

Sending your son the best wishes, whichever course of treatment you decide on. :ghug:
 
Steve,

Just in response to your questions re EN - my son ingests his EN formula overnight through an NG tube. He is 17, plays hockey, goes to school, etc. and the EN has not interfered with his activities. There are different procedures with EN - some use the NG tube only overnight, inserting/removing the tube daily (as my son does), others keep the tube in throughout the day and there are also formulas you can drink. Each has it's pros and cons.

There's quite a bit of info in the Enternal Nutrition subforum but feel free to ask any question as well! :)
 
Thanks for the info, Tess.

We plan to ask his doctor (Dr. Zweiner at Dell Children's) about his desire to go straight to Remicade. We talked to the school nurse, and her own child goes to Zweiner (not sure why), and she said that she knows he sometimes recommends priobiotics first. So I'm guessing there's a reason he wants to go straight to Remicade, and we intend to find out.

Thanks again!

Steve
 
Hi Everyone! I'm Nate's Mom, wife of Steve S. Thank you all so much for your words of encouragement and helpful advice about what has worked and what hasn't for your kids. There is so much to process, so it helps to hear how other parents have dealt with this.

Blessings!
Tamara
 
Hey Mrs.! Nice to "meet" you.

Yes, as Tess said, EN is not always ENOUGH. It did give Violet 3.5 symptom free years (clinical remission) but it NEVER put her into biochemical remission.
She, as Tess's son, places the tube (it is no bigger in diameter than a piece of cooked spaghetti) each night at bedtime and takes it out as soon as she wakes up at 6a.m. This takes literally seconds and is painless. She doesn't even gag/cough.
She uses a medical grade formula that is peptide based and easily digested. She also eats ANYthing and EVERYthing. No food restrictions. The feeds in her case (this is NOT SO in all cases) are used as an adjunct to now, Humira, and as a dietary addition, not substitution.

Julie
 
Just spoke to Dr. Zweiner. He's been doing this a while (20+ years) and said he's been dealing with CD pre-Remicade. He's recommending Remicade because of the perianal disease. He feels that's the best chance at getting that to heal quickly. He said the Entocort would help his ilium issues (which he called moderate today). Can't remember, but I think he said it would help the esophagus, too (which he called mild).


He was very comforting, and we're putting off Remicade for at least a week so we can talk about it as a family and then discuss it with him again. He mentioned liquid diets was a possibility as a main treatment, but that he'd have to be strictly on a liquid diet (not just at night). Ugh.

We're going to discuss this more, but we'd also love some input. I think I'm actually leaning Remicade at this point....though the severe side effects are incredibly concerning. He just doubts that his perianal issues will heal anytime soon without Remicade. At least I think that was the gist of the conversation.
 
My son's initial EN treatment was liquid only for six weeks. The only 'foods' he was allowed were clear liquids - broth, jello, clear juices/pop, clear candies, freezies, etc. He managed, without a lot of complaint, however, he is 17 - a bit more understanding of the necessity. And, as he ingested the formula overnight, he did feel physical hunger by mid-afternoon (as well as behavioural hunger). He had broth and freezies at lunch with friends, etc. but I can't imagine the willpower it took for him to not have some pizza, etc. with friends. However, the drinkable formulas may help alleviate some of the physical hunger as the calories can be spread out through the day. However, my understanding is that there is a fair amount of formula to drink through the day. (My son took in 2000 mls per night.)

Having said this, the 10 year old girl I mentioned, did this exact treatment last summer (same clinic/hospital) and managed fairly easily without food. But, this little girl was quite a bit more ill at the time and probably had less of an appetite to begin with...

Ugghh... pros and cons either way... just a bit of info for you.
 
Welcome to the forum Steve.

My son too was dx'ed at age 8 (now 10) after having a non-healing peri-anal abscess drain wound, surgery found the fistula, then bloodwork showed inflammation. Then endoscopy/colonoscopy showed Crohn's, as did a barium xray - terminal ileum inflammation. We started with 6MP first, bit scary too, it helped, but didn't push him over the edge. When he got a new fistula, healed with 8 weeks of IV antibiotics, we went to Remicade. Never an easy choice, but truly a miracle drug. He had energy and gained weight for the first time in over a year. But, he developed antibodies to it after 7 months, so we just switched to Humira. My son is way behind on growth, so it was worth the rare risk for us. there seem to be so few meds to choose from that really work. I really wish we could instead have a cure of course!

Remicade is pretty low maintenance, the nurses are great, it's just once/8 weeks. I was stressed out about insurance covering it, we too have BCBS, they covered it 100% since it was done in a medical setting - the infusion lab (not covered by pharmacy plan). There is lots of financial help out there for these drugs too, start with the remicade company site.

So great that you continue to discuss it with your doctor, you need to feel good with your choices for your son. It's not easy. I don't like messing with his immune system, but it's messing with his quality of life, so about all you can do is gather as much information as possible.
 
Hi, sorry to hear you are having to go through this. My son was diagnosed last August so we are still "learning" about Crohns.
We are on no medications at the moment but my son had an 8 week exclusive EN diet and then reintroduced food.
He couldn't stand the taste of the liquid so ended up having a NG tube stay in place for the full 8 weeks. He went to high school with it in and it was fine - just brought him home for "lunch" and fed him through a gravity bolus.
It is supposed to have a healing and anti-inflammatory property and so far my son is on no other meds, although he is on antibiotics for an anal absess (his first). Docs have not mentioned any Crohns meds yet.
Good luck - EN definately worth looking into
 
Welcome! I didn't read through all the replies, but there is a warning with Remicade that concerns young males. I wasn't concerned because I'm an adult female (and it's working wonders for me, so I do love remicade!). It just jumped out at me when you mentioned he was a young male. Search hepatosplenic T-cell lymphoma and Remicade. It's a rare risk, but it IS a cancer that has occured with Remicade use in young males. It may be a risk worth taking, but I just wanted to make sure you were aware of it.
 
Hey Steve and Tamara, :bigwave:

EN can be used when weight becomes an issue but in the case of children with Crohn's it is generally used as a first line of treatment against inflammation. Studies suggest that it is as effective as steroids at inducing remission in many cases. It is not a long term treatment as such and at some point a medication needs to be added to keep the disease in check. Most articles suggest adding a medication whilst still on EN, much like introducing a maintenance medication whilst still taking steroids.

I have looked through my reading list and most research involving EN is exclusive therapy, so as your GI has suggested, nothing but liquids. There is success with EN and perianal disease and I would well imagine that "resting the bowel" would be helpful with anal disease, this is one abstract...

http://onlinelibrary.wiley.com/doi/10.1111/j.1751-2980.2010.00434.x/abstract

...Compliance is always something that needs to be considered no matter what the treatment. If you son is unable to tolerate EN then it is no use going down that path, the same as if he flatly refused to have an IV inserted then Remicade is not the drug of choice for him. It matters not what the reason is, side effects or a psychological issue, they are as valid as each other.

As I said in the your story thread, Remicade is very successful in treating perianal disease and no doubt that is where the GI is coming from. If you feel you have time on your side though and his symptoms are manageable then I don't see how a step up approach would hurt, bearing in mind that you need to be open and objective to your son's progress if changes need to be made.

Please have a look at this link regarding the balancing of risks and benefits associated with treatment...

http://www.ccfa.org/webcasts/Risk%20and%20BenefitsTranscript.pdf

Have antibiotics not been thrown into the equation with the Entocort?

Dusty. xxx
 
Hard to add much to what Dusty said, she covered all salient points so well.

V's doc never restricted food though everyone else who uses EN seems to. But, she was eating almost nothing at that point so I guess he figured her food intake would be practically nil anyway.

This forum has been a sanity saver for me since lat week; so many intelligent posters. Thanks, everyone :ghug:
 
Hey Steve and Tamara! Welcome to the forum -- I am new to it also. I joined when the doctors recommended my daughter start Remicade. She's been on Asacol a year and it just hasn't gotten her to remission. We just have to do the TB test and then we start. This is no doubt a difficult decision for you to make. But it is your decision. You will get much support and great information here. There are many who have had great success on Remicade. No one can tell you for sure what will work for your son. But you are doing the right thing. Asking questions, researching. I find comfort just in reading others stories and knowing there are so many others who are having the same fears, frustrations, concerns and questions. Best of luck to you and to your son.
 
DD was on Remicade for a few months...it is a scary step to take, and I also agree with everyone about reading about the potential risks vs potential benefits.
The cases of Hepatosplenic t cell lymphoma all happened in patients treated with azathioprine or 6-mercaptopurine concomitantly with REMICADE.
I think it is important when considering any drug to read the full prescribing information (not just the medication guide). It's usually PDF and generally discusses the drug and its effects in detail. It can be tedious reading but you can learn the success rate, potential side effects, how the drug works, etc.

My daughter also did enteral nutrition for a month...we chose to leave the tube in because of her age. Her doc didn't restrict her diet, although we fed during the day so she was rarely hungry. It did seem to help a bit with her symptoms but the tube came out accidentally after a month and I didn't see a drastic enough improvement to replace it at that time. (Placement for her was traumatic...she cried for a week about a sore throat).
We have MVP and our Remi was covered in full (although I did get to see the bill...over $6000 a treatment (!))
Welcome to both of you...so many tough decisions and I wish you the best. :)
 
Thank you guys again for all the input. I can't tell you how helpful it is. Nate's doctor mentioned all these side effects the day of the colonoscopy and endoscopy (including the lymphoma in kids taking Remicade and 6MP simultaneously....something he says is still done, though he does not do it).

We're scheduled to meet with the doctor again on Wednesay. He wants us to research, formulate questions and concerns, and then maybe decide to Remi or not to Remi. He said there were MANY ways we could go about this, and he wants us to be comfortable/confident in whichever direction we go.

BTW, one of my biggest concerns about Remi is how it reacts in patients with TB. He said he's seen two negative reactions to Remi, one child who had rheumatoid arthritis and ended up having TB that went systemic (not his patient, but a local kid) and was in the hospital for 5 months and it was almost 9 months before he was better.

The other person had lupus and ended up having some sort of spinal nerve issues that eventually caused death, but he said it's the same kind of thing that lupus does, so it could have been the lupus, the Remi, or the combo that caused the issue.

So how concerned are Remi patients with TB? It seems a serious consideration....I know at least two people that have been exposed to TB (both social workers at the time), so I'm wondering how much of a risk that is.

Thanks again.

Steve
 
Do you mean exposure to TB after starting? Because they do a Mantoux test prior, to r/o the pt having it.
I honestly never thought about that. What if they get exposed while on it?
A new worry, thanks Steve! :shifty:

Your doc sounds great, the type to work with the parents/pt and consider their opinions and respect them. That's awesome.
Do consider the EN; it cannot harm, only help.
 
Last edited:
Yeah, I was talking about while on Remi. He's scheduled for a chest x-ray on Monday to rule out TB (and blood work to rule out hepatitis, I believe). Sorry about the new worry, though :redface:.

What is the general thought on a dietary attack, btw? Not sure EN is for us since he's not having weight issues (he's actually very stocky) and his Crohn's is most significant perianally. We were actually thinking of putting him on the same diet his mother and I are currently on (paleolithic - the caveman diet) since I read somewhere that that helped a Crohn's patient. We thought maybe paleo combined with the Entocort combined with vitamin supplements and fish oil might be the way to go, but we just don't know how effective that will be with his main issues being perianal :confused:

Thank God we found this forum, btw, I can already tell it's going to be so very, very helpful.
 
The premise behind the formula feeds is, of course, to maintain nutritional status as these kids almost always have micronutrient malabsorption. But, the lesser realized effect according to Violet's doc and many med journal articles I've read, is that the feeds actually reduce systemic effect of inflammation and reduce cytokines. Violet eats and looks like an ox, but we still keep her on it at night at a much reduced rate (from 3000cals/24hr at dx to 1200 cals now) and shall until she finishes growing at age sixteen. In other countries it is FIRST LINE treatment for kids, her doc said if we were in the UK or Japan it wouldn't even be a choice, it's just what's done.

It's so that for lower bowel disease it isn't as effective, but just something to consider and ask your doc about.
Since it cannot hurt and MAY help, I'm always an advocate of it. It's what kept Violet off meds and living life healthy for 3.5 years.

And yes, this forum does rock. :thumright:
 
So V eats a normal diet during the day and gets 1200cals through an NG tube at night? Do you let her eat whatever she wants or do something else (like that LOFFLEX diet or a Paleo diet)?
 
Yup, she eats a normal diet. Her doc has allowed that from the jump, even when on feeds 24hr as she was for the first 30 days.

HOWEVER. This is NOT the norm. I have read at least one other mother on here say that was how they also did it, but it seems the usual way is to restrict solid foods for 4-6 weeks and just consume the formula.
That's considered the most effective way, (see Dusty's post above) and is with a "bowel rest" view.
V's doc is more of the anticytokinergic/ max nutrition point of view than bowel rest, in HER case. I never asked why, just went along. I thought that was how it was "done". It was only after researching it that I found that most docs restrict the pt to a liquid diet.
 
Re high risk tb areas...
"These environments include prisons and jails (11), nursing homes/facilities and other long-term facilities for the elderly (12), and health-care facilities (including residential mental health facilities) (13). Persons who work in these settings must be educated about the risk of transmission, the signs and symptoms of tuberculosis, and the proper procedures for minimizing the risk of transmission."

I also have an autoimmune disorder and work in healthcare (including working in healthcare in a jail where I was exposed to TB regularly.) I get tested for tb annually and have not caught it despite being unknowingly exposed (and not wearing a mask).

I, however, was not on Remi while being exposed...but I believe you should consider whether or not you are in/exposed to a high risk population.
 
Thanks, Izzi'sMom.

Yeah, the folks we know who were tested for it were exposed while doing their social work duties. Nathan being 8 will, hopefully, not be in any high-risk environments. Dr. Zweiner explained that TB + Remi = Gas on a fire....systemic TB is quite possible and a very difficult recovery.
 
Steve S and Nates Mom - So sorry to hear about your son. Our daughter was diagnosed with Crohn's just over a year ago. Because of where her Crohn's is located in her large intestine, Remicade was recommended for her. Ashley has been on Remicade for just over a year and is in remission. She feels great and is a very active teenager playing all her sports - nothing holds her back. It was a very tough decision to make, but after seeing her before diagnosis and now a year later - I think the remicade has worked wonders for her. Good luck to your family!
 
chrisnsteph1022 said:
Welcome! I didn't read through all the replies, but there is a warning with Remicade that concerns young males. I wasn't concerned because I'm an adult female (and it's working wonders for me, so I do love remicade!). It just jumped out at me when you mentioned he was a young male. Search hepatosplenic T-cell lymphoma and Remicade. It's a rare risk, but it IS a cancer that has occured with Remicade use in young males. It may be a risk worth taking, but I just wanted to make sure you were aware of it.
Click to expand...

That was concurrent treatment with Aza, and it was like 20 or 30 cases of it out of 400'000 people.
 
Het Steve and Tamara,
So sorry you are going through this. Remicade is scary I just crossed that bridge two weeks ago. My daughter got her first remicade followed by another 4 days later. I have read through most of the replies but not all of them. The best reasoning i found for the top down approach which I did not do and wish I would have. My DD is 4 and has severe UC. We tried 3 different treatments before going remicade. It was explained to me after the fact that why they choose big guns first is they know if it works, it will work well and quickly. What you want to avoid is narrowing and ulcers. These cause scar tissue and cause more narrowing... if the smaller guns aren't working you might not know they are not working because of steroids are used while waiting for them to maintenance meds to work. We did this since October and she went from mild to severe UC almost had to have her colon removed. We used remicade as a last resort and I wish I would not have. if it were explain the was I just explained it in the beginning I would have taking a different route.

This is my daughter case also and everyone is different. You will need to decide on your own. I have a lot of regret with my questioning the doctors. I felt better when I asked my doctor "If this was your kid what would you do and why verse the alternative."

Again all of our story are different and each kid is unique. My DD Rowan responded to Remicade her symptoms were obvious. (lots of blood). She started to bulk up and that night and start sleeping through the night again in two days. She was up all night for 23 days using the toilet and in pain. I was a miracle. Her UC was so bad she got two loaded doses 4 days apart.

My best to you and your family. This Is the most stressful thing I have ever gone through. My story is extreme I think. So I hope your road is a road less traveled compared to mine.

Take care,
 

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