Having a hard time dealing with son's illness & depression- Really could use support

[mirandapresley]

My son, who is 13, is in the midst of a year long struggle of trying to get a DX for whatever is making him vomit every day and has him in constant pain. He has Celiac disease, which has been under control for years, and despite a colonoscopy, endoscopy and MR, we don't have any real idea of what is causing it or how to treat it.

He is an anxious kid anyway, who suffers from depression. When he is in pain, everything snowballs and becomes much, much worse. He has now developed OCD along with his other issues.

He is seeing a therapist, recently started a new med which is helping a little, but every day, almost all day, is spent with him bemoaning his life...ie, his illness, his lack of friends, his life sucking, etc...

I struggle with depression, so I am empathetic. I know how it distorts your thinking, and I know you can't just shake it off. But constantly having to combat his negativity, trying to talk him down or deal with his non-stop pity party- its too much. And I can't just ignore him...he will sit there sobbing on his closet and has frequently talked about wanting to die or kill himself. (His drs know this, we decided against inpatient care for multiple reasons, and he is never left unsupervised.)

It's just so hard. I find myself wanting to go bawl in MY closet after hours of this. I don't have anyone to talk to either. We moves here a year ago and I don't have close friends that I can just start dumping personal issues like this on yet. It's triggering MY depression and anxiety, and I JUST got put of a major slump after six weeks of everyday TMS therapy, which was a huge time and money commitment. I can't go backwards.

So how do I cope? How do you other parents cope? How do you keep your sick kid from seeing themselves just as "the sick kid" and dwelling on it constantly and feeling sorry for themselves? I know he is in pain, and my heart breaks off him. But I also know other kids are in just as much pain, and much more pain in many cases...and yet they push through it. I want to be supportive, I constantly reassure him that I believe him and that we will get to the bot to of it- but it isn't enough. I try everything to distract him from it, and to not focus our lives on his illness so that he doesn't, but nothing is working.

I know nobody is really going to have answers for me, and that's ok. I just need to vent, and I need to hear that I can get through this I think. Or at least know that others have.

 

[ronroush7]

Welcome. You also might try the section in here called Parents of Kids with ibd. I am going to tag Maya 142, Clash, my little penguin. I hope you get help soon.

 

[Maya142]

Sending hugs. It is REALLY, really hard to watch your child in pain. It is especially hard when they don't have a diagnosis yet.

I would focus on the fact that you have a plan - a second opinion that is coming up soon, right? Sometimes a second set of eyes is just what you need. And he has some more testing coming up soon - a pill cam, right? That may give you more info.

I think you have issues you are dealing with here - your son's GI issues and pain, as well as his anxiety and depression.

It sounds like his anxiety and depression are really bad, and they are definitely making the pain worse.

I would also look into a referral to a pediatric pain program like we talked about on your other thread. That would teach him to learn how to cope with the pain - how to live well, despite the pain.

Obviously, he needs a diagnosis first, but if you are able to rule out IBD, then I would definitely get him to a pain program ASAP. They are all about making kids functional again - teaching them how to enjoy life again, despite the circumstances they are in.

It really, really helped my daughter.

It takes a long time to get into one (there are wait-lists) so I'd start the process now. Once they do the evaluation (which usually takes 4 weeks) then there is a wait-list usually. We looked at Boston Children's and Cleveland Clinic but there are programs at many of the big children's hospitals.

The other thing I'd reconsider is inpatient mental health care. It may really help - both you AND him. He may need more care than you can give him at home. I'm not judging at all - just thinking out loud.

Having a child who is suicidal and distraught and needs to be watched all the time has got to be terrifying and exhausting. It must take a real toll on you. And you have to help yourself to help him - sort of like putting your own oxygen mask on before helping a child on an airplane.

Getting good mental health care also may mean a drive - to get him the help he needs. We drive 1.5 hours each way to see my daughter's psychologist - we couldn't find anyone closer who could help her. It is SO worth it.

Sending big hugs.

 

[ronroush7]

Sending prayers

 

[mirandapresley]

Sending hugs. It is REALLY, really hard to watch your child in pain. It is especially hard when they don't have a diagnosis yet.

I would focus on the fact that you have a plan - a second opinion that is coming up soon, right? Sometimes a second set of eyes is just what you need. And he has some more testing coming up soon - a pill cam, right? That may give you more info.

I think you have issues you are dealing with here - your son's GI issues and pain, as well as his anxiety and depression.

It sounds like his anxiety and depression are really bad, and they are definitely making the pain worse.

I would also look into a referral to a pediatric pain program like we talked about on your other thread. That would teach him to learn how to cope with the pain - how to live well, despite the pain.

Obviously, he needs a diagnosis first, but if you are able to rule out IBD, then I would definitely get him to a pain program ASAP. They are all about making kids functional again - teaching them how to enjoy life again, despite the circumstances they are in.

It really, really helped my daughter.

It takes a long time to get into one (there are wait-lists) so I'd start the process now. Once they do the evaluation (which usually takes 4 weeks) then there is a wait-list usually. We looked at Boston Children's and Cleveland Clinic but there are programs at many of the big children's hospitals.

The other thing I'd reconsider is inpatient mental health care. It may really help - both you AND him. He may need more care than you can give him at home. I'm not judging at all - just thinking out loud.

Having a child who is suicidal and distraught and needs to be watched all the time has got to be terrifying and exhausting. It must take a real toll on you. And you have to help yourself to help him - sort of like putting your own oxygen mask on before helping a child on an airplane.

Getting good mental health care also may mean a drive - to get him the help he needs. We drive 1.5 hours each way to see my daughter's psychologist - we couldn't find anyone closer who could help her. It is SO worth it.

Sending big hugs.

I am really trying to do that, focus on the next step in the hopes that it will be what changes things, but its really hard. I'm discouraged, beginning to doubt myself and my own sanity. Beginning to wonder if maybe I'm the problem, like the doctors' seem to think-some hypochondriac mom making her son anxious about his health. Logically...I don't think I am. I know there are verifiable facts to show there is a problem- but since the doctors keep dismissing those things as insignificant, I wonder if I AM over-reacting? Meanwhile, I'm trying to hide that doubt and reassure my son that I believe him, that there is a problem and I will do whatever it takes to find out what it is and fix it. It's getting harder and harder every day to keep doing that, when I don't even feel like I can convince myself anymore.

We decided against inpatient care because the closest place was a 2 hr drive from here, and my sister in law, a social worker, said it was a really bad place, not a safe environment. This state is sorely lacking in mental health care options we have found out. In addition, there is the fact that school has started, and we are trying to help him be a "normal" kid- help him fit in, make friends, which has been hard since he is still the new kid. Yanking him out of school to admit him into a psychiatric hospital seems like it would be counter productive and likely do more harm than good. We do not feel he is an immediate threat to himself- he hasn't threatened to kill himself, just frequently says he wishes he were dead and has begged me to kill him. He is terrified of pain and completely phobic that everything in his environment, especially his food, is poisoning him, and is scared even to take his medication- so I think it very unlikely he would take any action against himself. He doesn't really want to die- he just doesn't want to live this way. Regardless, he is either with us or at school, 100% of the time. There are no weapons at home, the medications are locked up and since his anxiety is so severe he wont even sleep in his room, he sleeps on a cot at the foot of our bed most nights. The last few nights he finally slept on the couch, and slept all night- which is huge, and an encouraging sign that his medication is having an effect. But its two steps forward, one step back. Today was a rough day as his two friends were otherwise occupied, so he fell into full on self pity mode and is the loneliest kid in the world, no friends, everyone hates him, etc, etc...

I am just so stressed out, all the time, trying to deal with him and work full time. I've had to take a ton if time off work to go to his various appts, and we can't afford it as we already are living paycheck to paycheck. Driving him two hours each way to therapy in the next large town isnt an option.

I have asked his Psych about any pain programs here but there are none. The closest is going to be either Ohio or Boston...so I am going to contact them and get on the wait list, because I am pretty sure this is not going to be a short lived battle, regardless of if it turns out to be IBD, refractory Celiac, or something else.

I appreciate all of the support. Not making it through this isn't an option, so I know that I will. But I would like to make it through without having a complete breakdown myself, if possible.

 

[mirandapresley]

Welcome. You also might try the section in here called Parents of Kids with ibd. I am going to tag Maya 142, Clash, my little penguin. I hope you get help soon.

Thank you!

 

[mirandapresley]

Sending prayers

Thank you ��

 

[ronroush7]

Welcome

 

[Maya142]

Your poor little guy. I'm so sorry things have been so tough.

Let me tag some more parents and see if other parents have ideas.

my little penguin, pdx, Tesscorm, Farmwife, Mehita, Jmrogers4, Pilgrim

 

[Maya142]

I also wanted to add - you are not overreacting if something is wrong, but I would stay as calm as you can with your son, especially since it seems like he responds to any kind of stressor at all.

I would say something like "yes, we don't know what is causing your pain yet, but your doctors are going to figure out a way to help you." Acknowledge that he doesn't feel good now, but don't seem too worried. Tell him you're going to see another doctor to get an opinion, so you can get to the bottom of this. I'd be very matter of fact and not make it a big deal.

As for a different psychologist - some will do sessions on Saturdays and others will do Skype sessions or phone session. There are lots of options. I just think if the one you are seeing isn't helping your son, it might be worth finding someone else. In the short run, it will be difficult, but if it helps, then in the long run it will be invaluable.

Has he been taught relaxation techniques - breathing techniques, imagery, muscle relaxation? That kind of stuff can really help when a child is panicking. There are also apps that walk you through those techniques. I can give you names of some if you're interested.

It is likely some part of this is caused by anxiety, and the sooner you get that under control, the easier it will be to figure out what his GI symptoms are.

I would also try to keep him busy and keep things as normal as possible. Our rules were you don't miss school unless you're REALLY sick - fever, vomiting multiple times, or extreme pain. You can go to the nurse's office and rest if necessary, but you do have to go.

My girls loved school and never tried to get out of it, but a lot of kids who are dealing with chronic pain need to be pushed to go. That was one of the things we learned at the pain program - now my daughter will always get up and get ready and push herself to go. Once she is there, most of the time, she is happy she went. It keeps her distracted and keeps her mind off the pain.

Your son's issue is more complex because of the severe anxiety and depression - in our case, it was mostly pain that was the issue.

There is a great book called "Conquering Your Child's Chronic Pain" which you can get on Amazon. That teaches you how to help your child deal with chronic pain. I know he doesn't have a pain syndrome diagnosis yet, such as amplified pain or abdominal migraines or whatever, but it still has lots of useful information.

As for pain programs, most people do have to travel to get to one. Let me see if I can find you a list.

Finally, I would try and take some time for yourself to re-charge and relax. I know it is hard to find that time, but it can make all the difference in the world.

 

[Maya142]

Here is the list: http://americanpainsociety.org/uploads/get-involved/PediatricPainClinicList_Update_2.10.15.pdf

 

[my little penguin]

Talking back to OCD is a good book

We have the kid asign numbers to pain scale 1-10
We do not ask about pain
We wait for the kiddo to bring it up
We acknowledge the kiddo is on pain and the docs are trying to put the puzzle together
But don't have all the pieces yet
List positive things your and the docs are doing
We don't complain in front of the kiddo that the docs don't know
Cognitive behavioral theory with drugs can really help with OCD and anxiety

They have day programs which are outpatient therapy for kids with mental issues
In some states

Does he have a 504 or IEP ?
Mental health issues can be covered in an IEP where the school will provide therapy with a psychologist or social worker

Have your kiddo list postive things first
Ask what happened good today
Just one thing
Maybe two

Pain is hard
We use distraction
Relaxation
Visualization

Exercise helps pain and anxiety
Will he walk with you
Swim
Go to the YMCA ( they have financial aid and lots of programs )

Sleeping by listening to audiobooks sometimes helps distract pain

Is definitely tougb

 

[pdx]

Big hugs to you--your current situation is so hard. :ghug:

My daughter has always been very anxious, and she's also very sensitive to pain and other physical stimuli, so I have some idea about what you've been going through.

I think you're right to keep looking for a diagnosis. While many of your son's symptoms may well be related to his anxiety, his slow growth, weight loss, and vitamin deficiencies seem to point to some underlying medical condition. I'm glad you'll be seeing a new GI soon, and that the pill-cam is scheduled.

I'd also really recommend figuring out how to take care of yourself through all of this, even though it may seem impossible given all that's going on. For me, the most important thing is that I get enough sleep. You mentioned that your son has been sleeping in your room. My daughter also needed us at night a lot during the first 3 months after her diagnosis. (She was in a lot of pain, plus she was doing tube feedings and we needed to add formula and fix clogs in the tube.) We ended up putting a cot in her room, and my husband and I would trade off sleeping with her there, while the other slept in our bedroom.

Finally, just know that it will get better. Right now you're in the very worst of it, because you don't have a diagnosis for the gastro symptoms, and you're still figuring out what will work best to help your son's anxiety. Once you have those things figured out (and you will eventually!), things will get better. They really will.

 

[Optimistic]

Hi. You can vent here as much as you want! I am thinking of you and your son. I am so sorry and honesty that is a lot you are carrying. I don't blame you one bit for needing to vent.

Tell me a bit more about his therapist. What is he or she reporting? Do they have a recommendation for how you can assist them?

I hope the new dr can get to the bottom of his health issues. Yes, it is complicated by the depression and anxiety but there are enough signs pointing to a medical issue also. Hang in there. Update us as often as you can.

 

[ronroush7]

I agree. I hope the new doctor can get to the bottom of his health issues.

 

[produff26]

I'm sorry about your situation.

First suggestion is get your son to a specialist ASAP. Not sure where you live but its worth the travel and expense.

At the time of my diagnosis, I was a college basketball player. I went from dunking basketballs to having an ostomy and dealing with daily pain, abscesses, etc, etc. Nutritionists helped. Having a supportive family made the difference.

My family never treated me differently when I was sick. I wasnt coddled. It doesnt help. It rubbed off on me as I eventually was able to better deal with my issues, got back to school and played basketball again.

Your son might be too young to realize but his attitude creates stress. Stress has many effects on the body especially the immune system. Taking a pill is the easy part. Changing your mindset is alot more difficult but in the end could save his life (and yours).

 

[mirandapresley]

Here is the list: http://americanpainsociety.org/uploads/get-involved/PediatricPainClinicList_Update_2.10.15.pdf

Thank you for this. I am on it!

 

[mirandapresley]

I also wanted to add - you are not overreacting if something is wrong, but I would stay as calm as you can with your son, especially since it seems like he responds to any kind of stressor at all.

I would say something like "yes, we don't know what is causing your pain yet, but your doctors are going to figure out a way to help you." Acknowledge that he doesn't feel good now, but don't seem too worried. Tell him you're going to see another doctor to get an opinion, so you can get to the bottom of this. I'd be very matter of fact and not make it a big deal.

As for a different psychologist - some will do sessions on Saturdays and others will do Skype sessions or phone session. There are lots of options. I just think if the one you are seeing isn't helping your son, it might be worth finding someone else. In the short run, it will be difficult, but if it helps, then in the long run it will be invaluable.

Has he been taught relaxation techniques - breathing techniques, imagery, muscle relaxation? That kind of stuff can really help when a child is panicking. There are also apps that walk you through those techniques. I can give you names of some if you're interested.

It is likely some part of this is caused by anxiety, and the sooner you get that under control, the easier it will be to figure out what his GI symptoms are.

I would also try to keep him busy and keep things as normal as possible. Our rules were you don't miss school unless you're REALLY sick - fever, vomiting multiple times, or extreme pain. You can go to the nurse's office and rest if necessary, but you do have to go.

My girls loved school and never tried to get out of it, but a lot of kids who are dealing with chronic pain need to be pushed to go. That was one of the things we learned at the pain program - now my daughter will always get up and get ready and push herself to go. Once she is there, most of the time, she is happy she went. It keeps her distracted and keeps her mind off the pain.

Your son's issue is more complex because of the severe anxiety and depression - in our case, it was mostly pain that was the issue.

There is a great book called "Conquering Your Child's Chronic Pain" which you can get on Amazon. That teaches you how to help your child deal with chronic pain. I know he doesn't have a pain syndrome diagnosis yet, such as amplified pain or abdominal migraines or whatever, but it still has lots of useful information.

As for pain programs, most people do have to travel to get to one. Let me see if I can find you a list.

Finally, I would try and take some time for yourself to re-charge and relax. I know it is hard to find that time, but it can make all the difference in the world.

Thank you for all of this, I am going to look for the book this weekend.

I apologize for not responding to all of the wonderful support here until now, its been a difficult week for many reasons.

The good news is that he took the dummy pill today and the pill cam is scheduled for the 15th, barring any issue with the dummy pill.

And he sees the new GI on the 11th.

 

[mirandapresley]

Talking back to OCD is a good book

We have the kid asign numbers to pain scale 1-10
We do not ask about pain
We wait for the kiddo to bring it up
We acknowledge the kiddo is on pain and the docs are trying to put the puzzle together
But don't have all the pieces yet
List positive things your and the docs are doing
We don't complain in front of the kiddo that the docs don't know
Cognitive behavioral theory with drugs can really help with OCD and anxiety

They have day programs which are outpatient therapy for kids with mental issues
In some states

Does he have a 504 or IEP ?
Mental health issues can be covered in an IEP where the school will provide therapy with a psychologist or social worker

Have your kiddo list postive things first
Ask what happened good today
Just one thing
Maybe two

Pain is hard
We use distraction
Relaxation
Visualization

Exercise helps pain and anxiety
Will he walk with you
Swim
Go to the YMCA ( they have financial aid and lots of programs )

Sleeping by listening to audiobooks sometimes helps distract pain

Is definitely tougb

A lot of this we do, but I have done a lot of complaining about the Dr because he has been present when the Dr has condescendingly suggested to him that it is all in his head. I guess I have been doing it to reassure him that I believe him and the Dr is an idiot for not!

 

[Maya142]

I apologize for not responding to all of the wonderful support here until now, its been a difficult week for many reasons.

The good news is that he took the dummy pill today and the pill cam is scheduled for the 15th, barring any issue with the dummy pill.

And he sees the new GI on the 11th.

Don't worry about not responding! Make sure you are taking care of yourself too - whether it is taking time to watch a bad TV show or read a book or just relaxing.

There are also some great apps for anxiety and sleep. iSleepEasy is the Boston Children's recommended to us. There is also Breathe2Relax which has breathing exercises and my daughter likes.

Then there is one specifically for pain, which helps kids learn techniques to cope with it. It's called Healing Buddies Comfort Kit. I think that one isn't free, and it is a bit baby-ish according to my daughter (but she's 20) but she still likes it - says it uses a lot of skills she learned in the pain program.

She also likes to listen to audiobooks when she cannot fall asleep. She is a big Harry Potter fan, so that is her favorite. It distracts her from the pain, so she can fall asleep.

Really glad the pill cam is set up and you see the new GI soon. My daughter found the pillcam a pretty easy test - the pill is big, but she was able to swallow it no problems. She didn't have to do any prep except stop eating at midnight (some hospitals make you do a prep though).

Her major complaint was being hungry - she wasn't allowed to eat till lunchtime (no breakfast). But besides that, it was not too difficult or scary.

Good luck!

 

[mirandapresley]

Don't worry about not responding! Make sure you are taking care of yourself too - whether it is taking time to watch a bad TV show or read a book or just relaxing.

There are also some great apps for anxiety and sleep. iSleepEasy is the Boston Children's recommended to us. There is also Breathe2Relax which has breathing exercises and my daughter likes.

Then there is one specifically for pain, which helps kids learn techniques to cope with it. It's called Healing Buddies Comfort Kit. I think that one isn't free, and it is a bit baby-ish according to my daughter (but she's 20) but she still likes it - says it uses a lot of skills she learned in the pain program.

She also likes to listen to audiobooks when she cannot fall asleep. She is a big Harry Potter fan, so that is her favorite. It distracts her from the pain, so she can fall asleep.

Really glad the pill cam is set up and you see the new GI soon. My daughter found the pillcam a pretty easy test - the pill is big, but she was able to swallow it no problems. She didn't have to do any prep except stop eating at midnight (some hospitals make you do a prep though).

Her major complaint was being hungry - she wasn't allowed to eat till lunchtime (no breakfast). But besides that, it was not too difficult or scary.

Good luck!

He does listen to audiobooks at night sometimes and it helps. Right now he is up with terrible gas pains, I am guessing from the dummy pill. He has been nauseous ever since he took it- any kind of pill tends to make him nauseous, does better with liquids. Hopefully it will pass soon.

I will look into those apps, thank you. And bad TV shows on Netflix and two hours baths are my main escape right now, though usually its at one AM before I get the chance to indulge!

 

[mirandapresley]

So, just went for the x-ray to check on the patency capsule. It has been 34 hours and it is still very clearly sitting in his small intestine.

Since its Labor Day weekend, and his GI sucks anyway, I know we definitely wont hear from the Dr before Tuesday, and will probably be later than that.

I have no idea if we need a follow up x ray? Does this mean he isn't able to do the pill cam? And since it is still there, is that confirmation of a stricture or narrowing of the bowel that would at least finally prove that something is wrong?

Or is it a case of where some people just might not have big enough intestines and can't pass it? I'm going to be so bummed if he can't do the pill cam!

 

[Maya142]

The patency capsule will dissolve. So I don't think you need to worry about that.

I do wonder about a pillcam though - whether it's still an option. The MRE didn't show strictures, right?

I wonder if he just has a very slow gut. My daughter has Gastroparesis and when we did the pillcam, it spent roughly 4 hours sitting in her stomach. We didn't know she had Gastroparesis at that point, otherwise we would have had it placed endoscopically in her duodenum, during scopes. Her GI mentioned it was abnormal and apparently as gastric emptying test was ordered, but we weren't told so somehow it never got done till the next year, when she started having severe nausea and pain after meals. That's when she was diagnosed with Gastroparesis.

Anyway, that was a long way of saying I'm wondering is he has a motility problem. I know they use pillcams on little kids, so I can't imagine his intestines are too small for it to pass through, unless there is a stricture.

Honestly, I think this is something you have to ask your GI about (and the second opinion GI). And I would also ask about motility issues.

 

[mirandapresley]

The patency capsule will dissolve. So I don't think you need to worry about that.

I do wonder about a pillcam though - whether it's still an option. The MRE didn't show strictures, right?

I wonder if he just has a very slow gut. My daughter has Gastroparesis and when we did the pillcam, it spent roughly 4 hours sitting in her stomach. We didn't know she had Gastroparesis at that point, otherwise we would have had it placed endoscopically in her duodenum, during scopes. Her GI mentioned it was abnormal and apparently as gastric emptying test was ordered, but we weren't told so somehow it never got done till the next year, when she started having severe nausea and pain after meals. That's when she was diagnosed with Gastroparesis.

Anyway, that was a long way of saying I'm wondering is he has a motility problem. I know they use pillcams on little kids, so I can't imagine his intestines are too small for it to pass through, unless there is a stricture.

Honestly, I think this is something you have to ask your GI about (and the second opinion GI). And I would also ask about motility issues.

That is what I am wondering too, if he just doesn't have motility issues. Back in November when he had his first abdominal x ray, there were a bunch omeprazole capsules just sitting there, very visible... The GI said he was constipated and had us clean him out with Miralax, but now I am thinking gastroparesis seems more likely.

The MRE did not show any strictures, no.

I am not even going to bother asking this Dr for a gastric emptying test- but at his new GI appt Sept 11th I will.

 

[Maya142]

It does sound like a motility issue. The gastric emptying test is not too bad - long and boring, but that's really it. He will have to eat eggs and toast with a radioactive tracer mixed in. My daughter was VERY worried she would be unable to eat the meal or she'd throw up, but she was fine.

After that, they take pictures at intervals for 4 hours. Our hospital had a TV set up and she got to pick the movies.

It is a relatively simple test. I hope the new GI will order it. If he does have Gastroparesis, there are motility medications and diet changes that can make a BIG difference.

Constipation is also common with Gastroparesis...my daughter has had to take Miralax daily for several years.

 

[my little penguin]

Second the gastroparesis (Gp)
Ds has Gp as well
Constipation and trouble with nausea and eating
He drinks half his calories with neocate jr and limits solid food to low fiber low fat
Plus Gp meds

He has had two pill cams but both were placed during scopes

He has had gummy vitamins seen sitting in his GI tract more than once

Good luck with the new GI