What do you do? Overwhelmed/vent

[dancer67]

For those of you who have medical issues yourself. How do you handle it when your own children have medical issues?

 

I am ready to pull my hair out. My oldest was having upper abdominal pain. She said it started in the summer, and everytime she ate her stomach would hurt for an hour or so. No diarrhea/constipation issues. Then about a month ago she had stomach pain that woke her up and she vomited, and she was sick. Ended up with ear infection, but then her upper abdominal pain stayed and didn't go away. She had all kinds of bloodwork and that was fine. Upper GI/Lower GI series and that was normal. She had an endoscopy and THAT was normal.(No H. Pylori nor Celiac) And was DX with functional dyspepsia. Before her Endoscopy, the GI dr. told her to up her Prilosec to 2X a day. Then she started feeling just about 100% better. Since he didn't find anything on her endoscopy, he told her to drop the Prilosec to 1X a day for two weeks, then stop. Well, she dropped down to the one Prilosec a day and a couple of days ago she was complaining her stomach hurt again. And now she is sick, just like the last time. Only she is not vomiting. She has body aches, fever of 100.1, throat hurts, and her stomach hurts worse now more then ever.

We tried eliminating Gluten. That didn't help.

The pediatrician is meeting us at 1:00 because this is my child who NEVER get sick. In the past month, she had that stomach pain, followed by an ear infection at same time. Then a week later had a UTI.(Something she has NEVER had), now she is sick again.

The GI Dr. said that he does not like long term PPI treatment, so he would put her on Amitryptiline if her stomach started hurting again. My youngest daughter has functional dyspepsia as well and her pedi GI has had her on Zantac 150 AND Protonix for about 2 years now and she is fine. I am a little irritated that GI Dr. took her off the Prilosec when she felt much better. But I guess his reasoning makes sense, I guess.

I have some medical issues myself. And I am worried about my daughter. On top of all this, my youngest(14) has ovarian cysts and she has been fine since being on BC pills,but they seem to "poop out" after a few months. She will start bleeding on week 3, and bleed through her placebo pills. So now she needs to see GYN.

 

 

I am tired. Tired of worrying. How do all of you do it with kids who have medical issues? Especially for your kids that have something going on, and you don't know what it is? Or, you have been told what it is and it just doesn't sit right with you?

 

My oldest is on BC pills as well. I need to find out when she was switched. Maybe that would have something to do with GI issues. I don't know. She has not been tested for food allergies. But, it still wouldn't explain why she legit gets sick with a fever twice in one month. She hasn't been sick in like 5 years.

 

I need some support and encouragement. Or advice. I don't like seeing what is going on with my oldest. I worry about her, and my youngest. Plus, I have my own medical issues. Tired of living my life at Dr's.

 

Thanks for letting me vent.

[Twigs]

:grouphug: :grouphug: :grouphug:

[Guest inoubliable]

No advice, but :grouphug: :grouphug: :grouphug:

[jrn]

:grouphug: :grouphug: :grouphug: :grouphug: :grouphug:

[amo_mea_filiis.]

Things seem to pile up for us at all the wrong times.

 

October was absolutely insane! I had a massive double ear infection, ds went to the center for autism research, dd's X-ray showed 2 small curves in the spine, both had an asthma flare, my wrists got really bad, etc.

 

I personally prioritize. I have been searching for a diagnosis for ds for almost 8 years now. He tends to have the bulk of the medical appts. However, when something acute pops up, like my ear infection, i back off the craziness for a while. When the acute settles, like dd's major allergic reaction, or asthma attack, i go back to the regular stuff.

 

I have had tendonitis in my wrists since August. It has only recently gotten very bad. I grabbed 2 wrist braces and went on for a few more days. It got to be too much, so i gave in and have an appt with an occupational therapist tomorrow.

 

I found a few neurologists that may be able to get to the bottom of ds's problems, but some of it is contingent upon me winning dd's years old disability case, so while i am in contact with the Drs for ds, i spend more time on dd's stuff.

 

I dont have too much advice, except to remember what Dory (from finding Nemo) says... Just keep swimming. Take it one day at a time and the most acute problem comes first.

[dbmamaz]

Yeah, nothing but sympathy.

 

I have a knee injury which wont get better and i'm gaining weight and depressed because I cant walk. I have a lot of food allergies which often leave me with fatigue, and i'm cooking all the time.

 

My youngest is pretty healthy except he also has food allergies. He often has rash on his face and bags under his eyes and it worries me.

 

My middle one is on three meds for bipolar, he has tics, and bad intestinal reactions to gluten and sometimes to rice. He has some issues with his legs sometimes?

 

My oldest has fibromyalgia and was hospitalized for a suicide attempt last weekend. She complains that I am miserable and i make the house miserable and thats why she's miserable . . . um, yeah, its not really so easy to be cheerful with all this going on . . . not to mention the divorce from her father which included a protective order, and dh randomly decided to leave 7 years ago (but came back) . . .

 

i just keep going. Keep doing what has to be done, dream about a day when the kids will be gone, and really appreciate the heck out of the good days when they come.

 

hang in there

[ErinE]

:hugs: it must be so rough for you and your children to deal with these problems.

 

For the GI issues, I had something similar a few years ago. I did have an infection which caused the gastritis, but the problems didn't clear up after two rounds of treatment. My doctor put me on Prilosec, but recommended I try an elimination diet to pinpoint what was causing the irritation if I didn't want to be on medication for the rest of my life. It really helped calm my stomach and now I'm vigilant about the foods I consume and return to a simple diet whenever symptoms flair up.

[Caroline]

I am not a doctor, nor do I claim any medical expertise. Has her gallbladder been checked?

[bettyandbob]

:grouphug:

 

Sometimes the only thing you can do is do what you can to control your own anxiety. You probably cannot control how many doctor appointments you have, getting the referals you need, and not knowing in general. Those things are not going to change and it isn't helping to just let worry and anxiety overtake you.

 

So, what can you do to control your anxiety? If anxiety is a problem for which you are in treatment be absolutely vigilant about maintaining your treatment. Maintain your own health. Eat a superior diet : all those trips to the doctor might short change cooking time, but a steady diet of fast food will have negative effects on mental health (start taking healthy snacks like apples and baby carrots with you in the car, so that if you are out a long time at appointments you are not tempted to hit Burger King) . Avoid diet sodas if you need to (diet sodas send my own anxiety through the roof, so I drink green tea or seltzer) Get some exercise (heavy exercise greatly decreases my own anxiety). Get regular sleep (you may need to push the exercise first so you can relax enough to sleep). Practice meditation if you normally do that or keep up a hobby that relaxes you even if you are afraid it takes time away from doing something when maybe you don't know what the doing something should be. Be vigilant about doing what you can to take control of your own anxiety.

 

You need to be vigilant about taking care of yourself because you have to be as healthy as possible to care for your child.

 

10 years ago I had the worst year of my life dealing with serious medical crises in each of my dc. The problems were completely different for each kid so the list of specialist I had in my contacts was scary long and I was averaging 4 days a week at some doctors office for those 12 months. I was a wreck and I should have cared for myself better. I am living with some permanent health problems because I didn't take care of myself during that period.

 

At the end of this week my youngest is having his second surgery in 2 months. There's a lot more stuff to do for him after that coming up. But I know I've got to get some exercise, sleep and ignore the chocolate in my kitchen or I will be a basket case and make myself sicker.

 

Anyway, the main thing is focus on what you can control and what you can actually do. No focusing on "what ifs" or "possibilities". Focus on the concrete now.

 

:grouphug:

[dancer67]

Thank you so much ladies for all the encouragement and advice. I love the Keep on Swimming and focusing on what I can do now part. Yes, I have SEVERE health anxiety myself so I catastrophize a lot.

We just saw the pediatrician and he does not know why my daughter has a 102 fever(my 20 yo), for the second time this month.Flu, Mono, ears, throat, urine all negative. No sinus infection. He gave me a lab slip to have all of her Immune levels tested.

Her gallbaldder is fine. It was tested on ultrasound as well as endoscopy.

She feels so lousy. Everything hurts, she has a fever and can't sleep. She is hot then cold. Her stomach hurts again, so I need to call GI Dr. tomorrow.

Pedi thinks that since she works with kids(she teaches dance, plus dances herself), works as a hairdresser, and goes to college, who knows what she could have picked up.

But she did this last year and wasn't sick once.

This has been twice this month, and really 3 if you count her UTI. Which she has never had.

 

 

 

Anyway, the main thing is focus on what you can control and what you can actually do. No focusing on "what ifs" or "possibilities". Focus on the concrete now.

 

 

My husband tell me this ALL THE TIME. But I can't stop thinking the worse. Even though Pedi is thinking it is just bad luck and it is probably a virus, I don't believe anything until I have a concrete answer. I was told both my girls JUST had acid reflux. And we went all the way down the line to both of them having endoscopies done.

 

Tomorrow I will take her in for bloodwork. Most of the tests take a week to come back. She is going to miss so much again by being sick. And I have to get bloodwork done myself at some point to check on my iron, and regular bloodwork from my primary that she does every year.

 

I just feel so overwhelmed. I worry all.the.time.

 

I just wish he had found something difinitive today(mono, strep) something so I at least knew what was going on. Now I am going to worry every minute until she is better and blood tests come back not indicating anything serious.

[dancer67]

Yeah, nothing but sympathy.

 

I have a knee injury which wont get better and i'm gaining weight and depressed because I cant walk. I have a lot of food allergies which often leave me with fatigue, and i'm cooking all the time.

 

My youngest is pretty healthy except he also has food allergies. He often has rash on his face and bags under his eyes and it worries me.

 

My middle one is on three meds for bipolar, he has tics, and bad intestinal reactions to gluten and sometimes to rice. He has some issues with his legs sometimes?

 

My oldest has fibromyalgia and was hospitalized for a suicide attempt last weekend. She complains that I am miserable and i make the house miserable and thats why she's miserable . . . um, yeah, its not really so easy to be cheerful with all this going on . . . not to mention the divorce from her father which included a protective order, and dh randomly decided to leave 7 years ago (but came back) . . .

 

i just keep going. Keep doing what has to be done, dream about a day when the kids will be gone, and really appreciate the heck out of the good days when they come.

 

hang in there

 

 

:grouphug:

[Tiramisu]

There are issues with long term use Prilosec and those types of meds because you don't absorb calcium, magnesium, etc., as well. However, if there's any irritation in the stomach, which should have showed with the endoscopy biopsy, I've heard you need to be on them for four months for healing.

 

You could try a tablespoon of apple cider vinegar in water to see if that helps.

 

I really sympathize. It seems we have the long term issues and then every week something new comes up. I'm very burned out.

 

I hope you find an answer to your dd's discomfort soon.

[Meriwether]

:grouphug: :grouphug: