How do you cope?

[cobbiemommy]

How do other parents cope? I am just wearing down after fighting this fight for so long.

 

DS, 14, has been sick since age 4 (although we did not know it). He has been diagnosed since 2010 with Pandas, then Lyme, then Pandas, Borrelia (Lyme), Bartonella, and Mycoplasma. We just started IV abx a month ago; we had to stop for a week because of neutrophil and red blood cell irregularities. His energy level went way down after one day of missed IV antibiotics.

 

DD, 16, was scratched by a feral cat right before she went to camp at the Lake of the Ozarks in 2011. She came home with a Bartonella like rash at the sight of the cat scratch Lake of the Ozarks is endemic for Borrelia in Missouri. She will not comply with taking her antibiotics. She has gained 50 pounds and has a HORRIBLE attitude about everything. She doesn't seem to accept that her brother is really that sick and that she also needs to take her meds. She was recently diagnosed with a hormone imbalance causing horrible periods (the worst of the worst) and is now taking a hormone to try to correct the imbalance.

 

Although my son is probably the sickest and has been the worst emotionally in the past, my daughter is the source of much drama now.

 

How do you cope with a child with memory and processing as well as fatigue issues? How do you deal with a young lady that won't take her medication and won't acknowledge that she needs it? How do you deal with a teenager that resents the other's illness? What activities can a teenager do with a PICC line in their arm? He has a ten pound weight restriction and all contact sports are out.

 

 

[Mayzoo]

How do other parents cope? I am just wearing down after fighting this fight for so long.

 

DS, 14, has been sick since age 4 (although we did not know it). He has been diagnosed since 2010 with Pandas, then Lyme, then Pandas, Borrelia (Lyme), Bartonella, and Mycoplasma. We just started IV abx a month ago; we had to stop for a week because of neutrophil and red blood cell irregularities. His energy level went way down after one day of missed IV antibiotics.

 

DD, 16, was scratched by a feral cat right before she went to camp at the Lake of the Ozarks in 2011. She came home with a Bartonella like rash at the sight of the cat scratch Lake of the Ozarks is endemic for Borrelia in Missouri. She will not comply with taking her antibiotics. She has gained 50 pounds and has a HORRIBLE attitude about everything. She doesn't seem to accept that her brother is really that sick and that she also needs to take her meds. She was recently diagnosed with a hormone imbalance causing horrible periods (the worst of the worst) and is now taking a hormone to try to correct the imbalance.

 

Although my son is probably the sickest and has been the worst emotionally in the past, my daughter is the source of much drama now.

 

How do you cope with a child with memory and processing as well as fatigue issues? How do you deal with a young lady that won't take her medication and won't acknowledge that she needs it? How do you deal with a teenager that resents the other's illness? What activities can a teenager do with a PICC line in their arm? He has a ten pound weight restriction and all contact sports are out.

 

I can only answer one or two questions. I only have one kiddo, and she has been getting a new dx almost yearly since she was 2. She is also restricted on sports she can do. She is allowed to swim so we put up a pool every year for her to swim, we try to go to the nearest swim park, and we go to the public wave pool. We just bought a small boat so we can fish and swim in one of the local lakes. We also do outdoor activities such as croquet, Frisbee, and she is "helping" me train one of our dogs.

 

You cannot easily force a teenager to take her meds. Has she talked to the doc, a nurse or another person who has these conditions who can convince her of the importance of taking her meds? Can she google her conditions on her own and read up on them so she can feel like she is making an informed decision (hopefully to take the meds!)? Can she get a pen pal, maybe even from here, that could help her relate to how much it stinks to have to take meds, but also help her realize it is not optional?

 

I cope by coming here, going to another forum I visit, talking to my hubby about all this, talking to a good friend of mine, taking walks around our land, and fitting in pleasure reading when I can. I also spend a lot of time reminding myself of how far my kiddo has come in her life rather than focusing only on her current struggles. She has conquered several problems and overcome several serious issues. Valerian and Lemon Balm are also key to my coping.

 

Good luck and I hope it gets better soon for you.

[EmilyK]

My kids are much younger - 7 & 8 but it's definitely a challenge. 4 of us have been very sick with mycoplasma. Fine motor skills and balance of 3 of us are affected not to mention the respiratory and throat stuff. We're fatigued and I can say my processing speed is abysmal lately. I'm a bit desperate to get things resolved before the teen years! I'm very direct with them - Mommy's feeling very sick today and I need your help to listen. Your brother is really not feeling well and needs some extra space. We still have our blow ups though. I apply liberal bribery for the taking of meds and they are still young enough for it to work. Plus they have models of mom and dad taking their meds. I just bought my oldest a pillminder and he helped me divvy out the meds in the compartments. He's excited to use it for now. Probably not much use to your age group but I understand the exhaustion!

[jtp]

I'm probably coping as well as you or worse. My son is 13 with PANS at the moment he's doing well.My daughter is 17 and is most likely PANS she's been suffering with anxiety, depression,eating disorder, mild OCD, school refusal(actually quit school got her GED), cutting and switching therapists since age 13.Tried lost of psych meds. She doesn't acknowledge that my son is sick and said that PANS isn't real. Won't get a job or go back to school, complains anxiety and depression is too bad. She thinks she's bipolar. Won't eat properly, won't take supplements. She refuses to discuss the possibility of having PANS.

 

Mycoplasma seems to be the main trigger in the family. We've all been exposed and treated for it. When I get stressed out the Myco seems to return to active status for me, and them I'm overun with fatigue. We're still trying to figure this out. I know that right now my daughter's titers are in the high range because I forced her to be tested. She refuses ABX or any meds at this time.

 

My energy level is well below normal. Besides having these two issues I have an 83 year old mother who is in need of help as well. I would love to exercise again and maybe just smile once in a while, but it has been a tough 4 years. I'm still waiting for that silver lining.

 

So I hear your pain and I cope by taking one day at time, good luck.

[LNN]

My son (10), who has been the sicker of the two kids, used to complain about all the pills. Twice, we've had to stop all supps for a week each time to do urine tests. He felt so bad at the end of the week that he now considers the supps as important as air. He now gets that he needs them. So when he complains (and I totally understand how it sucks for a kid to have to take so many pills), I tell him what each one is for, tell him which ones aren't negotiable and then let him decide if he wants so skip any of the remaining ones. Usually, he'll decide to skip one or two and then after all the others are taken, he'll shrug and say "what's two more" and pop those two in as well. For him, he just needs to feel like he has a small vote.

 

My daughter, (8) maybe because she feels less sick and because the pills don't have a dramatic impact (she has a thyroid issue causing fatigue but no supps have resolved it thus far and labs don't justify thyroid meds at this point) - she balks more. If I give her a choice, she won't take any of them. So the approach I use with my son won;t work for her. Instead, I tell her that her health doesn't only effect her. It effects everyone else in the house too. That it may be her body, but it's our family and we get a vote too. When she moves out, she can make different choices. But as long as she's in "my house" (yes, I sense my mother laughing at that) she needs to play her part in making the family function. Sometimes, I'll let her negotiate away a pill - like a vitamin D where missing one dose won't make a huge difference. That at least gives her small comfort. Sometimes, I'll give her a window - ok, you don't have to take them right now, but they need to be in your body before lunch.

 

It is far easier with younger ones. A 16 yo with a large weight gain and an even larger chip on her shoulder has got to be maddening. But if she doesn't take her meds, the family suffers the consequences, not just her alone. So that can't be an option. Instead, can you set up a set of consequences that impact her alone? Like, no meds = no internet/phone/ or some other thing she holds dear? Frame it not as a punishment but as a choice. She has a choice to not take abx but there's a natural consequence to that decision - a consequence that hurts. Then let her suffer that consequence. She's bound to test you to see if you mean it. Follow through. It can't be you pushing. It has to be her choosing.

 

In the movie Silver Linings Playbook, Bradley Cooper refuses to take his meds for bipolar because he hates the way they make him feel. His parents plead but he won't do it. At one point, he goes into a manic episode that threatens to put him back in the psych hospital. The imminent punishment makes him compliant. Later, he falls in love with Jennifer Lawrence and doesn't want to screw it up. He realizes that he needs the meds if he's going to have the life he wants. I don't think he ever comes to love the fact that he needs them but he accepts them as a necessary evil. Somehow, your daughter has to be brought around to understanding that.

 

There's a really good book about OCD called Talking Back to OCD by John March. He makes the point that the parent can't fight the OCD. Only the teen can do that. The parent's job is to be the coach. But the teen has to own the problem and the treatment. You may want to get the book and use it's message to help you find a similar approach to the med problem. It really helped me shift my perspective.

[pr40]

this may not be what you are looking for:

how we cope? no-how, some-how, who-knows.

we scaled back. no far trips, no eating in restaurants, having friends who will tolerate us over, having absolutely no expectations,

I see them as disabled in many, many ways.

taking one day at a time, no, one hour at the time.

I don't know about you, but no one is willing to help us -- actually, only people on this forum.

either we can't explain what is going on in terms they can understand or our family members are just people who don't care much, but we got nothing even when we directly asked for help.

so, yes, venting and ranting. wife started going to church

then, we are really really really happy when they are fine