Daughter Sinking Into Dangerous Depression Due To Illness

[JuneFlower]

I have taken all the necessary precautions and talked to all the support people. But, I need support here too. My daughter has expressed very bad feelings all related to being "a sick person now, my life is ruined, everything I worked for is gone…." I am leaving out the scary parts because this is an online community. But really how do you all deal with Chronic Illness and everything it takes away?

I haven't given up on finding a treatment for her. We still are going to Dr Stewart and having an Addisons test. But she is 13 and can only see today. She has no optimism. I know this is common in chronic illness. But just looking for tips. As I said we already have professional help in place. Thanks in advance

June

[Joann]

Not sure what she is able to do physically at this time. You said she is getting professional help and that is good. A good counselor/therapist can help. Just having someone to talk to can help, especially someone who is not judging. Is she able to sit up or go anywhere? I ask because just getting your mind off it can help. Having friends over to watch a movie, or if she is able to go to a movie? Something that she can still do, a craft?

An example I went to my daughters softball games this past weekend. Now I wasn't able to drive there, or carry any of the things or even set up my own chair. But I was able to watch her games and talk to the other people and it felt great. The people around me have no idea how incredibly debilatated I am, (some probably think I am lazy and let me husband do everything) but just being around other people made me feel so good. Yes, sometimes I would get upset about the things I wasn't able to do there (at one point I got really upset because it was an indoor tournament and we thought for a moment our only viewing of her field was upstairs which would mean I would not be able to see it since I cannot go up more than two steps but they were wrong). The point is find something she is still able to do. It ***** and we are stuck with it 24/7 if it is the only thing you are thinking about it will drive you crazy. It doesn't mean you are giving up and not fighting this but you are giving yourself a break from that.

[looneymom]

How soon is your appointment to see Dr. Stewart? A chronic illness can be very stressful. My son has recently had a neurotransmitter testing. This can be very helpful to a doctor when trying to get an idea of what is going on. Hopefully the doctor you will be seeing will run this type of testing. Some doctors will not mess with it but I would encourage you to find a doctor that will dig. My son is 13 and takes Zoloft. Zoloft helps the body recycle and keep what it is making of Serotinon. Your body needs serotinon for happy moods. Does your daughter like dark chocolate? Dark chocolate helps the body make serotinon. There are other foods also but when my son is having a really rough day, I will give him a small portion of dark chocolate. However, I don't do this very often because it can lower his blood pressure. However, the results are amazing within 30 minutes. If you try this make sure it is a good quality of dark chocolate.

My son has been sick for 4 years and has been homebound since the second semester of 4th grade. He is currently in the 7th grade. There have been some very dark days and the last neurologist suggested that my son should see a therapist. My son laughed at the idea but not in the doctor's office. If my son was crying everyday and saying that he wanted to die everyday, then I would be getting him this help.

Besides the Zoloft, my son takes another medication called Intuniv. This medication was orginally perscribed to help with his vocl tics and help control them very well. However, this medication also helps regulate serotinon and dopamine levels. High dopamine levels can cause problems with depression. The testing my son had done is under the Neurotransmitter testing post. All I can say is that my son had major problems with dopamine and serotinon levels the last several years and since starting these other two medications things have improved.

In January, our Texas doctor started our son a Methyal B-12 shot and this seems to help with fatigue and alertness. Hope some of this information helps. POTS is a real rollar coaster ride. Anxiety and depression come with it because things are just not normal. My son has not given up hope. He knows that Dad and Mom are doing their best to get him the medical care he needs. We stay as positive as we can even through the bad days.

A walk in the morning, when the sun is out, and temperature is no higher than 75 degrees also helps. Pet Therapy has also helped. We have a lap cat that we have adopted and loves petting. Rachel

[Christy_D]

When my son first got sick, all the doctors were telling me it was a mental issue. So, while still searching for a doctor to help, I took him to a psychologist. Not only did she help him mentally handle his illness, she was the one who researched his symptoms, telling us it wasn't a mental issue but was a physical issue. She thought it was some type of orthostatic intolerance and told us to see a cardiologist. So, she was very helpful in more ways than one. My son, my nature, is a very, very laid back kid. He really never was depressed, except for when he was told it was a mental issue or school avoidance. A psychologist can put things in perspective for them and give them coping mechanisms.

[Katybug]

It is hard to deal with chronic illness even as an adult so I can't imagine it as an adolescent. I think some of the moms on here are better equipped to give you advice on this one but I do have one thought. Didn't you say in another post that you are currently weaning her off of some drugs? I remember thinking that they were pretty major prescriptions for a young girl. Could this have something to do with the overwhelming feelings she's having right now? Some of these drugs have to be weaned off of so slowly for some people. Just a thought to talk to the docs about. ...

[Joann]

I agree with Looneymom about the sun and the pet therapy. Anytime I go outside, even when I have to force myself out there helps my mood and seriously who can resist a pet. A dog or cat may make you smile and laugh but if not that it will at least snuggle with you and make you feel loved.

[Christy_D]

Also, have you looked at dynakids.org. It is a very good website for kids with dysautonomia. It has a lot of good print outs, resources and a forum for the kids to talk to one another.

[gjensen]

Have you watched the POTS video on here? It features a nice young lady that has endured the same. Possibly examples like that could help. The emphasis is honest, but positive.

You are right, it is hard for a young person to see the future. But so many young people recover and get better. I am sorry that she feels that way.

I am learning to cope, but I still have my days. I am in a much different place, so I do not know how my experiences could help.

I look forward to my boys getting home everyday. I am trying to keep my hobbies going, thinking smaller, but trying. I need to emphasize the positives.

It is easy to get caught up in what I have lost, but it is not about me. Then there is so much that I have not lost that matters more than what I did. I find myself appreciating little things more than before.

Today is beautiful. I am going to waddle out to the birds, let them out, and lean back in a lawn chair. I am going to enjoy the sun, listen to the breeze, smell the fresh air, see the blue skies, and soak it all in.

This new situation of mine has taught me how much I took for granted, and what I was missing out on. I appreciate other people's struggles more, and I realize how good I had it.

This is going to sound bizarre, but this may have been good for me. I was so caught up in the most trivial things. This has and is humbling me. I needed it.

It seams to work that way sometimes. The best things that happen to us is often the worst things. Then the worst things is often the best things.

How may people have had their lives ruined by winning the lottery? Then how many people are better for having survived a storm?

Out of nothing, nothing comes.

What I see in this crowd is unique. I see a lot of brave and tough people. This is a very resilient crowd that has not conceded defeat, but gets up and plugs away every day. Many people cannot relate to the struggles that we have, but we can appreciate the struggles that they have. And we recognize the trivial things that people tend to get caught up in.

Most of all I see a supporting crowd that is eager to help someone else. You do not find that on this level in the general population. I find myself genuinely wishing that I could take this stuff away for people even if it meant taken it on myself. Before I was going too fast to notice and awfully self absorbed.

This may be irrelevant to many, but this is what I see. These are the things that I am trying to appreciate. I can't see how this can help your situation. I am only sharing my perspective. The things that I am finding in this that makes this more bearable, because this is a big pill to swallow.

[galatea]

The thing that has helped me cope best emotionally is something called Mindfulness. I think it was invented at first for people with chronic pain, but now it’s become very popular to help with depression and chronic illness. It teaches you to concentrate on the present and makes you enjoy and appreciate everyday things as well as to accept difficult situations in a non-judgmental way. I did an 8 week course, but I think you can buy the book and tapes.

[lejones1]

First of all, I'm so sorry for what your daughter and family are going through. This has been incredibly difficult to deal with in my 20s, and I can't imagine the strength it takes to get through it as a child. You're a wonderful mother for seeking out ways to help and support her.

I guess the first thing I'd say is...try not to be too hard on her about her reaction to this. It doesn't sound like you are at all, but I guess I mean..I think from the outside it's easy to say "Statistically you're likely to get better! You'll feel better if you're optimistic!", but when you're going through it it's not quite that simple. I was pretty positive when I first got sick, but after I got a diagnosis and it became clear that I'd probably always have POTS, and got sicker to the point I was mostly bedridden, I had 4 months where I was just really scared and down. My family and boyfriend kept telling me I was depressed and needed to be positive, and while I know they meant well, I actually just ended up being really upset with myself for not coping well. As I got well enough to leave the house, I started seeing a therapist who specializes in clients with health issues. When I explained to her what I'd been feeling, she told me "I'm not really sure that you're depressed - you've been having a pretty normal, reasonable reaction to a horrible situation" and I realized that she was probably right. Which certainly isn't to say that your daughter should feel like her life is over, because it's absolutely not. But coming to terms with all of this takes time. We all have assumptions about what our futures will be, and getting diagnosed with a chronic illness...you suddenly have to face that your future may not be at all what you expected. The loss of your old life and, even more so, the possibility of your expected future are very difficult to cope with, and I would imagine that's even harder for someone who's so young. I'm not sure how long your daughter has been ill, but if she's still in the relatively early stages of diagnosis, still searching for a cause and treatments that help, then I would say probably just give her time. If you're gotten professional help involved, it sounds like you're doing everything right. Additionally, make sure she feels she can talk openly with you about what upsets her and scares her.

Do you know any else with POTS who she could talk to, or if you could find any other young patients through a doctor? Or do you have any family friends who have dealt with chronic illness? There certain aspects of this experience that can be imagined by someone who hasn't been through it that can but I'm not sure if they can fully understood. For me, it was really helpful to talk to other people who had been through similar things - to know that I wasn't alone and realize that what I was feeling was normal. I think that's probably why so many of us come on here!

Try to be strong and positive and resilient to set an example to your daughter. Seek out the support you need as a caretaker - from family, friends, or even a therapist for yourself - so you can be there for her as fully as possible.

A few people above mention trying to find smaller things that make her happy and I definitely agree with that - chocolate, sunlight, a visit from a friend, a funny movie. Depending on how sick she is your options may be more limited but you can always find something - when I couldn't watch movies I listened to books on tape. Actually one of the best things I've learned since being sick is learning to find joy in the smaller things - a beautiful day, a laugh with a friend, a delicious meal, etc. Help her learn to appreciate the things in her life that do make her happy (without being like "You have so much to be thankful for - you could be starving in a 3rd world country!" - I've heard that one and it's not all that comforting) Have you ever heard of gratitude journals - writing down a few things you're thankful for at the end of each day? Or you could just talk through them with her.

Probably the thing that has helped me most is trying to reframe the whole situation as a positive opportunity rather than a loss. Sometimes this requires a bit of creative thinking, and it's not something that can be forced, I think she'll have to get to the point where she's ready - but it's definitely a perspective you could help introduce her to. What has she learned from this? Has it strengthened any of her relationships? Maybe she'll end up in with an interest in the medical field, or research, or social work. For me, this has been an opportunity to spend lots of time with my family, learn the importance of health and taking care of my body, become much more appreciate of small things, and also less bothered by little things. More than anything, I'm probably a more mature person from it - more in touch with my emotions and more empathetic and understanding of others. And I definitely see that in others I know who have struggled with chronic illness. Although my life is objectively worse than it was before I got sick as far as the "things" I have, I'm actually a happier person. This doesn't mean that I'm glad I have POTS, and there are definitely days when I get really angry at my body, or jealous when I see my friends' normal 24-year-old lives. But if I focus on what good has come from this rather than what's been taken away, even 50% of the time, it makes it much more bearable. It might be some form of denial....but it works!

[JuneFlower]

Thank you all for your heartfelt words. I will be rereading them often.

She has been sick for 13 months and missed school that whole time.

She is in therapy and likes her therapist. But she hasn't discussed this with her at length. She is very shy.

She has a psychiatrist and she's tried biofeedback. We haven't done mindfulness. I will look into it.

We gave her a kitten. (She's an animal lover) and her kitten has helped her mood and ours!

Sometimes a friend will come over and it helps. She is always better at school. She was doing so well but got travelers diarrhea and is home again this week.

I didn't want to alarm anyone in my post because the situation is under control but she is talking about the worst case . So I've spoken with professionals today . If it happens again I'll have to take her to a hospital.

Thanks to you all.

June

I am checking out the kids website too. It would be great if she could chat with someone else.

[Katybug]

Mindfulness, while actually a very old concept, was modernized by an author named Jon Kabat-Zinn. He wrote a book (actually many) but the easiest to read is called "Where Ever You Go, There You Are." It is actually an easy read and has short (7-15 page) chapters that has a short mindfulmess exercise at the end of each chapter. The exercises are specifically designed to be things that people can incorporate into their everyday life...easy forms of meditation. For example, counting your steps or breaths when you walk from one place to another. If you lose count, you start back at 1. The goal is to not have to start back at 1 before reaching your destination, but being aware that it is ok to lose concentration and then bring your self back to your present actions. The book while not questionable in content, is written for adults, so it might be helpful for your daughter to share the book with you so you can practice the exercises together or she can ask questions where she's not sure. I read it in college with no problem, but the space between college and 13 is vast. He has another book called "Full Catastrophe Living" that might help you help her through this but I think it is probably a bit much for a 13 year old to read and take in.

[galatea]

I agree with Katybug, it would be great if you could do the Mindfulness together. It’s really important to share the same positive outlook as the caregiver, as in a way you go through the illness together. It’s important that you feel well emotionally too. It really changed my outlook on life for the better. One of the best things I learned was to lower my expectations of life while still seeing the positive, and to live day by day as much as possible. I hope that your daughter starts to feel better soon! It must be so terrible to be ill at that age.

[JuneFlower]

Thanks for the info on mindfulness.

galatea- I haven't given up on her actually getting better especially since we don't know a cause yet for her problems. I am not settling for lowering my expectations yet. But maybe I'll have to. I really hope not.

June

[HopeSprings]

I second what Christy said about connecting with others online. It's been a lifesaver for me and often the only thing that has helped me emotionally. June, I really feel for you as a mother. This illness has been so hard on me as an adult, I just can't imagine one of my children having to go through it. The fact that she has a mother who believes her, supporting her and trying so hard to find solutions is hugely important. Many of us have had a difficult time with family understanding how bad this can be which takes an additional toll on us. I wish you both the best.

[JuneFlower]

Naomi, I try to believe and I get that the POTS is real & the low BP. But she won't even try to go to school unless she's feels 100% perfect. She's afraid the teachers will criticize her if she doesn't participate fully. And she has a 504 which explains that many days she may just be sitting in the chair and that's it. She doesn't try. It's frustrating and now she may have to repeat 8 th grade.

June

[Christy_D]

June,

Has the school set you up with a homebound teacher to help keep her work up? Half way through my son's eighth grade year was when he stopped being able to attend school, and he wasn't diagnosed with POTS until the summer after 8th grade. He was forgiven by the school for a lot of his missed work. They sent a homebound teacher to our house for 5 hours per week. He continued on with homebound teachers and on line classes through his entire high school years. He ended up getting an IEP instead of the 504 plan his sophomore year. Make sure you get the school to provide you with everything that they are legally obligated to do.

Christy

[JuneFlower]

Christy- what is an IEP?

They won't give homebound tutoring until she is out ( i think ) 30 days in a row. She will miss 26 or something and go for a day or 2 then miss another 3 weeks. Last year they made an exception and got it. Maybe I should ask again. I can't see her graduating from middle school at this point and maybe she shouldn't'. She missed everything for the last 6 months. I don't want her to struggle for the next 4 years to catch up.

June

[Christy_D]

An IEP is an 'IndividualIzed Education Plan'. It is a step above the 504 plan. We didn't jump right into an IEP, we kept thinking he was going to return to school at some point, and sad to say it just never happened. They should be able to provide intermittent homebound at least. My son missed 30 days of school the first semester of 8th grade and we received homebound to help get him caught up. They really owe you 5 hours for every week she misses. If you google 504 plan, you will be able to find the rules they need to follow. Our school district bent over backwards to get my son his education, but when speaking to other parents with sick kids, most of their schools were less than helpful. Our school counselor and even homebound teacher made sure we got the services that were coming to us. Below is the link to the dynakids.org page that somewhat goes over education. I hope it helps, and maybe you can set up a meeting with the school counselor to re-go over your options if things are worse now.

http://www.dynainc.org/docs/educating_the_dysautonomia_student.pdf

[JuneFlower]

yeah thank you. I have seen that page on that website before. My school doesn't seem to think they need to provide anything unless she is out for a month continuously. I don't know about that.

But there is anxiety on her part as well. For example her migraine suddenly got better at 2:00pm today when she knew school was over and there was no chance I could bring her to school. It will be gone all weekend and back monday morning. But its hard, cause I can't tell when she is exaggerating or not. And I get migraines so I know how bad they are. She just won't go unless she feels 100%. And that just isn't going to happen a lot. I think we will look into the IEP right away. Sounds like she needs it.

June

[JuneFlower]

Ok so I read about the IEP and I'm confused. How is it different than a 504? They are already giving my daughter many accommodations. The only thing missing is the home tutoring that we just recently feel my be helpful.

June

[looneymom]

Hi June

My son is on an IEP. His catagory is Other Health Impairment. Even though he goes to school online, he still has modifications and someone will be coming to our house to administer state testing in the spring.

I know this must be terribly hard on your daughter but you don't want to lose a year of schooling if you can help it.. Talk to your school counselor or a special eduction director if the school district has one. It's tough when you begin to realize what you used to be able to do, does not come as easy as it once did. Your daughter is more than likely feeling really frustrated and wants to be a normal kid. It will take sometime for her to realize this may not happen right away.

My son was in the gifted program before all this illness came upon him. So My husband and I made education a priority because we did not want to see him lose it all. Tyler still maintains straight A's but it takes him longer to get his work done. My son realizes his educational need are different and he has come to terms with this but gets frustrated easily with a large work load.

Rachel

[JuneFlower]

Rachel-

yes we have been talking to the school almost every other day and they are very aware but they still took her out of all her advanced classes and she had to drop 2 classes. She still isn't doing practically any work. The work she does do is A material but its not enough to move forward. I don't think the school really knows what to do for her either.

June

[looneymom]

June

An IEP is a legal document that is signed by teachers, parents, and school administrators. If they do not hold up to their end of the deal, then it can be taken to court. It gives you more rights than a 504. I used to write these all the time before I quit my job as a special education teacher. The IEP will have goals, modifications and testing accomadations. It will also protect your daughters attendance. The school will have some forms for you and your doctor to fill out. They will need medical documention from your doctors. I would urge you to contact your school as quickly as possible.

Rachel

[looneymom]

If your school says this cannot be done, call your State Department of Education and ask to speak to someone in special education services or the Department that covers IEP's. Tell them what your situation is and you will get someone's attention. An IEP is Federal Law.

Rachel