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Chronic Illness & High School
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My ds 12 was recently diagnosed with gastroparesis. Which is a disorder in which the stomach takes too long to empty its contents. His delay is considered moderate right now. There is no cure and for the most part its just a matter of improving and easing his symptoms on a daily basis as this will be a life-long illness. He has nausea, severe pain, abdominal distention, early satiety and fatigue on a daily basis. He also has complications like severe chronic constipation, bacterial overgrowth, acid reflux and the new thing is weight loss and malnutrition. We are starting new meds and doing a major diet change.
Jake has always been homeschooled, so we’ve just worked around his symptoms, not even knowing what was wrong with him. Now that we have a label and see a little more of what his future holds, I am concerned. Next year we are to sit together to go over high school plans based on his future goals. Has anyone dealt with having a chronic illness and still doing high school level work? He is very self motivated, he gets up at 6 to do his independent studies, but we take many days off for Dr. apt, tests, flair-ups ect. While it’s not much of a problem now, I can see this becoming a major obstacle in high school, esp. with college-prep courses.
So, here is my BIG concern: What type of career can he have that will work around his symptoms? He has always wanted to go to college and while I know that goal can still be accomplished in other ways, reality says it will not be the classical college experience he was looking forward to. I would love to have a running list of good career options for him to consider that would allow him a way to provide for himself and his family. Work-from-Home jobs would probably be ideal. Many individuals with gastroparesis are forced to go on disability and I would love for him to not have to make that choice solely because he doesn’t have the right career. Does anyone know if there is a book or something that lists career options and the requirements needed for those jobs?
I would be grateful for any and all ideas and suggestions of how to handle high school and types of careers he can do. I have trouble thinking “outside-the-box”.
Blessings, Charlene
“There is nothing like a serious illness to blow down our fragile houses of sticks and straw. Standing amid the rubble of their lives and thoughts, people with serious illness undertake the task of building a new house, a new way of living…”- Anonymous
That is challenging! Have the determined the root cause of the gastroparesis? I know two who deal with it. For one the root was low thyroid function and vagus nerve damage from diabetes. The second we suspect is due to Lyme Disease damage. The first is gaining some help with thyroid medication and iodine/iodide. B12 was another piece of the puzzle for her.
Get Missingtheshire over here! She’s dealt with high school and illness – I think her girls are in college now.
Online teaching and tutoring is a big one now. Library technology (for an entire school district) would require some seminars (going to or teaching himself) but lots of work-from-home stuff too. Computer programming/IT stuff. Medical transcription. Some paralegal work can be done from home – drive to the office and get it, do it at home and bring it back. Language translation (medical/legal).
I’m sorry he’s going through this. I wish you all the best.
It is probably best if he kind find something he really enjoys doing for a career…. depending on his interests, it may be “fun” finding something he is interested in that he can do around his illness – but he will be more likely to be able to do it longer if he enjoys it….
Hello, I am so sorry to hear about this, at one time they thought my daughter had the same problem, but hers is a very, very severe IBS and fast motility which means she does not hold nutrients and it is hard for her to keep weight on. It means she has to be on a carefully controlled diet which means avoiding her triggers which of course are different for everyone and also has to have access to facilities close by at all times. It does have major repercussions on their life style and activity and it is also a very trying and embarrasing thing for them to deal with, so it is not only a difficult physical complaint but a very emotional one as well. Your son has a more serious illness though the inconveniences are very similar and it makes me very sad for you to have to go through this. We have been struggling with it since 2009 and she is still not at an ideal weight, but that is just the way it is. Homeschooling made it easier to manage, and we adapted outings and things for her benefit and at times did not travel at all. She is doing online classes at home right now, because a four year college would be too much for her to cope with, plus she is wanting to go into the equine field, which means her theory she can do online. We are getting ready to move back to England at the end of this year hopefully, and then she can attend day college if she wants to to get the practical equine courses and find a job. She os able now to keep her symptoms under some kind of control, and as long as their is a bathroom nearby she is ok. The diet improved her cramping pain but this is nowhere near as severe as what your son has. I can only advise you to make sure his emotional health stays on track because these bowel disorders cause humiliation and a lot of insecurities and that needs to be kept an eye on. As far as career, I am thinking training into something he could work at from home would be ideal, though I think the laws here state that for people with these complaints stores and offices etc have to cater to the person and cannot discriminate. Regarding doing high school work, well my daughter was in and out of hospital a lot, and there were days when her mind was all foggy and she was unwell…we added an extra couple of years and did not graduate her until she was 20 so that she did not feel pressured and had the same chance as everyone else to get her work done. We felt it better to graduate late, than have her miss so much work…she still accomplished everything and was an A/B student – but I think if we had kept to a traditional finish at 18 – she would not have been so successful. I think it is important to put the child before the tradions on this kind of thing, in the long run, finishing at 20 does not harm future prospects and actually allows doe a bit more maturity to kick in. So I would discuss it and pray on it, and then decide on perhaps going a year or two longer, that takes the pressure off the student and parent, and I know how much time the doctos and hospitals take, and that does not include those times they may have to be admitted – so I would seriously consider that. She has a twin sister and we graduated her later too, because the illness did impact the whole family and we wanted to keep them together..she has mild cerebral palsy, so the delay actually helped her too and allowed her time to do really well. If I can help in any other way, please ask..again I am sorry you have to face this, it is not an easy path. Blessings, Linda
I cannot believe this came up today. My niece was just diagnosed with this and I just found out a couple hours ago. She is 27, and she has had problems since she was 14. My sister worked full time and had to leave her daughter at home alone when she had to quit school. She used an online school for a while, but she never finished. I tried to help, but it just wasn’t the thing. I’m so glad you’re already homeschooling and your son doesn’t have to be alone like my niece did.
I don’t know anything about this illness, but I do have experience with strange health things. I just can’t believe the body just has to stay this way. I would like my niece to see the dr that helped my son through and over his Lyme Disease. He’s an MD plus Naturopath–hard to find. He’s amazing.
How can there not be a root cause? There must be something that can be done, even if it isn’t through traditional medicine. My niece came home from 2 weeks at the hospital today, and they basically said they can’t help her. I don’t know how you feel about alternative medicine, but since traditional medicine apparently gives up on people with this condition, that seems to be the next logical step.
About high school, I will say that you can learn from anything. Your son will be fine as long as he does his best. I would not expect it to be a bigger concern in high school than now. He’ll just keep working and doing what he can. Isn’t that what everyone does? I worry about my 8th grader with high school too, because of some problems she has; but all any of us can do is just what we can do, right?
About a career, there are so many things out there that are different. In fact, the more people I know, the more I think there aren’t many people with “regular” jobs any more. Your son might even write books about this condition and earn a living that way. The world is wide open, even for people who need it to be different.
Best of luck-and anything you can tell me about gastroparesis would be appreciated!
Angela
Thanks so much for all your responses. I’m encouraged by each of your thoughts. It really helps to hear from others who are dealing with obstacles and homeschooling.
@HiddenJewel: I wish we knew what the root cause might be. He has had a lot of tests done over the years, some with positive results and some negative but none that would be the cause of this. It’s been a long road (since infancy) to get to this diagnosis. He has started taking Erythromycin and that seems to be helping. Does treating the thyroid and Lyme disease take away the gastroparesis? Did you have to do diet and medications?
@crazy4boys & suzukimom: Those are really good suggestions. I definitely want him to pick something that he enjoys. I didn’t think about it until I read your responses but job dynamics are changing rapidly. Who knows what type of opportunities might be available in 6 years. Online classes were rare and expensive 6 years ago and your right, they are big thing right now. I’ll add these ideas to our job list.
@Angela: That’s so sad about your niece. I pray that she gets a good team of doctors and a good support system. I’ve been reading horror stories about how ER’s treat patients with GP. They label them as drug junkies! My Dh wants me to look for “natural” solutions as much as possible. Mostly because there isn’t that many medications to help and we don’t like the ones that are available. I don’t know that much about GP yet but I’m reading as much as I can.
Here is a website I’ve been reading to get a better idea of what we are dealing with: http://www.gpawarenessfund.com/id30.html@Linda: Because of the overlap in symptoms his Dr thought he had IBS but this last visit all the symptoms just came together and she sent us for more testing. IBS can be very severe; a lot of my family has it. I can appreciate what your daughter has had to go through. What kind of diet changes did you make that are working for her? Over the last year I’ve noticed my son is more self-conscious and doesn’t call me to help him like he did when he was younger. He recently had to go through a colon cleanse and luckily his Dad was able to be on hand all day to help. May I ask what you’ve done to keep your daughter’s spirits up? For the most part Jake is a very happy always smiling kinda kid but lately he’s started to ask me why can’t play like he wants to. He tried to play basketball with a friend and had to quit after 10 minutes. I guess he’s feeling frustrated at his body’s limits but he doesn’t express this very often. Extending high school may be the best idea for him, I hadn’t even considered that. How does this look on a transcript? Maybe I should delay him now (7th & 8th), would it still look like I “held” him back. How do your daughters feel about it? We are praying that with diet, exercise and medications that his GP might be managed and maybe even go into remission for a very long time. We are used to working around Dr. as my youngest has a condition and requires a team of specialists that we see regularly, some days I feel like we live at Dr. offices. Hard to believe I’ve already graduated two with nary a problem. I’m so glad to hear that you are moving back to England. I’ve read several of your posts and can see that you must be very happy about this.
Thanks for your help.Charlene
Here’s a funny/commiserating post that may give you some support and ideas. I’d never heard of this before and it is enlightening to say the least. Bless you and your son.
http://www.shoot-me-now.com/gastroparesis/
BTW, unfortunately the link to the forum at the bottom doesn’t work.
Also, for going the natural route (which I certainly can testify as being fantastic!) here’s a page that looks promising: http://www.daveshealingnotes.com/ailments/gastroparesis-natural-remedies.html
Charlene and Jake – i just wanted to reassure you that life is not over. I have lived with ulcerative colitis for 9 years now (which is different but similar) and reflux for the last year (with throat ulcers!). The last 2 or 3 years have been particularly bad. But in the midst of the pain and frequent bathroom trips and nausea and bouts of sobbing, I have gone hiking, visited the zoo many times, gone on cross-country trips, had parties and gone to them, taught school, went to church, ran a 5K, shopped, seen movies, gone swimming, had a baby (Jake won’t ever have that complication!), eaten at restaurants, and a whole host of other things. I do have to plan them a little more carefully than most people, but I can do them. I’m 40 years old now and will have this disease for the rest of my life. But I can still do many, many things. There’s a mental and emotional aspect of chronic disease that will take some time to wrap your mind around. And at times you may find yourself kicking and screaming about the unfairness of life. But stay close to the Lord. Keep your sense of humor. Move forward every day and do the best you can that day, even if it’s moving from your bed to the couch. I’ll be praying for you. Every night until I lose my memory.
I wrote this a while ago. Some may apply now and some in later life.
Blessings and cyber hugs – Heather
Bringing thyroid levels to optimal (usually at the top of the Free T3 and Free T4 ranges for many people) can definitely help as one of the symptoms of low thyroid is stagnated digestive function. Also doing things to kill off the bacteria that breeds because of the slow digestion can be helpful. I would think that making sure good bacteria stays a premium would be important as part of the good bacteria’s role is to keep the bad guys in check.
Bringing healing to the vagus nerve can also be a part of the puzzle. B12 plays a role in nerve regeneration. Many have better nerve function when their B12 blood levels are in the higher normal range.
A multi-faceted approach is usually always needed for true healing. But the biggest thing is DO NOT GIVE UP. Our bodies don’t just go haywire without a reason(s). It may take time to find the reason but keep looking. And God created us to regenerate healthy cells when given the proper nutrients. So let God be your guide but don’t accept that a diagnosis is a life-sentence.
Charlene, I’m so sorry to hear about your son. I will definitely be praying for your family. I just wanted to recommend a book to you about diet, that may be of interest. The Maker’s Diet by Jordan Rubin. He’s the founder of the Garden of Life supplements, so there’s certainly a bias to the products in the book, but it has a wealth of knowledge otherwise in it. I should mention that as far as supplements go, these are superb, but expensive. The book is mostly about food though. Anyway, the author had extremely severe IBS that he treated by delving deeper into what the bible says about food, and then backing it up with science. It’s a very interesting, very inspirational read. Now I don’t know specifically about gastroparesis, so please keep that in mind, but it sounds like there might be some overlap there.
Also, I will say the book comes across as fairly meat heavy, but I’m a vegetarian and I still felt there was a lot of wonderful information in it, so I think it’s a decent read for everyone. I’m a Registered Holistic Nutritionist (well, actually these days I’m just a lunch lady for my kids…) and I really found this book to be inline with many of my views on food.
I agree with others about how much the job market is changing and how so many jobs now cater to you. I think if he’s able to keep his spirits up and stay creative, then the jobs will follow.
Many blessings to you and your family,
Rachel
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