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For Parents Of Teens...


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I'm writing this for all of of the parents who feel despair and worry about your child's future. By sharing my son's story, I want to give you a reason to hope. When dysautonomia strikes, it takes away so many of our children's hopes and dreams for the future with it. I get that. My only son was stricken at age 12 following a very severe GI virus, an enormous growth spurt, and an extremely strenuous soccer camp. In hindsight, he had symptoms his whole life, but all of his doctors never put the pieces together. My son went from being an A/B student and class leader to bedridden, unable to stand or even eat. He was losing weight dramatically even as he was growing taller. His weight dropped to under 100 lbs when he was 5' 8". None of our local doctors could help. None of his doctors in Atlanta could help. By the time, I located the appropriate doctors at Johns Hopkins, he was too sick to travel. Even though we flew, it took three days to get there as he was unable to even drive in a car to get to the airport. Frequent hotel stops to regain his strength made it possible. It took several painstaking visits, but he was ultimately correctly DXed with small bowel dysmotility secondary to his autonomic dysfunction.

When he was forced to drop out of school due to his failing health, we sobbed. It felt like he had failed somehow. At age 12, he was too sick and tired to do what was expected of him. In retrospect, it was the BEST decision. By homeschooling, he was able to sleep much more, do schoolwork and homework when he was able, and focus any extra energy on healing. With the guidance of his Hopkins docs, we ran trials of dozens of meds until he found a regimen that worked. He did weekly integrative manual therapy. We identified dietary triggers (dairy) and eliminated them. He ate very nutritious foods, mostly pureed baby food at that point. When he was able, we began walking around the block at night. The daylight hurt his eyes and he was generally more energetic in the evenings. Little by little, he regained his strength. He tried to keep up friendships and act normal along the way. I'll never forget dropping him off at a school dance at age 13 when he was still homebound. He so wanted to be normal and accepted by his classmates. Driving in the car still made him sick. I pulled up to the school gym. It was dark. He refused to let me help him. He staggered out of the car, half crawling and half walking, he leaned against the building and barfed. When he was done, he slowly stood upright and calmly walked into the dance. As a Mama, my heart broke. It hurt me so much to see him so hurt, yet so determined. He eventually was able to rejoin his classmates for the last few weeks of school. He's been able to attend full-time since.

He's not the same child, but he did find his new normal. He takes dozens of meds a day and has to rest and sleep so much more than his peers. After school, he crashed for hours and then did homework until midnight or later. Psycho-educational testing revealed that his speed processing was in the 7th percentile. His auditory processing, especially memory, was in the 10th percentile. (That meant he wasn't understanding or remembering what his teachers said- imagine!) These deficits added up to a dyslexia DX. His High School was a private Catholic school that offered NO accomodations with the exception of extra time (occasionally) for quizzes and tests. It was an uphill battle that seemed insurmountable most of the time. He never spoke about his illness with his peers or teachers. He has trouble verbalizing all of the components it entailed. He looks healthy, but suffers every day with fatigue, nausea, lightheadedness, pain, etc.

Well, he did it. He recently graduated from High School with honors- 7th in his class of 30. We were floored. He actually struggled not to fail so many of his classes. We were dumbstruck when he walked down that aisle with a gold cord. Finals had been the day before. Teachers and the administration were calculating GPA's till the moment before. He plans to attend a university 5 and a 1/2 hours away from home. It worries us, but he is ready. He's working to manage his 20+ doses of meds, refills, etc on his own this summer as practice. We have appointments to meet with the medical & disability directors there soon. He's studying something he loves so we pray it will work.

I recently read Petunia's Mom's post with tears in my eyes. Yes, it can be done. I NEVER thought he'd get to this point, but he has. He is far from cured- but coping. He's a different kid now. He's a little cynical. He gets that life doesn't always work out the way you plan. The good thing- he's super compassionate & regularly stands up for bullied or other "different" kids. He's sort of an alternative (disestablishmentarianism :D) leader now. A rebel for good. That might not have happened if life hadn't thrown him a curve ball.

I write to offer hope, not to flaunt Mack's success. Our kids can learn to function within their "new normal." I am awed and humbled by all my son has been able to accomplish. I can't wait for the next chapter. We are very grateful for all of the support and information we have gleaned from all of the kind members here. All of our children are in my daily prayers as they struggle to heal, cope and find their ways.

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Julie, thank you for sharing Mack's story with us. It's both heartbreaking and inspiring, and I'm sure that all of us who are parents of kids with POTS can take hope from it, just as you intended. Mack is an incredible fighter. It was interesting to me that you mentioned that he never speaks about his illness to others. Dan is the same way, although I've told him that when it comes to college applications, he'll need to learn how to be "queen for the day" to help explain his non-traditional path through high school. (if you understand that reference, then you're as old as me!) :)

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Julie,

Thanks for sharing the story. We have come to grips that Cody might not attend any more high school in an actual 'brick and mortar' school. We are still hopeful that he might make it back, but have set into place a plan to get him to graduate through homebound and on line classes. He is doing well also, 3.8 gpa. His school has been amazingly helpful setting everything up, IEP, Homebound, paying for his on line classes.

Cody also does not speak of his illness with his friends, he doesn't want to be different. He barely speaks to me about it, it's like pulling teeth to get him to give me details on how he is feeling. It's not that I want it constantly on the forefront of his thinking, but I like to document what is going on and any changes that occur,etc....He doesn't dwell on it and just knows that this is his life. He is an inspiration in the way he handles it.

Christy

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I tried to get Danny to see a therapist, figuring that he needs to talk to SOMEONE. he went a few times and then refused to go back. He said that therapy was forcing him to think about his problems and that made everything worse. Boys/men are such a different species! (no offense to anyone out there...)

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Definitely a guy thing. Mack saw a psychologist a few times after his local doctors suggestion he couldn't eat due to emotional problems. The psychologist determined that he was fine emotionally, but he really needed medical help. Mack said "See!!!!" He's never been back.

His friends notice he drinks a LOT of water and take meds throughout the day: AM, middle-of the-day, and PM. They don't care. They don't ask questions. That's just Mack. Grunt :lol:

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My boy doesn't like seeing a psychologist either. The one we saw was wonderful though. She saw us together, esp. since he was having so much cognitive trouble. I always asked him if that was ok with him. He could really care less. So we all talked. I gave her the big brochure on teen dysautonmia our first visit, and on our second she gave it back after having read it cover to cover and made a copy. She also made some comments that I know she has a very good understanding of his symptoms and what he had to deal with. She offered ideas, gave him a card with something to look over later and off we went. I think we have been 4 or 5 times in about 4 months (not recently) He always felt bad when we were there and I know it stressed him to go (it was about 1/2 hour from home).

BUT, I saw changes in how he coped with things later and because I was there with him, I was sometimes able to gently coach him. Anyway, just because they don't want to go doesn't mean it won't help them, but the idea that opening up to someone about all their worries will be helpful probably isn't what the expectation should be. Yeah, boys don't talk about feelings, that is for sure. But they do like tools and a psychologist can give them tools for later when they need them.

Nobody likes to go to the dentist, either, but you need to if you want to keep your teeth healthy. Just my .02

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Julie,

Thanks so much for this! Congratulations to you and Mack! As far as not wanting to talk about things, rest assured, it's not just a boy thing. Kay doesn't want to talk about feelings or her illness either. These days I'm lucky if she tells me when she's having blackouts. She's in a "mad cause I'm tired of being sick" mood. I'm sure she will come out of it though.

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Julie,

Thanks so much for this! Congratulations to you and Mack! As far as not wanting to talk about things, rest assured, it's not just a boy thing. Kay doesn't want to talk about feelings or her illness either. These days I'm lucky if she tells me when she's having blackouts. She's in a "mad cause I'm tired of being sick" mood. I'm sure she will come out of it though.

K'smom,

You are right. There is that "teen" thing also :) I know there are probably a lot of adults, too, who don't want to go "talk to someone" But our teens have so much going on and their HUGE desire for independence has been shattered, regardless of whether we tell them they will most likely be better in a few years. That is lifetime to them.

And thanks Mack's Mom. It IS good to be reminded of the successes and also the getting through it can be really awful, but we will get through it :)

It is almost 12 and MY teen won't get out of bed :rolleyes:

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Thank you, friends, for all of the kind words :rolleyes: . As you parents with affected kids know, It is an indescribable pain to see your child suffer- especially when you don't know what it is. I know many of you have younger kids and worry that dysautonomia will strike them as they reach puberty, etc. If it does, YOU will be proactive and prepared. I'm certain that your kids will never get as sick as Mack did because they will get prompt help.

Sarah, you mention my illness. I had been incredibly ill on and off my whole life, BUT it was Mack that helped me realize what I had. When he was Dxed, I said "Oh, THAT'S what I have." He inadvertently helped me.

kcmom, point taken. Helping professionals CAN be of enormous value to our children IF they are ready & accepting. More than it being a "guy" thing (although there IS that), it's really a developmental thing. For the most part, teens are notorious for spurning adult helping professionals. Although, you are so right, many adults are also unwilling...arrested development??? Twelve is still somewhat compliant... You can lead a horse to water, but can't make him drink sort of thing ;) I will say that the psychologist Mack saw at age 12 DID teach him to effectively utilize bio-feedback. THAT'S how he was able to ride in the car & fly to Hopkins. He kept his laptop with the bio-feedback program in front of him the entire way. He had to use his mind to keep hot air balloons afloat thereby controlling his HR and BP. It took enormous effort & the effects stopped, the moment he broke concentration. Without that, he would have been barfing & fainting the whole way- so it was a blessing. And, kcmom- good for you for having some of those "tools" in place as your son gets older and may become less compliant about seeing a psychologist, etc.If it makes you feel better, Mack pretty much slept most of age 12 away too... I crammed the schoolwork in his few awake hours.

Mack is my hero. I am awed by all he's been able to accomplish. And, I'm fearful for his future...

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That was a great story for parents with DYS kids. I'm sure it helped them to understand the realities of what's possible.

Just curious, does Mack feel "scared" or concerned about going off to college, or does he feel confident? I KNOW what a parent would feel like, just curious what he feels like.

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Julia,

I was in your shoes 6 years ago with my Son #2 when he was heading off to a University. I might suggest that you contact the security staff there as they can be very helpfull. Every time he had problems it was the security team who notified me of what happened and what they were doing. Also we used the instant messanger on the net to keep in contact and if he did not respond by a designate time we had the security to check in on him, and on those few occasions it was great to have them available. Also when he called me on his cell in a POTS crash I could immediately call the security and they responded very quick.

Well in his senior year he as team leader took his University to the National contest in Civil Engineering competition and they place 13 in the Nation. Last year he got married on Jul 30th and it was 98F and he was the coolest dude there, oh wait, he had on a cool vest. LOL!

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Regarding these kids seeing a psychologist, my son's was wonderful. Before Cody was diagnosed, doctors of course we're all telling me it was anxiety, not wanting to go to school, etc... So I gave in and took him to the psychologist. She was wonderful! She researched all of his symptoms(and of course cleared him of anxiety or depression). She is the one who recommended we see a cardiologist, she thought herself that it was orthostatic intolerance. Without her, we still might be searching for the correct diagnosis.

Christy

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Wow- DadofPotsSon, Security!!! I never would have thought of that. Thank you. We leave soon for orientation & will put them on our list. He's staying in the dorm for the 1st year at least & I was thinking the RA might be really helpful as far as checking on him, etc. IF he wouldn't answer texts, etc. I also LOVE the idea of timed check-in's...not sure if he will ;)

Thank you for sharing your son's story. I LOVE to hear when our kid's can triumph. The playing field is soooo unlevel that coming in 13th in a national competition is winning in my book! I bet you were a nervous wreck at that wedding waiting for him to faint :blink: I can relate. My son is a musician and often performs in outdoor venues- 95+ degrees with 100% humidity. Other parents would worry about him missing a note or his messing up his lyrics- I just pray he stays upright :rolleyes:

Sue, Mack is very excited. He acts very brave, but I think he's a little scared.

Question for those of you who've been through this, did you have to have a medical power of attorney for the University Medical Center to talk with you during rough periods? A friend of mine with a POTsie son had major problems with medical communication until she had the paperwork on file.

Thanks for your help & input-

Julie

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Thank you, Julie, for sharing. I am so glad for Mack. I fully understand and relate to this experience, our journey is just beginning. This has been a really tough year for TLC. This was her first year in middle school, 7th grade. She started the year in a wheel chair, though it was wonderful and provided a lot of freedom, it was also the only outward sign of being different. That is a big no-no in middle school. She also started the year with a new symptom, migraines, every day. She ended up missing 41 days of school and had to be pulled out of school mid-day at least 30 days out of the year. All her classes were pre-AP as she does not deal with brain fog while on her antihistamines. By mid year we were ready to pull her out of school and have the school come to the house. We didn't, the school was surprisingly flexible. Amazingly she finished the year with a 3.9 GPA and was inducted into the Junior National Honor Society. We worked hard and we worried hard. I would have been happy with just barely passing. The tears flowed. Now, five more years to go before worrying about college. Again, congratulations to you and Mack both.

p.s. TLC was able to participate in the Miracle League this spring playing baseball for the first time. She couldn't have done it without her wheelchair and her buddy.

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