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Blast From The Past


Kyler
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Hopefully some people remember us but it has been about a years since I posted. Kyler was 12 when he got a dx of POTS and now he is 14 and 6'2 1/2. This forum literally helped me keep my sanity as we went thru the process of acceptance and discovery involved with chronic illness. It got easier as we settled into the daily grind of managing this crazy condition. The baby is 18 mos. old now and I have a little more time now.

Kyler has unfortuanately gotten progressively worse over the last 2 years as he has grown like CRAZY. He is to the point that he can only walk around for about 10 mins. at a time and he goes to school for 1 class a day and does the rest on homebound. Having him classified as special eduaction was the best thing we ever did - he has become an honor roll student again - amazing what blood flow to the brain can do. We have adapted and overcome and Kyler is such an AMAZING and resilient young man. Historically Nov.,Dec.,and Jan. have been wonderful months for him and this time I almost forgot that he was sick.

The Grim reality just set in the other day as he started his downward spiral yet again starting last month. I am feeling very anxious as I wonder yet again how we will adapt to "worse". To top it off his youth group at church just kicked him out because he can't come to Sunday school EVERY Sunday and he can't participate in all activities (I argued to no avail). When I told him he said "I feel so betrayed". So I cried (where he couldn't see me) and I will be leaving my church of 9 years and writing a letter like no other to the minister. I don't get it.

In the mean time we are just waiting to reach the bottom of the roller coaster and start our way up again. I never thought that I would pray to hurry up and get to rock bottom. It's funny how life's experiences change your perspective.

Anyone have an idea or experience of the general age when boys with POTS stop growing and start getting better?

Glad to be back, Serena

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Serena,

My son just turned 16 last month. He is also 6'2" and still growing, thankfully at a slower pace now. My son is the opposite, December, January and February historically are his worst months. Although, right now he is doing even worse and it is March. He does not attend school at all, he takes 2 on line classes and 4 with homebound. He has been so sick, we haven't had the homebound teacher come for the last 3 weeks.

Like your son, my son continues to get worse. He had a 7 week 'remission' at the beginning of the school year, but continues to worsen as each month passes.

I really have no answers for you, I don't know when they stop growing (it seems I buy him new shoes every other month). Hopefully things turn around for these boys soon!

Christy

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Serena,

My heart breaks to hear your son was treated so badly by a church youth group. There are many supportive churches, just reach out and I believe you will find one. My son (15) had participated in youth group weekly for 2 years when he got really sick this fall and stopped going. It really hurt him to not go because he loves it. It wasn't long before they stopped texting and never really asked about him. I had talked to the youth minister but he never contacted my son either. After about 2 months I went and talked to another mom and the youth minister again and then everyone was contacting and encouraging him. The youth minister did not however. Last month I literally told him he needed to call my son and he did - once. Sigh... I hope your son is able to connect with a new youth group. Does he have friends from school he can ask where they go?

Christy,

So sorry to hear Cody is still not doing well. J has been having horrible trouble with his stomach. He has improved a lot these last couple weeks. We started making him move, literally supporting his entire weight to walk to the front door and back several times a day. Earlier this week he went to a birthday party for a couple hours. Yay! The last few days he is crashed and not so good.

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I always believe that when one door closes another one opens. This might be God's way of allowing him to find another church home with loving support. They need to understand that he is "physically challenged" and to not hold that against him because of his illness. Have you ever thought of him using a wheelchair? I had to resort to that. I didn't like the idea of using one, but after not being able to walk around and being left behind, I decided to use one.

God Bless you both and don't give up on finding a new church, it was meant to be:)

Dixie

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Hi Serena,

My son was diagnosed at 15 after a year of symptoms. He is now 20 and doing better. He chose not to take meds anymore but instead has adjusted his lifestyle to fit his illness. With that being said we are still hoping and praying that he will make a 'full recovery' but for now we are just grateful that he can function somewhat normally.

He is away at college and doing well although aside from classes he isn't able to participate in many activities.

Good Luck to your son!

Janie

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This is a bit off-topic, but I'm struck by the fact that everyone who has responded to this topic has a son. My child who has POTS is a teenage boy as well. I keep reading that POTS is an illness that mostly strikes girls, but I think there are more parents of boys than girls who participate on this forum. Just an observation...

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Serena,

I am sooo sorry to hear how your son was treated by the Youth Group and Minister. I also believe when one door closes another will open. You will find a loving church family. I also agree with Dixzeland that your son may want to use a Wheel chair or a Rollator (walker with a seat) walker. :rolleyes: I will keep you all in my prayers.

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Just wondering if he's had testing for specific seasonal type allergies... You mentioned that his best months are Nov-Jan and depending on where you live, this would make sense as to his symptoms being worse the rest of the year (it seems so many things attribute to our symptoms, I would guess allergies could also affect them).

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I'm so sorry to hear that these boys are having such an absolute hard time of things. It literally blows my mind away that a church, youth minister, or any other Christian organization/people could do such a thing! They should have been helping you think of ways to keep him included. But hun, if they would actually even consider kicking him out of anything at church,-- well, I shouldn't really say anything beyond that. Let's just pray for them, that God would show them where they are wrong and we will be praying that God will lead you in a new direction, to the place that He wants ya'll to be.

We are very blessed with our church. Until this past Sunday we had been out for a few months because Kay was just too tired to endure it. We travel 45 mins to our church, but it's worth the drive. When we are not able to attend, they always have special prayer for Kay. It warms my heart and I will be sure that when they do from now on, they will include these boys.

Love and prayers,

Kim

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Thank you all for the support - I feel that God called me back to this support group as I began to struggle with this again. I just found out yesterday that I am pregnant - that really explains the extra emotions. I feel like that is another sign that God is with us.

We bought a cheap WC last year and I almost felt like I was jumping the gun (he wasn't nearly this bad) but it really did allow him to do more and I'm glad that I did. He gets VERY purple legs and he gets sweaty and blurry vision (near passing out) but I have trained him to sit down when this happens so he has never passed out - He can stand still about 2 mins. and walk about 10 mins. We live in a very hilly place and Kyler weighs 215lbs so I have though about trying to get him a power scooter plus he thinks that they are fun. I am going to talk to his DR. about it.

I have never had him tested for anything like allergies because he has no classic symptoms like sneezing, runny nose or anything like that. His POTS DR. is wonderful and he feels that we can link onset to a virus at age 7 and a worsening due to his normal teenage growth spurt. He said that we don't need to test for any other causes because he has no significant symptoms of any other related illnesses. His decline each year seems to correlate directly to the rise in temperature. Last year we had a 2 foot snow blanket until the 2nd week of Feb. and he dropped off a cliff with his symptoms the day that it was rained away - the temp. increased 10 degrees and didn't go back.

We were considering leaving that church anyway because it has changed in a not so good way. We live in a very small town so most of his friends go to that church with us and are in the youth group but that's OK because Kyler makes friends very easily. It is the same lack of education and unwillingness to understand that I have found from doctors - I plan on educating the church but we are still leaving it.

Janie, It is VERY comforting to hear that your son is doing better. It is SO hard to see the light at the end of the tunnel when it is so dark where we are right now.

Thank you all for your support and encouragement. I will pray for all of our boys and girls that are struggling and their parents too.

Serena

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Serena,

My SIL's family lives in a town of 3500 and weren't connecting with their church. They drive every week 30 miles to a larger town where they found a wonderful church family and they kids have now all grown up in this church and active in the youth ministry still as college kids and graduates. It will work out :)

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Serena, I was outraged and saddened to hear what your church did. Like the others said, find another church. That they would do that to a child who has been through so much just blows my mind! You need to surround your family with people who will lift you up in support and prayer and show you what it really means to be a Christian. I have said it over and over that if my daughter, Liz hadn't had youth group at our church, I don't know what she would have done. Our church has gone above and beyond and the youth group made sure she was included in everything. She's been in our church bulletin for 4 years now every Sunday under the prayer requests. I hope and pray the same for him.

I know you've heard it before but hang in there. Your son has a good chance of out-growing this illness. I was told by another mom of a boy that a doctor told her that the more testosterone, the better guys feel. I hope and pray that for him.

We just hit the 4 year mark with Liz and things are going soooo much better so I hope that gives you and others hope that our kids can live through this and get better.

Congratulations on the upcoming baby! God is good!

I'll be giving you a call soon to talk or feel free to call me when you get the chance. I'll be home all next week for spring break.

Take care,

Brenda

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