Update on my son, Derrick

[danelle]

Just wanted to update everyone on Derrick. He went to the cardio yesterday and he decided to give the klonopin a try I am glad because the few times he has taken it recently, it has REALLy helped his POTS symptoms.

We still have a LONG way to go, though, to getting him feeling better.

He broke my heart yesterday. He was talking about how things that he used to do with his friends(weight lifting, sports, etc) that he can't do anymore without having some really bad tachy and symptoms. When he was discussing this with the Dr, he had tears well up in his eyes. This is so unlike Derrick. It just tore my heart out again. The doctor was very compassionate and understanding with him but at the same didn't give him any false hope, just lots of encouragement(which I really liked). We have really lucked out finding this doctor. I think God send us to him, or him to us-I really do-even if it sounds corny. It took me 18+ yrs to get my dx and to find a dr-12hours away, that even would listen-Dr Grubb. I am so thankful that Derrick, and now my new Dr, moved to this area and knows about POTS. Not only that but his compassion and understanding is a rare find.

Anyway, I don' t know what I can do to make Derrick better and it kills me. I see pain and fear in his eyes, disappointment, but not ONCE has he ever blamed me. Not once has he ever said "why me", he rarely complains unless it is very bad. He is such a unique individual and I actually look up to him, I admire his strength, determination, etc. Instead of worrying about himself like most teenagers do(believe me, he isn't your average teenager-thank God-he is so much more mature and intelligent) he worrys about me. Not only if I am feeling bad, but he never wants to worry me or anyone else. He is the type that would pass out before saying anything to anyone to keep from worrying them.

I may complain from time to time and feel like things are so unfair(which life ISN"T fair) but I couldn't ask for two better children, I honestly couldn't.

That's the update!

[corina]

Hi Danelle,

thanks for the update on your son. You must be so very proud of him! I feel so very sorry for you as I can understand how much it must hurt you to see this happen and for Derrick, because we don't want our children to get POTS. On the other hand, Derrick is very lucky to have YOU as his mom, because you know how hard it is for him and what he's going through. Still, I wished POTS hadn't hit Derrick.

I'm very glad that you found a great doctor, that makes such a difference!

Wishing you and Derrick all the best Danelle and thanks again for the update!

Corina

[morgan617]

Danelle, I'm glad you found a good doctor for Derrick. I hope the meds help him. My son Jacob got sick at 11 with juvenile onset arthritis. It is very insidious and he slowed down. He told us his feet hurt, and his knees and hips, wrists. I thought, growing pains. I took him to the doctor and he said the same thing. It wasn't until after 1 year of pain he got up one morning and couldn't walk. His feet were so swollen, we couldn't get them in his shoes! He was on so many meds, had p.t. 3 times a week for 5 years, was an inpatient, and never once complained! We went to an arthritis clinic when he was thirteen and I asked him why he never complained about the pain. He said, It's just part of life mom. Out of the mouths of babes. He has never been able to be in p.e. let alone work out. Then at 15, he also got crohn's disease. He never complained, he just said he had diarrhea he couldn't shake. He lost 30 pounds. Then he developed hyperparathyroidism from the inability to absorb calcium and osteopenia from that. Now he has those tumors in his leg. I have only see him cry once and that's when they told us he had cancer. He has a very small circle of friends that understand, but at 23 has never had a girlfriend, and less than 5 dates. He does feel no could love someone so sick. On top of that, he is trying to go to college, and work part time. He takes me to all my doctors appts and everywhere else i need to go. And never complains. He takes 21 pills a day.

I can't tell you how often I'VE cried over the unfairness of this. No child should ever have to suffer long term chronic illnesses, or any illness for that matter. My heart really breaks for you, because I so know where you are coming from! I will keep you and Derrick in my prayers and hope that he will recover and be able to function normally again. Jake's spine is already fusing and his left S_I joint is fused, so he is getting rather progressed here. Eventually his entire spine will fuse together. The only choice he has is whether it's upright or bent over. God, what a world, when we have to watch this happen to the people we love most in the world suffer and are completely helpless to do much of anything. Tell Derrick from me, what a brave soul and sweet spirit he is. morgan

[lindaf]

Danelle, Your son sounds very special. How hard it must be to watch your child being so ill and not being able to have an answer. I will pray for all of you. Linda

[geneva]

Derrick and Jacob both sound like young men well beyond there years....and tremendously courageous.

Danelle, I am so happy that you have found a good doctor and one that your son can feel comfortable being completely honest with. If a child has POTS, I think having a parent who knows exactly what it feels like is probably an asset (not that anyone would wish another to have this illness).

I think you are doing a great job managing your own health needs and giving your son all the support he needs as well. Be sure to remember that. Blaming yourself would serve neither of you. You clearly are a devoted mom.

[funnyfrog]

Hi Danelle - What a special person you are for being a great mom and Derrick sounds like such great young man. If I had a son, I would want him to be just like Derrick - You should be so proud of him - Keep up the good work and I am sure he appreicates you being there for him so much through his illness. Beth

[JLB]

I raised a chronically ill son. Lots of stuff he couldn't do - they told me when he was a baby that he could very well die by his 2nd birthday.

He'll turn 18 in October. Just got his driver's license, loves wrestling and music - wants to train to advocate for battered women this fall, while he goes to college. He wants to be a doctor of psychology.

IOW, it looks plenty dark at times when they're younger; what they don't understand is that they're learning life-lessons that will bless them later on, and bless many others as well. Our children aren't anything other than extremely special, and very important.

But I know the pain and the fear. Keep looking ahead, and look for the growth - God has special things ahead for our special kids.

Here's to the special children in our midst...

[danelle]

THanks to all your responses

Morgan, My heart breaks for you and Jacob. I am SO sorry that you both are going through this. Maybe I need to quit complaining so much. Please keep us updated on his condition. I will be thinking about your both frequently and you will be in my prayers.

JLB, how wonderful!! Proves that sometimes we just don't know what is going to happen, good or bad.

Thanks for all your kind words and reassurance. You all are the best.

Hugs,

Danelle

[Guest Mary from OH]

Danelle-

I'm glad the drs. decided to give Klonopin a try, it really seems to help Derrick.

And everyone... there are many of us on this board with "special" children. Do you think it is a fluke? I don't think so. God chose us as these children's parents because he knew that through our own suffering and learning we would become better educated and better able to handle a child with special conditions. And, everyone is capable of amazing things. We just have to set our mind to it. Even on the bleakest of days, the deepest of POTSholes, there is a glimmer of hope and light. That day yet to come. The promise yet to come true. There is always hope.

We must always thank God for our children. They really DO put things into perspective. They are strong. But, we also must realize that they get their strength from us. We must be strong and guide them. We know not what the future holds. Even with the bleakest of diagnoses, always hold on to hope. Pray and Love and LIVE!!!

HUGS AND PRAYERS TO EVERYONE!!!!!