Son Struggling To Recover After Camp

[Kyler]

My 12yr old son officially got diagnosed with POTS 2 weeks before camp. He had very few symptoms until it started getting really hot a few days after that. He went from like 4 symptoms to almost all of the symptoms.He went to 4-H camp on the 14th and i sent specific instructions that apparently weren't followed. He did Ok but when he got home he was profoundly exhausted like i had neverr seen before. He had a slight cough before leaving but i sent him anyway.

Since coming home he has been sleeping 12-14 hrs/nite. Had intermittant low grade fevers,1 of which got up to 101F causing his BP to drop to 90/60 and almost pass out,muscle pain and weakness and shortness of breath(never had that before). I took him to his cardiologist and he said he might have a virus but his vitals are better than his first appt. thanks to the Midodrine. He said take him to his PCP for the fever and cough. We maintained lots of fluid and salt,and meds with no improvement.

We had to see the PCP that we don't like and he was a jerk as usual and had no clue what POTS was-he started the conversation with "so what's this condition your son SUPPOSEDLY has". And when I explained it to him and told him why I can't give kyler certain meds. and what his limitations are he said "so how's he supposed to live out the rest of his life with all that?". It made me really upset and i decided to report it to his boss. The worst part is that he said that in front of Kyler. It also put the same thought in my head and now I am crying about it again and wondering if Kyler is sick with a germ or if this is our new reality??? The bad doctor gave him an antibiotic and said it might help or it might not. i guess we'll see-just started it yesterday.

Kyler just said for the first time to his cardiologist "I really hate being limited". We decided to take him out of boy scouts as well because of the physicality of it. He got bored during the meetings anyway. He said he's tired of being tired.

All in all I think that we are realizing that this is life changing for our family. I thought that I had it under control but then it keeps changing??? How do you establish a routine and have a plan if the problem keeps changing?? It feels like it's progressing really really fast. I'm so sad for him and for me and mad at the world for not understanding and throwing myself a pitty party:(

.....Sad Serena

[ramakentesh]

that is not good news.

Unfortunately it can be pretty unpredictable. I do find that returning home from holidays seems to set my POTS back, but that it eventually improves again over time.

[all4family]

May I come to your pitty party with you because man it sounds like you need one. What a terrible thing that doctor did, and good for you for turning him in. But the good thing is that he has you, and that is the best thing that could happen to him. I can't tell you how many pitty party's I have thrown for myself. And there are always good people here to come to my party's.

I don't know how your son usually does, but the first thing I learned was that this disease waxes and wanes. Still everytime I am feeling better I think that's it, It was just temporary, and I am all better. Then I hit a rough patch, and am back where I started. I do understand though that there are quite a few lucky people out there that get better. So I am not giving up, and I hope you won't either. That and I know at camp it is really easy to catch a virus, so it may not be POTS at all bringing him down right now. I will be thinking of you and your son, and praying for you. take care,

Hugs

Suzy

[vemee]

It is probably the virus that is causing more problems than usual. Also you've got to remember that he has only been on midrodine for 2 weeks or so and it has not had time to fully run its course. While he is waiting for the medicine to take full effect he is still going to be susceptible to all of the environmental things that make pots so enjoyable. The fact that the doctor said his vitals have improved due to the midrodine is encouraging because it shows that the medicine will work with his system. I can't predict what his final status will be but it should be better than it is now. It took about 1 month for my daughter to feel a lot better and that was in cooler weather. She was still making improvements after 2 months on the meds. So don't get too discouraged, you are just at the beginning of the healing process and he just went through a major physical stressor.