JuneFlower

gjensen,

Yes thank you. I know this illness isn't easy for anyone. But I worry about her education. But I don't want to push too hard. And sometimes she feels really sick and sometimes she fakes it. So its hard.

June

Northerndarlene- the k12 thing is not available in our state.

gjensen- I understand. Cause if I left it up to her, she would never go…Lol. She used to enjoy school but not anymore.

June

Jackie- thank you. I agree that experiences would be very similar across different ages. I only meant that a 13 yr old has a lot of angst anyway about identity. This is really complicating it.

BigSkyFam- I understand. I don't know if her public school would allow that. But that is a good idea.

June

bigskyfam- "half and half"- what?

gjensen-choose to go to school?

sorry i am so confused. she is 13 so she's not making decisions about school.

Thanks everyone, we retained a lawyer. I'll pm you looneymom.

June

It sounds like you have adjusted well. My daughter is just 13 so how they deal with things is very different than an adult. I will let her counselor work with her. Also we are not settling for this constant sickness. We are still in the phase of trying to actually get her better. Maybe silly but there you have it. Seeing a specialist soon hopefully.

June

She has her own private counselor who she likes. The isolation of homeschooling or online schooling is going to make her more depressed . But thanks

Gitte- yes everyone has talked to her. She's been reassured that they don't expect her to be 100% when she comes all the time. She just doesn't do anything halfway. We are working on that.

School officials are useless, engaging a lawyer at this point.

yeah she has a 504. Just had school meeting about IEP and 504. Plan is for her to go to half days for now. But we will get tutoring.

They mentioned the phrase "medically fragile" today. Not sure how that helps us.

June

The drs says she should try even if she doesn't feel great.But she refuses to go unless she feels 100% perfect. And with POTS and hypotension, that doesn't happen a lot. Right now, she is suffering from many migraines. Any tips on getting her to go? Or should I be trying to get her to go? She doesn't want to homeschool or do school online. She's going 9th grade. Its a big problem.

June

Good for you for advocating for yourself. I am constantly doing that for myself and my daughter. It's sad really but drs are people and sometimes don't admit when they are stuck. Feel better.

June

corona-somehow it does comfort me though I wouldn't wish this experience on anyone. I will find someone soon. It's just impossible to get a good pediatric psychiatrist. And forget about one that takes insurance. They don't exist.

Thanks Katybug and Naomi! It's nice to be supported. I really need that understanding right now.

June

The dumb dr actually said that all my daughters cardiac symptoms were a somatization of stress. What a quack !!

I guess when she lays down, she has no stress but drops her pressure and has tachycardia for more than 10 minutes on standing bc it's in her head!

I fired him and walked out.

Just want to cry lately

Requested an IEP for daughter. They are having the meeting right away but all of a sudden the nice guidance counselor has turned ugly and evil and defensive and we may need a lawyer .

June

ice lizard- she goes to a nutritionist who can measure scientifically what she gained. She gain 1lb muscle, 2 lb organs, 2 lbs fat. Still real low on intracellular fluid.

June

I don't know how long you have to stay tachycardic to be diagnosed. My daughter stayed over 150 for over 10 minutes. But she is better on medicine.

June

Eeww it may have been a complicated migraine. it appears a lot like a stroke. There was a newscaster who started slurring her words on the air. It was a migraine but she didn't have the pain, which is common as well. I hope they did an MRI though or something to make sure there wasn't something serious going on. Glad you are feeling better. Reglan gives me a terrible side effect.

June

Yeah I kinda feel like you all have stated. But I really respect this particular dr. But he does admit to not being an expert on POTS. He usually refers difficult pt's out to specialists.

June

So , not impressed with my daughters current dr. She has gained a few pounds and has felt better the last week. So he says if it continues she can stop the medicine mostly and just use Midodrine as needed.

Has anyone experienced this? Is nutrition really the answer to all her problems? I am skeptical but open.

June

Rachel,

Yeah I guess things could be worse. But things aren't good . Lots of stress on the family. Lots of misunderstanding with school officials.

June

Gjensen & Pianoman,

Thank you for your encouraging words.

I hope her mood gets better. It seems to be up & down. At drs right now for Addison's test finally. But results take 3 wks! Going to her psychologist today .

June

Thanks to everyone here. She is feeling better mentally and only today also physically. I am happy she will finally get tested for Addisons Monday. I want to get that off the table. But it takes 3 weeks for the results. Crazy. But now I am feeling more secure in her mental state. But she is always happier on the weekend. I guess adolescents bounce up and down.

June

I would see a specialist in POTS or Dysautonomia. They should be able to get to the bottom of your problems. Also just want to say that my daughters cardiologist said the same thing to us. Now that she isn't fainting-he has done his job. No more treatments. ugh. So I have an appt with a specialist.

June

Jackie,

Thank you for writing. I will take a look at that blog. Yeah, she just perks up so much anytime she does go to school and sees her friends. I couldn't take that away from her unless it becomes really clear that can't go at all. Then I will have to adapt. But I can't give up yet.

June

Jackie-she was healthy until jan of 2013- a her problems began with status migrainous for a month.

June