JuneFlower

Rachel- Thanks, yes my daughter is in the same boat as your son. She really can't attend school. She has been there about 2 maybe 3 weeks altogether this year. I really don't know what to do. I am planning on asking about the IEP on Monday. I will force them to do one before 9th grade. I think that is important.

ChristyD- thanks for the inspiring story. I will hope such a thing happens for us and we find something that really helps her get better.

Loonymom-thanks for all the info. I read about it a lot last night.

June

Rachel, I will continue to look into the IEP. But the 504 has all those elements already. I just have to research it more.

June

Galatea,

I understand, don't worry. I didn't take offense. We are lowering some expectations already unfortunately especially regarding school. We keep thinking she'll go back but she doesn't. Sigh.

June

Rachel-

yes we have been talking to the school almost every other day and they are very aware but they still took her out of all her advanced classes and she had to drop 2 classes. She still isn't doing practically any work. The work she does do is A material but its not enough to move forward. I don't think the school really knows what to do for her either.

June

Ok so I read about the IEP and I'm confused. How is it different than a 504? They are already giving my daughter many accommodations. The only thing missing is the home tutoring that we just recently feel my be helpful.

June

yeah thank you. I have seen that page on that website before. My school doesn't seem to think they need to provide anything unless she is out for a month continuously. I don't know about that.

But there is anxiety on her part as well. For example her migraine suddenly got better at 2:00pm today when she knew school was over and there was no chance I could bring her to school. It will be gone all weekend and back monday morning. But its hard, cause I can't tell when she is exaggerating or not. And I get migraines so I know how bad they are. She just won't go unless she feels 100%. And that just isn't going to happen a lot. I think we will look into the IEP right away. Sounds like she needs it.

June

Christy- what is an IEP?

They won't give homebound tutoring until she is out ( i think ) 30 days in a row. She will miss 26 or something and go for a day or 2 then miss another 3 weeks. Last year they made an exception and got it. Maybe I should ask again. I can't see her graduating from middle school at this point and maybe she shouldn't'. She missed everything for the last 6 months. I don't want her to struggle for the next 4 years to catch up.

June

Naomi, I try to believe and I get that the POTS is real & the low BP. But she won't even try to go to school unless she's feels 100% perfect. She's afraid the teachers will criticize her if she doesn't participate fully. And she has a 504 which explains that many days she may just be sitting in the chair and that's it. She doesn't try. It's frustrating and now she may have to repeat 8 th grade.

June

Thanks for the info on mindfulness.

galatea- I haven't given up on her actually getting better especially since we don't know a cause yet for her problems. I am not settling for lowering my expectations yet. But maybe I'll have to. I really hope not.

June

Thanks Chaos & Loonymom!

I will definitely research all of this great info. I appreciate you taking the time to share it with me. I am so desperate for my daughter to just feel better & go to school like a normal kid.

I know exactly when all her problems started and that really points to an infectious cause.

June

Thank you all for your heartfelt words. I will be rereading them often.

She has been sick for 13 months and missed school that whole time.

She is in therapy and likes her therapist. But she hasn't discussed this with her at length. She is very shy.

She has a psychiatrist and she's tried biofeedback. We haven't done mindfulness. I will look into it.

We gave her a kitten. (She's an animal lover) and her kitten has helped her mood and ours!

Sometimes a friend will come over and it helps. She is always better at school. She was doing so well but got travelers diarrhea and is home again this week.

I didn't want to alarm anyone in my post because the situation is under control but she is talking about the worst case . So I've spoken with professionals today . If it happens again I'll have to take her to a hospital.

Thanks to you all.

June

I am checking out the kids website too. It would be great if she could chat with someone else.

I have taken all the necessary precautions and talked to all the support people. But, I need support here too. My daughter has expressed very bad feelings all related to being "a sick person now, my life is ruined, everything I worked for is gone…." I am leaving out the scary parts because this is an online community. But really how do you all deal with Chronic Illness and everything it takes away?

I haven't given up on finding a treatment for her. We still are going to Dr Stewart and having an Addisons test. But she is 13 and can only see today. She has no optimism. I know this is common in chronic illness. But just looking for tips. As I said we already have professional help in place. Thanks in advance

June

Honestly, its strange, the symptoms of CFS seem to be mostly the same as the symptoms for POTS. Maybe a couple added things…Maybe they just don't understand POTS and CFS. Maybe an infection causes POTS with varying severity. This would produce patients who appeared to have both or one but it's really all the same.

I will definitely ask Dr Stewart about the connection when I see him. I was diagnosed with CFS years ago. I never received any effective treatment for it and am still extremely affected today. (tons of illnesses, extreme fatigue). But there isn't really a good treatment that I am aware of. They wanted me to take all these expensive vitamins…Kinda didn't ring true for me. Oh well.

June

Yeah I don't know. She gets a lot of infections. She has fatigue but she can't sleep at night. So maybe its something else. Not sure yet. Will keep reading.

Thanks for resending the links!

June

Chaos- hi, thanks so much. I will look into this. The links didn't work. Bummer. I appreciate the info you gave me. I didn't think of CFS.

June

Sounds like she wasn't very understanding. I hate when medical people are obstinate. It doesn't belong in health care. I don't treat anyone like that especially my patients.

Yeah my poor daughter gets every illness due to her malnutrition so she's got a stomach bug that set off a bad migraine. I swear she never goes to school. I'm at the end of my rope.

June

My daughter just gets everything around infection wise. If I have a virus, 24hr later, she will have it. My son and husband don't get sick much at all. I tend to get stuff but I deal with it better. I'm not sure if it's because I am older and just push myself more or if my daughter gets a worse case of everything. But I am wondering if anyone out there gets frequent infections? Is this because of the POTS and low blood pressure? Seems like a weird connection.

June

That's interesting and sounds hard, Becia. I though referring syndrome was a problem with electrolytes that results in sever edema and can lead to complications. The nutritionist was very worried my daughter would experience this as she was malnourished and was starting to eat again. Luckily she is fine but now sick with a virus and horrible migraine. Poor kid can't get a break.

The nurse should be happy that you already tried some things! I guess they think you need the florinef. Its good you are getting a lot of opinions but sometimes that can muddy the waters and make it hard to choose a treatment. You'll probably have a gut feeling about which dr is on the right track and really listening to you. After all, you are the patient and therefore the expert on your condition.

June

Something is rattling around in my brain. I think some dr said to get a decent brand to ensure actual good bacteria in the right quantity. Not sure if it's true though…I got Culturelle for my daughter. Too soon to know if it's working. She mainly needs it because she was really malnourished.

June

Becia,

Thanks for sharing your story. I'm sorry you are having such a struggle. I have heard that there are two salt tablet products that are more tolerable.(coated or something). I hope they figure out why you have trouble swallowing or do you know already? Is your visit at the clinic over then? Just one day? I am taking my daughter to Dr Stewart in NY. I think it will be two appointments but not a huge thing. But I was looking at Cleveland or anywhere with a specialist. So thank you again for letting us know how it went.

(My daughter had a pic line when she was 7 and it was easy so good luck!)

June

Finally talked to a nurse from Dr Stewarts office and after we send in the records, we can set up an appt! I am so relieved. I hope he can actually help. The conversation with the nurse was encouraging.

My daughter is feeling good this week do I am feing a bit funny taking her to a POTS specialist. But maybe it's still a good idea. Before now, she never stays well for long. Will post more.

June

Now we finally have the opportunity to meet with Dr Julian Stewart. I just have to send over her records. I spoke with his nurse today and she was very nice.

thanks srb-yeah it's just that she has been great the last week. Maybe as she gains more weight all her POTS issues will go away?

June

No she stopped the trazadone a while ago. She still has all the same issues so it wasn't the drug.

The pulse is most likely right but that is also easy to learn to do by hand. My daughter's cardiologist really only likes the manual cuff he has. There is an automatic arm cuff from like walgreens or wherever that will give you some idea.

June

thank you goodn77. I have an appt for her in May at the childrens hospital of philadelphia. We'll see what happens. He sounds experienced and understanding. That's what she needs.

June