My son is out of school currently. Three weeks and counting. This is his second time this year. Last time he missed most of his first semester of 10th grade. It took the doctors 2 months to diagnose him. I didn't even know the name of it till this week. I'm very upset with the doctors and his school. Neither has been very forthcoming. Why did I have to find out on the internet the truth about what is going on with him? I need some advice for schooling options and on how to deal with doctors who seem to know nothing about this. Please help.

Welcome to the forum,

For those of us who have kids in school, this forum will give you alot of help.

First of all, you can leave your son at the present school that he is in, he is considered "medically disabled" for the time being, and the school must accomodate him.

If you son has been diagnosed with NCS, the school must comply with his medical case.

Please go to www.dynakids.org this site is set up for kids with dysautonomia (the big word which NCS, POTS and other dysautonmia falls under)

That web site has a "Schools" section, where it has a link to a SECTION 504. If you mention this section to the school district, it's a law that says the school has to comply, to educate him. That means if your son isn't up to going to school, they have to send a homebound teacher.

Your doctors may not know much about NCS, and it's hard getting any answers from those who are not educated in this area.

this site has recommended doctors, also the www.dynakids.org site has doctors listed, along with www.potsplace.com

hope this helps!

Hello,

I just wanted to welcome you to the forums.

All of the suggestions from cybermom85 are great and should get you off to a good start to learn more about your son's condition.

There are several moms with sons here and we understand the frustration with schools and doctors.

I hope you will be able to feel you have found a safe harbor here like I have. Please keep in touch.

Judi

Cybermom 85 and JudiElise,
Thank you for your response to my post. I printed up some of the stuff from dynakids and took it to school. I hope that they respond the way they should. We have shown all this information to my son as well so that he is informed. It actually made him feel better in a sense. He has had drs. tell him that it's all in his head. I intend to give them a copy of the information I have now. Maybe they will think twice before they tell a kid that. Thank you again. I feel I have a place to go for help and encouragement.

Any updates with the school? Just wondering, let us know, OK? It's sometimes a long process, don't give up.

You will likely also want to get a 504 established for him. It requires some time but is worth it and gives you more weight in dealing with these issues.

Hello Naohmad,
My son is 13 and became sick last Sept. We had an awful time with getting a diagnosis (POTS) and dealing with school. First no one believed he was really sick, then the school didn't want him there because he could only go a couple of days a week. The last two months he hasn't been to school at all, and we are getting an hour a day of homebound instruction.

He is currently on a 504 plan. After talking with other mothers in town with kids who were sick, I was advised to try to get him qualified for Special Ed.,Other Health Impaired (OHI). He is a very bright kid, who previously earned mostly A's, but I'm really concerned about his brain fog, and it seems as though things that formally were easy, take him a lot longer. I really want the OHI because it will give him a case manager who will advocate for him at the school. Right now, he feels that no one cares about him. Not one teacher has written him a card, sent an email or had his classmates write to him. I have asked twice if someone could do something, but I guess they are too busy to care.

If your 504 manager, (sometimes they are the dean of students, sometimes a counselor, depends on the district) is a good advocate, that might be enough for your son. I personally know that we would be on our own if he stays on just a 504. Plus, I want some protection for him when he gets to the high school.

I feel so bad for you. I know exactly how you feel. I'm still dealing with it. Unfortunately, you will probably have to fight for help for him. I think most parents do. My state has a parent advocate group called PACER that has advised me about the laws and they have been extremely helpful. I would think that every state must have something like that. I googled it and found it quite easily. Once someone qualifies, PACER will attend meetings with the family, and help make sure the laws are followed.

This is a great forum, I have met quite a few great people from this site who understand everything you are going through. No one else quite understands what we are dealing with. Don't forget to take care of yourself as well.

Good Morning Carolann,
We go to the cardiologist this morning. He and the neurologist are consulting on David's case. So hopefully we will get some kind of treatment plan worked out today. We had company from out of town, Grandma came to visit. That seemed to really help him. He pushed himself to do things while she was here. He had a blast. Still no work from the school. I gave them information last week. I'll be making phone calls next week. Luckily I am on disability from work. So I have time to deal with all of this. I will keep everyone informed of what's up. HAVE A GREAT DAY.

Thank you so much to all of you for your support and great advice.
I had a busy day today. Started out with the cardiologist, he checked on David. Is it normal for the doctor to not want to see him for 4 months? I know he is on new meds, but I would have thought he would want to see him sooner. Sorry that just popped into my head to ask. HeHe
Doc also wants him to stay home for the rest of the school year. So my next stop was the school. Had a great talk with his counselor who gave us some options for next year. We will be checking them out next week.
Next, I went to the school nurse who had looked over the information that I gave her last week. We talked nearly an hour. She wanted to be educated on dysautonomia.
I have paperwork to fill out to put him in homebound. Its okay for now but they don't offer all the courses he was taking. He will be behind on credits for graduation.
I must admit they,the counselor and nurse, were very worried about David and ready and willing to learn more.
I also will be getting a power of attorney for my fiance, so that he can get David medical attention if necessary and also get information from the school or doctors. Paul has been very supportive of my kids and I. He is truly a godsend to us. His mom was here for a few days and we enjoyed the visit.
It has been quite a year for our family. Moms just finished chemo for cancer, David being diagnosed NCS and I am out on disability from a work accident. I will be having surgery on my thumb soon. We are all looking forward to getting healed.
Thank you again for being here. God Bless.

Hoahmad,

You have had a busy year! I am sorry for all the medical woes and issues, but you sound like me, handling it one day at a time, even with the heartbreak.

I am glad your school is supportive. It took a bit for our school to get on board. I think since everyone had seen my son grow up, it was hard to think of him as someone with something chronic. Try to keep your son plugged into events and happenings at school. Homebound kids can sometimes be left out when it comes to social events. Does he have supportive friends? Hopefully, they will just adpapt like most of ours have and continue friendships, just in a less physically active way.

I am really glad you have a supportive fiance. That means a lot and the fact that he wants to take part in making decisions is fantastic! My hubby (son's step-dad) is supportive in the home most of the times, but all other decisions are on me. Very frustrating at times. It is working, but you are very blessed to have someone take the front seat with you.

Feel free to PM me. We have a lot in common (I am on disability as well).

Take care and God Bless,

Judi

Welcome to this forum Noahmad! I'm so sorry for what is going on with your son but I think you'll find this forum very helpful. I know that I have! My daughter is 12 and has been struggling with POTS for 13 months now. I know some other kids on here have a 504 plan but my husband and I decided to put our daughter in special ed and we have never regretted it. We've had much less stress since then. We don't have to worry about the days missed at school because of it and the school can provide all of the services needed for her. Maybe your son isn't as bad as our daughter, but it's just something to keep in mind for the future.

Just another piece of advice. After many doctors, some good and some bad, we finally took our daughter to a POTS specialist. I wish that we had done that right away. I was told by another parent that we would know when we were at the right doctor and she was right. My daughter may not be getting better instantly from this doctor, but I feel so much better knowing we are in the right hands. The doctor has so much experience with POTS and he knows the medications that work and don't work. Her other doctor had seen a few cases of POTS but wasn't as knowledgeable about it.

In defense of the doctors and the school - very little is known about POTS and dysautanomia issues. Research only goes back to the early 90's and many doctors and nurses have never even heard of these illnesses. I can't tell you how many nurses I have educated about POTS! You will have to become your son's best advocate and you may even have to fight for him when it comes to doctors and schools. It isn't easy as I know some of the others on this forum as well as myself have had horrible times with doctors and schools, but it's well worth it.

My prayers go out to you and your son and family. I look forward to seeing you on the forum.

Take care and God bless,
Brenda