Are You Serious?!

[puppylove]

My pediatric cardiologist diagnosed me with POTS about five months ago. Well my school social worker called him to talk to him about my syndrome and to get more information on me for homebound schooling reasons. I go to a therapist also because I have some anxiety too. He told the social worker that I had anxiety and mental health issues so he is not the one she should be talking too. He said talk to the therapist. Well, I am no longer eligible for homebound schooling because I have no physical health issues only mental ones. He diagnosed me with POTS!!!!!!! I have all the symptoms!!!!! I did a tilt table test and my heart rate increased 80 beats!!!! I don't know what to do because I can't get off the couch let alone go to school.

[Dizzysillyak]

I've had similiar problems .. Do you have this in writing ? Do you have your diagnosis in writing from your

cardiologist ? A copy of your ttt results ? It could be that your social worker

is confused. If not tho and you're being treated unfairly, imho, your best option is to see a specialist.

I had a gp once who told me he would get fired if he signed me out on disability anymore. He insisted

that I go see a specialist. It worked too. My specialist took care of this for me ... Tc .. D

[Christy_D]

Unbelievable! I'm guessing, even though he diagnosed you, that he is not a specialist in the dysautonomia/POTS field? The cardiologist who diagnosed my son gave us fludrocortisone, said that would fix it and sent us on our way. That is when we sought out POTS specialists. Are you able to seek out a POTS specialist and travel to see them if necessary? That is when we started getting real help for him physically and educationally.

His POTS doctor has always filled out homebound paperwork, paperwork for state funded on line classes, etc... You need to find a doctor who will advocate for you not only physcially, but for your education as well.

Christy

[puppylove]

Yeah I have it all in writing- the diagnosis, TTT results etc. which I gave to my social worker. I guess I'm going to have to find a specialist...

[puppylove]

My cardio treats a lot of POTS patients but I don't think he is a specialist. We are definitely not going back to him...

[Clairefmartin]

Look into seeing Dr. Rowe at Hopkins, he's a pediatric specialist! Also check out the DINET list for other specialists in your area. Don;t loose hope, keep going - you have a legit disease!!!! I"m so sorry you are going through this, I can't image.

[puppylove]

Thanks for replying. My Mom got me an appointment with Dr. Abdallah. I hope he's a good one.

[paona]

I agree you made need more documentation from a specialist in POTS explaining how this limits you in general and accommodations needed for school. Also I would have your parents (or you can) contact your district level special education director. They would oversee students that need 504 accommodations or I.E.P. for homebound. There may also be an advocacy group for children/adolescents with disabilities in your county/state that could help advocate for you. You may want to keep a journal of what your day is like and what you have to do just to maintain. While you maybe very able to explain what POTS does to you, if you are a minor you need to have an adult advocate for you and go along side you with this. Even if you aren't a minor, an advocate could take some of this burden off of you.

[Katybug]

Hey puppylove,

Sorry this is turning out to be so difficult. I just wanted to chime in to say that because my medical records from 4 years ago when this started, show that I was treated for anxiety (which we know now was a wrong diagnosis...I had POTS), I have had some issues with people taking me seriously regarding my POTS. I was correctly treated for depression in high school and college but here's the rub in my mind... I could be nuttier than squirrel poo and also have POTS, or, I could have not one mental issue and have POTS. They are two separate entities but when there are mental health issues documented, people seem to forget to read the rest of your chart. Please, please do what you need to do to have your POTS documented (and in your case, re-documented) so your path will be a little easier. Once I had the documentation from a neurologist who is known to be a POTS expert, it really changed the whole playing field with other doctors and with several insurance issues. The POTS neuro also much more clearly documented the disabling nature of POTS because he sees its effect on his patients daily. His notes were worth more than all the other documentation I have.

Keep your chin up...things have a way of working out eventually.

Katie

[Clairefmartin]

Thanks for replying. My Mom got me an appointment with Dr. Abdallah. I hope he's a good one.

He's supposed to be great. Glad you are seeing him. Best of luck!!

[kclynn]

When do you Dr. Abdallah? He should help you out, my son saw him Also contact Dynakids. Debbie Dominelli should be able to help you and there is actually a ton of information on the website. I believe there is information out there that documents that anxiety is sometimes present as a pysiological result of the pots. It IS medically verifiable.

A really good analogy is that CANCER patients also go to therapists to help them cope. They often also have anxiety as the result of their illness. Would they deny homebound based on the fact that they see a therapist. It sounds like you need to get really pushy. I would send them a certified letter stating that your denial of services is prejudicial and that you will take it to court if that is required, but that you would rather not do so. Someone mentioned an advocate. That is an excellent idea. Have you joined the Dynakids. I know their are other kids who have been throught the same crap, unfortunately.

BTW, have you contacted your therapist? What is their position on this? That could make a huge difference if they will validate that your anxiety is a result of your illness.

Good luck, this makes me truly sad. My son also was homebound all last year, not being able to get off the couch.

[HopeSprings]

If you were my child I would be calling that Dr. to let him know that his ignorance and incompetence just cost you much needed services. !!!! Moving on....... glad you found a good Dr. Hope you get all that you need.

[puppylove]

My parents have called three times today and got the answering machine. They never called back.

[kclynn]

They called the Dr.? Also on the Dynakids website is a brochure your can copy off in a booklet form called something like Your Student Has Dysautonomia. It even has information in it on people who have dysautonomia may have anxiety, not the other way around. It has ALOT of information in it specifically directed to the school. Also, the have a video called the goofy slipper lecture which has two parts, 1 describes the physical part (whats happening and why do you have all those symptoms) and the 2nd part is again directed at the school and a lot of the things you need. Now, a lot of those things will be for after you actually get back to school but they are not helping you do that right now. These tools will help to validate everything for you. Dyna was especially formed to help kids and parents and families like yours. Call them

Trach (Trish) gave you very good information in your other post on how to pursue your rights. I give you a lot of credit, you know how to reach out and are obviously smart and articulate. Honestly, I don't know how they can't take you seriously, and they will if you make them. It's time for you to start calling the shots. Sorry if the school is too busy, you have been more than patient and it is past time for them to help you. Paona also gave you good advise on getting an advocate.

I was just reading back over your post. It is possible the Social Worker was asking leading questions? Perhaps she misinterpretted his answers? It is possible he said you should be in school (and that would be best if you can work your way to get there even a little each day) But, that takes work and support from the school as well. There was no way my son could go to school all last year so I do understand where you are right now. Just saying the Dr. could have said something like that which could be taken the wrong way. It is also possible your Dr. doesn't want to get involved with the school which is sad but you have already taken steps to see Dr. Abdallah, so I wouldn't spend too much energy on the current Dr. except to possibly clarify what he told the school people.

Also, it is not up to the school people to interpret your diagnosis and what you do or don't have. You already have proof of a medically verified disability and they really have no choice but to accomodate you. If they are ignoring you or refusing you services you certainly should have a legal case against them. Do not give them all your records with the notes on every discussion with the Dr. This is none of their business. All they need is your diagnosis from the Dr. They will want them and they will do things like this to try to avoid giving you services as well. I would question everything the school tells you. It is unfortunate (understatement) that you have to deal with this and try to get well too.

I have been thinking about you all day and this makes me very sad I hope you get in to see Dr. Abdallah soon. I know he does get cancellations and you are close so you could get there pretty quickly. Call and check for cancellations. Also, let the office people know that you could be there on short notice. They actually called me to see if we wanted to come sooner. I hope things go well for you.

[puppylove]

Okay, so here is where we are now. The doctors nurse called us back and she said that my cardiologist had spoken to my phsyciatrist and they had agreed that I was a very aniouxs individual and the school would deal with my phsyciatrist instead of my (old) cardiologist. Well, I have only been to this phsyciatrist once and I told her everything about me and she was not familiar with POTS at all and told me I have anixety. So then the cardio called my school and told them that info. and that's where we are currently. My parents are setting up meetings with the principal and they might go in to all the legal issues, disability stuff, etc. if they need too. Thanks for all the advice- we are going to work with Dynakids and check for cancellations too.

[Trach]

I totally agree with KCmom. Considering the problems you have already had with your school counselor, there may be a chance that she misinterpreted what the doctor said. As i told you before, our school district was great to work with.

However, there were still instances where some medical issues were lost in translation with my daughter's school. (After my daughter started passing out, I told her wizened "hard core" school nurse what to do if Rachel fainted. Her nurse brushed me off as if I was crazy - she had seen hundreds of kids faint. A few weeks later I received a call from the school that Rachel had fainted. When I got to school - there were TWO ambulances in the driveway! My daughter was fine but the school nurse was freaked out! The reason I am telling you this story is that school personnel do not listen even in the best of situations.

Sorry for the digression....

If your doctor already signed the required forms for 504, that is all that is required by law. I have never heard of a school contacting a doctor directly without the student/parents present. I have friends who have seen Dr. A and absolutely love him and his office staff. So I know you will be in good hands.

I am so sorry you are having such a tough time with your school. I hope your parents will be able to meet with the 504 director and get these issues worked out. Hopefully they can also clarify what the doctor told your counselor.

[puppylove]

That's the thing- my old cardiologist would not sign the papers. I'm not really even sure why... My mom spoke directly to the social worker and my cardio nurse so I don't think there was a mistake. It's ok though now that I'm going to Dr.A.

[juliegee]

Brianna-

Let's say you have anxiety (which we know is secondary to POTS.) It is still preventing you from attending school full-time; thus you are entitled to a 504 plan. I'd say time for the legal stuff NOW. You can't waste any more time waiting for them. Here is a link to exactly what a 504 plan is & what you are entitled to: http://www.theparentaladvocate.com/what-is-a-504-plan.htm

It's crystal clear that your cardiologist doesn't have a clue as to how seriously POTS can affect us or impact our lives

Know we are all fighting for you.

Hugs-

Julie

[jangle]

I agree, you need to get accommodations and I would just see this incident as a step back rather than a blockade. There's no way they can overlook the severe symptoms associated with POTS.

.

[Trach]

Doctors....Agh!!! I am so very sorry you are going through all of this stress. You are right, Dr. A will help you get better and get everything straightened out with your school.

I have a friend who moved to Virginia for 2 1/2 months so that her daughter could be treated by Dr. A on a weekly basis. Her daughter was wheelchair bound and passed out constantly. After 2 1/2 months of being treated by Dr. A, her daughter returned to school on a part time basis walking on her own.

There is hope.

[puppylove]

Yay! I'm so excited to see him now. It will be so nice to go to a doctor who actually knows what POTS is all about.

[Trach]

One more thing.....

I would also ask Debbie Dominelli @ DYNA or call Dr. A's office to recommend a new counselor/psychiatrist in your area. You may be able to get an appointment before your doctor's visit. Finding a good counselor and/or psychiatrist who understands dysautonomia is nearly as important as finding a great dysautonomia doctor.

[kclynn]

I printed off some things from the Dyna website and gave to my son's Psychiatrist. I think I did the brochure about your student has dysautonomia and you have dysautonomia, that way he had an idea about what the school should be doing and the challenges face by a student with pots at school. You can also order those brochures and they are a little more professional looking on glossy paper.

He knew nothing of Dysautonomia, either, but it was obvious he took time to read the information and "got it" My son's first psychiatrist also "got it" and was really nice but she wasn't a good fit at all. His current one is amazing. I think this isn't unsual to have to try a couple out to find one who you feel really comformtable. Maybe send the information ahead of your appt with a brief cover letter to make your first appt more productive.

[mully2014]

Wow! Sorry you are going through all of this... hang in there and don't give up on it because they have to accomidate for you it just sounds like it might take a little while for them to understand that. The new doctor will definetly help. I have had problems with people thinking I'm just stressed out or something (I'm not), but I learned that you have to keep defending yourself and believing that you have every right to get the accomidations you need and don't hesitate when someone accuses you of not having a REAL illness because if they think that you doubt it then they most definetly will. Hope this gets figured out really soon.