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pksmdrag
Regular Member


Date Joined Mar 2010
Total Posts : 72
   Posted 5/21/2010 6:03 AM (GMT -7)   
I was just wondering who out there has also been diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) along with fibro.  My daughter was diagnosed with that by one doctor but the doctor that we are currently seeing doesn't put much weight on that.  He feels many develop POTS from being so inactive (liek when fibro first takes you down to your knees!)  Looking for others experiences with it.  My daughter's heart rate will go from about 70 to 133 or more when standing.  You can see her legs and feet getting darker as she stands.  My daughter's school just doesn't buy this fibromyalgia diagnosis.  I feel like I need to have her evaluated for EDS (Ehler Danlos Syndrome) and Pots.  She definitely has loose joints and is very flexible.  Its like I need some concrete test to get the school to believe us and help us out.  Thanks,
 
Kim

SillyMe2
Regular Member


Date Joined May 2010
Total Posts : 110
   Posted 5/21/2010 8:18 PM (GMT -7)   
Really.. I would ask to see the medical degree of the school that can say what your child has and doesn't have. Seems to me they are trying to practice medicine w/o a license? I would ask for more tests though. Fibro to me seems to be secondary in a lot of cases. I could be wrong.. No I've never heard of POTS :)

Sheila1366
Regular Member


Date Joined Aug 2005
Total Posts : 384
   Posted 5/22/2010 3:16 AM (GMT -7)   
My daughter was dx when she was 12. The school was horrible. Her condition was so bad. The school needs a note from the dr. with the diagnoses, give it to the school nurse. Your daughter needs and IEP, individual evaluation plan. Have a meeting with all her teachers. They are required to supply her with all the help she needs. Don't let them bully you. Rattle some cages. I know the school year is almost over but if I were you I would try and have a meeting with the princple and let them know what you need for next year.

I hope that things work out for your daughter. I was told I had dysautonomia which is sometimes seen with people that have POTS. My daughters feet use to turn blue also. The blood would just pool in her feet. Her blood pressure would drop very low when she went to stand up, had near fainting spells all the time. Had a positve tilt table.

I know how hard this is. I also have FM. Taking care of a sick child is hard and sad. To see there youth taken away is heart breaking. Just be her #1 supporter and advocate, she needs that.
I struggle with FM,Raynauds Syndrome,gastroparesis, IBS and depression. I trust in God with all things. Been a tough journey and it's not getting any easier but thanks to God and my family I am not alone.


KellieJo
Regular Member


Date Joined Apr 2010
Total Posts : 382
   Posted 5/22/2010 4:31 AM (GMT -7)   
First off never been through dealing with a child with medical symptoms but have dealt with ADD issues with my children.

I have two, my youngest girl had problems in school. YOU ARE YOUR CHILD"S ADVOCATE, when my children attended public school I was a pain in their rear for 7 months. I tried the nice approach didn't work, then I went into bull dog mode.  Eventually I homeschooled them.

From personal experience, I had to be put on a beta blocker because I have Tachycardia, when my pulse rate increases I can't focus on anything else except trying to stay calm and lowering it. It is a scary feeling.

pksmdrag
Regular Member


Date Joined Mar 2010
Total Posts : 72
   Posted 5/22/2010 5:25 PM (GMT -7)   
Thanks everyone for your replies. The school received two of the same diagnosises from two different doctors, but still don't believe it. We hired a lawyer before the first meeting. Even with all of that in place (and them seeing her look sick so much of the time when she was trying to go to school some) some of them were still disbelieving and rather nasty at the meeting. The school psychologist who has never even met my daughter didn't even want to allow her to be tutored at home - even with a doctor's note spelling that out clearly. Right now they are providing tutoring and we are trying to get her soemwhat caught up (she will still be behind one class by the end of summer.) I am absolutely sure they will fight with us again in the fall if she isn't in school full time. Unless a miracle happens between now and then, I don't see her going full time. She is making progress, but it is very, very slow which I am sure many of you understand. Its been 8 months since she got sick.

KellieJo - did you homeschool your kids during their high school years? How difficult was that? Also, did the beta blocker help you alot? Thanks,

Kim

KellieJo
Regular Member


Date Joined Apr 2010
Total Posts : 382
   Posted 5/22/2010 8:11 PM (GMT -7)   
The beta blocker has helped but I have to watch my blood pressure due to the fact I have normal blood pressure and the doctor doesn't want it to go to low.

Yes, I just graduated my senior this year.....he is enrolled at a community college. He struggles, ADD, so we are starting slow. Every state is different, go to homeschool legal defense for what is expected in your state. I will warn you, you are not a brick/motor school so if you go through with this don't try to be. Plus, it will take work on your end.

southtexasgal
New Member


Date Joined May 2010
Total Posts : 3
   Posted 5/22/2010 8:27 PM (GMT -7)   
I would personally call the regional director for your school district. Through out a couple of discriminations, harrassments, and subjecting her to cruelty will get attention fast. Depending how comfortable you are with this being open and knowing that YOU can make a difference in your town for any other child-I would call the newspaper. They will write a story on it, demand a response from the school board.
My son at one point was being tested for cerebral tumor due to bleeding from his ear and frequent headaches. Most of these appointments were out of town-so he missed a lot of days. We had letters from the docs office for every missed day. The principal actually suggested to kick him out of the school so he can "start fresh" wherever he went to. The regional director nipped it in the bud and the principal-although hypocritically went along with it. The nurse and teachers worked with him to ensure that he was safe. Kept him out of running around in abundance and let him sit when tired, lay his head down when his headaches came in.
If it seems too much hassle, and you don't want to put your daughter through this, you can go to the board of education and formally pull her out of school. Sign her up for homeschooling. You may have to take her to school for yearly testing. So she doesn't miss out on socializing, you can place her in after school programs-then you will be able to gauge her good and bad days as to when to take her.

Sheila1366
Regular Member


Date Joined Aug 2005
Total Posts : 384
   Posted 5/23/2010 3:20 AM (GMT -7)   
I had to homeschool my daughter her senior year. It was tough, she was so sick. Homeschooling is tough, lots of work but it can be done. Just keep good records, you can test her from home for the end of grade testng.
I struggle with FM,Raynauds Syndrome,gastroparesis, IBS and depression. I trust in God with all things. Been a tough journey and it's not getting any easier but thanks to God and my family I am not alone.

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