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I received a phone call from the head physical therapist in the group Rachel saw over the summer. Rachel had PT (primarily water) with a PT group affiliated with a nursing home. She wanted to talk about a presentation that she is putting together for PTs about dysautonomias and the role of PT!!!! I was so happy - this woman was great. She has already done some research and wanted more info about both Rachel and dysautonomias. I did give this site as a reference. It is exciting to that more are interested and learning about these disorders Louise

WOW!!! What an honor! Congratulations. I would ask you to post it but probably not a good idea if you are trying to get it published. Louise

Hi Ernie I found this link that might help: http://www.nlm.nih.gov/medlineplus/ency/article/003924.htm Good luck Louise

Let me add to the congratulations - great job!! When I won the complaints against my daughter's school district, they had to reimbursement me for Rachel's expenses. Most just went to pay off bill but I used a little to buy a victory tree for my front yard (river birch). I see it every day. Find a your victory "tree" - whatever it is. Louise

Thank you all for the great ideas and different perspectives. I should explain that Rachel does have accommodations through the disabilities office and that she has always contacted teachers (on her own) at the beginning of the semester. She includes info about her illness. She has contacted the prof each time she would be late and has let him know that she is very ill right now. From her experiences with other on line classes, there are things he could do to make it simpler for her too. There are ways that the drop boxes have been set up for another class at the same college that didn't require multiple contacts to submit a late assignment. I should also point out she is a high school student taking college courses - so I feel I still have a role. After feedback from other moms in similiar situations, I contacted the disabilities office to let them know that she is particularly ill right now and asked them what other accommodations might be possible. I drafted a letter for Rachel to send to her professors and emailed it to her. It is her decision follow through. But again, she did contact him and does he have a letter from the disablities office. I get the feeling he is the absent minded professor. Also, since everything is online - there is no physical contact. I think that makes it harder too. I have always been very proud of how well Rachel's advocates for herself. I have NEVER been involved in contacting her teachers. It is always been her. I do understand the issues around "forgiving" assignment. Rachel believes all the work is necessary but perhaps some things could be "modified". Faxing homework instead of typing it. Word isn't the best format for showing complicated physics work. She is also taking calculus and that is what they do. Most people do calculations by hand. Typing up math calculations is more tedious. Patti, I am sorry to her about Chrissy's difficulties. I know for even healthy students the final few weeks can ****. I think I am going to see about getting a couple of bags IV fluids in to Rachel. That might give her some short term relief. We also decreased her midodrine, she seems to be able to think better. Louise Louise

Thaks Steph Actually, Rachel received her acceptance to OU yesterday!!!!. I think some of her sudden resistance to asking for help is that in the process of applying to college, Rachel has had to reflect on the "nonexistance" of her HS years. The full weight of what this illness has done to her is suddeningly overwhelming. There is alot of anger, frustration, and denial - all perfectly appropriate but difficult. She has always maintained a very positive attitude so I expect that there is some grieving that needs to be done. Everytime she has to email a professor about needing extra time - it becomes a "reminder" of her situation. I would like there to just be extra time - no need to request each time. She has been up until 2-3 am for 3 nights and nothing gets done because she is so tired. She is like a zombie. I am trying to be careful about compromising her trust. It is so hard because she is making things worse than they have to be. She can hear nothing that I say. I know some of this is just being 17- hey she is a teen. Louise

HELP!!! I need some help from all those who have dealt with college and chronic illness. My daughter, Rachel, is a high school senior who takes all college courses on line. She is pretty much home bound. In the junior year she managed this with few accommodatons - this year she is sinking. She has accommodations for more time and flexable deadlines. She is very tired and really struggling. Unfortunately, she is also reluctant to request extra time. She feel she should be able to do this like other students!!!!!! Ok, she is driving me nuts. (Sorry Rachel if you read this). To get extratime etc, she has to contact the prof. each time - which seems to add to the stress of her situation. When you have gotten really sick have professor's ever modified or forgiven assignments so that you could catch up? Ever though I know she doesn't want me to, I want to contact her professors myself (there is a letter at her colleges that allows me access to everything). I am trying to figur out what is reasonable to ask for . For physics, (which she loves and is very good in), I would like to ask that instead of having to type up all homework, she can send in her handwritten work - mainly the calculations. Right now they have to type up every problem with a explanation of theory behind it. It is a huge amount of work. For labs, I would like her to submit the data and analysis, again handwritten - instead of a full lab report. Her lab reports have been so good that her prof. requested that he be able to use one of hers as a example of students should be doing!!! The full reports are up to 15 pages typed. Does this seem reasonable? It does not eliminate anything essential but decreases the final polished project. Rachel is very frustrated. Any suggestions? She has all A's in her classes and only 4-6 weeks left. The teachers can see that she is a good student. Thanks Louise

Rachel does well on the Mylan generic but was sick as a dog on the red one - (can't think of the manufacturer) I had her doc write for the Mylan generic only DAW. Some do well on brand only and no generic. louise

Julia I feel your pain regarding the dental bills. I have always had a lot of dental problems. When I was younger, I spent a fortune on a total mouth reconstruction - jaw surgery etc because of a congenital abnormality. Of course, 25-30 years later it needs to be redone. There is no way I can afford that ($15,000-20,000 ) with Rachel's medical bills and college approaching. I avoid the dentist because I hate the lectures about how things will only get worse but - I just can't do it now, maybe never. Geez, the first time around I had to delay my own college because of the bills. We never had insurance when I was growing up so nothing got done until I was old enought to arrange on my own. I so envy people with naturally normal and healthy teeth/jaws. Louise

Angela I can recommnend David Bell near Rochester, NY. He has tons of experience with both CFS and POTS. He does not directly manage Meds but will work with local doctor. He is on the NIH CFS Coordinating Committee and tends to hear about new research. He is the doctor that recommended Dr Grubb for my daughter, Rachel. Here is a link to his web site newsletter http://www.davidsbell.com/index.htm One warning - there are no new grand treatments. He has no magic pill. Louise

Melissa I can second Dr Doroskar as a back up cardiologist. I told her she has been "chosen" to be Dr Grubb alter ego. (She laughed). I hope by exposing her to his ideas that she will become another resource for people. She wrote the Rx for Rachel for midodrine based on Grubb's letter. She had never used it for POTS before. Louise

Evie You might want to try David Bell in Lyndonville, NY. He is great - his specialty is CFS. Here is a link to his newsletter. http://www.davidsbell.com/DSBNewsletters.htm I don't know if he will have any grand new ideas but he someone worth staying in touch with - he has a lot of contacts in the field Louise

Melissa Unfortunately, even though I work in health care, I can't recommend anyone. I have yet in meet any of my PCPs. If you need advice on a gyn (or midwife!!) that I can help with. Louise

One of the things that makes evaluating drugs (or anything for that matter)so difficult is while everything has risks - so does doing nothing. For example, birth control pills do cause a small increase in the risk of blood clots but the risk for blood clots is much greater if a woman gets pregnant. Even lifelong abstinence or natural family planning has risks, there is an increase risk of certain gyn ovarian cancers in women who never have children or have never used hormones to suppress ovulation. So lifelong abstinence increases certain cancers (though decrease the risk of cervical cancer). Antidepressants have risks but so does clinical depression - dead woman have dead babies. There are many drugs that have risk in pregnancy. What people fail to take into account is the effect of the untreated illness on the pregnancy. These issues can be very complex and really involve a risk/benefit analysis. It can make managing a pregnant woman with medical problems very difficult. Louise

Rita Thanks for leting us know your experience. What meds are you on now? Louise

Melissa I am sorry it has been so hard for you. I know your mind understands that it is ok to go slower but your heart is still broken by it. I am watching Rachel struggle with her on line classes and can barely control the anxiety attack I feel coming. I just want her ( and all of you) to have a chance to follow their dreams. OK, now I'm crying. If it make you feel better I didn't get my masters until I was 40 and I didn't have a dysautonomia. I wish my life could have been easier and I could have done more when I was younger but it was what it was. At 46, I bought my 1st house. THere are lots of things that slow people down but just try to keep moving forward. THe time will pass anyway - you might as well be headed in the right direction. I live nearby - if you need a Tommy's delivery of a emergency milkshake let me know . I hate these illnesses I HATE THEM I HATE THEM. I think I going to get myself a milkshake. PMS and a sick kid are getting me down too. Louise

Rachel started water therapy this summer. It was the 1st time in four years that she felt ready to exercise at all. We did at a PT facility attached to a nursing home. The PT were used to "tiny" improvements since they deal mostly with the elderly. It has helped Rachel alot. She progressed to a exercise ball at home now that her insurance has run out for PT. It helped her regain enough muscle tone that she can sit in a chair without pain for a few hours. She even started play piano again!!! Louise

Hi Patti I am very happy to her Chrissy is doing well at school. Regarding the nausea, it could just be a random event. The fatigue could be environmental but not in a way that is related to the air etc. She is probably really "energized "by school but home is just home. How did BVR go? Louise

Patti I have not had any trouble getting into the PN. HOw long have you had this problem? Try not to be "put off" by the group orientation - you will get a chance to talk to an individual case worker after the meeting. Good luck!!! Louise

Hi Patti I have coped part of my post from the PN. The goal "rehabilitation and vocational services with the goal of employment" When we went to BVR, we brought all her medical records. After a group session where they emphasized that the goal is to get people working , we met with a counseler. We presented the documentation and explained that Rachel needs a college level education. She may never be able to work fulltime but with a professional degree she could still support herself even if she could only work part-time. We got approved on the spot - thought there is a waiting list of 3-6 months for services to actually start. These are not scholarships - but "plans for work". When you call they will again say - do you understand this is for "vocational rehabilitation". YES you do!!!! The goal is to get Chrissy working and independent. Louise

Hi Pete I am the mom of Rachel (17) who has POTS. It is great to have a dad on board. I bet that you understand more than you think. Welcome Louise

Wow I am really surprised Yasmin is working out ok for both of you. I don't even like using it much for healthy patients. - too many drug interactions and concerns regarding potassium levels. But I guess it shows sometimes that you just have to try something to see how your body reacts. I would still urge caution - it you try it make sure to read the drug interactions which can mess up potassium levels. Louise

I wouldn't recommend Yasmin to someone with a dysautonomia. It has a progesterone that is chemically related to a diuretic (spirolactone). It also has many more drug interactions that can cause a potassium imbalance. Not the right pill for POTS/OI. I am a nurse midwife at a large gyn clinic. Almost any other pill would be a better idea or consider the nuva ring - my patients love that. Louise

Chrissy THE FOOTBALL TEAM I think that you should check and see if your mom needs resuscitation. ARGHHHH!!! Ok, I am calming down. Sorry - as the mom of a 17 year old daughter, that strikes terror. ON the other hand, I am glad college has started off so well. I know those "social moments" must be great. Rachel has been so isolated these past 4 years. I know you have family near by but if you ever need help, remember that you also have a POTS mom nearby too who would be happy to help. (Let your mom know that I would also be willing to chase away the football team!!!!) Louise

Hi Chrissy Rachel tries not to use her handicap sticker unless she really needs to. I have to admit I have been know to fake a limp as we walk away from the car so that she won't feel so self conscious. I would rip someone a new "********" if they approached Rachel and me when using the handicap pass. She has suffered more than most of them will ever suffer. Louise