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Melissa Let me add my congratulations!!! I thought of you today - I was over by Case today and saw all the students with from the bookstore. Then my daughter went to a concert at the Art Museum tonight and went by Case again. I am so excited for you!!!! Louise

I find this summer has been a tough one - partially because of the heat. I have talked to Rachel about a cooling vest especially for when she starts college and has chemistry labs. Right now the idea doesn't appeal to her - maybe if GAP starts making tough. When we were on vacation, just walking between the cars at rest stops was hard for her. It had to over 100 there - with the concrete and hot cars. Louise

Amy Was that your doc's recommendation of how to take midrodrine? My understanding is that you don;t take it late at night because it can cause supine hypertension. Most dosing that I've seen are 3x/day, sometimes 4/x day. I have never seen such frequent dosing. Louise

Also ask a lactation consultant - most hospitals have them none. They are much more knowlegable about breastfeeding issues than most doctors. Louise

Rachel takes 2.5-5mg tid. She tritrates it depending on how much she will be upright. It has helped her alot but it was very hard for her to get up to 5 mg; she had to increase using 1/4 tablets. She also had extreme nausea when trying to increase. Adderall made her severely depressed and loss toms of weight so tht stopped after a couple of weeks. Louise

Chrissy Welcome, my daughter Rachel is 17 with pots. I understand that you are going to John Carroll - near where we live. As you start your residential college experience, I would love to pick your brain on want helps you. Rachel has been homebound for HS (she's a senior) but really wants to go to a residential college. Actually - anything that gets her away of these 4 walls and me. Rachel also got sick in 2001 - in fact some of your moms posts have helped us alot (initially on the pedicatic network) Have you talked to BVR (bureau of vocational rehabilitation). You would probably qualify (Rachel has for post secondary services) and they can help with "services to help get a job"; that includes college. Louise

Linda Have you checked if the local CC has distance learning alternatives. If not check other state schools. You may find that physcially more tolerable. RAchel (17, POTS) just finished a full year of college credits through on line classes (for 11 grade) and will do the same for her senior this year. She could never had done that in class. Also, contact the vocational rehabilitation program in your state. You should qualify and they could help with expenses. A college education can be part of a path to work. Rachel has already been accepted and will receive help after HS I don't know if my daughter will ever be able to work full time but I am hopeful with a professional education that she may be able to support herself with a professional level education and working part time. I do not think an education is a waste for you. I strongly urge you to consider distance education option and the help of your state's vocational rehab program. Louise

I suspect that the diagnosis, in part, depends on the type doctor you see. My daughter, Rachel, was originally diagnosed with CFS and we went to see David Bell in NY. He recommended seeing Blair Grubb - that a lot of CFS is autonomic dysfunction. Here is a link to is newsletter when he describes CFS as a dysautonomia. He recommended that once Rachel turns 18 that I take her to Vanderbilt. http://www.davidsbell.com/LynNewsV1N4.htm Louise

Hi Kristen Welcome from another Clevelander. My daughter, Rachel, 17 has POTS. It is a small world. Have you been able to go to school full time. Rachel is looking at colleges (I have my masters from Case as well). HOw well did CAse help you with disability issues as an undergraduate? I thought it would be a tough for my daughter because the dorms are on north campus and not near many of the class rooms. Louise

Hi Melissa Welcome to Cleveland!!! I am glad that you made it safely. Rachel and I would love to meet you sometime. I Hope the wheelchair thing works out - I have been talking to Rachel about one for college. She doesn't like the idea of meeting people in a"granny mobile". Louise

Mine is because I am a certified nurse midwife(cnm). Also I can remember it!!! I try keep things simple. Louise

Melissa Yes you are very close to us. Actually, David Bell's (the CFS doc in NY) son now lives in Cleveland Hts and is attending Case too!! Another nice restaurant is Yours Truly near Shaker Square. I am trying to interest more local drs in this stuff. TEsting is good locally but followup - pretty traditional (ie not useful). Tommy's would be great - Rachel can't have dairy and loves their Rice Dream milkshakes. Louise

Melissa Welcome to Cleveland!! I live in Cleveland Heights. My MSN is from Case. My daughter (17)has POTs. Is your apt in Cleveland Hts? We used to live on Hampshire off of Coventry. Tommy's on Coventry is a great restaurant. My daughter'sCFS MD in NY has suggested that I get her into Vanderbilt once she turns 18 - he is very excited by their research. Maybe we could get together sometime. We are doing college visists right now. Louise

Dayna I know how you feel - I have tried a number of "alternative" methods for my daughter - none helped. The supplements might be worth a try but I admit I think chiropractors should stay with skeletal-muscle stuff. I looked up chiropractic neurologist - it is a chiropractor with an additional 300 hours training - not much ( (7 weeks!) and certainly not a neurologist. I think it is hard because traditional frequently doesn't have much to offer ( and they can be SO arrogant)BUT I also don't think that means that "alternative" will be much better ( though they tend to be nicer). If is cheap enough and can't hurt - give it a try. If anyone promises the world (traditional or alternative) - run in the opposite direction. Louise

Nina I didn't mean that BCP would necessarily help women with POTS but just that there is no medical reason not to try them. Even for women without any medical problems, while most do well with them but there are many who just don't like how they feel on them, get high BP, etc. or require finding just the right one. Hormones are definitely not for everyone (what is!) but sometimes women only try 1-2 brands and think if they feel poorly on those then there is nothing they can take. There are alot of BCP formulas - it can take some searching. I hate to see women miserable with their periods (on top of their other medical problems) when there are usually ways to help them. Nina, what is your subtype? I know mostly about adolescents with POTS/CFS type stuff. It is always challenging when taking care of women with chronic illnesses and their birth control needs. Most MDs never talk to women about these issues ( or the impact of a pregancy or menopause). Louise

Hi, I am a nurse-midwife who is the charge clinician of a large gyn clinic. Autonomic dysfunction is not a contraindication for BCPS. My 17 year old duaghter has severe POTS. Actually, many MDs in this field recommend BCP. They many help some women retain fluid and they can even out the effects of the hormnne changes around periods. The only one I would not recommend would be yasmin. It has a progesterone that is similar to a diuretic. How you feel on BCPs can only be determined by trying them. I would recommend a monphasic BCP ( no weekly hormone changes). Also if you tend to feel worse around your period, it is easy to skip periods with monophasic BCPs. Skipping periods with BCPs is well researched and safe. Another possibly is the ortho evra patch or the nuva ring. Louise

John Here is another link that may help http://www.pediatricnetwork.org/medical/OI/johnshopkins.htm Louise

HI Jessica I don't have POTS but my daughter Rachel does. I am also a nurse midwife ( thats want the CNM is). I do gyn only now. I have to say I think it would be a difficult career choice while ill. As a midwife, especially, in a home setting you have to be on top of everything at all times. Your mistakes can be lethal. Not to be discouraging but labors can last a LONG time. Midwifery is actually a very physically demanding job - again even more in the home that at the hospital. I only did hospital births so I always had backup. I also know some great lay midwife - very rewarding but very tiring job. It is very hard to learn midwifery part time. It really takes lots of hour and dozens of labors and deliveries before you have clue waht is going on and in a home setting you need even more deliveries to be safe. Have you thought of trying being a teaching birth classes or even being a doula (same time commitment but less responsbility so your health is less an issue. Since you are young, when you recover you will stillhave the option of being a midwife. I was 40 when I finished my CNM. Maybe you can make it a step process - physically less demanding jobs that prepare you for your dream that you can pursue when you recover. I do believe eventually there will be more treatment options. Good luck - remember there are many ways to serve women (after all that is what a midwife does) Louise

Hi Melissa Acutally I live in Cleveland Hts and used to live 5 min from CWRU. I have MSN from Case. Small World!!! Louise

Patti Actually, we live very close to JCU ( 5 mins) and my neighbor who lives across the street works there. It is a nice college. Make sure to try the restaurant on the corner (Pizzazz) it has great Italian food at a reasonable price. Some accommodations psoted elsewhere are No PE -Elevator pass if needed -Handicap parking -Extended test time -Rest periods and elevate legs when necessary -Leeway with homework and other deadlines -Allow classmate or other to share notes or record classes -Excused absences -Allowed to have water during class -Dorm room near classes -Dorm room on first floor with AC -Have water supply in room

Steph I just read your post to my daughter Rachel, 17 with POTS. She wants to go to OU. We live in NE Ohio. It is very exciting to hear your comments about OU. When did you graduate? Rachel will have finished 60 credits hours of college by the time she finishes HS (PSEOP in OHIO) She has been doing all distance learning classes. We hope she can handle on campus classes by being able a reduced load. She is also looking a small colleges (Juanita mainly). But alot depends on finances, her SAT scores are high enough to guarentee a full scholarship at OU. Louise

My daughter Rachel takes .1mg 1x a day. It helps her some - though she is still primarily homebound. She tried to increase the dose but got severe headaches. At least now she can go up and down the stairs without feeling as if she is having a heart attack. Louise

Hi Linda Wow. I am very happy for you - you have found a gem. I notice that you go the Cleveland Clinic. Do you live in Ohio? I am looking for a new PCP for my 17 year old daughter who has POTS. Our old pediatirician left the practice and while she misdiagnosed Rachel for a long time - she at least apologized once things were figured out. Her repalcement is a nightmare. I live in NE Ohio. Louise

Patti I forgot, Rachel is 17 and sick since 8th grade Louise

Patti Dr Doroskar has been willing to try the meds Dr Grubb recommended in his letter - that's all I want. I would like to see Dr Grubb again for more recommendations but I don't know if that will happen with his illness. Dr Doroskar has not really offered new txs but has been agreeable try try things Dr Grubb recommends or that we want to try that have research behind them. Actually I think it was you who mentioned Dr Doroskar to me on the Pediatric Network when Rachel 1sr got sick and I wanted tilt table testing. I am hoping to get her to know more about Dr Grubbs tx ideas. She says that she feels Grubb is superior to Chelimsky for adolescents. It is not perfect but at least she tries. She even wrote a nice letter to get Rachel accepted for wish through the Sunshine Foundation - so she takes her illness and its severity seriously. Louise