Daughter Diagonised With Pots

[thejohnsongang]

Took our daughter to John Hopkins Hospital yesterday to see CFS specialist ( Peter Rowe)for her symptoms. Come to find out my gut/mother feelings were correct. She does have POTS as well as CFS and her food allergies (EG) are acting up again. I was devestated by the news. He also dx her with ADHD..needless to say her medication list is pretty long. We spent 4 hours with him going over everything and doing testing. He is a wonderful doctor. Anna had seen him before when she was 6 for her food allergies. He was a regular pediatrician then. His son also has POTS/CFS as well as ADHD so he understands it from a parents point of view as well as a physician.

This disease is bad enough for me to deal with and I have endless days of depression/anger for having it and for it robbing me of my ability to do things with my kids like I want/need to. Now I have to deal with the fact that I have passed it on to my daughter. Does anyone else feel this way? Have any of you unknowly or knowly passed it on to your kids? How do you deal with it and not feel guilty?

Her dip in BP and spike in HR ( a 48 bpm increase) was larger than mine, but due to her athletic abilities she tolerates it better than I do. He had her do a different version of the TTT where he had her lean backwards aginst the wall for 20 minutes and checked her BP and HR every 3 minutes and checked her symptoms....at 17 minutes she got so dizzy she hit the floor...but did not actually pass out. He stopped the test then. It was very hard to me to listen and learn about her...but at least I am educated on the disease and know what we are dealing with how to help her.

I am just so @#%^& mad and angry about this disorder...ERRRRRGGGGGGGHHHHHHH!!!!!!!! I just want to scream sometimes. Just needing to vent to people who understand. Not many in my world do except my husband and mother...and they are a god send to me. Anyone who can share their wisdom with me...please do so.

[MomtoGiuliana]

I hear your frustration, feelings of guilt and fears and anger. I also have a gut feeling that my 4-year old will have full-blown POTS one day as she shows indications of it. It is painful for me to think of her having to suffer the disability, discomfort and fear that I have. I hope for our daughters it will be mild, and that better treatments, perhaps even a cure, will be found in their life time. I am thankful that if this is what we have to have that it is not something life-threatening.

Katherine

[bren62]

My daughter is dealing with similar issues. She had a positive TTT a year ago but not sure if it's NCS or POTS because the doctor interchanged the terms and was pretty clueless. She has a sleep disorder and ADHD also. I'm taking her to Vandy in June so hopefully we will have a better idea what is all going on with her after that. It has been a difficult 18 months dealing with all of this. Her doctor kept telling me she would be better by now when she is worse then ever. It is difficult to see our children suffer and stand helplessly on the sidelines not knowing what to do. I have spent many nights crying myself to sleep and praying for answers.

I don't have POTS that I know of but syncope episodes run in my mom's side of the family. So there is a very good possibility that she has inherited a genetic trait that made her susceptible to this. It is easy to fall into the guilt trap and blame yourself for her illness but none of us have control over our genetic makeup. Since you have the same thing it will be a little easier for you to relate to her and know how she feels. My daughter gets frustrated with me at times because she thinks I don't understand but i try my best. It's just hard as a mom to know when to push and when to back off.

If you ever need to vent feel free to PM me. I understand what you are going through and sometimes it's good just to sound off to others who are going through it too.

Good luck to you and your daughter

Brenda

[pat57]

it is heart breaking to get such news. You seem to have articulated your feelings well, and I think that's number 1 for copeing. And we'er all here -as is your husband and mother- to listen. SOOOOOOOO you are on the right road.

[MightyMouse]

Wow, that's got to be tough news to adjust to! The only good thing is that you certainly know how to get the correct treatment for your daughter and advocate on her behalf.

Nina

[nadine]

I do understand your emotions.

My daughter was diagnosed with CFIDS just as she was going into high school and she has struggled for the last 8 yrs with this- in a very big way.

She was 2 when I first became ill with CFIDS and I couldn't care for her for months on my own. Then again as she was going into first grade I spent several weeks in two dift hospitals, in two dift. states. It was more devastating trying to deal with the emotions of it all as it was such critical times in her life- so much is happening at any age, but ages 2 and 6 were huge.

Then things were better for several yrs. when my illness was under contol and she was a delightful, active, social, athletic kid and then her whole life changed after an illness. Around age 14 she was finally diagnosed. I have asked so many times, why, why, why her after all she had to suffer with my illness. Then at some point you just go into day to day coping.

High school should have been the best time of her life, it was not. It was a constant battle between her health and wanting to stay in sports, school and have a social life. She was hardly in school her senior yr, but managed to graduate with more than enough credits and did go off to college for a year, but ended up coming home as she was too ill.

She is still going to college, but goes nights and works very part time, lives at home- allowing for lots and lots of rest. We worry what her future will hold as she has now seen me so disabled the past two yrs. with NCS and health probs. but I have to remember that we have seen many hard times and we will get through it with the help and support of each other and continued trials with medical treatment.

There are no wonderful magic wands that I have wished for over and over, but you can advocate for her and you will be able to understand what she is going through. It is interesting that even though we can understand and relate, it is still a mother/daughter struggle at times - as they often think that you still can't understand their life, no matter what we have experienced- if you know what I mean.

[juliegee]

I just want to pass on a big hug to you. My son and I both deal with dysautonomia. NMH for him and POTS (at least) for me- I haven't done a formal TTT yet. Dr. Rowe is his ped too and a real gem for us. The second doc who totally believed him and didn't accuse him of mental illness, etc. (The first was his motility specialist at Hopkins) I recently spoke with Dr. Rowe about my POTS and recent GI motility issues. He wasn't surprised at all. He said that many of his patients have another family member- parent or sibling similiarly affected. You guys aren't alone and I'd love to offer support in any way.

Hugs-

Julie (and Mack 14 y/o)

[sally]

Hi,

I'm sorry to hear that your daughter has been dx'd with this problem. its tough i know.

The best advice i can give you is to learn about how to best help your daughter get through her day at school without expending too much

of her precious energy. You will have to be the advocate for your child in school for things such as no gym or limited exercise if needed. have someone carry her

books or note taking in class, extra test time, etc. some of these things you may already by aware of. Just making little changes can make a huge different in how someone may feel at the off the day I think. for our daughter, she stopped taking gym entirely and typed everything on a laptop instead of hand writing, and received teachers class notes for studying to save her from long writing. you can also see about books at school and books at home to avoid the carrying of books especially when she gets into the upper classes..they always weigh a ton.

We made a lot of changes for our daughter in school to help her achieve what she wanted without wasting alot of energy that she didn't have to waste. Plus she has EDS so she had alot of pain to deal with as well. We also tried our best to make sure she understood on listening to her body and act accordingly to how she might be feeling that day...its all about learning balance. We praised her achievements highly no matter how little they may seem to others because when she did something and accomplished it especially while feeling like she did it was a huge achievement. Plus it helped give her encouragement when she was feeling like she couldn't do it. she gave up alot of things that she loved in high school due to health but we replaced them with other things that she learned to love just as much.

I know you are feeling angry watching your daughter deal with this but try your best to get past the anger, guilt & frustration that you feel about passing this on to her, it does no one any good especially for you and your daughter. Tell her that at the very least you can relate to what she is feeling and experiencing as she grows up learning to live with this disorder. It will be a valuable tool for her in the future. And she will take comfort in knowing she has someone close that truly understands what she is experiencing when her friends do not. I passed EDS & the autonomic problems onto both of my girls plus one has ulcerative colitis to boot. The guilt is a hard pill to swallow but somehow you just have to find your way to understand that you did not purposefully inflict the disorder on her so it is not your fault. You can have perfectly healthy parents and have a child that has a genetic disorder that has been carried down for generations unknown to anyone.

Hopefully as your daughter grows up things will get better over time. For us, learning coping skills and coping tools to get by better in life makes things a little better but acceptance was key to be able to get past all the negative stuff that just upsets you. I did allow myself time to get past these feelings, I'm not saying don't ever feel them, that is natural but things will get better with time.

Our girls are now 22 & 25 still have the same health issues and deal with them on a daily basis and we have climbed many mountains at times as I call them so I can totally relate to what you are feeling. Our oldest just graduated college (teaching) in Jan (took her longer after many set backs due to health but finally made it). Our youngest will graduate this May and desires to go the medical school if possible. (she was in a terrible car accident so we're working on that to get over that hill) She has had just as many trials and tribulations as the older one. This is after many tears, fears & feeling like giving up so many times I don't care to count over the years. We've climbed SO many hills & mountains over the years with health issues that I don't think anything of it anymore, I just consider it one more stupid hill to get around and how do we do it as quickly as possible to get things back on track. I'm not telling you this to brag so please don't misunderstand me, it?s to give encouragement that things may work out too.

Good luck to you and your daughter and I do hope she feels better soon.

[Guest tearose]

I am sorry you got this news. I know we always want the best for our children and to know that she has these challenges to deal with is a very heartfelt sadness.

The only wisdom is that she is blessed to have a mom who will be able to reallly understand and role model how to cope and live a good life while having to deal with these things. Think about how you are the adult and how frustrating it is...how can you turn this around and offer your daughter coping skills and a hopeful attitude?

Think as a child and try to get what she feels...ask her what she thinks and feels and needs to cope. Ler her know her condition is going to be different from yours is someway since no two people are the same and ask her to help you understand what helps and what doesn't.

She has the best of physicians and a family that will try to understand and help.

I don't think you could do more!

tearose

[masumeh]

No cures, but a big hug coming your way!!!

Try not to indulge the feelings of guilt with reinforcing thoughts. You know that you wish she were healthy and strong, and that you would give everything for that to happen. You know that you didn't "Pass it on" willingly. And I'm sure that you also "passed on" many, many great qualities that add to her character and life!!

Maybe hereditary illness is part of a wisdom in creation, that the child who needs understanding and knowledge about a disease is given to a parent who has just that.

I don't know if you are religious..but that is what helps me...to be sure that it's not my plan, it's God's plan...and if I don't understand, at least I know that He does, and that there is a reason somewhere. Don't want to preach, but I just think this is what most ppl believe, in most religions (personally, I'm Muslim, but I know many Christians, my Gramma for one, who believe the same)...and it helps during a moment of crisis to remind ourselves of our deep-down guiding principles. This is the biggest way I cope with the fact that I got this disease from a virus, and I know who gave me the virus, and I don't want to blame him. I just say, I know that God planned this, and God knows why. In the end, I look forward to His reward for my struggles.

I hope that your daughter finds strength in you, and that you are able to overcome the temptation to blame yourself, while you are obviously blameless and a very caring mother!

[anna]

It's good to scream sometimes.

All my 3 children have some form of autonomic dysfunction it came with thier EDS packedge! which they inherited from myself, It's how things happened. I had no idea about EDS and ANS dysfunction till after all 3 were born so could have done anything about it anyway. I try hard to keep well'ish so I can help my kids when needed, in a way we are best placed to help our kids because we have a first hand idea how and what they are feeling, I'am always saddend by families that have no empaphy for their poorly kids, or other poorly relatives.

Hope you find lots of new enegy to help your daughter achieve what she wishes.

Take care,

Anna

[thejohnsongang]

Thanks for all your support and well wishes guys....It sure helps. This site has been a god send for me many times over. I did talk to my daughter yesterday about joing the teen/youth version of this just so she can talk with others her age to get the same things I get from you guys. It has been a long hard road with Anna, but I wouldn't change it if I could. Even though I get mad and angry at the diesase's that afflict her..she is a wonderful person because of it. she has such empthy at at 15. Anna was very ill when she was born and at age 6 I almost lost her and then Dr. Rowe got her straighten out..Food allergies, she had EG. She has been a failrly normal child since then and had seemed to outgrow her allergies. Then over the past couple of months the dizziness, the headaches, the allergies acting up and sleeping forever....Normal 15 year olds don't sleep that much. Finally some answers..Not the one's I want, but answers none the less. Now I know what I'm dealing with and can educate her on how to listen to her own body to know what she needs and when. She has always been very active in sports (SOFTBALL) and this is something she will have to take in stride. I have set up special accomidations at school for her, but none that set her out from her peers. Water with her all the time, salt tabs ever 4 hours, being able to get up and move when needed or go lay down when needed, eat a snack every couple of hours, etc. The school has been helpful so far. She will have to gauge herself with softball as she plays both high school and tournament ball over the summer. She's the starting second baseman on her Varsity team..Yes!!!Varsity in 10th grade. Doesn't happen to often. She also plays 2nd base on her tournament team. Her coach for tournament ball is awesome and we have been friends for about 4 years...he will have no problem making accomidations for her, we just need to get the school and the high school coaches to work together to make the accomidations for her. But of course when I can I will and If I can't then Dad sure will. He goes to all of the games and practices and helps coach her tournament team. The anger is going away and I'm going into fix mode. Making sure everything is in place for her..her medications are on time and her accomadations are always there. Mommy mode is working finally after the shock of learning everything. We also moved into a large house last month with my mom and uncle (see just finished moving on chit-chat form). That will help alot having extra hands and minds around. My husband has been bearing the load of everything since I took sick years ago. I became unable to work last september and poor hubby has done it all. It helps to take the load of of him some. He is a wonderful man and works his butt off for all of us. He is my soul mate and best friend. Now he will fianlly get some time to rest as there are other people to help. I pray to god every night to make Anna's life easier than mine. She wants to go to college...she want's to be a special education teacher. She currently is the vice president of the best buddies club at school, which is a group that works with and supports special needs kids to keep them in a normal high school setting. Each member of the group is assigned a buddy to look after them. They help them with their school work, social problems and such. They also go out in public together to do social events and talk daily by phone. It's a wonderful group that Anna got into years ago and loves. It's what made her want to be a teacher in the first place. We are not changing anything for her. We will see how she does with meds and with learning to listen to her body before we decide if she needs to slow down any.

Sorry to ramble on...having one of those days were things aren't all there so forgive me if this doesn't all make sense. Thanks again for all the support.

[thejohnsongang]

Mack's mom...drop me an e-mail (thejohnsongang@adelphai.net). You are the one who gave me Dr. Rowe's new contact info a couple of months ago. Thank you so much.

[cmtaylor5]

Hi,

I totally understand how you feel. My 13 yr old son was diagnosed last month. All I could do was look into the future for him with fear. However, even with an obvious genetic connection, his doctor encouraged me to hope that he would outgrow this after adolescence. I didn't become severely symptomatic until my late 30's, and I live a mostly normal life with a few exceptions and a small dose of beta blocker. My son has terrible bouts of presyncope, which I don't have, so I do worry some that he will end up having a worse case than I do.

Having said that, I did notice that he took the diagnosis in stride. I'm sure that part of that is because he's 13, part is because he's seen me living with it for a while, and part is because even though it wasn't officially named, he's basically been living with it since he was nine and it's what he considers "normal". I decided that I would let him set the tone and that we'd take it a day at a time. So far, it's going okay.

Best wishes,

Carolyn