Do You Ever Feel Alone In All Of This?

[k'smom]

As of now, Kay has been diagnosed with Dysautonomia: EDS, POTS, a milder form of von Willebrand's, osteochondromas, hemorrhagic cystitis, and thyroid tests aren't good now. She is having UTI's back to back and the antibiotics don't seem to be working. She spends way to much time at drs offices and is developing a depression because of it. I try not to schedule appts too often, but it seems like there's always something new popping up and she has to go anyway. The ER visits are becoming unreal.

Today I feel really alone. I can only imagine how she feels. She says, "What's the point? Nobody can do anything for me anyway." I'm trying everything I know to do to help her. I have tried to be pro-active in her health care. I've always wanted the best for her. She's soon to be 17 yrs old and it seems no matter how hard I try, her quality of life is diminishing. I know some of you have teens with the same or similiar problems. How do you help them cope?

I'm a Christian, I pray, I have faith. Today I guess I just feel down about all of this.

[gertie]

I know it is frightening to have a child that is ill. I've not had a child with Dys/POTS etc but I do have children that have had health problems. It would be good if you could find a support group in your area. Unfortunately I've been living with Dys/POTS for many years & no one in my area has heard of Dysautonomia not even the dr's. The only time I've ever mention it to a family member they just ignored me, never even asked a question. I know how hopeless she feels but she will learn to cope with time.

When I started having urinary tract problems I was given antibiotics but when dr finally tested my urine I did not have an infection. Mine turned out to be Interstitial cystitis which I believe is one of the symptoms of Dys. My thyroid will test hypo at one testing & a months later it will be normal. It's been up & down like this for years.

You are not alone. We are all here for you. I am also a Christian & that helps me get through the day. I realize that "things happen" to everyone. God does not cause it, He loves His children. The Bible does say He will not give us more than we can bear & He will always give us a way out. Hope you feel better soon.

[jbenz1772]

Hi K's mom,

I'm sending hugs your way. I can't imagine how hard it is for you to try to be there for your daughter. I'm the one with Dys/POTS/small fiber neuropathy and know how it feels like whatever you do nothing seems to work. I agree about the support group. Does your local children's hospital have any programs? My son was born with a genetic syndrome called 22Q11 and our genetics department is great with having outings to meet the other kids and parents. Sunday was international awareness day at zoo's across the world. It's so nice to be able to talk to others going through the same thing. I know the hospital I'm treated at has monthly support groups for dysautonomia, I just haven't gotten myself to one yet.

Good luck and your not alone,

Jennifer

[Christy_D]

Hi K's Mom,

I can totally relate to you. My son turned 16 in February and has only been to school for 6 weeks out of the last 2.5 years. The school has told me he is their first student with POTS (I'm sure more are undiagnosed, or just not as bad).

I go through fazes of ups and downs. I'm not an emotional person, but 2 months ago at a meeting with his counselor she asked how he was doing and I just started crying. This is so not me, but I couldn't help it, all those emotions were at the surface and I couldn't contain them.

When Cody has a lot of appts close together he hates it... 'He doesn't like to be a guinea pig or lab rat' as he says. For the most part though, the way my son handles it, makes it easier for me. He doesn't dwell or have pity parties and he jokes around in the evenings when he feels his best.

HUGS go out to you,

Christy

[bkweavers]

K'smom, I can honestly say that I know how you're feeling because I was there. My 15 yr. old daughter has POTS and even though she was doing well emotionally, I was not. In fact, the two years before this were terrible and I was depressed. I felt hopeless and helpless concerning her and I felt like she was never going to get better. I couldn't stand to hardly watch her on some days because it just made my heart break into a million pieces. I would rather have had the illness than her.

I agree with the others about a support group but that's if you can find one. I'm not sure where you live but there are dysautonomia support groups springing up all over. I know for myself, talking to people with cancer even seemed to help. Even though their symptoms and illness was different from my daughter's, we had many other things in common that come with dealing with an ongoing illness.

The good news for your daughter is that she is an adolescent and has an 80% chance of growing out of this. But in the meantime, is it possible for her to have friends over? Do you have a youth group at her church that she can attend? I think anything to get her with her peers is helpful. My daughter doesn't have all the over health issues your daughter has but she was so debilitated for 3 and a half years that she was unable to walk, sit, or stand up so we tried to keep her in school as much as possible and get her around friends by having sleepovers.

Feel free to send me a note and/or I would be more than happy to speak to you on the phone. Over the last 4 years, I've been in contact with many parents of kids with POTS and it helped me through some very dark days. It's also been a source of information for me and knowing that other people were experiencing the same things we were. It's a difficult illness to have because many people don't know what it is and have never heard of it. They think because your child looks alright, that they really must not be that sick.

My daughter has actually improved immensely in the past year and is getting close to being like her old self before POTS. It's been 4 years and 2 months since she became ill but I know she has become stronger because of it. We are also Christians and there were many days when I was angry at God and just couldn't even find the words to pray. Someone at my church told me," on the days you don't have the strength to pray, remember that someone else is praying for you." Our family felt those prayers and that God was with us during the worst of days.

You and your daughter are in my daily prayers. Ps. 34:18 says,"The Lord is close to the brokenhearted and saves those who are crushed in spirit."

God bless,

Brenda

[juliegee]

So sorry I just sent you a PM.

Julie

[corina]

this is exactly why i love this forum so much. people can come here to share their worries and get the support they so desperately need. sending warm thoughts your way k'smom and all of you mummie's (and daddies) who are so worried about your kids'health, and hope your daughter (or son) will be doing better soon!

corina