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dd diagnosed and overwhelmed

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PricklePatch posted 9/27/2013 21:31 PM

My beautiful dd was finally diagnosed with post orthostactic tachycardia syndrome,in a, and erhlers danlos. She is very much a physical mess. We are driving 5 hours each way to a specialist. She never understood what was happening with her body And has suffered for years.

[This message edited by PricklePatch at 9:32 PM, September 27th (Friday)]

nowiknow23 posted 9/27/2013 21:55 PM

(((((PricklePatch))))) Sending you strength and comfort.

jo2love posted 9/27/2013 21:56 PM

(((Prickle & DD)))

Sending strength and prayers.

Grace and Flowers posted 9/27/2013 23:14 PM

Prickle,
I'm so sorry you're going through this. How old is your daughter? My son was diagnosed with a rare blood disease at 18 (he's now 20). It also explained so many things he has lived with over the years of his life. It upended his life. There is no cure and little treatment. If it manifests in a vital organ, he will die. He has come close to dying.

If you ever want to talk privately, feel free to PM me. It's a hard road to be on, as a parent.

(((((PP)))))

PricklePatch posted 9/28/2013 04:55 AM

My dd is 14. This diagnosis also explains many things in her life. She has chronic fatigue but when exicted, can suddenly appear normal, then an collapses. People think w make to much of it. They don't see her in pain and agony after the event. They don't notice her unsteady gait fighting through to not faint. They don't see how easily she gets a bug. They don't understand the ordeal of school.

I realize our child isn't terminal, and am grateful. I do feel overwhelmed between by he chronic illness and th judgement of others including he pediatrician, who says your going to need to suck it up, your going to have to deal with this in the real world some day.

[This message edited by PricklePatch at 4:56 AM, September 28th (Saturday)]

authenticnow posted 9/28/2013 05:31 AM

Sending lots of hugs and good thoughts to you and your family.

cantbelieve posted 9/28/2013 08:43 AM

((pricklepatch)) ((sadmad))

I'm sorry your kids are going through this. My daughter is having issues (headaches and vision) and was finally diagnosed with Chiari Malformation. However in the follow up scans, the NS doesn't feel this is her issue and we are going to other doctors. She is 19 and took medical leave this semester. It's so hard to see your kids suffer and not be able to do anything. I'll be praying for your kiddos.

confused615 posted 9/28/2013 09:04 AM

(((((PricklePatch and DD)))))

jjsr posted 9/28/2013 21:12 PM

Sending you both good thoughts

JustDone posted 9/30/2013 10:05 AM

((((PricklePatch))))

(((((dd))))

It's awful to watch your child suffer, both of my kids have diagnoses that are tough to handle, so I know how you feel.

Big hugs to you both.

DixieD posted 9/30/2013 13:44 PM

I was finally diagnosed with POTS a few years ago, in middle age. It explained a lot of things that doctors could not figure out. I know what you are saying about the fatigue and unsteady gait and mental confusion etc.

It's tough to be chronically ill and look fine, especially hard for a teenager.

I hope with her diagnosis now you will get the help you need, even if it's just from a greater awareness of the cause of her symptoms.

There are some great forums online with other POTS, dysautonomia and ME/CFS patients who have a great deal of experience and knowledge on the subject.

(((pricklepatch and dd)))

You are welcome to PM me and I'd give you any info I can that may be helpful to you.

[This message edited by DixieDevastated at 1:57 PM, September 30th (Monday)]

tushnurse posted 9/30/2013 14:06 PM

(((PP))))

POTS is a manageable thing, and can often be a symptom of the Erhlers Danlos. Which is a tough one. There aren't a ton of people with it like other autoimmune diseases, which stinks when it comes time to explain it, and get support.

The one person I have helped with it was also struggling for a long time, before she finally got a diagnosis. She had trouble her whole life, and unfortunately for her, had parents that blew her off, she pushed herself, and tried to go to school, tried to work. Was in constant pain, now that she has a good management team, she is so much better. Her pain is controlled effectively, she was able to get assistance and disability.

Be thankful they have diagnosed it at this young of age, hopefully preventing her from doing damage to her joints, my girl always said she was made of rubberbands, and that really is a good way of explaining it. Everything is just too stretchy.

(((and strength))))

PricklePatch posted 10/1/2013 11:01 AM

Thanks for all the support. I do realize POTS is treatable. Since my daughter was born there were immediate signs that there was something going on with her digestive track. We were told early on there was a problem with the nerves to her stomach. She has suffered since she was small with huge amounts of pain from eating or not eating.

She has been taken from specialist to specialist for years to figure out what the hell is going on with her. She started fainting at 10. She was cleared with a cardio of having low blood pressure, give her more fluids.

Last spring she was out of school for 8 weeks. Ironically, she returned and went to an event for girl scouts, a volunteer started talking to her, asked her why she was out and my DD told her. The volunteer told her I think you might have what my DD has. Gave her a website for me, and my DD researched it before bringing it to me.

We read the list and she didn't understand the list of symtoms fully. I explained them and she has or has had about 85 percent of them.

We took this to her pediatrician and I had already started looking for a specialist. He didn't feel like she had it. He had another patient who recently had been dx'ed with it and she had 12 concussions this year. The difference is when my dd feels pre synocape she sinks to the floor herself, then faints. This is because we found her draped over a gate.

We chose to take her to a specialist in POTS 4 states away for a quicker dx. Also we felt better treatment. The other person in his practice went to a children's hospital where it took her 4 months and multiple specialist to be diagnosised. My dd had all the tests withing 2 days with the specialist.

The dr's office said well the other girl was worse, with the 12 concussions. I was like yes, she experienced concusions, however please do not tell me who is worse and who isn't as my DD has experienced enmorous amounts of pain from birth on with no diagnosis and no real fix on how to help her with the pain.

Now we are in a phase of medicating her and trying to see what works and what doesn't. There is still disagreement between the pediatric gi guy and the pots specialist.

There is aniexty from my dd over social acceptance and feeling socially isolated from friends. There is huge stress on the idea of going to school, me even asking how she is feeling when she wakes up. The decision from the doctors is to remove her from school this year till she is medicated. The school system is being very unsupportive with the idea of virtual school.

Then of course there is the impact of my wh and my relationship. My dd is fully aware of what went on, she is a world class easedropper. She is very clearly stressed by what she knows. She is seeing a therapist.

She also wants Mommy, at night every night. She wants to sleep with me every night of the week. I am used to sleeping by myself.

My WH sleeps in another bedroom.

tushnurse posted 10/1/2013 15:11 PM

((((PP and DD))))

It's tough for sure, but at least you have a point to work from. The virtual school is awesome to even be an option these days.

I'm not too hot on the idea of sleeping with her every night, but then I have always been weird and ultra protective of my bed, and sleep time. Maybe once you feel she's not at risk to passout when she stands up she can go to her own room.

(((and strength)))))

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