Updated..dx confirmed. If you or someone you're close to was dx'ed with a serious chronic illness as a young person...

[popmom]

What advice would you give me to help my dd? She's 23-- full time grad student with a serious boyfriend. She has just been diagnosed with a serious, rare condition that could be life long. She's been bounced around between 2 or 3 different specialists over the past few months. Only now has it become clear that her condition isn't going to resolve on it's own (idiopathic intracranial hypertension). She texted me after seeing 2 different doctors this week to tell me what the next steps are. I called to check in, and I could tell immediately that she is ANGRY. I know there is fear in there, too, but mainly anger right now. I can totally empathize. This is obviously not a part of her life plans! And she is very, very goal driven. Just DRIVEN. PERIOD. 

I didn't press her for info on the phone. I just let her know I am angry with her (not at her to be clear), and I would come whenever she needed me, and I let her go. 

This is uncharted parenting territory for me. It's not that I haven't had to go through hard (even life theatening) things with my kids before. But they were a bit  younger. And not this angry. 

Right now I'm just giving her space. Which feels like not enough. 

If you've been in her position or parented someone in this position, how do I navigate this? What does she need most? How can I love her well as we adjust to this new normal which, quite frankly, isn't normal at all. It sucks. It just sucks.

 

Edited July 13, 2021 by popmom

[Pen]

Let her know that you are available and would like to help, but she may not want or need your help right now. She may need to process her emotions herself.  (And you may need to process your emotions yourself too.)

At some point she may need some practical help which you may well be able to give, especially if she ends up needing surgery or something like that. 
 

what you did, give space and assurance you would come if needed is probably basically the right thing

 

you might want to add in case it’s not clear that you are also available longer distance, by phone or whatever 

Edited May 30, 2021 by Pen

[prairiewindmomma]

Anger is a normal part of grieving and this is something she will grieve repeatedly at different points of her life. Her driven ness is her superpower. She will likely push for the best solutions and not get yanked around in the specialists rounds she will have to do with opthamology, etc. as she does the rest of her rule outs of underlying issues.

IIRC, the old name for this is pseudotumor cerebri. (When dd had brain cancer I read a lot of neurology stuff.) So, diuretics or a shunt and other things are potentially on the horizon also. She will likely need physical support for those things.

But, for now, I think you are on the right track. When she wants to talk, she will, but this isn’t something you can fix. What she is likely not aware of is that you are grieving too.

*hugs*

[Pen]

It’s particularly hard at the stage that one was becoming independent to have something threaten that budding independence IME 

[Catwoman]

Can you go there and be with her?

This seems like a situation where she might really need her mom, even if she isn’t admitting it.

I would go.

[Arcadia]

My experience is only with close friends with leukemia. They found out in elementary school, so much younger than your daughter. They felt anger, then “resignation”/acceptance, then hope. Having good medical social workers were great for the parents. Having a good care team is important for the person and the well-being of the parents. 
 

For my friend who has less people free to keep him company, just having people taking turns with the parents to be there for hospital visits and stays were great. He was angry that “it” happened to him while other children get to be carefree. He was also scared. He loved Doraemon comics so I would try to buy and bring some whenever I keep him company at the hospital.

[popmom]

2 minutes ago, Catwoman said:

Can you go there and be with her?

This seems like a situation where she might really need her mom, even if she isn’t admitting it.

I would go.

She is with her bf this weekend, and I think that is really good for her. He is very good to her. He's very stable and I believe a normalizing factor in all of this. As soon as I am needed, I can be there in 2 hours. We are waiting for the lumbar puncture to be scheduled. I willl HAVE to be there for that. I know she is terrified of that procedure.

This is when my mom game kicks into high gear. I'm wanting to call all my doctor/surgeon friends and contacts. I want second opinions scheduled. I want to know which specialist is best at lumbar punctures. Should I bring her home where we have the medical school and best of the best specialists or do I trust this neurologist in a much smaller community/regional hospital (there are literally only 2 neurologists in this region) to not traumatize my child for her first lumbar puncture?? She's 23. I can't just swoop in and take over. I am taking lots of deep breaths. I am trusting God that He is using this for her good ultimately and His glory. I cannot spare her from all suffering, but I will not fail to advocate/be there for her. Just trying to find the right balance. 

[Tap]

DD was diagnosed with POTS in high school. She went from a 3 sport athlete and considering med school, to only being upright 3 hours a day. At 22 she can now work 4 days a week, and volunteers one day a week when she is up for it, but that is the full extent of what she can do. She needs 2 hours to get ready in the morning and an hour of self-care at night. (yoga etc).  She struggles with brain fog, so taking one college class at a time, is all she can do. A single class also bumps one work day off her threshold. She has almost constant migraines and struggles with chronic hives. She has a very strict diet and has to drink 1.5 gallons of electrolytes daily. DD had to accept that she has maybe half of the energy threshold of a normal healthy adult. She can absolutely spend a few days in full blown, bubbly activity (her true self).....but then she will have to do almost nothing for 3-5 days to make up for it. She works on her feet all day, but makes sure her schedule allows her to have  day off, mid-week to recharge. Mornings and evenings must allow her to rest to get mini-recharges on he work days. Her day off, is almost all spent relaxing and recharging. 

When dd was sick, she fought for freedom from her illness and ended up paying the price. The harder she fought for a normal teenage life, the harder her illness pulled her backwards. Understanding the 'spoon theory' would be good for both you and your daughter. We also had to try everything the doctors suggested as treatment, even if we thought the ideas weren't worth the effort. Different things worked at different times, but the process of discovering each, was beneficial for dd to understand her body. 

I didn't go through anger and I don't think dd did either, but sadness comes and goes. I help support her by paying for the bulk of her medical expenses. I don't want her to make medical decisions based on how much they cost. I do tons of research for her, message her doctors for her, and manage most of her health care. Her medical care takes a lot of mental work and it really drags her down into a depressive state to have to manage it. She and I talk about it all, and I sit in on all of her appts. 

Sorry you are all going through this ((((HUGGSS)))) it is overwhelming. 

DD 14 was evaluated for Pseudotumor cerebri and it can be a scary diagnosis. Hopefully your daughter will be one of the ones who get relief from treatment. 

[popmom]

56 minutes ago, prairiewindmomma said:

Anger is a normal part of grieving and this is something she will grieve repeatedly at different points of her life. Her driven ness is her superpower. She will likely push for the best solutions and not get yanked around in the specialists rounds she will have to do with opthamology, etc. as she does the rest of her rule outs of underlying issues.

IIRC, the old name for this is pseudotumor cerebri. (When dd had brain cancer I read a lot of neurology stuff.) So, diuretics or a shunt and other things are potentially on the horizon also. She will likely need physical support for those things.

But, for now, I think you are on the right track. When she wants to talk, she will, but this isn’t something you can fix. What she is likely not aware of is that you are grieving too.

*hugs*

To the bolded... this is what I think will get her through this. She is going to have to harness this superpower. Thank you for your help--both last night and now. I am much better after yesterday's little drama. I have a purpose that supercedes keeping toxic people happy. This young woman (my dd) will change the world. She already has in many ways. I just can't leave a stone unturned. (I clearly can't ask my own mother lol) That's why I ask here. 

Edited May 30, 2021 by popmom

[Catwoman]

6 minutes ago, popmom said:

She is with her bf this weekend, and I think that is really good for her. He is very good to her. He's very stable and I believe a normalizing factor in all of this. As soon as I am needed, I can be there in 2 hours. We are waiting for the lumbar puncture to be scheduled. I willl HAVE to be there for that. I know she is terrified of that procedure.

This is when my mom game kicks into high gear. I'm wanting to call all my doctor/surgeon friends and contacts. I want second opinions scheduled. I want to know which specialist is best at lumbar punctures. Should I bring her home where we have the medical school and best of the best specialists or do I trust this neurologist in a much smaller community/regional hospital (there are literally only 2 neurologists in this region) to not traumatize my child for her first lumbar puncture?? She's 23. I can't just swoop in and take over. I am taking lots of deep breaths. I am trusting God that He is using this for her good ultimately and His glory. I cannot spare her from all suffering, but I will not fail to advocate/be there for her. Just trying to find the right balance. 

I would bring her home if the medical care is better there. This is too important to trust anyone but the very best specialists your dd can get. 

23 is still young and this is serious stuff. Your dd might be relieved to let you take on a lot of this burden for her, and if she’s at home, you can also take care of her when she’s preparing for and recovering from her medical tests and trying to deal with the results and subsequent treatment decisions. Just scheduling appointments, and driving her back and forth, and being there to talk to the doctors with her could be a huge comfort to her. 

Her boyfriend sounds like a great guy, but you’re her mom, and you have more knowledge and experience to help your dd through this. The boyfriend can still be very involved, even if he’s at a distance.

[Catwoman]

Popmom, I forgot to mention that I will be praying for your dd!

[popmom]

6 minutes ago, Catwoman said:

I would bring her home if the medical care is better there. This is too important to trust anyone but the very best specialists your dd can get. 

23 is still young and this is serious stuff. Your dd might be relieved to let you take on a lot of this burden for her, and if she’s at home, you can also take care of her when she’s preparing for and recovering from her medical tests and trying to deal with the results and subsequent treatment decisions. Just scheduling appointments, and driving her back and forth, and being there to talk to the doctors with her could be a huge comfort to her. 

Her boyfriend sounds like a great guy, but you’re her mom, and you have more knowledge and experience to help your dd through this. The boyfriend can still be very involved, even if he’s at a distance.

I agree with you 100 percent! And I am 100 percent up to this. But this dear child is so unbelievably stubborn. Strong willed is understating it. I have to figure out how all of this will work with her being in this lock step professional doctorate program. (audiology) I believe her professors will be supportive. It's HER I may have trouble getting on board to come home for treatment. 

[popmom]

4 minutes ago, Catwoman said:

Popmom, I forgot to mention that I will be praying for your dd!

thank you. that means so much to me. My heart breaks for her.

[popmom]

Thank you all so much for being here and offering your help. I've been on the road today for 11 hours. It was a great vacay, but I'm headed to bed...exhausted but grateful. I will check in again tomorrow. No promises that I will be up before 10 am. 😉

Y'all have been such an encouragement to me tonight. Thank you. I feel much less alone.

[popmom]

@Tap thank you for reminding me of spoon theory! I will absolutely share that with her. Thank you for sharing your experience. This is going to be so important to my dd. It's going to be really hard for her to adjust, but she's not alone in this. 

Edited May 30, 2021 by popmom

[DawnM]

How far away does she live?   I agree that a visit should happen if at all possible.   I am sorry to hear.

[Katy]

I would encourage anyone who is driven and facing a chronic condition to see an occupational therapist. That was the most helpful person when I got sick in my 20’s. She gave me many helpful suggestions to improve my quality of life. 

I also (after visiting all the “best” specialists who didn’t help) discovered seeing a nurse practitioner at the neurologist was better than a physician because she focused more on quality of life than on trying to cure an incurable condition. The experts seemed to get irritated that they didn’t cure me. The nurses just tried to make every day better. It was a totally different and much more helpful approach. 

Similarly, a general practitioner who got her MD at some school I never heard of in the Caribbean and who was also very helpful. She listened closely, she didn’t assume she could solve everything, she looked into the research areas she knew I hadn’t looked at yet and suggested trying something that improved my symptoms about 40% over a few months. 

[PeterPan]

Yes, anger is one of the steps of grieving. (you can google them)

You've already probably figured this out, but you want to *facilitate* not take over. She has to own her decisions. So you can *offer* to bring her home or *offer* to facilitate any medical care she wants. But she has to sort out what she wants and own that.

And as far as the chronic thing, I started having my health problems when I got married. I developed some problems they said couldn't be cured (chemical sensitivities, food allergies) and later I found more options and explanations and got a lot better. I think it's a valid question why it's happening *now* and whether this flare up is *connected* to that driven ness or starting something (stressful, hormonal, whatever).

There's a lot doctors don't know and a lot that is becoming more apparent with genetics. There's a gene that is connected to headaches. I'm not saying it's the cause of your dd's (obviously very significant) issues, but I'm saying that even "experts" might not have pieced together all these things. She might find her explanation and helps in unusual ways down the road. She could definitely consider running genetics to see what might be in there with enough digging.

[madteaparty]

No advice, just sympathy. But now I’m googling this syndrome because my son’s bestie just had brain surgery for an aneurysm and they can’t sort the cause...high blood pressure has been thrown around. 

Edited May 30, 2021 by madteaparty

[Kassia]

No advice, but I just want to send hugs to you and dd.  I'm so sorry you have to deal with this.

[Dmmetler]

((Hugs)))

 

S. has had two strokes and lots of lasting difficulty, starting in April of senior year. It has been a difficult haul, made worse by COVID, when often they wouldn’t let people in with her to appointments, but she wasn’t always able to retain what was said. 
 

Mostly, be there as much as you can, recognize the anger, frustration and grief that comes from having your life totally changed. It’s especially going to be difficult when, not if, she has to deal with those who doubt the experience she is living, if she has to apply for disability or other support, and when she has to see her friends going on without her.

[Farrar]

Hugs and sympathy. That's so rough.

Because she's both young and at sea and also an adult with a life of her own, I think I'd be pretty explicit about asking her to what extent you can take over this process or come manage things. She may really be relieved. Or she may not want that. Or she may be eager for you to take over some parts of it and not others or to be totally in charge herself but delegate you big tasks. When I was 23, I would have wanted my mother to come swoop in and manage some aspects (and my mother is an amazing medical advocate because she worked dealing with palliative care issues for the bulk of her career) but to back off on others. And those boundary lines may change. I think the worst thing you could do would be to take over in ways that hurt your relationship - whatever those might be that are specific to the two of you. It sounds like she's going to need your support in some form for a long time potentially so I wouldn't approach this as a problem you can swoop in and just fix and manage. It's going to be a partnership in some form and she should control the terms of that to a large extent. Of course, here's hoping that she lets you get her those second opinions ASAP.

[pinball]

Counseling might help, especially if she can find someone who deals with how the medical issues will impact her life.

I’d offer to help as much as possible, as much as she wants.

I’d say, “if I’m overstepping, or you want a break from me, tell me” 

But at the same time, I’d also, based on my own experience, tell her that in most situations, it’s beneficial to have an advocate at every possible situation bc sometimes things get missed, sometimes patients get bulldozed when alone, sometimes medical professionals make mistakes, and on and on.

YMMV

[pinball]

So, if it is idiopathic, there is no possibility of a chiari malformation? That’s been ruled out?

[Hunter]

I was diagnosed as terminal at 21. I had a baby and toddler that were still alive, and two babies that were gone. I had no paperwork that said that I was American and I honestly did not know what my status was or how to find out. My husband of 3 years and my children were American. There was severe domestic abuse. Daily threats to separate me from the children were the norm. I am just saying this to provide context to my following "I" statements.

I learned that doctors make mistakes. I learned that doctors that watch other doctors make mistakes won't warn you anything is wrong and that they care more about thier reputation among their peers than they do about their patients.

I learned that the "best" doctors" often have the biggest egos and the scariest personality traits. I learned that arrogance blinds doctors to clues that they do not investigate. I learned the "best" doctors make the "worst" mistakes.

I learned that short-term treatments can cause long-term damage. If a patient survives longer than expected, the more access they had to treatment, the shorter their life span might be.

I learned that medical people that cannot help will often settle for having impact, and don't care that they are causing more harm than relief. As long as they are doing SOMETHING, it relieves THEIR need to at least change things. I learned not to do ANYTHING that would encourage these types of "treatments".

I learned that every puncture of my skin and every office visit put me in contact with bacteria and viruses and whatever.

I learned that drugs and medical devices can kill people. I learned that lack of access to treatment coul save my life.

I learned that I cannot imagine the future. Again and again and again.

I learned that the world measures success and worth in ways that cause a lot of confusion and shame for people dealing with an illness. I learned that I can choose not to believe what others believe.

I learned that some of us live a LOT longer than anyone thought we would. I learned that there are a lot of people that don't think I deserved to live and are pretty pissed off that I did live. 

It is impossible that I am alive. Several times over. But I am alive. I am one mucked up mess. Maybe they are right. Maybe I did not have the right to live. Or at least not past launching those two children. I am alive anyway.

At 21 years old, I had ONE goal. That one goal was to live long enough to get those children into kindergarten and 1st grade, so that hopefully someone outside "the family" would at least eyeball them several times a week. I had no imagination of any world beyond my mid twenties. The world ended there, in my mind. I became tunnel visioned. I prepared to die and spent my last days making my boys as independent and prepared as possible for that end.

At least 5 novels worth of adventures and mess happened after that. I could never have imagined what came next. Truth is stranger than fiction. 

Anger has kept me alive. My anger is rocket fuel. In the worst of times, I have swallowed fire and converted it to rocket fuel. When we have NOTHING to lose, a world of possibilities open up. Possibilities that people will shame us for accessing. We can choose to continue letting others tell us what to believe and what we "should" do and feel. Or ... we can choose to do something else.

The more often we face death, the better we get at LIVING. 

[Hunter]

Oh, and I learned the best sex is when you think you are dying AGAIN and it is with someone else that has faced death multiple times and is enough of a jerk to be more interested in having sex with you than how long you might live. If it is summer, even better. If he has tattoos that is nice, too. Just saying.

When you walk out of the hospital and it is summer, the best place to head is the beach in a new bikini. And ice cream cones taste better than ever.

[Tap]

1 hour ago, Dmmetler said:

((Hugs)))

 

S. has had two strokes and lots of lasting difficulty, starting in April of senior year. It has been a difficult haul, made worse by COVID, when often they wouldn’t let people in with her to appointments, but she wasn’t always able to retain what was said. 
 

Mostly, be there as much as you can, recognize the anger, frustration and grief that comes from having your life totally changed. It’s especially going to be difficult when, not if, she has to deal with those who doubt the experience she is living, if she has to apply for disability or other support, and when she has to see her friends going on without her.

Have her look into the phone app called Abridge. You can record the conversations and even tag certain parts to go back and review later. I recommend it to anyone who goes to complicated doctors appointments. 

[kbutton]

My middle school kiddo has a chronic condition that can have really serious implications. We are connected to a national foundation that is POSITIVE, focused on connection, community, quality of life, innovation in treatment, and research. It makes a huge difference to be connected to this kind of group. If we lacked confidence in our son’s care, they have best practice info and sometimes access to care. If he needs a referral, they have networks inside of networks. They have a celebratory, informative, community-building annual conference. Now that they had forty years of advocating for people with this condition, they are intentionally broadening the tent to do the same for people with different but related conditions.

They offer age-appropriate social supports as well via the internet.

 

[Tap]

10 hours ago, popmom said:

She is with her bf this weekend, and I think that is really good for her. He is very good to her. He's very stable and I believe a normalizing factor in all of this. As soon as I am needed, I can be there in 2 hours. We are waiting for the lumbar puncture to be scheduled. I willl HAVE to be there for that. I know she is terrified of that procedure.

This is when my mom game kicks into high gear. I'm wanting to call all my doctor/surgeon friends and contacts. I want second opinions scheduled. I want to know which specialist is best at lumbar punctures. Should I bring her home where we have the medical school and best of the best specialists or do I trust this neurologist in a much smaller community/regional hospital (there are literally only 2 neurologists in this region) to not traumatize my child for her first lumbar puncture?? She's 23. I can't just swoop in and take over. I am taking lots of deep breaths. I am trusting God that He is using this for her good ultimately and His glory. I cannot spare her from all suffering, but I will not fail to advocate/be there for her. Just trying to find the right balance. 

I fly my daughter home for all of her medical care. We have even had her sign out of a hospital AMA and jump on a flight home, so she could check into a better hospital. 

One thing I always tell my daughter....A problem that can be solved with money (that you have) is not a problem. So, putting my daughter on a flight to see a better doctor....always worth it to me!

[Pen]

 

47 minutes ago, Hunter said:

I learned that doctors make mistakes. I learned that doctors that watch other doctors make mistakes won't warn you anything is wrong and that they care more about thier reputation among their peers than they do about their patients.

I learned that the "best" doctors" often have the biggest egos and the scariest personality traits. I learned that arrogance blinds doctors to clues that they do not investigate. I learned the "best" doctors make the "worst" mistakes.
 

 

yes , but not always 

in addition to the doctors some facilities are much more user friendly than others . And some huge medical centers considered top notch can be hard to deal with. 

47 minutes ago, Hunter said:

I learned that short-term treatments can cause long-term damage. If a patient survives longer than expected, the more access they had to treatment, the shorter their life span might be.

I learned that medical people that cannot help will often settle for having impact, and don't care that they are causing more harm than relief. As long as they are doing SOMETHING, it relieves THEIR need to at least change things. I learned not to do ANYTHING that would encourage these types of "treatments".

I learned that every puncture of my skin and every office visit put me in contact with bacteria and viruses and whatever.

I learned that drugs and medical devices can kill people. I learned that lack of access to treatment coul save my life.

I learned that I cannot imagine the future. Again and again and again.

I learned that the world measures success and worth in ways that cause a lot of confusion and shame for people dealing with an illness. I learned that I can choose not to believe what others believe.

 

47 minutes ago, Hunter said:

 I had no imagination of any world beyond my mid twenties. The world ended there, in my mind. I became tunnel visioned.

47 minutes ago, Hunter said:

When we have NOTHING to lose, a world of possibilities open up. Possibilities that people will shame us for accessing. We can choose to continue letting others tell us what to believe and what we "should" do and feel. Or ... we can choose to do something else.

The more often we face death, the better we get at LIVING. 

I quoted parts that also fit with things I learned about serious illness in ones twenties. . 

[Pen]

10 hours ago, popmom said:

She is with her bf this weekend, and I think that is really good for her. He is very good to her. He's very stable and I believe a normalizing factor in all of this. As soon as I am needed, I can be there in 2 hours. We are waiting for the lumbar puncture to be scheduled. I willl HAVE to be there for that. I know she is terrified of that procedure.

This is when my mom game kicks into high gear. I'm wanting to call all my doctor/surgeon friends and contacts. I want second opinions scheduled. I want to know which specialist is best at lumbar punctures. Should I bring her home where we have the medical school and best of the best specialists or do I trust this neurologist in a much smaller community/regional hospital (there are literally only 2 neurologists in this region) to not traumatize my child for her first lumbar puncture??
 

 

is she likely going to need several to reduce fluid pressure? If so, I’d start by trying to find who is best and competent where she currently is, and only bring her home if no one there seems competent 

a smaller place may be less traumatic emotionally  than a huge impersonal facility 

that imo would be a good reason to go in person and get a feel for the place where she is

 

Having a vehicle that allows lying down as fully as possible while going home after LP iirc is really important  - I’d ask if that’s likely to be true for her. It may require looking into rental options early if you don’t own such a vehicle

 

 

10 hours ago, popmom said:

She's 23. I can't just swoop in and take over. I am taking lots of deep breaths. I am trusting God that He is using this for her good ultimately and His glory. I cannot spare her from all suffering, but I will not fail to advocate/be there for her. Just trying to find the right balance. 

🙏🙏🙏

[popmom]

1 hour ago, pinball said:

So, if it is idiopathic, there is no possibility of a chiari malformation? That’s been ruled out?

!!! This has been on my mind because my cousin's dd had this. She went to New York for surgery. Does chiari show up on MRI with contrast? 

[pinball]

1 minute ago, popmom said:

!!! This has been on my mind because my cousin's dd had this. She went to New York for surgery. Does chiari show up on MRI with contrast? 

Yeah, I think that’s the test. And that usually it’s run bc symptoms point towards the issue

IMO, I’d you’re getting CT or MRI, always, always always make sure that you’ve discussed getting with and without contrast. There is nothing worse than repeating imaging bc someone messes up whether it should be done with contrast, too

[popmom]

I'm mulling all of this over.

I'm going to start a list of phone calls to make, apps to get, etc.

Initial lumbar puncture is to determine pressure level--and I'm sure they will drain some to reduce pressure. I think the first thing they try is a a diuretic like Diamox. 

The doctor suggested she lose 10% of her body weight. Supposedly that can help. But I want a second opinion on that, too. She's nowhere close to obesity (which is a risk factor for this). She's a healthy, curvy size 6 who likes to lift. She goes to the gym several times a week. 

[popmom]

adding that to my list of questions to ask a doctor. Is it ok for her to lift? If she's not having headaches or nausea, she is go, go, go.

[pinball]

4 minutes ago, popmom said:

adding that to my list of questions to ask a doctor. Is it ok for her to lift? If she's not having headaches or nausea, she is go, go, go.

Sorry to bother you again...I remembered someone who got diagnosed with pineal cyst, but it was weird bc they had the symptoms but the medical professions said it was too small to cause the symptoms...

The hospital only wanted to drain it, but they wanted it removed

they went somewhere else and had it removed

[popmom]

14 minutes ago, pinball said:

Sorry to bother you again...I remembered someone who got diagnosed with pineal cyst, but it was weird bc they had the symptoms but the medical professions said it was too small to cause the symptoms...

The hospital only wanted to drain it, but they wanted it removed

they went somewhere else and had it removed

you are NOT bothering me. I'll take all the info I can get. 🙂 I was just googling about the weight lifting and it does exacerbate symptoms in some people. I'm just going to mention for her to pay attention to that.

[PeterPan]

1 hour ago, popmom said:

The doctor suggested she lose 10% of her body weight. Supposedly that can help. But I want a second opinion on that, too. She's nowhere close to obesity (which is a risk factor for this). She's a healthy, curvy size 6 who likes to lift. She goes to the gym several times a week. 

Doesn't make sense to lose muscle weight. She's getting a 2nd opinion?

Edited May 30, 2021 by PeterPan

[caayenne]

15 minutes ago, popmom said:

I'll take all the info I can get. 🙂

Hi @popmom! I just sent you a PM. 😊

[Catwoman]

2 hours ago, popmom said:

I'm mulling all of this over.

I'm going to start a list of phone calls to make, apps to get, etc.

Initial lumbar puncture is to determine pressure level--and I'm sure they will drain some to reduce pressure. I think the first thing they try is a a diuretic like Diamox. 

The doctor suggested she lose 10% of her body weight. Supposedly that can help. But I want a second opinion on that, too. She's nowhere close to obesity (which is a risk factor for this). She's a healthy, curvy size 6 who likes to lift. She goes to the gym several times a week. 

One thing I have noticed over the years is that a lot of doctors go by BMI instead of actually looking at the patient to see if they are overweight. If you think your dd is already at a healthy weight, the recommendation to lose 10% of her body weight could do more harm than good.

[Dmmetler]

3 hours ago, Tap said:

Have her look into the phone app called Abridge. You can record the conversations and even tag certain parts to go back and review later. I recommend it to anyone who goes to complicated doctors appointments. 

She has a livescribe pen (since she was taking college classes prior and has some LD issues). I don't know if she's using it for doctor's appointments or not, though.

[lewelma]

At 21 my niece flipped her car driving home from university. She is now a paraplegic. The grieving process was very long, but one of the things that really did help her was when she met accomplished, capable women in wheelchairs. One in particular came to her in the hospital about 4 months after the accident and spent time with over many days. This woman helped her to understand that although she would have life long health issues, she could still do what she was passionate about. After 3 years of therapy, she went back to university to get a masters degree in costume design and teach classes for a while at UCLA. She also put herself out there and met a wonderful man and got married. Basically, she needed to know that these things were possible even with her major disability.

[prairiewindmomma]

Tread cautiously on taking over or doing anything other than saying, “hey, I read this study that said xy and z? Would you like the link?”  At 23, she is an adult. She may not make the same decisions you would but they are hers to make. 
 

I would have totally shut my mom out and down if she had demanded I return home or done anything at that age. I already had medical stuff at that age, but my body, my decisions. There was so little I had control over—medical stuff needed to be in my domain, iykwim. I was open to info and suggestions but I was quite capable of handling it all, even then.

Chiari would show up in a mri; you can always send the data over for a second or third review by other neurologists. Don’t be surprised when they want to send her to opthamology, rheumatology and possibly endocrinology.

 

[Kassia]

1 hour ago, lewelma said:

At 21 my niece flipped her car driving home from university. She is now a paraplegic. The grieving process was very long, but one of the things that really did help her was when she met accomplished, capable women in wheelchairs. One in particular came to her in the hospital about 4 months after the accident and spent time with over many days. This woman helped her to understand that although she would have life long health issues, she could still do what she was passionate about. After 3 years of therapy, she went back to university to get a masters degree in costume design and teach classes for a while at UCLA. She also put herself out there and met a wonderful man and got married. Basically, she needed to know that these things were possible even with her major disability.

Wow, what an amazing and inspirational story.  Really puts things in perspective. 

[popmom]

6 hours ago, PeterPan said:

Doesn't make sense to lose muscle weight. She's getting a 2nd opinion?

I’m going to suggest that to her because I’m just a firm believer in getting second opinions. I’m working on getting some names of specialists here. There is no one else where she lives, so she’d have to come here. It’s just a 2 hour drive.

[popmom]

3 hours ago, prairiewindmomma said:

Tread cautiously on taking over or doing anything other than saying, “hey, I read this study that said xy and z? Would you like the link?”  At 23, she is an adult. She may not make the same decisions you would but they are hers to make. 
 

I would have totally shut my mom out and down if she had demanded I return home or done anything at that age. I already had medical stuff at that age, but my body, my decisions. There was so little I had control over—medical stuff needed to be in my domain, iykwim. I was open to info and suggestions but I was quite capable of handling it all, even then.

Chiari would show up in a mri; you can always send the data over for a second or third review by other neurologists. Don’t be surprised when they want to send her to opthamology, rheumatology and possibly endocrinology.

 

I’m going to see her this week to discuss what she needs from me. I’m not the type to swoop in and take over, but I do like to have all my ducks in a row in case it’s needed. Did I mention she’s VERY STRONG WILLED? 😂 She has no trouble setting boundaries or telling me how she really feels about something. But so far she has wanted me involved—wanted me at appointments, etc. I expect she’ll actually want me more involved at this point because it frees her up to focus more on her studies. 

About your second part...this is what I’m hoping for. I hate the thought of more tests and doctor visits, but I do think there needs to be a little more investigating before we can be certain this is truly idiopathic. I wish she had a really good primary care doctor, but she’s only had the university clinic. They are good there, but it’s not like she has a relationship with a single doctor there—if that makes sense. 

Edited May 31, 2021 by popmom

[popmom]

So she has moved past anger and that DRIVE is kicking in.

She started texting me earlier. She's invited me to online support groups, sending me links to articles about other conditions that are linked like hypoparathyroidism, Epstein Barr, etc. This is very encouraging to me because sometimes her fear of doctors and procedures makes her just want to stick her head in the sand. 

She did acknowledge that she thinks lifting may trigger migraine type headaches, so she is going to back off this week and just do some cardio. 

I know she's not completely done mourning. There will be hard things ahead, but at least tonight she feels strong.

 

 

[BeachGal]

8 hours ago, popmom said:

I'm mulling all of this over.

I'm going to start a list of phone calls to make, apps to get, etc.

Initial lumbar puncture is to determine pressure level--and I'm sure they will drain some to reduce pressure. I think the first thing they try is a a diuretic like Diamox. 

The doctor suggested she lose 10% of her body weight. Supposedly that can help. But I want a second opinion on that, too. She's nowhere close to obesity (which is a risk factor for this). She's a healthy, curvy size 6 who likes to lift. She goes to the gym several times a week. 

Losing weight might help if it makes an individual with IIH more insulin sensitive. More likely, a metabolic shift, and not so much “losing weight,” might help. So, eating a diet that shifts from insulin resistance to insulin sensitivity could help and for many, weight loss (fat loss—even a little) while maintaining muscle can help. 

It is possible to be insulin resistant and not have many obvious noticeable outward signs for even long periods of time. Primary hypertension warrants looking at insulin. Always. Not so much blood glucose but insulin. Has her fasting insulin levels been checked?

Btw, my husband is tall, thin and lean — in his 60s, bikes, muscular — and has somewhat high levels of insulin. (This probably contributes to his migraines.) It is possible for some to be lean and insulin resistant. Conversely, obesity does not necessarily mean someone is insulin resistant, either. Some obese people produce numerous small fat cells that allow them to remain insulin sensitive whereas others have fewer fat cells that become larger as they get fatter and thus are more insulin resistant. So, it is possible to be obese and insulin sensitive. And it is possible to be thinnish and insulin resistant.

If you want to learn more, researcher Benjamin Bickman has written a book about insulin, how it works and what effects insulin resistance can have in Why We Get Sick. It’s an excellent book, IMO.

Regardless, I hope your daughter finds something to help her. ((( )))

[popmom]

@BeachGalthat is VERY interesting. I will look into this further.

Edited May 31, 2021 by popmom

[BeachGal]

19 minutes ago, popmom said:

@BeachGalthat is VERY interesting. I will look into this further.

Bickman has YouTube videos as well. He researches insulin so is worth checking out.