View Full Version : Severe health anxiety about daughter
Hello everyone!
I've been lurking for several years, but never posted here. I've been posting on another health anxiety forum, but for unknown reasons I don't have access to it anymore :-(
I feel like I need to talk to someone who understands, because the situation has gone too far, and I'm in the deepest health anxiety hole of my life right now.
I became an hypochondriac 5 years ago, after traumatic miscarriage after years of infertility. When I realized that I'm a hypo, I started fighting it pretty successfully.
But, When I was pregnant again last year, my husband was diagnosed with Hepatitis C and right after that with kidney cancer. It was a big blow to my nervous system, but I haven't felt it right away. I was side by side with my husband, fighting cancer and then Hep C bravely. Hep is cured now, cancer was Stage 1 with very-very low chance of coming back.
But my hypochondria is back now, and it is only my 9 month daughter I worry about now. I've already diagnosed her with several serious and rare diseases, taken to several docs. All is fine, of course.
But latest case is the craziest one. On his last follow-up ultrasound my husband discovered that he also has a very small benign renal tumor called angiomyolipoma. When I googled it, I found out that these tumors occur in up to 80% of patients with tuberous sclerosis. They happen to healthy people too, and majority of clinical cases are exactly about healthy people. My husband has no other symptoms (like mental retardation, epilepsy, skin issues). But it sent me to a hypo-spin anyway. The biggest problem is that I continued googling, and found out that combination of kidney cancer and this angiomyolipoma are also associated with tuberous sclerosis (TS) ! People with TS tend to get kidney cancer a bit more frequently. A small percentage of them is not diagnosed until adulthood, they even don't know they have this condition.
As TS can be passed to children, I'm worried crazy about mydaughter now. I'm sure husband has it, just undiagnosed, and that daughter had it too. When symptoms (epilepsy) start in childhood, it leads to mental retardation. About half of TS patients are mentally disabled.
Now I'm convinced this awaits my daughter. She has zero symptoms, but I can't get it out of my mind. I don't sleep, eat, function normally. I drive my husband crazy about possible symptoms and his medical hystory. I asked online docs about probability of TS in this case and been told "no way", but it didn't help.
I scheduled a head MRI for daughter in 2 weeks to check for brain symptoms. She will require sedation, but I'm so crazy already that it doesn't stop me.
I google about TS all the time and can't stop that too. I'm ready to pay big money for genetic testing, which can't give definite answer, just 85% probability.
I'm desperate and don't know where to run, where to seek help.
Rational part of me says that angiomyolipomas are relatively common ( 1 in 360 men will have it), that husband and daughter have no symptoms, that a very good online neuro told me I have nothing to worry about. But it doesn't help. I'm writing this and shaking with fear... I can't live like this anymore, I need to know if my daughter is ok...
English is not my native language, so apologies for mistakes, and thanks for letting me vent.
I just feel that I need to cry it out, to tell someone who understands...
Hello Allochka
I don't think your fears are at all unreasonable and you are wanting to cover all angles as regards your daughter's health. She is having a brain scan and speaking as the Mum of a son born with many organ abnormalities a brain scan with sedation won't harm her at all. I'm not sure how much it would be able to tell you at this stage though and you want 100% reassurance, I'm sure.
Seeing a genetic counsellor is a perfectly reasonable thing to do. Testing will only give an 85% probability but I think that would give you a decent indication of just how likely a TS diagnosis would be? Would you be satisfied with having a small area of doubt and uncertainty to live with? Would you go on to worry about other possible diagnoses were TS to be ruled out categorically?
It's a really hard one here because you have valid reasons to be concerned but it would be a question of knowing when to accept that all will be well as far as they can tell...
If I were in your position I'd go for the brain scan and then ask to see a genetic counsellor just so as to have as much knowledge as possible (and not from Google!) I really feel for you and wish you the very best of luck and I so hope the news is reassuring and positive x
Thank you for your reply!
It was very supportive, but also a bit scary. You've said I have reasons for concern, and in my irrational state of mind I already equal it to the fact that you are sure my daughter has TS...
You are right, I want certainty, but it is hard to get with this disease. MRI would give about 95% certainty, genetic tests - 85%. I hope combination of those will give me some peace of mind, if everything is fine. But most probably I'll move to another condition then...
I tried to see a genetic counsellor, but the nearest appointment is in June. I'll go crazy by then
The easiest way would be to test my husband, but he thinks I'm hypochondriac (and he is right), and refuses to test.
May I ask how your son is doing now? Is there a reason for abnormalities you've mentioned?
Once again, thank you for supporting in this dark moment!
I did hesitate before writing "reasons for concern" because I thought you might react as you have but these reasons haven't been conjured up out of the blue-your husband's condition has prompted you to do some research (ok-loads of research:D) and you have found out more than you bargained for...
You won't harm your daughter by arranging for her to have a brain scan. Has genetic counselling been suggested by a trusted professional you are dealing with or is it a thought based on internet research? June is a long time to wait, I agree. It's the living with uncertainty which is so challenging. I think you need to have a serious discussion with a trusted health professional as to how relevant your husband's previous condition is in the potential diagnosis of TS in your daughter. They will probably give you an inconclusive response though but could guide you as to whether genetic testing would be in your and your daughter's best interests. If it would be solely in your best interests to quash your HA by proxy worries then I think you need to think very seriously about proceeding any further at this stage. Watching and waiting is what you dread, I suspect?
My son manages fine with a few missing bits in his body! He spent many months in Great Ormond Street hospital as a baby/young boy. I feel your pain and appreciate how you are thinking but these are fears at the moment and not reality. You don't want to waste your daughter's babyhood in worrying about a condition which may never be a reality. Get expert advice for your baby and you? x
---------- Post added at 11:41 ---------- Previous post was at 11:37 ----------
I did hesitate before writing "reasons for concern" because I thought you might react as you have but these reasons haven't been conjured up out of the blue-your husband's condition has prompted you to do some research (ok-loads of research:D) and you have found out more than you bargained for...
You won't harm your daughter by arranging for her to have a brain scan. Has genetic counselling been suggested by a trusted professional you are dealing with or is it a thought based on internet research? June is a long time to wait, I agree. It's the living with uncertainty which is so challenging. I think you need to have a serious discussion with a trusted health professional as to how relevant your husband's previous condition is in the potential diagnosis of TS in your daughter. They will probably give you an inconclusive response though but could guide you as to whether genetic testing would be in your and your daughter's best interests. If it would be solely in your best interests to quash your HA by proxy worries then I think you need to think very seriously about proceeding any further at this stage. Watching and waiting is what you dread, I suspect?
My son manages fine with a few missing bits in his body! He spent many months in Great Ormond Street hospital as a baby/young boy. I feel your pain and appreciate how you are thinking but these are fears at the moment and not reality. You don't want to waste your daughter's babyhood in worrying about a condition which may never be a reality. Get expert advice for your baby and you? x
There was no reason apparently for my son's congenital abnormalities. I have my own theories but his condition is very rare and it's put down as something going wrong in the 5th week of pregnancy when the midline organs are forming. Nothing remotely like your concerns x
Glad to hear about your son doing fine! Kids are most important in our lives, no wonder we worry about them the most...
You are spot on in everything! I googled and got more than I expected. The doctor who could be trusted advised online I have nothing to worry bout, but I ignore and keep googling and scare myself even more.
Genetic counselling was my own idea, when I was searching for ways to test my daughter. Or to get much needed reassurance, as we hypochondriacs do.
I think I'll get the scan, it will give me 95% certainty in case of negative result. I'll be able to live with5% missing :-)
And I'll get help for myself, decided about that. Can't live like this anymore. This is one of the darkest hours, even worse than when my husband was diagnosed with cancer ...
Once again, thank you, and lots of health to your son and whole family!
95% certainty from the scan makes it a very worthwhile thing to have done. Living with the 5% of doubt sounds do-able but you may need some support with this which you recognise. You've been through a very tough time but now you need to take stock and enjoy your daughter to the full without worrying about the unproven and unconfirmed "legacy"from your husband.
I truly hope the brain scan brings you peace and sufficient reassurance to enjoy your daughter as any Mum would expect to do.
WorryWortAgain
11-02-16, 02:01
Hi there,
Despite worrying about my son's eyelashes being dark, I have done quite a bit of research on TS. I knew that there would have to be white hair for it to be a pigment abnormality. I thought that the hair to the right and left of the black patch may have been lightening. Anyway, I'm feeling a bit better about the situation after getting an online consult.
On to your LO, does she have any hypopigmentation spots on her body? Does your husband? Does your husband have any other markers besides the benign tumor or kidney cancer?
Glad you feel better! Your son is absolutely fine!
No, no other markers in my daughter or husband. Husband does have a very small angiofibroma on his nose, but it is solitary, while they are multiple in TS. Solitary ones are rather common among healthy people too.
And kidney cancer is not a marker, thanks God. Just the combination of cancer and the tumor makes me worrying, because it is sometimes seen in people with TS (as well as in people without it).
I'm trying to be rational, but am in a very bac place right now...
WorryWortAgain
11-02-16, 04:12
Hmm, the fact that neither of them has any other markers makes me think that neither of them has TS. I read that 90% of all TS patients have ash leaf patches or some sort of hypopigmentation. And even if your DH doesn't have an ash leaf patch/pigmentation surely he'd have some other skin feature associated with it. I don't think you have anything to worry about here. If you want to do the non-invasive testing for peace of mind go right ahead but if it were me I don't think I'd do the scan if they have to put her under. Not unless the doctor thinks it's necessary. Anesthesia is always a risk and I think that the reason has to outweigh the risk. If there isn't good reason then you shouldn't risk it even if the risk is very, very small. That's my opinion anyway. Honestly, I don't think that your DH or DD has TS based in the info you've shared. (((Hugs)))
Thank you so much! I'm afraid I need this MRI is necessary for me to find at least some peace of mind. Otherwise I'll spend my days not enjoying daughter, but waiting for more symptoms, for seazures to start... :-(
It will be sedation not a general anaesthetic. My son had many brain scans as a baby with no lasting damage.
Good luck and please let us know how you are getting on? x
I know anaesthesia is risky and scary, but I'm sure the risks are tiny. My daughter had it when she was two as she had her fingers shut in a car boot and needed stitches and they said she'd need to be asleep for it and she was a little groggy afterwards but all was fine. Good luck.
Thank you all! I'm glad to hear sedation will be not dngerous. I feel terrible for putting her through this, but at the same time don't see other option. And then I'll go to therapist to stop that madness.
This won't even require heavy sedation, like you'd see for surgery being performed. It'll be very mild and not a risk in any way whatsoever.
WorryWortAgain
11-02-16, 13:35
Okay, if it's not actually putting her "under" then that sounds okay for peace of mind. But yes once you get some more definitive answers please seek help with therapy and possibly medication. The only reason I haven't gone back on my medication yet is because I'm breastfeeding. I plan to wean him in April when I go out of town. Hopefully I can make it til then. Like you I don't want him to live with a mommy that's in fear all of the time!
I definitely will. It is thr worst case of my hypochondria so far. I had theraphy when it first started 5 years ago, and sucessfully. I should try to repeat the success and stay on medication longer. I also don't want my daughter to remember childhood with scared mom and constant doctor visits
WorryWortAgain
11-02-16, 17:58
I was once told by a psychiatrist (prescribing medical doctor) that you can try to go off your meds once or twice but if the symptoms come right back you probably have to stay on them for good. I went off them once before, about 8 or 9 years ago, and the symptoms came back within 6 months. This time I've been off of them since August 2012 when I started trying to conceive. It took three years for the symptoms to come back but I was pregnant/breastfeeding the entire time so maybe that gave me some kind of protection? I don't know...as soon as I started cutting my sons feedings way back in preparation for weaning in April that's when the symptoms got really bad. I was really hoping I wouldn't have to go back on them. Not because the side effects are all that bad or anything. I just don't really like taking meds period. If I can just get through the next 2 months I'll be okay ;)
I'd better be taking meds than living like this. I'm surprised it happened to me at all. I was so careless previously. Once, before my HA, I was diagnosed with HPV of very oncogenic tupe by mistake. Doc told me I have 85% chance of getting cervical cancer due to this. I wasn't even very upset. I shrugged and thought - ok, then I'll visit obgyn more frequently to catch cancer in time :-) that was it, so easy. That attitude is lost now.
I've tried meds once, they helped, and went off them and was OK almost for 4 years. And now, after birth of my daughter, it all started again.
Let's fight HA together, if meds are required - why not?
WorryWortAgain
14-02-16, 05:13
Yes! I am going away for 4 days in April (on a trip with my DD to California) and I plan to wean my son then. Once I've successfully done so I will be going back on Prozac unless this HA drastically improves between now and then. I've been feeling a little better the last couple of days, primarily because I've been busy and also because I've been researching Health Anxiety instead of researching symptoms I'm having. Although I am going to the doctor next Friday and I anticipate my anxiety flaring up in the days leading up to that. How are you feeling? Any better? When does your daughter have the scan?
---------- Post added at 00:13 ---------- Previous post was at 00:11 ----------
Oh and there's been several times over the last 13 years (when I was in HA "remission") that I said to myself when certain health situations came up, "man, if this had happened when I had HA I would be a complete basket case!" It's really crazy, isn't it?
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