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TTC or pregnancy on prednisolone or similar part 11

(1000 Posts)
Buzzybee123 Mon 19-Aug-13 22:25:50

This is a positive thread for all those diagnosed with High or Very High NK Cells and looking to start TTC or already pregnant on Prednisolone and/or Intralipid treatment.

Newcomers very much welcome!

teamdozie Sun 25-Aug-13 08:01:15

Hahaha Buzzy its either that or we take it out of the little ones pocket money.. lol..

He told me not to go to the hospital for scans as it may confuse me. I have got it right its a scan there at every two weeks? writing it all down seems too many..

When the time comes ill look into baby bond thank you.. I still fear the worst so i will probably go to the EPAU as well.. (God have to let go of this negativity)

Free have a great holiday.. and it will be a well deserved kidney too lol..

We just came back from a mini break needless to say im NEVER drinking again.. lol


Buzzybee123 Sun 25-Aug-13 19:49:06

team I only had one scan with Shehata at 8 weeks, I had already had 3 at EPAU and I booked in a private one and had a reassurance scan with the NHS after that, I had no confusion what so ever, all you want to hear is that there is a heartbeat and all looks right for that stage. If it didn't then you could go and see him, but to be honest there isn't much he or the NHS can do if things aren't.

When I had a bit of bleeding he didn't say anything different to the NHS nor did he suggest anything different to the NHS. Maybe book a couple of scans with him, but the rest you can have elsewhere, he really sounds money grabbing to me

Clabbage Sun 25-Aug-13 20:45:23

cartoon thanks for asking after me. I have been in Cornwall for a few days. I'm doing ok. Still not publicly pregnant. Just want to get 20 week scan out the way. I'll probably think of another reason after that! I'm guessing my expanding waist may force my hand. I guess the fear will never quite leave. It's tricky for me as even when (if) this baby is born safely, an even more intense mentalling begins because of losing a baby to cot death.
choccy your news is joyous. I had the harmony test at FMU. The second scan was awesome. Everything is crossed for the right result.
duggs a heartbeat, a heartbeat. Yes! I totally understand the scan worries. I have done a lot of Ostrich impressions. Loads of luck. I really really hope this is The One!
team hang in there and buzzy is right, you don't need Mr S scans. It was my turning point for me. I was scanned on a Fri at EPU, measured v behind, poor growth from previous scan. He insisted (and I needed more meds) that I still saw him the following day (3 hour drive). He basically told me the same as EPU, tutted when I breathed at wrong time during scan, gave me no more meds,tried to convince me that if mmc confirmed, should have ERPC with him. Or come back if trying again ( thus ensuring another load of money). Absolutely no benefit to me at all.
Rant over!
cartooon buzzy so pleased all is going well. My 20 week scan is 4th Sept. so so nervous!
molllie you are never far from my thoughts xx

Buzzybee123 Sun 25-Aug-13 22:21:50

clabbage I am with you on the constant worry if I actually get a baby, I suppose this it what it will be like for the next 20 years or so, I can relate to feeling nervous feeling about the 20 week scan, I feel its more stressful than the 12 week, I am sure things are fine, are you going to find out what you are having

Clabbage Mon 26-Aug-13 08:31:01

Hi buzzy. No I'm not finding out. Will you? Or you cartoon?
As for worrying about the baby post birth. We no longer have a CONI (care of the next infant) in my area. This is basically a scheme supporting families who have experienced cot death. It was an absolute gem after losing Harry. It included being given a mobile apnoea monitor. CPR training and on going support. I need to do some digging to see if I can at least source a mobile apnoea. The ones you buy commercially are generally cot based. Sorry this is a bit of a negative subject but it is of course my reality. I don't want to give anyone additional fear x

cartoontrickster Mon 26-Aug-13 08:46:07

what's an apnoea moniter? sorry if I'm being thick. also sorry you have that extra worry too clabbage
all our 20wk scans are quite close together aren't they ladies so at least we can do it together. I won't be finding out the sex, buzzy?

freelancegirl Mon 26-Aug-13 16:06:55

I have been very anxious about cot death Clabbage so I can only imagine how you have been after Harry. I think for me it is because although I know it is very rare so is recurrent miscarriage so I am aware that very rare things can happen.

I wasn't getting any sleep, so when DS was around 3 months I bought a Respisense Monitor that clips onto the waist band of the nappy. We used it until 9 months when he started sleeping on his tummy and the friction of his movement made the skin rub and sore round the monitor. After that I tried to relax but it was hard and I still find it hard. I find it very difficult to go to bed at night without watching him. I know how crap that sounds!

The monitor was £75 I think so not cheap and I've bought an extra £10 battery for it, so I was thinking of selling it but now I'm actually thinking of keeping it just in case there is a next time. Of course that depends on me a) definitely deciding there might be a next time b) trying again and being able to get pregnant c) being able to not have a miscarriage and all the other variables.

Apparently babies can and do die when they are being monitored but for me I felt it would be a chance to get there quicker. I did do an infant first aid course too. Not sure if it would do any good or not but it also enabled me to try to relax a bit more and not watch him every second just every two seconds

freelancegirl Mon 26-Aug-13 16:08:20

Oh so yes Buzzy in terms of anxiety it WILL be what is like for the next 20 years or so! I found the anxiety peaked in the first few weeks of having a tiny baby to look after and has been there all the time underneath like a dull roar.

Clabbage Mon 26-Aug-13 18:54:43

Thanks free. I will have a look at that one. I understand exactly what you say about being unable to view statistics with ease. I think 6mc's in a row is one in 15 000 women, so yes all possibilities become more real.
An apnoea monitor registers each breath (we had a box that ticked) and alarms after a given period of 'no breathing'. They are not for the faint hearted as you do get false alarms but I could not have slept without one. You can get ones that go under the mattress but for me this is no good. Without going into detail, my son didn't die in his cot. It's actually why medics call it SIDS not cot death, as it misleading. I have a particular bug bear about monitors being sold without Paedriatric first aid being taught. I have also heard of women who 'front sleep' their babies but say it's all ok because they have a monitor. It worries me that they potentially give women false confidence. I think that the same criticisms are made of dopplers, the argument being that natural instinct can be overridden by hearing a heartbeat. Again, I think for women like us, our instincts are so heightened due to our experience that they are a very good thing. Women like us are never going to assume bloody anything!
Off to look up respisense...thanks free x

freelancegirl Mon 26-Aug-13 22:10:55

Clabbage it must have been awful for you. I was reading this week about a lot of SIDS actually happening in someone else's care too and they are not sure why.

I find the whole anxiety about something happening is ongoing. I manage to keep a cool exterior but every minute of the day 'things that can go wrong' go through my head. Such as today we went to the zoo and I'm visualising dropping him in a cage, an animal breaking lose...but it's the every day stuff too like being run over etc. It's always on my mind but I don't tell anyone. Not sure if anyone else goes through that! And then I double bluff myself by thinking - oh well, if I've thought it it won't happen - but THEN if I double think that and think it WILL happen. Mad, I'm sure.

I've accidentally clicked onto threads here on MN and they've been about SIDS or similar then I can't get them out of my head. I lurked on the due in July thread when pregnant but wasn't confident enough about the pregnancy to post there and one of the babies died at 13 weeks of SIDS. It was awful.

Sorry - I realise I've probably gone on about it a bit much there. I guess I just wanted to say that the mentalling hasn't stopped - just changed. I see parents out and about and wonder if they are thinking the same or is it just me. I have no PND or anything by the way, other than all that am very happy.

duggs1976 Tue 27-Aug-13 06:47:29

Ummm it's interesting reading this free. I have been wondering about the longer term affects of RM. ( haven't even dared imagine the loss of a child once born). I naturally am a glass half full person. Too much so. I always have thought that whatever it was it would turn out ok in the end. Now I don't know what I think. I do imagine the things you talk about - I think of my anxiety at getting pregnant,IVF failure, chemical pg, early mc, chromosomal abnormalities all things I've experienced before. Then my mind wanders to late, mc,giving birth, still birth, SIDS, accidents in the home, the car, at school and I hate myself because any one can die at any point and as humans we have accepted that early on. I'm angry the balance has been skewed and will need to be extra aware that I will need to try extra hard to counter that balance. We have one life - just sometimes things happen that make you question if it is just all some random free for all as any theologians or philosophers out there will argue - best not think about anything too much or you'll probably not get out of bed. It is good to be able to be open about the irrational thoughts that my emotional mind has and my logical mind cringes at.

teamdozie Tue 27-Aug-13 07:37:04

Clabbage and Buzzy

Thanks for the info.. i must admit i have been worrying about costs etc but also what if i was only seen by him and i had another mc .. i wouldnt be able to go to the hospital i have been going to..

I have been going to a hospital in London as the one near me is HORRIBLE..

I just wanted to say that i hadn't realised the traumatic experiences some of you have been through and i want to apologise. I can only wish you all the best for the future..

God its 7.30 am and im blubbing.. whats going on lol?


brownstag Tue 27-Aug-13 08:30:08

Free and Duggs, I agree it never stops unfortunately. My DS is now 4 and I still check his breathing every night when I wake up. I still have horrible images of this, that and the other happening, always thinking the thing that 'gets him' will be the thing that I didn't predict, so I have to try to cover every eventuality. I went through hell this year thinking he had lymphoma, couldn't sleep, couldn't understand why no one realised he was ill except for me. For me, the whole thing led to severe postnatal illness at 3 months and took a long time to resolve; I think if you're already inclined to anxiety as I am, the long-term effects of the stress of RM can be overwhelming. I suppose it's very difficult to accept you've finally got you wanted, so something's got to go wrong! I still take medication for my anxiety/supposed bipolar disorder and it is very good, but as it makes me put on weight I'm in a constant battle trying to find the perfect formula of minimum weight gain/minimum possible anxiety. In other circumstances, I think this kind of anxiety could be useful (as in my job of copyediting, being OCD-inclined helps me to do the best I can), but motherhood is a repetitive role with few breaks and few points at which you can say 'I have achieved this; it's finished and done!' about anything.
My God, that sounds negative! That isn't the whole story by any means, as my DS is my life, and I count my blessings every hour of the day, but it's the undercurrent playing while all the normal, good stuff is going on in the foreground.

duggs1976 Tue 27-Aug-13 08:54:52

I think our society cucooning us has made things worse. 100 yrs ago women had children and "expected" to lose some along the way at various stages. We expect everything. Expectation management...

Bakingtins Wed 28-Aug-13 20:07:31

Hi everyone. I posted a few times on the prev thread, but have not really become a regular. I have 2 boys and have had 4 MCs, one in between them then 3 in the last year all at 8-9 weeks. Thanks to some advice here we went to see Prof Quenby and I've been diagnosed with high uterine NK cells on a biopsy, my result was 16% and the normal is <5.
I have a phone appointment with her next week and I'd appreciate any suggestions about what I should be asking. Her protocol is 20mg prednisolone from a BFP until 12 weeks then taper off.

duggs1976 Wed 28-Aug-13 21:43:02

I remember you baking. So glad you have an answer. Folk with a child already seem to 90% have nk raised cells- it is pretty high and pretty good chance the treatment programme will work quite quickly if you conceive ok.
Wonder if she will prescribe aspirin or clexane too - doubt it but some dr.s do. You could ask her about intrallipids as apparently they last 3 mths so might be something in that to help calm them down from the offset? Let us know how you get on. X

Havingkittens Wed 28-Aug-13 22:57:49

Just popping in to apologise for not getting it together to send those books yet. Time just seems to disappear at the moment! I will try to get them out this week.

Free, I also have mental flashes of falling down stairs holding the baby, or things like cars careering off the road or people on bicycles on the pavement coming towards me and hitting us. He has started rolling over in his cot these last couple of days. I was hoping his sleeping bag would continue to prevent him rolling but he seems to have overcome that now and has slept on his side the last two nights. That I can cope with but he's rolled onto his front on a couple of occasions and I don't know what to do now. I've just wedged his teddy to act like a wedge to try and stop him rolling right over but now I have paranoid thoughts about him being smothered by his teddy. Oh dear!

Amazing to read that there is a flurry of positive news here. Especially for Duggs and Choccy. I have everything crossed for you both.

Havingkittens Wed 28-Aug-13 23:54:09

Just read that soft toys should be out of their cots, so that's put and end to that plan. And that once he's able to roll I shouldn't prevent him. Hey ho!

Bakingtins Thu 29-Aug-13 04:30:47

Thanks duggs good to read that you have had a positive scan smile
kittens both my boys have chosen to tummy sleep as soon as they could roll. Once they can roll over I think the SIDS risk drops dramatically. I'd go with no pillows or soft toys until they are older. 3 yr old currently asleep on his tummy in a heap of soft toys, bum in the air, completely under a tangle of duvet.....
I think when you've had a series of bad experiences, particularly when it goes well beyond "your share" of bad luck, it does skew your perspective and make you paranoid. I don't know how you get back any faith in the universe or justice.

Havingkittens Thu 29-Aug-13 12:32:52

Thanks for that bakingtins. I guess I'll let him do his thing. Although last night, ending up on his face made him wake up crying but I suppose that's OK. I think he gets a bit tangled up in his sleeping bag with all that rolling. I'm a bit sad that he has taken to sleeping on his side facing away from me as I can't gaze at his little face in the middle of the night now sad.

freelancegirl Thu 29-Aug-13 20:17:01

The sleep thing was one long stress for me kittens and I feel I only started to come out of that when DS was around 11 months. We got a sleep trainer to advise in the end, but I realise that's not the sort of issue you are talking about. I've heard of people tightly rolling up a towel on each side of young babies to keep them in place. How old is DS now - 4 months?

Brown sorry you have been through so much stress. I think it is more common than we think, maybe even for people who haven't had recurrent miscarriages. I know what you mean about thinking it will be the time you haven't imagined that bad thing happening that it happens. I now double think that - thinking that if I think it and then think it won't happen because I've thought it, that's when it will happen! Madness.

Oh when I interviewed Lesley Regan she said their research had shown that people who have had recurrent miscarriages might be more prone to heart disease and strokes at a later date. Great... Not sure whether that was just in terms of clotting issues that had been found.

freelancegirl Thu 29-Aug-13 20:21:20

Hi Bakingtins! Sorry, I forgot to say hello just then. Welcome back, I do remember you too. No specific suggestions really. It's funny how the treatment seems to be pretty similar with everyone. Hope you get results! Feel free to ask anything though as I am sure one or more of us will be able to help. You could ask if they do they do intralipids at all? And also when do you start taking the Pred - at ovulation?

Havingkittens Thu 29-Aug-13 23:08:31

I think that's just to do with clotting issues free. I remember thinking, and being told by other family members when I'd tested negative for clotting issues that in my quest for a baby I was somehow disappointed not to have clotting issues and being reminded of the bigger picture that although I hadn't found a cause that could be treated it was actually a good thing not to have clotting issues for those very reasons. I'm hoping that having high NK Cells is, back in the bigger picture, a good thing in that they will do their job later and bust any cancer cells that might try and make their home in my body.

Yes, my DS is about 4.5 months now (just 2 days younger than Jaffa's DS)

Bakingtins Fri 30-Aug-13 07:12:14

That was something I'm going to ask, actually, if having NK cells elevated has any implications for me other than reproductively. I seem to think Dr Beer linked these conditions with autoimmune diseases? Hope not.

freelancegirl Fri 30-Aug-13 09:26:19

I don't think so Baking. I think you're more likely to have high NK cells if you have an autoimmune disease - as that involves the body attacking itself - but it doesn't work the other way round as far as I know. Unless of course you had one you didn't know about, that turns up later. I have thyroid disease but it was diagnosed when I was in my early 20s and, generally, under control.

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