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preparing for severe HG (followed by severe SPD!) - anything we've not thought of?

(13 Posts)
kalidasa Wed 19-Feb-14 09:00:37

OK so as those on the HG thread may remember I had v. severe HG. Sick immediately, hospitalised for the first time at only 5 weeks, unable to get out of bed at all for four or five months and although it improved after that I was on medication and still throwing up the whole way through. I did not have a single nausea-free moment at any point. I also had problems with nausea and occasional vomiting for several months after giving birth. In addition I had v. severe SPD and was on crutches from about six months and in a wheelchair at the end. Unfortunately I have to be prepared for both of these conditions to recur (and the SPD is likely to be a bit worse I think).

So we are gearing up for a second baby and this is what we've thought of so far. Any other suggestions?

- work (HoD and key colleague) are aware that I might be off for the entire nine months; my work load for the summer and autumn has been designed to be easily reallocated, and I'm on leave in the spring anyway. I've also told my PhD students so that we can plan their work and identify back-up supervision in advance.
- I am currently 'clearing the decks' and finishing a couple of big projects. I was so stressed about work last time so this time I am going to have v. low expectations and try to assume that I will achieve nothing the entire pregnancy - anything will be a bonus.
- I have had a preliminary discussion with the GP and they have agreed to prescribe everything in advance (before pregnancy because I was so ill so quickly). But I was on max dose of four anti-emetics by 7 weeks last time and it only made a small difference so realistically I am not expecting a major improvement.
- we will order food replacement drinks (Ensure) as last time I just kept on going back into hospital until they prescribed those
- we are planning to get a lot more help at home: either switching to a full-time nanny for DS (so no drop offs/collections etc) or a mother's help who will do all the fetching and carrying and then some housekeeping during the day. We already have a cleaner. We want DH to be able to focus on emotional support for both me and DS rather than housekeeping stuff.
- DH is five months into two years of research leave so good timing from that point of view
- MIL lives abroad but has bought a flat round the corner from us so she can come regularly, and my parents could e.g. use it when they are not there

Are we missing anything? Any top tips from other HG veterans? We have some savings and we are really prepared to throw money at this if it will help all three of us to get through this a bit less traumatised than DH and (especially) I was by the last time!

PunkStar Thu 20-Feb-14 13:15:56

Hey!
Saw your comment on the HG thread. I'm currently at 25 weeks second HG pregnancy.
We prepared! By week eight I was on my fourth anti-emetic (ondansetron) but my weight was still dropping pretty quickly and I was bed bound. Early intervention didn't seem to help in my case.

What has saved me this time is steroids. I was commenced on prednisolone by a specialist in HG. Within 12 hours I could gulp down drinks, my dose did need increasing after one week, however this stopped all vomiting and gave me an appetite. I gained weight. It's still been tough, the nausea is still terrible at times and when I started to reduce the dose the vomiting would return. I'm only just planning on some PT work from mid-March. The HG is still there as in the usual smell, motion, lights etc but I've been able to cope.

http://www.helpher.org/downloads/Taylor-research-prednisolone-treatment-2009.pdf

This is from the Helpher support site. This is the consultant I have been seeing throughout my pregnancy (an endocrinologist)

It's just worth considering medication wise if things get severe again. Anti-emetics did nothing at all for me :-(
I think some obstetricians are a bit frightened about using steroids though as it's not something they use frequently.

Good luck!
If there is anything else you would like to ask or know I would be happy to help :-)

kalidasa Thu 20-Feb-14 14:57:30

Thanks punkstar. They were v. close to putting me on steroids at about 9 weeks last time as I was still in ketosis after days and days on a drip and all the drugs they could think of. They held off though because they really prefer you to reach 12 weeks first I think? And by then I was still bed-bound but managing to stay out of hospital.

Can you tell me what dose you are on? The weird thing is that I've been on prednisolone for months (just coming off it now) for rheumatoid arthritis and as far as the rheumatologists are concerned steroids are one of the only things you CAN take in pregnancy (if you have to). It's a bit weird as the attitude is so different. Perhaps the doses involved are very different too?

I'm also a bit concerned because I was OK on a low dose of prednisolone but above a certain point it was messing with my mood (became hyper). Once years ago I had a manic episode triggered by medication so I need to be really careful with this. On the other hand, in an HG pregnancy I think the anti-depressant effect of steroids might be quite welcome! (I seem to be v. sensitive to this effect, even at a v. low dose it definitely helped me recover from PND when the rheumatologist put me on them).

Sorry to hear the preparation didn't make much difference to you. I reckon it's worth a go but I am trying to be realistic that it may not make much difference, especially as they did actually get me on all the drugs pretty quickly last time (was on everything by week 7). How has your second pregnancy compared to the first in general? Have you found being prepared has helped psychologically? What's the gap between your pregnancies?

McBaby Thu 20-Feb-14 15:17:47

Sorry I have no experience of hg but currently in second pregnancy with SPD at 30 weeks and it's manageable.

It was awful lat pregnancy and signed off work from 26 weeks as I couldn't sit in a chair for work, walk or do very much etc. although i have a toddler and I at home full time this time I have had SPD twinges since very early on so have been a sounding all the usual things since very early I.e shopping trolleys etc I have also found an amazing osteopath who specalizes in women and pregnancy which is really helping keep it at bay. I manage to get out of the house with my dd each day and look after her so it might be worth finding someone who can help before you get so bad that nothing really helps.

kalidasa Thu 20-Feb-14 15:39:45

Thanks for commenting McBaby, I'm glad you have found it better this time, that's encouraging. I think part of the problem is that because I was bed-bound by the HG until about five months, and then still mostly after that, I was very weak and it was very difficult for me to access any additional support (e.g. osteopath). If I had a better pregnancy I would definitely use the first half of pregnancy to really focus on keeping a strong core and good posture etc to try to fend off the SPD. I gather that vomiting so many hundreds of times is in itself bad for your pelvis because the 'downward' force each time is so great!! I also had apparently very "pure" SPD - very focused on the pubic symphysis itself - and (I was told) probably very hormonal in origin. I found that other issues I had with back and pelvis pain more generally did respond to physio, massage etc but that the pelvis itself just kept getting worse. The physios I saw noted that I was extremely "stretchy" - all my other joints were too wobbly as well so presumably I was really pumping out the hormones. In the latter three or four months of pregnancy when I was being less sick but still extremely nauseous, and increasingly disabled by the SPD, I found it very hard to balance my need to rest my pelvis against how depressing I found it not to be able to go out etc, especially after such an awful first six months. So I probably did too much to try to avoid getting very low. But then I think protecting my mental health is a real concern too so it's hard to get the balance right. On the plus side I had a good birth despite being extremely disabled at the end.

PunkStar Thu 20-Feb-14 16:01:33

The regime they use here is 10mg three times a day. After five days I started vomiting again and couldn't eat so it was increased to 15mg thrice daily. This really helped. I stayed on that for two weeks then began reducing by 5mg every five days. Sometimes had to increase dose but now down to 7.5mg daily. The usual maintenance dose is 15mg but I needed 20mg daily. Most people are off them by 20 weeks.

Yup, my consultant is not fazed by the steroid use at all, I'm not surprised your rheum wasn't either as they are both medics and use steroids all the time. Bit of a scary med for obstetricians. The professor I see gets referred all the severe HG patients and he has treated over 200 women with pred he also says they are happy to use after five weeks gestation.

The issue in the past had been some studies which have shown an increased risk of cleft lip in animal studies only whereas this hasn't been the case in human studies. My consultant discussed this at some length and emailed the paper I linked. Shows the lack of evidence for this. My scans have been fine too :-)

My little boy was 15 months when I discovered I was pregnant. I started cyclizine and B6 straight away, and managed for the first couple of weeks although could feel things escalating. I felt positive to start that I may not get HG again but by seven weeks was pretty much bed bound.
My little boy goes to nursery two days per week and I stay at my dad's house for three days as I can't really manage to look after him easily. It sounds as though you have some of this covered!! My in laws have visited a lot to help too!

I've coped much better this time, partly because I've had such great medical care and a very supportive family and friends. I also knew what to expect.
I was the same as you last time, I had such high expectations of what I should be able to do and felt so guilty about not eating right, not exercising, not getting back to work until 20+weeks. My consultant also reinforced that rest is an important part of managing HG and being active will make it worse.

I still find it torture some days and desperate to get to the end but I don't think I've felt as low as I did during my first pregnancy. I think this is due to being put on prednisolone and having some control over eating along with a greater sense of well being. They are not a miracle cure but it's turned severe HG into a much milder and more tolerable illness.

McBaby Thu 20-Feb-14 17:10:06

The osteo I'm seeing does home visits so I would find someone who can help even if you can't get to them.

I have hypermobilty so I am v stretchy and the hormones make it much worsen

kalidasa Thu 20-Feb-14 18:27:46

Good idea McBaby. Will do some ringing around over Easter (we aren't going to start ttc until April at the earliest as I have several projects to finish first).

Thanks for your post punk that makes things much clearer, I've always found it confusing. I wish they'd tried the steroids last time to be honest. I only managed to stay out after that last admission because I did literally nothing, a lot of the time I couldn't even sit up in bed, I threw up even if I turned over and that was on the max dose of everything including ondansetron. It was totally unutterably miserable and DH says it was as if I was dead. If I'd had less support and had to try to do anything at all I would definitely have ended up readmitted. I think if it is as bad as that again I will ask about the steroids, though I guess it will the same consultants with the same protocol as it will be the same hospital, and the dose does sound a bit worrying re: mental health stuff - I was fine on 10mg but it was 15mg a day that sent me a bit loopy and you were taking a lot more than that. One of my best friends is a doctor in paediatric intensive care and she says whenever they have no idea what to do, they try steroids!

Good though to hear that you've found it more manageable the second time. At least we know what we're getting into . . .

PunkStar Thu 20-Feb-14 18:55:35

Glad the info has helped Kalidasa. Steroids do seem to get used for lots of things!

It sounds like you are doing everything you can to preempt the HG. Fingers crossed you get lucky and don't get it!
I think having any extra knowledge is helpful. It sounds like your life was completely miserable last time.

I have a CS planned for 39 weeks, I had one last time due to breech. It sounds terrible but I can't face being pregnant any longer than I have to, so opted for another CS rather than risk potentially going two weeks over and trying for a normal delivery....
So 14 weeks left and counting!!!

Good luck to you x

LucindaE Thu 20-Feb-14 18:58:36

Hello, Kalidasa, I remember your awful sufferings well. You kept your sense of humour, anyway. Mad Lucinda from the Hyperemesis thread checking in. I see lovely Punkstar has already recommended steroids, and I am sure before I must have suggested giving Acupunture a go for the Hyperemesis and wondered about Osteopathy for the SPD, but can't think of anything else.
xx

kalidasa Fri 21-Feb-14 11:52:06

Hi Lucinda kind of you to drop in! Yes, I did try acupuncture last time - it seemed to help a little bit during the actual session and for about 30 minutes afterwards but not longer than that. I only had one session though because I was admitted to hospital the next day!! I might try it from earlier on (that is, immediately!) next time. Though it will be funny when I book in and explain "well, I might be about 24 hours pregnant but I am trying to avert hyperemesis . . . "

I did also see an osteopath for the SPD but again I think it was too late. If I am well enough re: vomiting, I'll try to do it earlier too, and will also follow up the home visit idea.

kalidasa Fri 21-Feb-14 11:54:08

punkstar I TOTALLY understand about opting for the CS. They talked about inducing me at 37 weeks at one point (just out of sympathy I think!). In the end I went to term (was 39 weeks) and I'm glad I did because actually the birth was the only bit of the entire pregnancy/post-natal period that I felt positive about! But in your situation I would absolutely book myself in, no question. Gives you a definite date to work with as well which I think would help get you through those final weeks. Good luck!

LucindaE Fri 21-Feb-14 13:01:58

Kali Oh dear, I know I was lucky in that Acupuncture helped me dramatically, but that's really disappointing in your case; most people found that it helped for a day or two at least, but for you to be in hospital the next day, it's effect on your Hyperemesis was like trying to stop a charging elephant with a pea shooter...

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