Hello everyone
This is my first Mumsnet post and as you can see, I’m not a Mum, but a Dad-to-be!
We’re expecting our first child. My partner Nicky is 13 weeks (confirmed by scan this last week) and has classic, ongoing HG symptoms.
I first wanted to start out and say this thread, particularly LucindaE’s first post, has been invaluable in seeking and escalating Nicky’s treatment.
I thought it would be valuable to some if they could read our clinical experiences, many of which you seem to have gone through before. Plus given we are at 13 weeks, we are not out of the woods yet.
What has happened so far
Nicky is presently 13 weeks. Following an early scan at 6 weeks, HG symptoms became progressively worse from about 7 weeks. By 8 weeks it was full-blown. Nicky’s busy job includes travelling to clients sometimes 3 times per week. After coming home from a long train trip, I got to see how bad it was becoming.
Fortunately we knew that there was a likelihood of HG in the family, so were expecting it.
Nicky changed her GP earlier this year to another local practice that came highly recommended. We still though had the usual thing of seeing a different GP every time. Fortunately the two senior partners are both female, highly experienced and know about HG.
Infuriatingly, GPs only work Monday to Friday. The out-of-hours service can be fraught and there’s no ownership of care as you are being attended to outside of your practice. That’s a concern if you become ill toward or over the weekend
Initially, our first GP didn’t know about HG but prescribed cyclizine. But alas, continued vomiting meant that the drugs were not staying down. We then asked for a referral to the hospital, which was done. That Tuesday, the assessment was an injection of cyclizine, bloods and a urine test. After the injection, a slice of toast was eaten (yummy food apparently after being able to eat nothing!), but this came back up 20 minutes later. Despite that, ketone were assessed as low and Nicky was sent home despite still not being able to keep anything down. The GAU ward sister who saw us said she had three children and really appeared to be underplaying it all. Morning sickness, ginger, woman get sick and i’ll be over in 12 weeks.
Nicky was back the following day following another GP referral. They tried her on another drug (injection). She was sick all day and her discharge letter said “was able to keep down food and fluid after injecting with…”
A complete lie. That really knocked her confidence in our local GAU and questioned the value in ever being referred there again.
There were a few other GP visits with drugs being swapped around. At this stage, I learnt about the cascade of drugs ie. the order in which they should be prescribed, I started to record what was being prescribed and when. Some had been down out of sequence. I also took the advice here and got some Ketostix off Amazon for a fiver. The underlying message here was to build our own evidence so we can present it as a full case with little room for guesswork, so mistakes, by clinical staff.
So not getting anywhere with GP drugs administered orally a couple of weeks on, we obtained a further GP referral. By this time, we had a senior partner on the case. The call to the hospital was “my patient is a nice lady and you’d better well be nice to her!”
Nicky was in for the weekend. They again got a bit funny about low ketones, but with the ward sister not on duty, the nurse in charge looked at the whole picture rather than heavily weighing on the test data. She had a few shots of prochlorperamide. But her vomiting only only started to diminish well when ranitidine was given to her for the first time. Clearly stomach acid plays a big part here. Come Sunday she was eating three meals a day and taking tablets orally. I, she and our family were elated to have a happy, smiling Nicky back in our lives.
Incidentally, reading about the Birmingham Women’s Hospital, we were all set to go there. We called and they seemed to be bang on the ball. However, our GP had her hands tied as she said the PCT would be charged if they referred outside their area. So much for NHS Patient Choice, where you can choose who and where!
Our story takes us now into the last week of August and the first week of September. We spent BH Monday and Tuesday at home together. Come the Wednesday it was clear that Nicky had started to feel worse, going back to being confined to the sofa, or bed, remaining there all day again. Vomiting didn’t initially happen, but come the end of the second week, having stuck it out, it was clear that the prochlorperamide was becoming ineffectual. The drowsiness was debilitating too.
So following a weekend taking again about quality of life, an important underlying message in the NICE guidelines, last Monday Nicky called the GP again. The next drug in line was ondansetron, which we asked the GP about. Given they cannot prescribed this, Nicky went back to the GAU for a another bag of fluids and got the ondansetron.
However, the hospital pharmacy could only give out the strawberry oral solution. We had two days trying this awful, nasty medicine, which makes Nicky violently convulse. Counter-productive! Last Wednesday was the 12-week scan. This is a brilliant experience and really allowed us to bond with baby, moving, boogying and jumping around inside Nicky, despite the life upset from HG. The sonographer thought we were do-lally! Our birth date is now 21/3/15. Though the Downs test will be two weeks, I did see the nuchal thickness is fortunately though (we’re in our last 30s so it is a concern)
Later that day, a call to the GP got us a prescription for tablets instead. My visits to local pharmacies backed up what the hospital pharmacy said. There’s a shrotage of 2x10 4mg Ondansetron tablet packs. I’ve had past good experiences with Boots. Their chief store pharmacists are always the best. He called his wholesaler, confirmed the shortage but asked if the larger packs of 30 are available. They were so great to meet someone again on the ball! The bad news was they had to be ordered, but came next day pre-10am delivery to the store. He broke the strips up into a custom pack.
Since being on the ondansetron this week, Nicky has not been sick, part from a rich fish pie incident (my fault for being too daring) and the fatigue is much improved.
We though now have an issue with constipation!
What we have learnt
Research, research and research some more.
Get a good GP and see them every time, if possible.
Change your practice before pregnancy if possible, seeking urgent advice from a poor practice is quite stressful and emotional.
Read through Margaret O’Hara’s massively insightful presentation based on her research:
www.pregnancysicknesssupport.org.uk/documents/HCPconferenceslides/womens-experience-2013-MOH.pdf
Always take an advocate with you when seeing clinical staff. Your good lady is quite ill, tired and emotional. All the factors that need to be explained have to make a rational case so treatment can be progressed to.
Ask your GP to refer, don’t completely rely on them to do this for you.
Know your local referral methods. Your GP or GAU can tell you if you ring them. In our case, it is GP or the local Urgent Care (next to the A&E) centre. However if you do end up in Birmingham at a friend’s, or in the QE A&E, you can approach and see the BWH Hyperemesis Assessment Unit (apparently)
NICE - use patient assessment guidelines as a self-questionnaire and give all this detail to whoever asks/assesses you.
Be aware of the cascade of drugs recommended by NICE and where along you are in that cascade.
Always write down what was prescribed to you and when, plus whether it was oral, IV, etc. Use the scientific, generic name of the drugs where possible.
Never try to just “cope”. Always think and observe to see if the overall trend day-to-day, week-to-week is a downward one.
Boots - they’re great. Ondansetron is not in the usual armoury of pharmacies, so it’s good to leverage their buying network,
Be nice, friendly and smile with nursing staff. Learn their names and try to build up a rapport. If they don’t come back in time, or your good lady has had another episode or a symptom flares up whilst admitted, go talk to them. They might be busy but you should get a friendly response back by being friendly. Always be affirmative, never negative or aggressive.
Partners should be supportive and decisive in helping their good lady. I haven’t been, relying too much on asking what’s going on, what’s needed etc. Sometimes “JFDI” is what’s required!