Pre-Pregnancy Counselling Appointment Preparation

Today I thought I would share my pre-pregnancy counselling appointment preparation with you, in the hope it helps others get the most from their appointments. I saw the neurology specialist yesterday & will be sharing my experience with you in the new year. I wanted to take as much information as possible to my appointment to get the most benefit from it. The information you take with you will be unique to your situation, but hopefully this post will give you a good starting point.

Diagnosis

Ehlers-Danlos Syndrome Hypermobility Type

Basilar Type Migraine with Aura – photosensitive, wears precision tinted lenses

Postural Orthostatic Tachycardia Syndrome

Irritable Bowel Syndrome

Premenstral Syndrome

Allergies

Asthma

Eczema

Hay Fever

Temporomandibular Joint Disorder

Post Traumatic Stress Disorder (past)

Along with a list of my diagnosis, I will be taking the most recent & relevant clinic letters to provide the consultant with additional information & also serve as proof of my diagnosis. I’m sure I won’t be challenged as the Women’s Hospital have always been fantastic, but I’ve had my EDS diagnosis challenged in the past so would prefer to have my diagnosis letter with me. With Basilar Type Migraine being rare, it might also be helpful to have a letter with a little more detail about this condition too.

So that we are able to evaluate the medication I am on I will be including a list of what I am still taking & the doses so that the consultant can be happy that I am off anything I need to be & make suggestions for suitable alternatives. I have worked this out with my neurologist from the National Hospital of Neurology & Neurosurgery, as well as my GP, so I’m sure I have been very well informed with what I need to stop. I have also included a list of the medication I have stopped with the date of the last dose as different medications take different amounts of time to leave the body. There are still some medications I am on that need to be stopped so I have included these with the original dose & the dose I am currently on.

Medication I’m Still On

Safe

Paracetamol (3,000-4,000mg per day)

Folic Acid 5mg

Adcal-D3 1,500mg

Lanzoprazole 15mg

Promethazine 25mg

Medication I’ve Still To Stop

Amytryptaline 40mg (Previously 75mg)

Hyoscine Butylbromide (Buscopan) 60mg (Previously 80mg)

Medication Previously On

Soduim Valporate – July 2015

Gabapentin – Last does 13/12/15

Prostap Monthly Injection – Last dose 21/08/15

Tibilone – Last dose 31/09/15

Botox for Migraine – Last dose 28/10/15

Etoricoxib 120mg – Last dose 23/11/15

Concerns & Questions

My neurologist at the National Hospital for Neurology & Neurosurgery has said that I can have a nerve block injection should the migraine pain become too much. As that would involve travelling to London, & I don’t think I could travel that far if I feel that bad, would it be possible to have the nerve block injection of Birmingham Women’s Hospital? Do they need conformation from my neurologist to be able to set that up?

If I’m unable to completely reduce my Amytryptaline, what is considered a safe dose?

I have an EpiPen for anaphylaxis, is this safe to use in pregnancy if I need it or should I have an alternative?

Cod liver oil helps ease my joint pain. Is this safe in pregnancy?

I have had PTSD in the past. My GP has said I need to be aware that this may return in pregnancy. What can I do to minimise the chance of this & Pre/Post-Natal Depression? What should I do if I think I’m experiencing these?

What are the potential complications in pregnancy for those with EDS? Is there anything I can do to minimise these?

Is there any specific physio I should be doing to prepare & strengthen my  body for pregnancy?

What are the potential complications of giving birth in those with EDS? Is there anything I can do to minimise these?

Are there any potential complications with my PoTS?

My hips are one of my most flexible areas. I have sublaxed my hip a couple of times & it’s never been the same since. What is the potential for sublaxation/dislocation during labour & how can I minimise this?

I had to make the decision to start using crutches without any support from medical professionals when my lower joints started to bend the wrong way & I was unable to move around unsupported. I’m starting to have difficulty putting weight onto my left ankle & hip. I’m also having difficulty at times using my right crutch because my shoulder pain. Should I be considering a wheelchair? If not now, how will I know if I need to consider a wheelchair? If I need to consider a wheelchair, how do I go about this?

I’m on the FODMAP diet for my IBS & have a number of allergies. What do I need to make sure I have/get enough of in pregnancy? Is there any way of doing this without including the foods I’m intolerant to? See below for list of allergies & intolerances.

For the past 2 weeks, I’ve been having difficulty swallowing. This has happened before when I reduced my Sodium Valporate. Is there anything I can take to improve this? I was put onto a course of Metoclopramide the first time, but it caused my heart rate to increase to 140bpm & I ended up in hospital.

I have been having problems recently with waking with palpitations. For a week I was also waking up terrified & remained so the entire day. There seems to be no outside reason for this. My GP has considered a short course of medication to break this PoTS cycle to give me some rest bite from it before we start trying for a baby.  Is this advisable? Might I feel worse once I finish the course? I’m not waking up scared any more & can manage the palpitations ok. Should we need to in the future, which beta blockers are safe in pregnancy?

Allergies

Drugs

Opioids (including Codine)

Metoclopramide

Prochlorperazine

Foods

Wheat

Egg

Nuts

Sesame seeds

Citrus fruits

Strawberries

Bananas

Legumes

Shell Fish

Artificial Sweeteners

E numbers 100-159

Grasses (including lemongrass & wheatgrass)

Kiwi

Mushrooms

Cranberry

Cheese

Intolerances

Dairy

Tomato

Lettice

Onion

Garlic

Broccoli

Cauliflower

Grapes

Apples

Dried Fruit

Have you heard of pre-pregnancy counselling? Do you have any experience of it? What information would you take with you to an appointment? If you want to know how I got on, you can read all about it in my Pre-Pregnancy Counselling Appointment post.

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