Pregnancy and pku blues

[bambi07]

Hi all
I am feeling really fed up and can find no websites to talk to other PKU mums to be, so im going to rant here in the hopes of someone who might listen and hopefully talk me out of my bad mood.

I am 14 weeks pregnant and I have PKU, which for those of you who dont know, it means I have to be very careful what I eat, as my body cant process phenylalanine. If I eat it, it builds up to dangerously high levels in my blood and can damage the baby's brain, heart or can cause behavioural problems. I have to eat a limited amount of protein and do regular blood spot tests which are monitored by my dietician and my protein allowance is altered to either increase or decrease my protein levels.

I dont seem to be able to control my levels at all at the moment they are going up every test and I am eating less and less protein. I had a missed miscarriage earlier this year and the only syptom I had was that id lost it, was that my levels were going up constantly and I couldnt seem to bring them down, the same as now.

I am so fed up of worrying about eating all the time and dreading the phone ringing in case its my dietician to tell me theyve gone up again, like she just has. My doctors make picking up my prescription an ordeal and I have to make endless appoinments to adapt the presciption to suit what I need for my levels. Im exhausted and I find myself constantly praying that I'm not causing damage to my tiny baby and it doesnt help that my inlaws have told me I'm being selfish trying to have a baby because they are convinced I'm going to cause some problems, even though lots of people with PKU have perfectly healthy babies all the time.

Need to get my head sorted and stop crying, just all feelig too much. Sorry to go on. x

[13Stitches]

Hi Bambi,

I'm sorry you're having a tough time. The diet is hard enough at the best of times but with your pregnancy as well, I can see how it's so stressful.

I've not seen much about PKU on here but there are a load of Facebook groups where people will be able to help you with recipes and general emotional support managing PKU. Have a look at //www.facebook.com/groups/PKUUKIreland

How supportive and knowledgable are your GP and midwife? Do they understand the importance?

I get the feeling you are panicking that the escalating levels indicate another mmc? You should ask for a scan to reassure you. If everything is ok you might be able to focus on the diet easier.

How was your diet before conception?

[bambi07]

Hi 13Stiches

Thank you very much for the link, I'm sure it will help to conatct people in a similar position.

My GP is sometimes supportive but occasionally a nightmare, I have been told on a few occasions "no" when I have requested a prescription, but I'm hoping that is a thing of the past since I made a formal complaint. My midwife is my mum at the moment, I have another but usually go through my mum when I need anything. She is wonderful. My partner rang her last night when I was upset and she came over to listen for the heartbeat and we got one, so I was greatly relieved. I have an oppintment with my consultant at the hospital soon and my dietician is preparing some notes for me to hand over.

It doesnt help that I have lost my job too and we are now getting by on a very low income and I feel a bit useless, it doesnt help also that I am already showing quite prominently, so have to worry about hiding the bump when attending interviews. Not terribly comfortable with not being upfront about pregnancy either particularly when I attend more hospital appointments than a regular pregnant person, but feel I will never get a job if I'm honest.

Thank you again xxx

[13Stitches]

Is your dietician helpful? Ours is great, we can email her and if there's a problem with the GP we can ring or email and she'll contact to sort him out!

There is a leaflet somewhere on the NSPKU site (are you a member?) that spells out to doctors that there shouldn't be restrictions on prescription foods.

Glad your MWmum is so helpful! And glad to hear your baby is doing well!

Sorry to hear about your job. You definitely don't need to tell people at interview. They might not be happy if you get a job then go off on leave, but the law is on your side. Also, if you're the right person for a job they'll be happy to have you back after leave.

Good luck with everything. Hopefully the PKU people on that group will be able to help!

[bambi07]

Hi thanks again,

Luckily when I made an official complaint to the practice manager, I found out she used to be a dietician and worked with my current dietician and she has told me that she intends to arrange training for all GP's at my practice regarding PKU. I have handed over the leaflet to my doctor twice but it is clear that they never read it. I am hoping the practice manager is cracking the whip a bit, as I have been registered with them for 12 years, so its about time they showed some interest in learning a bit about my condition!

I am a teacher and registered with a supply agency for now and will keep applying, I have a while before baby is due. I may take a different job for a while though, to take some pressure off and there are never many teaching jobs around this time of year. Thanks again

XXX