Any hopeful PKU mums to be out there?

[bambi07]

Hi all,
I'm 30 and have PKU, having suffered a 12 week MC earlier this year, we are ready to TTC again.
Wondered if their are any other PKU ladies out there who would like to share their stories of keeping their levels steady or cravings that have driven you crazy, fortunately I craved fruit salad which was handy as I spent most of my time on 6 exchanges.
I know we are few and far between but hopefully there is someone out there in the same situation. Would love to hear from anyone really even for a general TTC chat.
xxx

Hi Bambio7.
I have 2 kids with PKU so I cant share any advice or stories on TTC but just wanted to wish you all the very best.

Chicksy

Hi Chicksy.
Thank you for your well wishes, its always lovely to hear from people in the PKU community. I have to admit it is usually mums of PKU children I speak to, I cant seem to find any people my own age but I will keep looking.
I'm the youngest of 4 children but the only one with PKU, it must be nice for your children to have someone so close to them that understands the condition. My brother liked to torment me when we were young, he's only a year older and we were very argumentative. There were times I wanted to kill him especially when he ate his chocolate very theatrically in front of me and told me how delicious it was. He survived and I love him now!
I would love to pick your brain a little if you don't mind I'm always interested in everyone's experiences of PKU, there aren't too many of us and its lovely to speak to new people.
Have you tried the new range of prescription foods from Mevalia? The bread is surprisingly good.
Anyway again thank you for your kind wishes and hopefully hear from you soon.
Lucy.

Hi. That must have been very hard growing up. I do think having two following the same diet does make it easier and they are quite supportive of each other. My youngest doesnt have pku so that was really weird for me, it was almost like being a first time mother all over again.

Have you stayed on diet all your life?

I have met a few adults with pku over the last few years.
Luckily we have also met some lovely families with pku children too and it is great that the kids have friends who are exactly the same as them.

I got the hamper from Mevalia and the kids loved all of it. I have just requested my first prescription to get it all for them. It is fantastic.

C

Hi Chicksy
Thank you for getting back to me again, it's been very quiet on the PKU front!

Iv always stayed on the diet but during my 20's my doctors were quite happy for my levels to be around 500-1000 so it was a lot more relaxed than when I started trying for a baby. During this time my levels have had to stay between 100-300, which was tricky to begin with but is easy now I'm in the habit again. I have to say that I do feel much better for having lowered my levels, much clearer head and a lot better focus all round.

I had a bit of a melt down after the MC and ate a lot of things that I shouldn't but quickly got back to the routine. I go to some of the conferences and workshops but they're never very close and don't always fit around work. Have met a few people my own age through them but not many and we're all at different stages with regard to children and it would be quite nice to go through it at the same time, which I think will be somewhat impossible.

Being pregnant with PKU is quite a challenge, morning sickness causes a few complications and I didn't want to eat anything for 12 weeks which is just about as bad as eating too much. Saying that, can't wait to be pregnant again!
bambi07

You have given me hope for my kids when they are older.
I do worry about them maybe coming off diet and what it might do to them but for now they are very disciplined and stick well to their exchanges (they are both only on 6-7)

I am sure though there will be times along the way it might not always be the case.

It must take so much discipline to keep your levels so low but obviously will be very worth it.
I hope you get your chance again very soon.

Good luck

C

Hi Bambio7,

I'm 29 with PKU and I'm nearly 10 weeks pregnant. It's certainly a challenging time and I seem to have spent the last 5 weeks petrified! Like you I have always been on the diet, but my levels are currently all over the place so it's quite hard to plan meals for the week ahead when you suddenly drop from 6 to 2 exchanges (like today!) I've been fortunate in that I haven't had any actual sickness just constant nausea. Getting the calories in at the moment seems to be the hardest!!

I can see that you haven't posted in a while so I hope all is going ok. I'm available for a chat if you fancy it about levels or life in general! I've not really met any adults with PKU and sometimes it's helpful to compare notes!

Take care

Rachel.

Hi Rachel

Congratulations! I too am pregnant again but only just, so am a little behind you but we are kind of in it together. yay!
My levels are also all over the place but not had any morning sickness just a smidge of nausea, but I have had a throat infection which could be the reason.
Iv been struggling with getting enough calories too, I drink plenty of lucozade usually. Iv been taken down to 4 exchanges but we will have to see the next test results.
I would love to chat, let me know how we can sort it. I look forward to hearing from you soon.

Lucy

Hi Bambi,
Im 30 and PKU too - will be ttc very very soon :-D
Congratulations! How is it all going?