stargazer01
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My baby girl was diagnosed with Mcadd on her newborn screening at the hospital. I would love to connect with others with this condition.
any babies or children with Mcadd?
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My little boy was also diagnosed with MCADD on newborn screening, PM me if you want a chat I can also give you the link to a MCADD Facebook page which is very supportive.
MCADD is horrible, my little boy has a cold today and I'm worried sick will it turn into an admission
MCADD is horrible, my little boy has a cold today and I'm worried sick will it turn into an admission
stargazer01
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I didn't think anyone had replied and sort of forgot about my post. I'm so glad both of you responded!
Pennyb, I hope your little one didn't have to go to the hospital. Hope he is feeling much better!
have either of you had many admissions? I am so exhausted from getting up through the nights for Emma to nurse. Her specialist recommended every 3 hours for now.
All of the information I read terrifies me about MCADD
Pennyb, I hope your little one didn't have to go to the hospital. Hope he is feeling much better!
have either of you had many admissions? I am so exhausted from getting up through the nights for Emma to nurse. Her specialist recommended every 3 hours for now.
All of the information I read terrifies me about MCADD
Hi Stargazer,
Yes he's fine now and kept out of hospital. He is 14 months old and so far no admissions, I know im very lucky with this as most with this condition do have a few admissions. He's now allowed a 12 hour fasting period overnight so the extra sleep is great for all.
I see you are in the USA I understand they treat MCADD a little differently than the way we do in the UK.
If either of you want to chat please feel free to PM me.
Yes he's fine now and kept out of hospital. He is 14 months old and so far no admissions, I know im very lucky with this as most with this condition do have a few admissions. He's now allowed a 12 hour fasting period overnight so the extra sleep is great for all.
I see you are in the USA I understand they treat MCADD a little differently than the way we do in the UK.
If either of you want to chat please feel free to PM me.
Hiya both,
Our eldest son did have a few admissions the first year or so but things do calm down after that.
We now have another little boy who is 7 weeks and also has MCADD.we never wanted Oliver to be an only child so it was a risk we were prepared to take! I cried so much when we got the results,I had convinced myself he hadn't got it.I'm just up feeding at the moment =o)
It is very scary and always will be,but they are worth every bit of worry.It does get me down at times as I feel its not fair and I see all my friends having babies without a care.
I think its made even harder as its so rare and I don't really have anyone to talk to.
We are in the uk in the midlands.How about you guys?
Hope you and your families are all well...
Xx
Our eldest son did have a few admissions the first year or so but things do calm down after that.
We now have another little boy who is 7 weeks and also has MCADD.we never wanted Oliver to be an only child so it was a risk we were prepared to take! I cried so much when we got the results,I had convinced myself he hadn't got it.I'm just up feeding at the moment =o)
It is very scary and always will be,but they are worth every bit of worry.It does get me down at times as I feel its not fair and I see all my friends having babies without a care.
I think its made even harder as its so rare and I don't really have anyone to talk to.
We are in the uk in the midlands.How about you guys?
Hope you and your families are all well...
Xx
stargazer01
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DaisyMai, I'm so sorry both of your children have Mcadd. It really wouldn't stop me from having another either, you always have a chance the new baby would not be affected. For a positive spin on it, your kids will have each other for support when they get older.
I am in the USA in Pennsylvania.
I really feel alone in this, I was so devastated when we found out. No one close to me understands. My family thinks she will grow out of it. They tell me not to worry as she looks healthy. When I try to explain it, they just don't get it. They keep asking if it is like diabetes. It is so frustrating!
I am in the USA in Pennsylvania.
I really feel alone in this, I was so devastated when we found out. No one close to me understands. My family thinks she will grow out of it. They tell me not to worry as she looks healthy. When I try to explain it, they just don't get it. They keep asking if it is like diabetes. It is so frustrating!
I totally understand.People just haven't got a clue.
I too think its harder for us mums as we are generally the ones looking after them majority of the time.
When my eldest was born I found it really hard to let go,I didn't even want anyone else holding him! Once he got to a year I knew I had to start leaving him with other people as I can't bubble wrap him and make him feel different.
I started leaving him in creche while I was upstairs in the gym.He took a while to settle but he loves it.Then in september he started pre school 3 hrs a morning.He also loves it and always talks about school and I feel happy leaving him there.
I do dread him starting school though as its a long day.
It does get easier in a way once they get to one.They can go longer between feeds and you can give them snacks to munch on.
I always say I wish they could have a little gauge on them so everyone could clearly see when leave are low on food.
How are you guys getting on?
X
I too think its harder for us mums as we are generally the ones looking after them majority of the time.
When my eldest was born I found it really hard to let go,I didn't even want anyone else holding him! Once he got to a year I knew I had to start leaving him with other people as I can't bubble wrap him and make him feel different.
I started leaving him in creche while I was upstairs in the gym.He took a while to settle but he loves it.Then in september he started pre school 3 hrs a morning.He also loves it and always talks about school and I feel happy leaving him there.
I do dread him starting school though as its a long day.
It does get easier in a way once they get to one.They can go longer between feeds and you can give them snacks to munch on.
I always say I wish they could have a little gauge on them so everyone could clearly see when leave are low on food.
How are you guys getting on?
X
Hi both,
Daisymae I am in Cheshire so not that far from you.
My LO is 14 months old and I still have days when I get so upset by it all, with a 1 in 10,000 chance why us ? But I think that's normal.
Then you have to look at the positives, our LOs can lead a totally normal life, it's only different when they get any illness or stop eating.
It is hard but I would not change my LO for anything
Daisymae-have you joined the MCADD uk Facebook page ? Also are you aware of the charity CLIMB worth googling them if not
Daisymae I am in Cheshire so not that far from you.
My LO is 14 months old and I still have days when I get so upset by it all, with a 1 in 10,000 chance why us ? But I think that's normal.
Then you have to look at the positives, our LOs can lead a totally normal life, it's only different when they get any illness or stop eating.
It is hard but I would not change my LO for anything
Daisymae-have you joined the MCADD uk Facebook page ? Also are you aware of the charity CLIMB worth googling them if not
stargazer01
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It is encouraging to hear that your little ones are doing so well. Do you tend to worry about the other children being sick at preschool? I agree that you need to make them feel normal and send them, but I know I will worry when the time comes.
I don't want to rush the baby stage, but nursing so often through the night is hard. I know she would sleep longer if I could let her.
I try to think of the positives too. There are worse things that our kids could have. But I do still think of the odds too 1 in 10,000. Why my baby?
that is wonderful, that you have a support group for the uk on facebook! I find it is so helpful to be in contact with others who understand the struggles that we are going through.
I don't want to rush the baby stage, but nursing so often through the night is hard. I know she would sleep longer if I could let her.
I try to think of the positives too. There are worse things that our kids could have. But I do still think of the odds too 1 in 10,000. Why my baby?
that is wonderful, that you have a support group for the uk on facebook! I find it is so helpful to be in contact with others who understand the struggles that we are going through.
Stargazer, there is also one in the US it's not MCADD specific but covers all FODs.
My LO does not go to preschool or anything like that. I do take him to baby and toddler groups and do get concerned when children have a runny nose or cough, but it's so important to let them live a full life x.
My LO does not go to preschool or anything like that. I do take him to baby and toddler groups and do get concerned when children have a runny nose or cough, but it's so important to let them live a full life x.
stargazer01
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Thank you pennyb! I need to look that group up!
Hiya both!
To be honest I don't worry about germs in general,just the sick bugs.Oliver had diarohea a few months back,he wasn't unwell with it and we managed it at home so that was good.
I'm fairly relaxed about germs at the moment,if any of my friends little ones have sick bugs they will tell me so we don't visit.
I just figure that you can't stop kids getting sick and it will help build their immune system anyway.
Stargazer~ the nights are tiring aren't they and disheartening when you have to wake them to feed! Poor things.
When Oliver was a baby I was wishing the first year away but this time I'm enjoying it as you can't get that cute baby phase back!
Penny~i do know about climb thankyou,infact I make sure I get my xmas cards from them each year =o) I would also love to run the london marathon one year to raise money for them.Something to aim for! =o)
Do you guys live near to the hospital where your LO s have open access? When Oliver was born we lived about 45 mins away which was a stress when we had to rush over there.We moved closer not long after.we moved back to where I grew up so its nice anyway and I'm in the next village from my family.
Nice to chat to you both... X
To be honest I don't worry about germs in general,just the sick bugs.Oliver had diarohea a few months back,he wasn't unwell with it and we managed it at home so that was good.
I'm fairly relaxed about germs at the moment,if any of my friends little ones have sick bugs they will tell me so we don't visit.
I just figure that you can't stop kids getting sick and it will help build their immune system anyway.
Stargazer~ the nights are tiring aren't they and disheartening when you have to wake them to feed! Poor things.
When Oliver was a baby I was wishing the first year away but this time I'm enjoying it as you can't get that cute baby phase back!
Penny~i do know about climb thankyou,infact I make sure I get my xmas cards from them each year =o) I would also love to run the london marathon one year to raise money for them.Something to aim for! =o)
Do you guys live near to the hospital where your LO s have open access? When Oliver was born we lived about 45 mins away which was a stress when we had to rush over there.We moved closer not long after.we moved back to where I grew up so its nice anyway and I'm in the next village from my family.
Nice to chat to you both... X
stargazer01
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It is good to hear that you have gotten through some illnesses at home. I really hope to be able to do the same.
I am also about 20 minutes away from hospital, and 40 minutes away from the specialist.
Have you either of you been advised to watch fat intake? Our specialist has not but I see so many differences on the facebook page on how others are told to treat mcadd. Also, is carnitine prescribed in the uk? I'm very curious to hear about the differences in treatment. Emma is taking 2 ml carnitine twice daily.
I am also about 20 minutes away from hospital, and 40 minutes away from the specialist.
Have you either of you been advised to watch fat intake? Our specialist has not but I see so many differences on the facebook page on how others are told to treat mcadd. Also, is carnitine prescribed in the uk? I'm very curious to hear about the differences in treatment. Emma is taking 2 ml carnitine twice daily.
Hiya,
I don't know if varies across the uk but we haven't been advised to the boys carnitine.
Funny you should say about fat intake,my partner has asked the question about how someone with mcadd would go about losing weight.We have never really had an answer....
Oliver is quite tiny so I'm hoping this will follow through into adult hood =o)
He has only really just started to enjoy his food,never really been. `foodie`.He is such a busy little boy that he would just rather be playing.Has been quite stressful at times when he just didn't want to eat.He still isn't mad on breakfast so I end up feeding him some of it but luckily he now enjoys his lunch and tea.He really tucked in at teatime lastnight!
I don't know if varies across the uk but we haven't been advised to the boys carnitine.
Funny you should say about fat intake,my partner has asked the question about how someone with mcadd would go about losing weight.We have never really had an answer....
Oliver is quite tiny so I'm hoping this will follow through into adult hood =o)
He has only really just started to enjoy his food,never really been. `foodie`.He is such a busy little boy that he would just rather be playing.Has been quite stressful at times when he just didn't want to eat.He still isn't mad on breakfast so I end up feeding him some of it but luckily he now enjoys his lunch and tea.He really tucked in at teatime lastnight!
stargazer01
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I hope my lo stays on the smaller side too, so she won't have to even worry about weight loss! Sounds like it would be tricky for them to attempt. Good for Oliver, enjoying food! 
sorry I've not responded sooner! I have been painting the girls room, and finally getting the crib set up. I should have had this finished by now, as Emma is almost 6 months old! I have 2 older children and my boy had to switch rooms with my dd. He had the bigger room, but now the girls will be sharing.
I need to get the older 2 tested for mcadd, I am hopeful they either don't have it at all or just carriers. Do you think symptoms would have shown if they were positive?
sorry I've not responded sooner! I have been painting the girls room, and finally getting the crib set up. I should have had this finished by now, as Emma is almost 6 months old! I have 2 older children and my boy had to switch rooms with my dd. He had the bigger room, but now the girls will be sharing.
I need to get the older 2 tested for mcadd, I am hopeful they either don't have it at all or just carriers. Do you think symptoms would have shown if they were positive?
I hope my lo stays on the smaller side too, so she won't have to even worry about weight loss! Sounds like it would be tricky for them to attempt. Good for Oliver, enjoying food!
sorry I've not responded sooner! I have been painting the girls room, and finally getting the crib set up. I should have had this finished by now, as Emma is almost 6 months old! I have 2 older children and my boy had to switch rooms with my dd. He had the bigger room, but now the girls will be sharing.
I need to get the older 2 tested for mcadd, I am hopeful they either don't have it at all or just carriers. Do you think symptoms would have shown if they were positive?
Just a quick reply sorry as lots going in. But there has been people who have been found to have MCADD when they are older that had never shown any symptoms until they went into crisis, due to bad illness etc..I would get your girls done ASAP just in case. MCADD is manageable once diagnosed but dangerous when undiagnosed. X
stargazer01
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That is scary! I will be taking them along to the geneticist for Emma's next appointment. Hoping so much that they are not affected!
Hiya both!
Sounds like you've been busy stargazer! We too are in the process of decorating but something always comes up and it never gets done =o)
Have you managed to find a theme for the room to suit both girls?
It is scary to think your older kids may also have mcadd,but if they have then just look at how well they have done with it!
I've been feeling a bit low lately about two boys both with mcadd,feel life isn't fair.Its also hard as I see all my friends around me popping babies out without a care in the world.
I think if they never had to go to school or be away from me for any length of time I'd be okay,its trusting others to care for them.
Oliver will be 3 this year and will start school the following year,I'm petrified already =o(
Sounds like you've been busy stargazer! We too are in the process of decorating but something always comes up and it never gets done =o)
Have you managed to find a theme for the room to suit both girls?
It is scary to think your older kids may also have mcadd,but if they have then just look at how well they have done with it!
I've been feeling a bit low lately about two boys both with mcadd,feel life isn't fair.Its also hard as I see all my friends around me popping babies out without a care in the world.
I think if they never had to go to school or be away from me for any length of time I'd be okay,its trusting others to care for them.
Oliver will be 3 this year and will start school the following year,I'm petrified already =o(
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