# any babies or children with Mcadd?



## stargazer01

My baby girl was diagnosed with Mcadd on her newborn screening at the hospital. I would love to connect with others with this condition.


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## DaisyMai

Hi hun,

Our son who is 2 1\4 was born with MCADD.
I know how isolating it can be as its so rare,I would love to have a chat...
X


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## Pennyb

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 :(


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## stargazer01

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


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## Pennyb

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.


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## DaisyMai

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


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## stargazer01

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!


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## DaisyMai

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


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## Pennyb

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 :)


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## stargazer01

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.


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## Pennyb

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.


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## stargazer01

Thank you pennyb! I need to look that group up!


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## DaisyMai

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


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## Pennyb

We live about 20 minutes from the hospital we have open access to and about 35 minutes from the hospital we go to see the consultant so not bad at all...


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## stargazer01

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.


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## DaisyMai

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!


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## stargazer01

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! :D

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?


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## Pennyb

stargazer01 said:


> 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! :D
> 
> 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


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## stargazer01

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!


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## DaisyMai

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(


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## stargazer01

Things have definitely been busy! Hope you are both well and your children are avoiding illness.
I have not really chosen a theme yetk but my older girl loves princesses and horses. Not sure what to do yet!
I completely agree with you, life really is not fair, I am struggling too at the moment. I feel like I can't go anywhere without Emma, I don't feel right about it. I'm always worrying about her. And forget about overnights at the grandparents. Not that I would do that yet anyway. But I just don't see that happening. I also worry about her missing out on things and feeling left out. :(
Good luck to you when it is time for school! I hope all goes well.


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## stargazer01

Emma is now 7 months old, and doing well. We recently ventured out to a restaurant because it seemed empty at the time. But the waitress proceeded to touch Emma's face and hands. Why do people insist on doing this without asking the parents first? I washed every exposed area of Emma after with a baby wipe. I asked the waitress politely not to touch her because of a condition she has. What would either of you do in this situation? I hate seeming like a crazy obsessive mother, but I want to protect her from germs as much as possible.


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## Pennyb

It's very difficult as I think you have to find a balance. Once she goes to nursery, school etc...this will happen all the time.

Josh is now 16 months old very healthy, happy and active and it's a constant battle not to wrap him in cotton wool and rather let him lead a 'normal' life.

There is no right or wrong answer but sometimes we have to sit back, it's not easy though. I won't let Josh near anyone who is, sounds or looks ill though as it's too high a risk.

X


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## stargazer01

Thanks pennyb, I know I need to relax a bit, but it is hard! ;)
At the store one day, a man was coughing in the aisle we were in, and I turned around and went the other way. Emma was in her carseat, and I covered it up with a blanket, I am sure I looked crazy, but I didnt want her to catch anything. Hopefully I can learn to relax more soon. Going out, away from home is very stressful for me.


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## stargazer01

I recently had Emma at the genetist. I took along my ds and dd to have their blood drawn to check for MCADD. We got the results back and Josh my ds is not affected, he is normal. Sami my dd is a carrier. I am so relieved to finally have the results! Hope all is well for you both.


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## DanielleM

Hi, my 9 year old has mcadd, unfortunately the newborn screening wasn't available in the uk when Evan was born (he was actually part of the study to get mcadd screening for newborns) and we went through an episode of illness and as with healthy children I took him off his food and milk and gave him water for the sickness, he went really lethargic rushed him to a&e and luckily he was resuscitated. This was when the doctors started tests and concluded that he had mcadd. This episode happened when he was 16 months old and wasn't diagnosed until 19 months old. His last hospital admission was when he was 3 years old (touch wood). It does get easier as they get older as you can explain to them that they need to eat or drink polycal/lucozade or it could be fatal. Luckily Evan is not a sickly child. If any of you want any advice send me a pm x


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## stargazer01

Thank you DanielleM! It is so good to hear from others experiencing the same thing. So glad your little boy is ok. I havent heard of the polycol, I wonder if it is not available in the US. Sounds like something that I should have for illness.


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## DanielleM

Polycal is a carbohydrate drink to give the child if they are sick or unwell and won't tolerate food.


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