any babies or children with Mcadd?

[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.

 

[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.

 

[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

 

[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.

 

[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.

 

[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

 

[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.

 

[DanielleM]

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