Zoe (niece) update and MJ P&PD for both...

[MommytoMJM]

Well, after such a great weekend it was back to the real world hard!

Got the news that they can no longer wait to do Zoe's transfusion, it will happen in utero at 6 am on Wednesday (tomorrow) She may require several transfusions before she is born, could still have major problmes and will probably be born prematurely so they can help her better I hope to be able to go up and meet her in November (she will probably be born in October)

MJ isn't doing so well on her new sleeping meds, it knocks her out fast, but she doesn't stay asleep so they are upping her dose (she has to stay asleep a certain number of hours to get her food compliment each night) The NP said it could take several more times of upping it to get it to the right dose, apparently a lot of autistic kids are resistant to these types of meds. We also are supposed to add melatonin to the mix, where I am going to find that without corn I don't know....sigh. They will be starting her on Trileptal for her seizures since that can be compounded without corn. Her MRI and EEG can't be done until Sept 30th (or later depending on the EEG dept, sigh) What a pain in the neck. Waiting is the worst part I think.

One thing I have noticed is that it is a lot easier to explain her behavior to others now. When I used to tell them she had Fetal Alcohol Syndrome (which she still does) they looked at me with a blank look, but "She has autism" seems to get through to more people....so I guess that is better.

Anyway, that is the update. Thanks for your prayers, thoughts and love!

 

[DisneyMom5]

Well, after such a great weekend it was back to the real world hard!

Got the news that they can no longer wait to do Zoe's transfusion, it will happen in utero at 6 am on Wednesday (tomorrow) She may require several transfusions before she is born, could still have major problmes and will probably be born prematurely so they can help her better I hope to be able to go up and meet her in November (she will probably be born in October)

MJ isn't doing so well on her new sleeping meds, it knocks her out fast, but she doesn't stay asleep so they are upping her dose (she has to stay asleep a certain number of hours to get her food compliment each night) The NP said it could take several more times of upping it to get it to the right dose, apparently a lot of autistic kids are resistant to these types of meds. We also are supposed to add melatonin to the mix, where I am going to find that without corn I don't know....sigh. They will be starting her on Trileptal for her seizures since that can be compounded without corn. Her MRI and EEG can't be done until Sept 30th (or later depending on the EEG dept, sigh) What a pain in the neck. Waiting is the worst part I think.

One thing I have noticed is that it is a lot easier to explain her behavior to others now. When I used to tell them she had Fetal Alcohol Syndrome (which she still does) they looked at me with a blank look, but "She has autism" seems to get through to more people....so I guess that is better.

Anyway, that is the update. Thanks for your prayers, thoughts and love!

Praying for Zoe (name means LIFE!)
Don't know if you have done Trileptal already, but my son was on it and I saw very little side effects (maybe sleepiness, but that would be good, right?)
Hope you get things figured out!
[side note, my son was on it due to a brain injury, he only had one seizure post trauma, and has been weaned off of it since. We are very thankful that there have been no more seizures. Hope you have good success with it!]

 

[SueM in MN]

Thanks for the update.