AADC child- Aromatic L Amino Acid Decarboxylase Deficiency, Oculo gyric Crisis

[is3ven]

thanks for sharing and describing it so well. much appreciated and it sounds like you are doing a wonderful job with the girls! God bless!

[dslgunner1977]

My neice has this exact same condition. She is 14 now. My mother and father inlaw care for her when her mother is working. They play Disney movies for her, and certain parts of the movies will cause her to laugh histerically! -and if a scary part of the movie comes on, she will cry, so they have gotten quite familiar with which movies she likes, and which parts of the movies to skip.

I know it is a challenging illness to care for, you are in my prayers. May God bless you and her, both.

[727598070]

Hi,my daughter Sellina who is 2 who has aadc also ,we are in ny .can I ask you some question?my email is likaiqu021005@yahoo.com .

[suekosa]

Is this part of a metabolic disorder?

[ssurut]

@suekosa - Yes, this is a metabolic disorder due to an enzyme deficiency. The enzyme in decarboxylase which controls the l-amino acids. The L-amino acids control our body's metabolism. That is my very basic parental understanding of the process. Hope it helps :)

[suekosa]

@ssurut I have OTC deficiency, that stands OrnithineTransCarbamylase Deficiency

[HealthRanger7]

Neurological disorders are usually caused by the heavy metals mercury and aluminium that are contained in vaccinations....

Main stream medicine will ALWAYS deny this link!

If you would to improve the health of your child, please send me a PM.

[RFUCMSRanger]

@HealthRanger7 please provide evidence for this bold statement. Preferably, from a peer-reviewed article.

[xxxAlphaxxx5]

Can she see clearly when her eyes go cross?

[illroperson]

I saw another kind of OGC after antypsycotic drugs ,and both eyes were in sustained upward position ,in case of your girls movements are more caotic ,eyes make some kind of "dancing" and are dissociate.(likein my daugter case)Can I ask you if it is a main sign of AADC?

[ssurut]

@illroperson

Yes it is pretty common that OGCs happen with some medications. My girls had the OGCs without any meds. Yes, this is the main sign of AADC and ===and some of the other neurotransmitter disorders.

[illroperson]

Thank you for answering me ,now I have to look for a neuro neurotrasmiter disorder specialist .Have you ever checked oxygen saturation before "seizures"  triggering oculogyric crisis?My daughter SO2 drop to 70% before spasms and OC..

[illroperson]

Thank you for sharing this video,my daughter has the same kind of crisis every afternoon,now I don't feel so alone.

How much last your girls spells ,and if they happen everyday?

[ssurut]

@illroperson My girls have them every 3-5 days, but they last for upto 8 hours. Some days they are shorter, but then they happen more frequently. They tend to happen in the afternoon, when they are tired. The spells have all the same triggers as seizures, but they are not seizures according to testing. I know from the other parents that the spells can vary in frequency & length. My girls are on the severe end of the spectrum.

[ssurut]

Kaoruneko16- Good question? My girls are almost 7, they just had another eye exam. The last exam, they were slightly farsighted. This past exam Sydney was farsighted in one eye & near in the other. Go figure. Laini's vision got slightly better.

It is worthwhile to note that they are both stronger, more aware and their visual field is better than it was 1 year ago. Also they are more alert and track better too. All of this with no med changes.

[ssurut]

Kbrowningful- I'm glad you find this valuable. It is one of my goals to inform the medical community & parents. Please feel free to ask any other questions.. Sorry it took me so long to respond.

[ssurut]

I assume they see what we see when we cross our eyes. At times, they can pull their eyes straight & focus for a moment & bam back to being crossed again. My girls are not verbal, but I know of another child who is who said their eyes hurt after a long episode

[kaoruneko16]

Will that damage her eyes?

[kbrowningful]

Thanks for posting that!! As a medical student you tube actually is very valuable and this is not a common thing to get to see in clinic, so I appreciate your willingness to post!!!

[Borat2borat]

Wow.. can she see when her eyes do that?