Hi all, My two kids have the same exact genetic mutations one from me and one from my husband. Our oldest, our daughter who is 4, does really well and has not had any hyper ammonia problems. I am praying that it stays that way. It appears that some people just never get hyper ammonia because their body compensates and finds a way to eliminate enough ammonia without it causing problems. My concern is that this imbalance can cause problems for other organs like the kidneys of the child isn't hydrated enough. My daughter loves to drink half apple/half water every day. I looked it up and the malic acid in apple juice seems to help neutralize ammonia. I don't know how much it helps but also good vitamins and clean diet, staying away from aspartame and MSG will also help.
My home that I was pregnant in was infested with mold and other problems. I thought it would be the cause but our geneticists are certain it is hereditary and not environmental. One thing for sure is that I'm staying away from moldy environments and vaccines. I am too afraid after the Anna Poling and other similar stories that these vaccines launch a metabolic unbalance. I'm not trying to advocate one way or another but just sharing my experience.
My son is 2 and is a champ. They both take arginine in apple sauce or yogurt with honey. Minerals help chelate or make more efficient the enzyme functions in the body and when they have a small amount of enzyme activity, you want to boost that. Also some people have recommended to me (again not advising anyone just sharing stories) to use a little bit of Magnesium Chloride to eliminate the ammonia from the blood before it gets too high.
I pray non stop for them because it is truly difficult to live with this. I am so lonely in this because none of my friends understand why I only will come over if they are perfectly healthy and if there are no sick kids around. Although we can't avoid illness I try to reduce it. We don't plan to have any more children after two miscarriages and two genetic disorder children.
I think the toxins from the air, food, water, medicines, and injections are starting to catch up to us and our children's generations are seeing the consequences.
My kids do enjoy almost anything but my son doesn't like red meats of any kind but will eat poultry in all forms. They love dairy and pastas.
Wow! I unloaded a lot here but I am so happy to be able to chat with you other moms going through this also.
Hi I don't know if any of you remember us but my daughter is Sanae. She was diagnosed with citrullinemia when she was 7 days old. My question to any family with a child that has her condition is have ... more
mom of Citrullinemia kids all4Yah,Mon Dec 13 3:51pm
Hi thanks for sharing ur experience, my son also has citrullinemia. I just have a question you mentioned that ur kids eat poultry- I was under the impression that this was one of the foods kids with... more
My daughter was diagnosed when she was 17 days old! My daughter to can eat some dairy and she loves chicken nuggets! For years my daughter didn't have a high ammonia then one day just a few weeks ago ... more
My kids have still been on maintenance of arginine. How is your daughter doing? I hope excellent! My daughter displays attributes of Aspergers now. Well, she always has really even though her ammonia ... more
hi i have a son with citrullinemia, myself my husband and my son have all had the dna testing which has confirmed myself and my husband are carriers of this illness. we are also going to have our... more
My daughter does have the disorder. She was 7 days old when she was diagnosed. The docs say they caught it in enough time to where it didn't do any neurological damage. Her's was found through PKU... more
thanks, my son is nearly 15 months but is still not working so im getting very concerned about his development. did ur daughter have any development delays? my sons ammonia was 671 wen diagnosed.... more
My daughter's ammonia levels were in the 400's when she was first diagnosed. Her doc feels she suffered no brain damage.Before I got the call from the pediatrician saying I had to bring her to CHB,... more