LAL Solace Patient Community

LAL Deficiency (Lysosomal Acid Lipase Disease) & Wolman Disease patient support

Ayesha mohammadi's Comments

At 10:51am on February 26, 2018, Ayesha mohammadi said…: Hi my little one is diagnosed with LALD at 2 months when she had distended tummy and fever the blood work indicated problem and they found that it’s rare genetic condition Lald, she is getting kanuma once a week since she was 3 months now she is 10 months old. Her body is too frail legs have no energy yet. if any one have experienced any thing similar can give us suggestion is highly appreaciated thanks

At 4:11am on February 27, 2018, Vee Jay said…: Hello Ayesha

My son was diagnosed at 3 months old he was so small, frail, distended stomach and looked like a premature 3week baby. But now is a healthy toddler. With the enzyme they become stronger. Just be patient and maybe get physio or OT help at hospital. My son was unable to sit up as he spent 6 months in hospital lying flat during recovery... so the OT provided supportive chair and eventually he sat on his own. Still his leggs and arm are very slim and his stomach stands out. The main thing is that our child is with us and maybe will not be exactly like other bormal healthy children. Please wait and see the more weekly infusions how your child will blossom. Xxx

At 9:38pm on February 27, 2018, Ayesha mohammadi said…: Hi Vee Jay, Thanks for sharing your story

At 12:05pm on October 13, 2018, James Pollard said…: Good Day,

How is everything with you, I picked interest on you after going through your short profile and deemed it necessary to write you immediately. I have something very vital to disclose to you, but I found it difficult to express myself here, since it's a public site.Could you please get back to me on ( mrjamespollard@yahoo.com ) for the full details.
Have a nice day
Thanks God bless.

At 5:42pm on October 13, 2018, Vee Jay said…: Hello Ayesha

so sorry for late response. I must have missed the email notification.

from my experience i have found my son to have a low immune system, which means he picks up colds, flu, viruses, infections eyc easily. Also he has a central line which is accessed weekly so can possibly catch infection through that. If temperature is below 38 then we tend to treat at home with regular paracetomol. If higher than 38 then we take him to hospital for the doctors to decide. And most of the time we get admitted snd have a course of antibiotics, bloods taken and if results better we get discharged.

At 2:34pm on September 25, 2019, Marie J said…: Hi Ayesha,

My baby girl has LAL-D too. I’d like to connect with you to share/learn from one another.