"Davey takes 0.1mg/ml. The doctor wanted to start him out really low. At first it was 0.1ml---it was so small it was hard to squeeze it out of the syringe since the tip took up most of the dose. It was doubled weekly till he is now on 1ml.
So…"
Lesch-Nyhan Disease support group
The network for people living with the Lesch-Nyhan Disease, their parents, teachers and anyone interested in learning more about LND.
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Wicklund replied to Peter Subert's discussion Dentist in the W.D.C. metro area?"Wow. I have read a few articles by Dr. Jinnah! I thought he was at John Hopkins? I was hoping to get in touch with him to ask about something in his article."
Wicklund replied to Wicklund's discussion Wheelchair seating"So grateful to hear your experiences with wheelchairs. The rep that adjusts/fixes our wheelchair doesn't seem to get what a LND child can do to a chair. They are so surprised he could break it. Now I can safety tell her that this is more the…"
Kenny Ooi replied to Ruch's discussion scoliosis and back braces"I did not personally have scoliosis but I did have my fair share of lower back pain as a result of a herniated disc in my lumbar region. My doctors prescribed me physiotherapy sessions and a corset-like back brace. On the road to recovery, I learned…"
Dexter replied to Wicklund's discussion Wheelchair seating"This is a issue that has caused Amyas to break his wheelchair on five occasions. I think we have replaced the footplates about three times, the back rest has broken once and now the foot rests have given way again.
That said, we find it is…"
Dexter replied to Wicklund's discussion Clonezapam dosage?"Amyas used to take 2mg three times a day (6mg in all) which is a very high dose. We tried to wean him off it with disastrous consequences. He is now back on it but on a much lower dos of 1mg twice a day.
We also gave him Gabapenten…"
Ruch replied to Wicklund's discussion Wheelchair seating"You can go to our page and look at the pictures of Ruch and how she sits in her wheelchair. If you would like something specific let me know and I can take a picture of her sitting and post it for you. We have always had trouble with seating her in…"
Ruch replied to Wicklund's discussion Clonezapam dosage?"Our daughter Ruch takes both Gabapentin and Clonezapam. We can only get Clonezapam in pills here. You did not say how many mgs are in 1ml of medication. Ruch takes 1.5 mg in the morning ( 3 pills of 0.5mg)and 1.25 mg in the evening(2 and a half…"
Peter Subert replied to Peter Subert's discussion Dentist in the W.D.C. metro area?"Hi,
Thank you so much for sharing your experience. Wish we could be closer to Seattle (actually, my job is in Portland, OR and I spend 80% of my time here). We know Dr. Jinnah from Atlanta, so perhaps we can get a name from him as well."
Wicklund replied to Peter Subert's discussion Dentist in the W.D.C. metro area?"Yes, it is rare to find a dentist that has knowledge of LND. Our son's dentist at Seattle Children's Hospital has only two in all his career, but he is extremely proactive and willing to work on anything to help with my son's LND…"
Wicklund replied to Wicklund's discussion Wheelchair seating"Here is a pic of his wheelchair and how he sits with his legs sorta corralled so as not to kick the bus driver. His feet are not in the footstraps."
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Clonezapam dosage? 3 Replies
If Clonezapam works for your son, at what dose is he taking? We just started in March and do not see much happening. It is now at 1ml two times a day. We were hoping it would help, coupled with…Continue
Started by Wicklund in Caregiver Exchange. Last reply by Wicklund 15 hours ago.
Dentist in the W.D.C. metro area? 3 Replies
Dear Community Parents, We have recently transferred to the U.S. from Hungary and we have a 21-year old son, Daniel. His LND status is one of the most severe ones. He has the typical teeth problems…Continue
Tags: Dentist
Started by Peter Subert in Caregiver Exchange. Last reply by Wicklund 15 hours ago.
Wheelchair seating 4 Replies
I am having a lot of trouble keeping Davey sitting upright in his seat without sliding down. The medical rep who supplied the chair said he will not sit properly unless his feet are strapped…Continue
Started by Wicklund in Caregiver Exchange. Last reply by Wicklund 15 hours ago.
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