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• 3 year old RP, Ataxia, Hearing Loss, Speech problems
• Posted: 2008-04-10 15:04:10 By Kindy F
• Hi - we just found out our son (3.5 years old) has an extremely severe case of RP. He has had a form of ataxia (unknown) since he was 8 months old. He can walk with assistance, is very strong, but walks and balances like he is drunk. He has a hearing loss that comes and goes (some days good - some days bad - the same as his walking). He has some speech delay but he uses sign language with no problem. He is happy, loving, friendly, and has no diabetes or any other sickness. It is unclear what is really wrong with him overall. I'm looking for other parents with children who have similiar problems. Even though they said his ERG tests are totally flat - he appears to see lots of things both near and far. So we are basically confused and would like to talk to anyone else with kids who are in this position. Thank you. Kacey

• Re: 3 year old RP, Ataxia, Hearing Loss, Speech problems
• Posted: 2008-04-13 14:15:34 By Cynthia M
• Kindy,
  
  My name is Cynthia and I have 3 children who are affected with RP, 2 of whom also have hearing loss. I am also part of a wonderful online support group for parents of children with RP, started by another mother. We have many members who's children also have other conditions in addition to the RP. If you would like to join us,or if you would just like to talk with another parent feel free to email me at mamamomgrandma@yahoo.com.

• Re: 3 year old RP, Ataxia, Hearing Loss, Speech problems
• Posted: 2008-04-16 09:58:59 By tennessee t
• kindy, i am 44 was diagnosed 3 years ago with rp, although i was told there was no cure or treatment i kept searching any one anyway, well i have good news to anyone with rp. i found an accupunture clinic in greenville south carolina, made an appointment and went i stayed in a motel in walking distance from it for 5 days i went 3 times a day for treatments, when i first arrived they did an eye scan and eye test i was 20/200 in my worst eye, and 20/54 in my best eye, after 2 days of treatments they did another scan and eye test, i was 20/78 in my worst eye and 20/52 in my best, i noticed a difference in my vision in 2 days, this has been a miracle to me. i met a woman who has been blind for 20 years who was taking treatments to she is beginning to see things again. it is amazing. i believe the treatments will work better for those who seek treatment early. everyones success in the treatments will be different. it hasnt even been 2 weeks yet i am pleased with the results so far. i know that God is the main reason for this improvement, but he gives knowledge to doctors so they can help people like us. the phone number to the clinic is 864-232-7275. to me it wasnt going to hurt to try this accupunture treatment, i was going blind i am now thankful i found it. i hope this helps. tenni

• Re: Re: 3 year old RP, Ataxia, Hearing Loss, Speech problems
• Posted: 2008-04-17 15:11:19 By Marisa P
• tennessee,
  
  I don't want to discourage you, but many have used acupuncture with limited success. I say limited because the improvement is temporary and you have to continue to go through the sessions. Once you stop, your sight will be back to what it was.

• Re: Re: Re: 3 year old RP, Ataxia, Hearing Loss, Speech problems
• Posted: 2008-04-22 13:41:47 By tennessee t
• IM NOT REALLY GETTING MY HOPES UP AS FAR AS BELIEVING I WILL BE CURED BECAUSE IM AWARE THAT AT THE PRESENT TIME THERES NO CURE FOR RP, BUT THE TREATMENTS I RECEIVED HAS IMPROVED MY VISION SO FAR AND ANY LITTLE BIT THAT CAN BE DONE EVEN JUST IMPROVEMENT IS BETTER THAN NOTHING AT ALL. THE COST IS NOT REALLY AS MUCH AS SOME MAY THINK, AN EMERGENCY ROOM VISIT 1 TIME WOULD BE DOUBLED COMPARED TO THE COST OF ACUPUNCTURE DONE FOR 5 DAYS. JUST LIKE ANYTHING ELSE IT WILL HAVE TO BE KEPT UP. I PLAN ON RETURNING EVERY 6 MONTHS.