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Emily Stephens
vendredi 29 février 2008 16:14
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Today is Rare disease day, take a look at this link.
http://www.rarediseaseday.org
http://www.rarediseaseday.org
Hamida Rafiq
jeudi 21 février 2008 21:17
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hi 2 all refering to what kim was saying about the reflux and constipation adam is on ranidine and for the constipation he is on movicol pediatric plain it is mixed with cool boiled water can be taken orally or you can feed it through the pump we find the latter easier cynthia cant your doctor contact dr crow regarding the genetic test
Cynthia Pietrzykowski
jeudi 21 février 2008 04:50
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Sarah Rae is now 2 yrs old. She has followed the classic AGS simptoms since birth.Extreme irritability for her first 6 months or so. Her 1st MRI @ 9 months showed the demylination. She had her first seizure when she was 15 months old, at this time they did a CAT scann and the calcifications were found. AGS was suspected but her spinal fluid was normal. Jan.10 2007 she contracted Psyodmonas meningitis & Pnemonia.Ten days she was on life support and yet she survived. Again the DR.brought up AGS and at this point she sent Dr. Crowe Sarah's test results and he agreed that it was AGS. We finally made it home in March. In June she started with a disorder called Idiopathic thrombocytopenia. This is when the body attacks its own platlets in the blood. Sarah had very low platlet count she was hospitalised several times over the summer for internal bleeding and we were in constant fear that she might have a seizure and cause a hemerage. After consulting with Dr. James Buchanan tried a chemotherapy drug called Rotoxan in Oct.This worked and her platlets have been normal so we were able to do another MRI a few weeks ago. It showed more atrophy of her brain.The Dr.is certian that it is AGS but my husband and I want the genetic test done.Nolab in the USA can do this test and we can't figure out how to get her Blood to England. If any one can help us please contact me.
Sincerely,
Cynthia Pietrzykowski
Sincerely,
Cynthia Pietrzykowski
gabrielle bravo
mercredi 20 février 2008 23:30
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just to let everyone know as of monday my son cassius is starting a new treatment hyperbaric oxygen treatment. it has done miracles for a lot of kids around my area with brain damage. soo excited. if you wanna check what this is all about go to www.hopeformychild.com
ill try and keep everyone updated on cassius's progress!!!
ill try and keep everyone updated on cassius's progress!!!
Donna Miller
mercredi 20 février 2008 14:47
Some AGS kids cry a lot from reflux. Try giving him 10 cc. of an antacid (Maalox or Mylanta liquid). If his crying stops within 5 minutes, then he was having reflux. If it does not stop, then it was not reflux.
Constipation can also cause a lot of crying. Fleet makes something called Babylax, which is a liquid glycerin enema. If you induce a bowel movement with the baby lax, and he stops crying, then you know he was constipated. I have found that my sons need a BM induced at least once a day, or even twice a day, or they will cry.
If he has chronic constipation problems, then you can also give something in his food called Miralax. It causes the stool to be moist and soft. One warning--Miralax is very hard to regulate--just a little too much can cause diarrhea.
Try these things. I hope that they help.
Sincerely,
Donna Miller
Constipation can also cause a lot of crying. Fleet makes something called Babylax, which is a liquid glycerin enema. If you induce a bowel movement with the baby lax, and he stops crying, then you know he was constipated. I have found that my sons need a BM induced at least once a day, or even twice a day, or they will cry.
If he has chronic constipation problems, then you can also give something in his food called Miralax. It causes the stool to be moist and soft. One warning--Miralax is very hard to regulate--just a little too much can cause diarrhea.
Try these things. I hope that they help.
Sincerely,
Donna Miller
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