Well I can honestly say im feel like im lost I cant seem to find answers anywhere. Logan has been sick for about the 6 mths in and out of hospital about 20 times, fits, infections... it's and endless list. Oh Logan will be 3 in March.
We got the confirmation of the weavers syndrome and have been recommended to get comparative geonomic hybridisation, Dr Weaver has recommended that this be done to see if there is anything else going on and Logan does not suffer from bone maturation, which they thought he did at first. In the last 6 months he has chaned completly. He is just over 4ft now and everytime he gets ill it seems to cause a growth spurt, its now about 2cm per mth. His hands and feet have widened so much that I have to get shoes made for hime. The only thing not growing is his genitals, which are very small in comparison to the rest of his body. He has fine fuzzy hair all over his body and has skin tags growing almost daily. His 2front top teeth have completley worn away and his back ones are doing the same. The rest of his teeth are almost fang like and the dentist has no idea why this is happening as he has no decay in his mouth
at all, he is aslo still has the drooling problem. His forehead seems to be coming more protruded and his hair line is receeding. We still have the problems with the nails they are so soft that when he had an autistic meltdown the other day he pulled one of. We are going through far more agression and behavioural problems but im not sure if they are down to the Autism. He also seems to have buckled or bow legs.
We see a peadeatrician for the autism but the only person we see for the weavers is our genetisist, who is not to familiar with all that can go on. And as Logan has a number of issues our P is reluctant to treat him incase it interferes with anything else. He is not aware of anyone else in Scotland having it, thats why we contacted Dr Weaver. Does any of this sound familiar im at a loss here. Id be greatful for any advice.
Thanks
Jacquie
--- On Thu, 9/18/08, April Hooper <ahooburg79@...> wrote:
From: April Hooper <ahooburg79@...> Subject: Re: [WSSA] Hi all, a few questions, sorry! To: WSSA@yahoogroups.com Date: Thursday, September 18, 2008, 6:47 PM
Yes, my sons bone maturation is advanced by 3 to 3 and a half years. His teeth came in at normal time, a little late if anything, but he lost them very early. I think he was around four when he lost his first tooth. He has lost 9 teeth so far, four on top, four on bottom and one molar. His bottom ones in front have grown back, as well as the top two front, he is just now getting one of the others beside the front ones. Devons dentist thinks it is part of the advanced bone age, since teeth are a form of a bone.
Puberty...he started this last summer. I did now know, until swim therapy. He was having a hard time getting his wet shorts off after swimming. I was helping him get them off, I noticed a hair, and assumed it was wrapped around (my hair often gets every where...) down by his genitals, thinking it was mine, I pulled it and when I did he said "ouch!" I was shocked! After a closer look he has quite a few, only a few dark ones, but he has "peach fuzz" all over, under his arms, and on genitals. I took him in to see a endocrinologist, he said with the advanced bone age, he could see it happening. Usually it is considered early puberty when it happens before 9 years old. Devon goes into see him again in 6 months, at that time the doc wants to see what stage he is in, get an MRI and some blood work. He did not want to start hormone injections yet. He thinks this will help slow Devons growth (puberty).
Anyways this is my situation. Let me know if you have any other questions... I will try to answers them. Hope this helps!
April
--- On Thu, 9/18/08, jacq1976 <jacq1976@yahoo. com> wrote:
From: jacq1976 <jacq1976@yahoo. com> Subject: [WSSA] Hi all, a few questions, sorry! To: WSSA@yahoogroups. com Date: Thursday, September 18, 2008, 7:35 AM
Did all of your children have advanced bone maturation, exfoliating teeth and at what age if they have reached puberty, did they start at?
Im having a few issues with Logan at the moment his body is changing and I have discussed it with my genetisist, but there is so little information he really is unable to help. Logans hands and feet have widened an awful lot the last few months and he is also etting skin tas all over his body. His body is growning at a steady rate but genitals aren't. I spoke with Dr weaver the other day and he has asked for information on Loan to be sent from Scotland, which im in the process of doing, I just wondered if anyone had anything similar.
Did all of your children have advanced bone maturation, exfoliating teeth and at what age if they have reached puberty, did they start at? Im having a few...
Yes, my sons bone maturation is advanced by 3 to 3 and a half years. His teeth came in at normal time, a little late if anything, but he lost them very early....
Hi April  Well I can honestly say im feel like im lost I cant seem to find answers anywhere. Logan has been sick for about the 6 mths in and out of...
First off, I would like to commend you on all you have already accomplished. It is hard knowing if you are doing the right thing when no one else seams to have...
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