Hello, my son was diagnosed with Polysplenia Syndrome when he was a few weeks old. One of the results of Polysplenia is malrotation of the bowel. He had corrective surgery when he was 3 months old to deal witht he malrotation. Since then, he has had issues with the following items 1. Intermittent abdorminal pains 2. Constipation (not related to the abdorminal pains) 3. Fine motor skills are not as developed as they should be for his age group 4. Complains pertaining to his eyes hurting periodically. Recently diagnosed with White Matter disease 5. Short for his age 6. Acts up in school at times 7. Behind in his speech
He is now 3 1/2. I wanted to know if anyone out there has a child or know of someone with a child that had Polysplenia Syndrome. Are the above related to Polysplenia or are they isolated items? Are there any good sources (web sites, etc..) on Polysplenia Syndrome and White Matter Disease?
My son was born with a very rare disease that is hard to find any support or information on also. We lost him at age 4 this past March after all of his struggles. I got so lucky in finding a support group online that is for children with all kinds of disabilities and I even found one who had been through Menkes syndrome like my son. So you may try posting a message at www.our-kids.org and see if anyone can point you in the right direction there. There are so many yahoo groups on rare disease that David Hughes started that he may have started one there too. Good luck.
Dani
"KJMAN" <[email hidden]> wrote in message "]news:[email hidden]...
Quoted message said:
Hello, my son was diagnosed with Polysplenia Syndrome when he was a few weeks old. One of the results of Polysplenia is malrotation of the bowel. He had corrective surgery when he was 3 months old to deal witht he malrotation. Since then, he has had issues with the following items 1. Intermittent abdorminal pains 2. Constipation (not related to the abdorminal pains) 3. Fine motor skills are not as developed as they should be for his age group 4. Complains pertaining to his eyes hurting periodically. Recently diagnosed with White Matter disease 5. Short for his age 6. Acts up in school at times 7. Behind in his speech
He is now 3 1/2. I wanted to know if anyone out there has a child or know of someone with a child that had Polysplenia Syndrome. Are the above related to Polysplenia or are they isolated items? Are there any good sources (web sites, etc..) on Polysplenia Syndrome and White Matter
"djgordon" <[email hidden]> wrote in message news:1Dwvc.10116$sI.9594@attbi_s52...
Quoted message said:
Hello,
My son was born with a very rare disease that is hard to find any support
or
Quoted message said:
information on also. We lost him at age 4 this past March after all of his struggles. I got so lucky in finding a support group online that is for children with all kinds of disabilities and I even found one who had been through Menkes syndrome like my son. So you may try posting a message at www.our-kids.org and see if anyone can point you in the right direction there. There are so many yahoo groups on rare disease that David Hughes started that he may have started one there too. Good luck.
Dani
"KJMAN" <[email hidden]> wrote in message "]news:[email hidden]...
Quoted message said:
Hello, my son was diagnosed with Polysplenia Syndrome when he was a few weeks old. One of the results of Polysplenia is malrotation of the
bowel.
Quoted message said:
Quoted message said:
He had corrective surgery when he was 3 months old to deal witht he malrotation. Since then, he has had issues with the following items 1. Intermittent abdorminal pains 2. Constipation (not related to the abdorminal pains) 3. Fine motor skills are not as developed as they should be for his age group 4. Complains pertaining to his eyes hurting periodically. Recently diagnosed with White Matter disease 5. Short for his age 6. Acts up in school at times 7. Behind in his speech
He is now 3 1/2. I wanted to know if anyone out there has a child or
know
Quoted message said:
Quoted message said:
of someone with a child that had Polysplenia Syndrome. Are the above related to Polysplenia or are they isolated items? Are there any good sources (web sites, etc..) on Polysplenia Syndrome and White Matter
