tag:blogger.com,1999:blog-2988713714821827402.post3668801919369297856..comments2023-05-19T12:01:43.193-04:00Comments on 'Cause Caden Can...: LITTLE BOY WONDERAnonymoushttp://www.blogger.com/profile/14620897993853643324noreply@blogger.comBlogger32125tag:blogger.com,1999:blog-2988713714821827402.post-70193803116098861332015-05-12T03:24:08.509-04:002015-05-12T03:24:08.509-04:00Maybe he does not have cp. This article might help...Maybe he does not have cp. This article might help.<br /><br />https://www.yahoo.com/health/this-woman-spent-decades-unable-to-control-her-116948505828.htmlPractical Parsimonyhttp://www.practical-parsimony.blogspot.comnoreply@blogger.comtag:blogger.com,1999:blog-2988713714821827402.post-21581282787844546492014-05-30T21:07:17.275-04:002014-05-30T21:07:17.275-04:00The laughing and crying episodes reminded me of an...The laughing and crying episodes reminded me of an article I readhttp://en.m.wikipedia.org/wiki/Pseudobulbar_affectAnonymoushttps://www.blogger.com/profile/08532761988268198703noreply@blogger.comtag:blogger.com,1999:blog-2988713714821827402.post-52253542398560792692014-05-30T21:06:08.745-04:002014-05-30T21:06:08.745-04:00The laughing and crying episodes reminded me of an...The laughing and crying episodes reminded me of an article I read,http://en.m.wikipedia.org/wiki/Pseudobulbar_affectAnonymoushttps://www.blogger.com/profile/08532761988268198703noreply@blogger.comtag:blogger.com,1999:blog-2988713714821827402.post-31622389180473694452014-05-30T08:16:31.028-04:002014-05-30T08:16:31.028-04:00Has anyone ruled out Batten's?Has anyone ruled out Batten's? Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2988713714821827402.post-6698618801266138852014-04-23T12:25:38.398-04:002014-04-23T12:25:38.398-04:00Yes. When Caden was in Cincinnati last year for a ...Yes. When Caden was in Cincinnati last year for a month they tested both the thyroid and pituitary gland and like every other test Caden has had done, they came back "normal". Thanks for the ideas.Anonymoushttps://www.blogger.com/profile/14620897993853643324noreply@blogger.comtag:blogger.com,1999:blog-2988713714821827402.post-73352368466011639312014-04-23T12:23:48.932-04:002014-04-23T12:23:48.932-04:00I love your blog. You and your little ones are suc...I love your blog. You and your little ones are such inspirations to me. Thanks for sharing your story.Anonymoushttps://www.blogger.com/profile/14620897993853643324noreply@blogger.comtag:blogger.com,1999:blog-2988713714821827402.post-64167609012248978732014-04-23T12:22:52.085-04:002014-04-23T12:22:52.085-04:00I read about mitochondrial disease constantly. Som...I read about mitochondrial disease constantly. Somehow no matter what I look up it always seems to go back to mito. The mito doctor at CHOP doesn't seem to think so but we will wait and see what the gene study shows. Thank you.Anonymoushttps://www.blogger.com/profile/14620897993853643324noreply@blogger.comtag:blogger.com,1999:blog-2988713714821827402.post-77202370925097153222014-04-23T12:20:48.715-04:002014-04-23T12:20:48.715-04:00Thank you and many of the suggestions are one'...Thank you and many of the suggestions are one's I have looked into. The Rett syndrome one is interesting because someone mentioned FoxG1 which currently falls under Rett syndrome but affects boys as much as girls. I agree that he does not have the hand motions but according to the FoxG1 website he has every other symptom. I am hoping the exome study shows us something so we can have a better understanding as to what is going on. Thanks again for the information. I am writing everything down and looking into everything.Anonymoushttps://www.blogger.com/profile/14620897993853643324noreply@blogger.comtag:blogger.com,1999:blog-2988713714821827402.post-90127318078350897972014-04-23T12:17:29.461-04:002014-04-23T12:17:29.461-04:00Interesting theory and you are the first to mentio...Interesting theory and you are the first to mention this but nothing around him contains led so it would almost seem impossible. Definitely worth looking into however. Thank you.Anonymoushttps://www.blogger.com/profile/14620897993853643324noreply@blogger.comtag:blogger.com,1999:blog-2988713714821827402.post-62135499795476927892014-04-23T12:16:36.406-04:002014-04-23T12:16:36.406-04:00Thank you. John's Hopkins is on our list of po...Thank you. John's Hopkins is on our list of possible go to places. It may be the next hospital we go to when Caden needs to be admitted as we seem to have exhausted all options at CHOP. A fresh set of eyes may be what my son needs.Anonymoushttps://www.blogger.com/profile/14620897993853643324noreply@blogger.comtag:blogger.com,1999:blog-2988713714821827402.post-80454194551257581802014-04-23T12:15:22.502-04:002014-04-23T12:15:22.502-04:00Thank you. 23 weeks....wow...God bless you!Thank you. 23 weeks....wow...God bless you!Anonymoushttps://www.blogger.com/profile/14620897993853643324noreply@blogger.comtag:blogger.com,1999:blog-2988713714821827402.post-61106471696050270252014-04-23T12:14:52.928-04:002014-04-23T12:14:52.928-04:00I believe Caden saw her last year when he was admi...I believe Caden saw her last year when he was admitted and she did an assessment and based on that didn't feel he had a mito disease. There was no formal testing done however.Anonymoushttps://www.blogger.com/profile/14620897993853643324noreply@blogger.comtag:blogger.com,1999:blog-2988713714821827402.post-20577358272987707382014-04-23T12:13:40.300-04:002014-04-23T12:13:40.300-04:00Thank you. Caden has a very good geneticist out of...Thank you. Caden has a very good geneticist out of Cincinnati Children's Hospital but we may end up going to see the best Ehlers-Danlos geneticist in the world. He's out of Chicago. I agree, a geneticist may be the best person to help us find answers.Anonymoushttps://www.blogger.com/profile/14620897993853643324noreply@blogger.comtag:blogger.com,1999:blog-2988713714821827402.post-9286071705072333472014-04-23T12:11:12.598-04:002014-04-23T12:11:12.598-04:00CHOP did an exome study and rules out any type of ...CHOP did an exome study and rules out any type of muscular disorder. I looked into the others you have mentioned and some are possibilities. Caden's geneticist is out of Cincinnati Children's (we did not like the one's at CHOP). I think we may need to take another trip out there if we don't get any results from the exome study. Thanks for the ideas.Anonymoushttps://www.blogger.com/profile/14620897993853643324noreply@blogger.comtag:blogger.com,1999:blog-2988713714821827402.post-58466465516572990972014-04-23T12:08:51.143-04:002014-04-23T12:08:51.143-04:00Sorry for the very delayed response. I have to get...Sorry for the very delayed response. I have to get better at that part of blogging. I appreciate your input and help and would appreciate any information you could give me. We are really looking for pediatric doctors who are familiar with Ehlers-Danlos, the connective tissue disorder Caden has. It seems there aren't too many pediatric doctors familiar with the syndrome because most symptoms don't present themselves until much later in life. Apparently Caden is the exception. Anonymoushttps://www.blogger.com/profile/14620897993853643324noreply@blogger.comtag:blogger.com,1999:blog-2988713714821827402.post-52722501949501721112014-03-20T17:39:33.884-04:002014-03-20T17:39:33.884-04:00Have they checked his thyroid and pituitary glands...Have they checked his thyroid and pituitary glands? If they were both off they could cause and intensify a good portion of these symptoms. They also have a lot of influence on his sympathetic nervous system which would explain the blood pressure, hiccups, and stomach problems because they are all muscles we cannot actively control ourselves. I hope this helps.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2988713714821827402.post-11714058955254271922014-03-15T01:46:51.318-04:002014-03-15T01:46:51.318-04:00Although Caden seems to be more medically involved...Although Caden seems to be more medically involved than my little ones, he sure reminds me a lot of my little mystery boy. I have 2 children that have been diagnosed with unspecified Leukodystrophy, but even after entire genome sequencing, the doctors do not know why they have the symptoms that they do. Feel free to read their story here: http://bryceannalisesjourney.blogspot.com/2013/11/crashing-system.html Caden's symptoms also remind me a lot of my friend's son who had Alpers, which is a mitochondrial disease. I hope and pray that you will find answers for your little boy. The unknown is just so hard to deal with. <br /> Tammyhttps://www.blogger.com/profile/16132422392222511875noreply@blogger.comtag:blogger.com,1999:blog-2988713714821827402.post-37835700555864610802014-03-11T18:28:49.524-04:002014-03-11T18:28:49.524-04:00Mitochondrial disease, worth reading aboutMitochondrial disease, worth reading aboutAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2988713714821827402.post-25007376360273726452014-03-11T15:31:07.532-04:002014-03-11T15:31:07.532-04:00I pray that God is with Caden and will help you an...I pray that God is with Caden and will help you and your family with this struggle.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2988713714821827402.post-66867688538896902092014-03-11T08:43:03.381-04:002014-03-11T08:43:03.381-04:00Hi Jill, We all just read your blog this morning....Hi Jill, We all just read your blog this morning. His school family loves and misses him. May God keep you all in the palm of His hand. xoxoJanice Peasenoreply@blogger.comtag:blogger.com,1999:blog-2988713714821827402.post-33344974096424501342014-03-10T23:52:31.976-04:002014-03-10T23:52:31.976-04:00Hi Jill , its Alison from Smarty Pants, just want...Hi Jill , its Alison from Smarty Pants, just want to tell you that we are all praying for answers and strength for you and your family. Anything you need please ask. Love to Caden and you from all of us<br />Anonymoushttps://www.blogger.com/profile/15411343254023006052noreply@blogger.comtag:blogger.com,1999:blog-2988713714821827402.post-43791949330893202682014-03-10T23:43:51.156-04:002014-03-10T23:43:51.156-04:00One cannot say enough for the importance of family...One cannot say enough for the importance of family and support in Caden’s life and in yours. You are doing so much. I can only imagine what you are going through. I am a pediatrician and came across your blog. Your plea for information gave me pause. He has been seen by a number of specialists at a number of renowned children’s hospitals. The one thing that stands out to me from your description is the regression of milestones which I am sure has not been missed. This is a unique and ominous feature if it persists. The geneticist will hopefully have more to talk to you about this. Some syndromes with regression of milestones are Rett syndrome (although almost exclusively seen in girls, and with rhythmic hand motions that he does not have), childhood disintegrative disorder (very rare with unknown cause, thus more descriptive than helpful), range of liposomal storage disorders (typically with visual issues although I am sure that some do not), arginase deficiency (characterized by more increasing in spasticity than loss of muscle tone), and alexander’s disease (can have large forehead, white matter disorder should be notable on MRI). As you can see from my comments on these syndromes there are issues that don’t necessarily fit for Caden’s presentation, and there may not be a definitive answer. Caden is Caden. As you and Caden move forward together take time for yourself, one another, and those special moments that come now and then.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2988713714821827402.post-42243075702500011022014-03-10T22:00:25.669-04:002014-03-10T22:00:25.669-04:00Have they checked for lead poisoning? Many of the ...Have they checked for lead poisoning? Many of the symptoms are the same and its much more common that most of the other stuff I'm reading in the thread. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2988713714821827402.post-7598933599488641962014-03-10T21:54:03.892-04:002014-03-10T21:54:03.892-04:00Hi Jill, ...Hi Jill, The McKusick Institute of Genetic Medicine at Johns Hopkins in Maryland has a wonderful pediatric genetics unit. Maybe they can help get you some answers. Thoughts and prayers are with you and your entire family.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2988713714821827402.post-77425632768465612052014-03-10T21:19:57.436-04:002014-03-10T21:19:57.436-04:00I am a mother of a 23 week premie... Texas and Tam...I am a mother of a 23 week premie... Texas and Tampa Florida have great children's hospitals.... god bless you and your family on you medical journey ... Anonymousnoreply@blogger.com