amo_mea_filiis. Posted November 29, 2012 Share Posted November 29, 2012 I called Massachusetts General Hospital Neuro dept yesterday and got Jeremy Schmahmann's secretary. Dr Schmahmann does not see pediatric patients but is interested in looking over ds's medical stuff! His colleague, Janet Sherman, the other main researcher, does see peds and is a neuropsychologist. Both Drs will review ds's file. I have no clue what this will give us. Even if ds could fall under this cerebellar cognitive affective syndrome theory, it'll mean next to nothing. I am so ready to get on with his files being reviewed but I'm just waiting. I requested 3 copies of his MRI CD and have to wait for them to come. Then one gets sent to the chiari institute and i wait again for their results, then everything gets sent to mass gen hospital. Even if he does have a chiari, that can't yet explain his behavioral problems, but it may fall under cerebellar damage that the neuros are researching. If insurance coverage is possible, i might see about Janet Sherman doing ds's neuropsych eval. She has an interest in cerebellar disorders and still researching this CCAS theory, so i think she's up for a challenge. My biggest problem is writing up a small synopsis of ds. Small? I do not know how to do that. Maybe i could highlight his problems, past and current, and include my crazy long history in the hopes it'll be read. Quote Link to comment Share on other sites More sharing options...
EKS Posted November 29, 2012 Share Posted November 29, 2012 My biggest problem is writing up a small synopsis of ds. Small? I do not know how to do that. Maybe i could highlight his problems, past and current, and include my crazy long history in the hopes it'll be read. First of all, I hope you get some answers. Also, I wanted to address the write up thing. When we went to see a very famous pair of doctors about my son's dyslexia (which hadn't yet been diagnosed), I really wanted to clearly communicate his history to them. So I wrote up exactly what you are suggesting--a synopsis, bullet points really, and then a much longer, more detailed history to go with it. I wrote the detailed history first and then extracted key points for the synopsis. Quote Link to comment Share on other sites More sharing options...
PeterPan Posted November 29, 2012 Share Posted November 29, 2012 That's exciting! Keep us posted! So how long does it take to get into a doc like this? Do you have a long wait? Quote Link to comment Share on other sites More sharing options...
Tokyomarie Posted November 29, 2012 Share Posted November 29, 2012 First of all, I hope you get some answers. Also, I wanted to address the write up thing. When we went to see a very famous pair of doctors about my son's dyslexia (which hadn't yet been diagnosed), I really wanted to clearly communicate his history to them. So I wrote up exactly what you are suggesting--a synopsis, bullet points really, and then a much longer, more detailed history to go with it. I wrote the detailed history first and then extracted key points for the synopsis. This is exciting news for you, Amo_mea_filiis! I like Kai's suggestion to write up the detailed history, then extract pertinent bullet points. You can include both documents, with the bullet point one on top. That allows the docs to get the big picture quickly, but still have the ability to drill down to whatever detail may interest them. Quote Link to comment Share on other sites More sharing options...
EKS Posted November 29, 2012 Share Posted November 29, 2012 You can include both documents, with the bullet point one on top. That allows the docs to get the big picture quickly, but still have the ability to drill down to whatever detail may interest them. I realized that in my other post I neglected to mention that I did include both documents. The doctors seemed to like this approach, though these particular doctors seem to be more interested in details than other professionals I've dealt with. Quote Link to comment Share on other sites More sharing options...
amo_mea_filiis. Posted November 29, 2012 Author Share Posted November 29, 2012 I'm not sure if or when we're going to see these Drs. The neurosurgeons at the chiari institute do not accept insurances, but if he has a chiari, I'll find a neurologist to follow him. It will take about 3 weeks after the chiari institute has his files before i hear back. The only think I'll hear is no chiari, or more imaging needed. I assume it'll take some time for the research neuros to review his stuff. If he does have a chiari malformation, it could mean different approaches to physical type problem, maybe. If CCAS somehow fits, anything we do would be an experiment since CCAS as a diagnosis is still just a theory from what i understand. But I would try to get cognitive behavioral therapy in place. If Janet Sherman takes our insurance and does the qEEG, I'll try to start that process. Regardless of the diagnosis, he does need a neuropsych eval. I started his history as best as i can remember and since i have time, I'm going to flip through his evals over the years to see what was diagnosed when. His binder of "stuff" is huge because he had so many evaluations ("yes, he's delayed, but not enough"), and saw soooo many Drs. A ped around 15 months said casually in passing that ds may have a bit of OCD, but never said what to do about it. The people who were able to help with the doing part were the ones to deny help. Quote Link to comment Share on other sites More sharing options...
EKS Posted November 30, 2012 Share Posted November 30, 2012 His binder of "stuff" is huge because he had so many evaluations ("yes, he's delayed, but not enough"), and saw soooo many Drs. A ped around 15 months said casually in passing that ds may have a bit of OCD, but never said what to do about it. Another thing I did was to summarize the findings of each evaluation and then I attached that to the front of the pile of reports. Quote Link to comment Share on other sites More sharing options...
amo_mea_filiis. Posted December 10, 2012 Author Share Posted December 10, 2012 The MRI CDs finally made their appearance!!! I'm packaging everything and sending it off to the chiari institute. :) Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted December 10, 2012 Share Posted December 10, 2012 Praying that you get some answers! :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
amo_mea_filiis. Posted December 11, 2012 Author Share Posted December 11, 2012 And i made it to the post office for the chiari institute (only posting this so i can look back at the date. Lol). Quote Link to comment Share on other sites More sharing options...
PeterPan Posted December 11, 2012 Share Posted December 11, 2012 Well we're going to be sitting around waiting to hear! How long till you know anything? Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted December 11, 2012 Share Posted December 11, 2012 Way to go! I hope those guys at the CI are on the ball and take a look at it right away, so we all won't have to be on pins and needles waiting for long. Personally, I'm hoping you'll get news before Christmas. Quote Link to comment Share on other sites More sharing options...
amo_mea_filiis. Posted December 11, 2012 Author Share Posted December 11, 2012 I was told that the time frame is 2-3 weeks. I will post the moment they call or i get something in the mail. Quote Link to comment Share on other sites More sharing options...
amo_mea_filiis. Posted December 13, 2012 Author Share Posted December 13, 2012 Chiari institute received ds's MRI and paperwork. I got a call from the neurosurgical coordinator (woman who handles this paperwork)....But i was out and missed it! She does not work on Fridays so i hope to hear from her on monday. Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted December 13, 2012 Share Posted December 13, 2012 Chiari institute received ds's MRI and paperwork. I got a call from the neurosurgical coordinator (woman who handles this paperwork)....But i was out and missed it! She does not work on Fridays so i hope to hear from her on monday. Waaaaaaaaaaahhhhhhhhhhh! I feel for you! Quote Link to comment Share on other sites More sharing options...
amo_mea_filiis. Posted December 17, 2012 Author Share Posted December 17, 2012 I called the chiari institute this morning. The concern? His insurance and one question i left blank with an explanation. I don't know why this is even relevent. The CI is 3 hours away. If they feel that he needs to be seen and there's more to his MRI than ive been told, I'll find a neuro around here. The question had to do with disability and function levels. I wrote that he has multiple problems and is only 8 years old! Self care? 8 year old boys are probably not all getting A's in butt wiping or showering. I was unable to "score" his functioning by choosing one of six statements. This is not looking as easy as i was told. :( Hopefully the CCAS neuros are not as difficult to work with. I also called the center for autism research. I was supposed to get a call from them to go over everything once officially scored. Going into this, i was told that they'd offer more than just a yes or no regarding autism. All i left with was "he's absolutely not autistic, he's complex, needs to be in ps, oh and we'll have a social worker call." Gee, thanks. Is the social worker to "keep an eye" on me? Is she going to find the magic support available in my backwards county? They're in Philadelphia, a different world from where we are. My frustration is added to by ds having spent the last 2 HOURS putting away dishes. Should have been done in 5 minutes, and that includes time for a tantrum. Quote Link to comment Share on other sites More sharing options...
PeterPan Posted December 17, 2012 Share Posted December 17, 2012 My lands, you went in for an autism eval and came out with an inspection by a SOCIAL WORKER? Sigh. No wonder you're frustrated. Obviously my boy is not 8 yet, but no I would not think he (if NT) would need help at 8 for basics of personal hygiene. Those seem like very reasonable ways for them to gauge function. I remember how hard filling out all those forms can be. They ask questions you don't know or where the answer seems like it could vary depending on the day. :grouphug: Quote Link to comment Share on other sites More sharing options...
amo_mea_filiis. Posted December 17, 2012 Author Share Posted December 17, 2012 I guess my 2 give me a different view. My fairly independent 11yo still needs help with her biracial hair. But, i guess by 8, the butt wiping should be done all alone. However, does this lack of skill have anything to do with a possible chiari malformation? I think that's where my problem is. His problems, if he has a chiari, are not all because of it. Quote Link to comment Share on other sites More sharing options...
amo_mea_filiis. Posted January 2, 2013 Author Share Posted January 2, 2013 I HATE WAITING!!! "The holidays" got in the way of ds's stuff being reviewed at the chiari institute. It should happen in the next few weeks. They do these reviews on Mondays. Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted January 2, 2013 Share Posted January 2, 2013 :grouphug: :grouphug: :grouphug: How frustrating! I hope you get some answers soon. Quote Link to comment Share on other sites More sharing options...
amo_mea_filiis. Posted January 10, 2013 Author Share Posted January 10, 2013 Chiari institute called back. They can't make a formal dx based on one MRI, but the impression is more imaging and yes to chiari malformation. If we had different insurance, the chiari institute would see him, he could be a surgical candidate (that is a scary thought! Not going there right now). I called his neuro that he saw yesterday and am waiting for a call back. I have to make sure the new MRI we're doing includes what the chiari institute would have ordered. Quote Link to comment Share on other sites More sharing options...
PeterPan Posted January 10, 2013 Share Posted January 10, 2013 My goodness. Well at least you're getting the start of answers. So will the Chiari people let you send in the new MRIs to get them eval as well? Quote Link to comment Share on other sites More sharing options...
amo_mea_filiis. Posted January 10, 2013 Author Share Posted January 10, 2013 We'll meet with a neurosurgeon through dupont. If something seems too questionable or whatever, I'll beg the chiari institute to consult or I'll find another one. I'm sure the one in ny is not the only one out there. Quote Link to comment Share on other sites More sharing options...
AnIslandGirl Posted January 10, 2013 Share Posted January 10, 2013 I'm not sure if they are already on your radar, but "Conquer Chiari" is looking for volunteers in a research project. Thought I'd pass it along just in case! http://www.conquerchiari.org/pediatric/pediatric-index.html Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted January 10, 2013 Share Posted January 10, 2013 GL with the neurosurgery consult! Sending positive vibes your way :grouphug: Quote Link to comment Share on other sites More sharing options...
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