vomiting now

[bradysmom38633]

I posted a few topics earlier this month about my 9 year old son that was recently dx with low lying cerebellum tonsillar ectopia. His recent MRI a few weeks ago confirmed it's still 3mm below the foremen magnem but she feels he doesn't need to see a surgeon at this time. Since our return from Jackson, MS it has been just horrible. The school calls me constantly at work saying my son wets his clothes and complains the majority of the time with a  headache. Everyday he laughs saying his right foot tickles and last night while he was sleeping he started coughing so bad he started to vomit everywhere. With all the viruses going around I assumed he had one. But he had no fever just vomiting. Today he's fine just complaining about his head bobbing (jerking tics) He's high functioning autistic, with a severe sensory disorder along with a recent dx of tourettes. My motherly instincts tells me he don't have tourettes all because he bobs his head. I feel like it's part of all of this that is going on with his brain. Every doctor that I have called or researched on does not see pediatrics that's experienced in chiari. He can't take meds for his headaches and other symptoms because he developed tardive dyskinsea from taking risperdol a few years ago. Most meds will surface the TD again so I don't know what to do to help him. I called Vanderbelt in Nashville and they won't see him because hes on MS medicaid. is there any chiari specialist out there around MS, TN, AL, AR that will see peds? I'm willing to travel if they will accept his insurance. I'm fixing to loose my job because i'm constantly having to pick him up from school either from accidents, headaches, or uncontrollable jerking movements that frustrates him. Single mom of 3 and work full time as a teacher assistant and go to college full time at night. It's so frustrating but i'm willing to do anything to help my son. Please if anyone knows what I should do next please let  me know. Thank you

[youngwife]

((((HUGS))))  I am so very sorry that your struggling, and that your son is dealing with so many symptoms and issues.  You've really got a lot on your plate!  

I have been searching for years, and have not been able to fine a Chiari expert in our area.  I have heard, however, that some times Drs will see patients pro bono in certain situations.  

I am currently making contacts with Congressman Alan Nunnelee, to ask him to help my daughter be able to receive adequate health care.  Mississippi Medicaid simply does NOT provide adequate health care to special needs kids.  It's just wrong!

There just aren't many options. I wish I had better news for you, but I don't.  I think that Selma's idea of Dr. Frim is a great place to start.  Yes, he is in Chicago, but he is a nice man (from what I have been told) and may be willing to look at films at least.

Prayers for you and your family,

Rebecca

[selmaS]

Hi...I remember ur posts on ur DS....and wonder if he had ne testing on his bladder?
Chiari itself can cause issues with the bladder, but so can tethered cord.

I know u deff need a ped NS that is well experienced with chiari...I know of 1 in Chicago, a Dr Frim....he sees children.

I wish I had more info to offer

  "selma"