DX-no treatment: possible misdiagnosis

[quiverfull08]

My 14 y/o granddaughter became a cheerleader this year. In 9/2009 in the early morning as she was dressing for school, she passed out and was taken to the ER because she hit her head. Initial ER diagnosis was that the problem was due to vagal response. Presenting symptoms included recent sinus infection and ear infection, severe constipation, headache, jaw tightness and pain, and abdominal pain. Within 20 minutes of being released she has some kind of episode where her lip was drawn up on one side and her head turned off several times to one side. She looked like she was in pain and trying to speak. Her arms and legs began jerking. EMT's were called. When they arrived they put her on her feet and she walked and answered questions. After arriving back at ER she had a seizure accompanied by incontinence and tongue biting. Tests were normal except for identification of a chiarra malformation.... Grade 1. Her acute constipation was left untreated while in the hospital for 2 days. She was put on keppra and a follow-up was made for EEG. Within a few days her speech became slurred and she had difficulty talking. Then the sinus infections returned with a chronic low grade fever and continued constipation. Her headaches grew worse over days. She was finally treated with an antibiotic but her doctor said no treatment for constipation.  Finally, the EEG was done and came back normal. She finally seemed to be making some improvement with reduced keepra dosage and was released to resume cheerleading. She resumed her old activities and began doing the flips, and other cheerleading tricks. Within a day or so the sinus problems and ear infections returned with continued constipation, headaches, nausea,  facial and eye pain, spasms in her fingers with her hand assuming the trousseaus sign, and chronic low grade fever. We took her to the doctor because these were the same S&S prior to the first episode except for the hand spasms. The doctor stated she had swollen turbinites, fluid in her ears, and severe constipation. She was sent home without receiving any treatment. I remained concern and as I was sending the doctor an email voicing my concern, my daughter telephoned to report she was having some type of convulsion. WE took her to another hospital, just for children, where they had to give her an enema. After the enema and walking to the bathroom, she had another episode witnessed by the ER doctors who stated it was not a seizure because she was able to "try to talk". They suggested some possible" conversion" syndrome. Two options were presented, she could be admitted or return the next day for an EEG. Because the baby was home with a relative, the decision was made to return the next day. During the ride home, the episodes continued and she vomited clear fluid and mucus. During the night we went back to the ER where she had another episode and was admitted for observation. Over the next few hours, she seemed fine after having a BM. Father had to leave to go back and pick up mother who had to remain home until arrangements could be made for the baby. When both parents were gone, they took her for an EEG. The EEG tech stated before starting the procedure that the doctors there did not know what a seizure looked like and that indeed she was having seizures. She told my granddaughter to breathe rapidly without stopping for 3 minutes. However, the actual time was longer. It seemed my granddaughter was beginning to hyperventilate and then had an episode. A consulting doctor was brought in who put her on trileptal, IV Dilantin, and an antibiotic. She was released home the next day with a DX of epilepsy and prescriptions for trileptal and miralax. The initial DX of vagal response and chiarra malformation was pushed to the side, no MRI or CAT scan was done except for a flat plate of abdomen showing impaction. The doctors stated her labs were normal but we learned later she had low platelets and elevated sodium levels from a nursing student. They said she could resume cheerleading and contact sports. No discussion of the chiarra malformation or precautions. They said they wanted to do a spinal tap later as an outpatient. Please respond as I have a sense that misdiagnosis is very possible or that futher damage may occur as the chiarra is being ignored.

[selmaS]

Hi and welcome to the Chiari forum.

Wow, it really sounds like ur GD has been thru alot and like n40066 said, it does sound like chiari symptoms and unless the dr is trained in chiari will mis dx and not treat it properly.

IBS is very typical of chiarians...I was very affected by this for many yrs. A regular dose of the miralax should help prevent the impaction she experienced.
And some chiarians have had seizures.....

Please let us know where u r located and do check our chiari specialist thread to see if there is a dr near u...please reseaarch all drs to be sure they r a true chiari specialist.

I am glad u were able to locate us, sorry for the reson u sought us out.

"selma"

[n40066]

PLEASE!  get your granddaughter to a chiari specialist asap!  all of the symptoms she has can be caused by cm and it's related conditions!  i am by no means a dr., but she has NOT been seen by a special in cm, you could very well be right!  where do you live?  maybe someone here knows of a trusted cm dr. in your area...