Pain leading to Seizures

Posted by tcr0315 @tcr0315, Jul 28, 2019

11/7/2018. The start of a terrible medical issue. Tooth filling possible drilled to deep. Nausea headaches started same day then that and occasional throw up. Lost of time in school. May have made it In all a week. Every time she ate she threw up headaches nausea. Strep throat find out she’s allergic to penicillin she swells up so bad 4 days later she starts having seizure. Terrible a week it was identified it is not epilepsy seizures. Great but not great cause she was having episodes that last up to 45 minutes after leaving hours. As we leave the medical facilities she having episodes. Diagnosis is at this point PNES. Frustrating cause everyone and everything is in question. But worst she’s states she is not stress nothings bothering her. Several hospital visits in the ER. Just last week 4 hospitals. We have been in and currently are in the pediatrics of Wake Med

We tried everything and she’s getting worst and seizures. Throwing up blood as well cant keep food down. What are we missing. She complains of bad headaches chest aches and right side aching. Pain so bad she seizes. EEG ekg mri ct no significant findings. Stomach X-ray and saw some poop so she was given a laxative and see if that stops the pain. Update is got the laxatives down threw up seizing for the last 5 minutes and more. No one knows what to do how to treat where to look or what to say. I offended when they go the psych road I not that willing to buy this There’s something wrong. We r still in PICU at Wake Med. I need some help input ideals

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joedavid | @joedavid | Oct 29, 2019

Was there mercury in the tooth they drilled.There are a lot of people that have bad issues after having a root canal threw a mercury filling.The mercury go's to the brain and causes a lot of neurological issues

susanacj | @susanacj | Jan 19, 2020

In reply to @cillamac "First off I’m so sorry for your situation. We are still searching for answers for my..." + (show)

@cillamac

First off I’m so sorry for your situation. We are still searching for answers for my son. His was resulting from a surgery gone wrong. I’m going to sound ridiculous to you, but the only thing that helped my sons episodes was CBD and medical marijuana. I was fortunate enough to have found a dr when every other one sent us towards the psych side of meds and hospitization. Which is so frustrating as a parent. Our doctor is in integrated medicine, she prescribed the medicinal marijuana and we researched thoroughly the CBD oil. Stanley Brothers is the one we trusted and have had miraculous results. We live in Syracuse NY. We went to NYC and they started Botox injections which gave my son relief for short periods. For long term this is not what is recommended. Botox will end up killing the muscles involved but for short term it is a miracle. With trigger point injections on top of the Botox he was able to stabilize. We went to Boston Shoulder next top dr and founder had no idea what to do. Have been at Strong Neurological for the past year and they have him on Mexiletine, it is a cardiac drug but also used for seizures. Works great. But make sure to take the stomach meds like a Prilosec or another. Ask for physical rehab dr to confer, they think outside of the box. Or integrated med dr. They don’t just go from what they have learned in a book, and actually listen to the patient. CBD saved my sons life, med marijuana keeps him in check with the Mexiletine. Do not hesitate to ask for someone outside of the ICU, we’ve been there, for a month and no one could figure it out and told us psych was needed, bc they couldn’t figure it out. Child Protective was called on us also, bc they couldn’t figure it out. Now after almost 4 yrs MRIs prove a brachial plexus injury from surgery. And with the use of CBD and med marijuana he has not had a serious episode in over a year since we started this. Stay strong it is a long road. Listen and believe your patient. And research. Do not stop even when your tears are dry and heart is exhausted. There is an answer somewhere. There is a dr who will try one more thing. I will be praying for you.

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Hi! I am sorry about your son. I hope one day he finds relief. Do you mind sharing the name of the Doctor you consulted. I have traumatic brachial plexus injury for 16’years. The spams have gotten worse and I am in need of someone good who can check me.

lynette1975 | @lynette1975 | Jan 20, 2020

I'm sorry you are going through this. Has your child had a lumbar puncture yet (spinal tap)? Sometimes they can offer answers if the doctors can't find anything.

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