Please help my daughter!!! What is happening with her? Catatonia symptom

[Patmom]

Hello to all. 

My daughter 14 yo after vaccination DTaP and HPV, after it she changed a lot. Doctors dont want recognize brain injury after vaccine.The worst symptoms started 4 weeks ago, trouble with speaking, attention, walking, catatonia, mutism, all function regression.

Now we are in hospital, 10 days we was in neurological section, she did all test(MRI, blood test, ECG, spinal test)-all test are negative and look normal, we wait immunity test for infection in this moment. because our test look normal, they transfer us to mental section, I dont agree with their decision.

Now she is on ativan-lorazepam-9mg/day, it helps, but no so well. also she had 1/kg of IVIG.

I would like to know if it is auto-immune disorder? Can she has it if all test are normal? What test she need to do?

Thanks

 

 

 

[MomWithOCDSon]

Where are you?  What hospital is your daughter currently in?  Any more new with respect to test results?

Did these symptoms come on suddenly?  Is your daughter otherwise neurotypical, or has she previously presented with autism or another neural disorder or "difference"?

Yes, these symptoms are ones that can show up in severe episodes of auto-immune disorders, but not every medical professional is going to recognize the signs for what they are.  When you had blood tests, what tests were included?  You mention having an "immunity test."  Via blood panels?  What testing is included there?  Make sure you're testing for ASO and anti-d-nase b (strep antibodies).  Catatonia (even narcolepsy) has been associated with untreated strep infections, and many people are classically asymptomatic for strep -- no fever or sore throat, but raging antibody levels nonetheless.

If you're spending time in the hospital, waiting, you might try getting a copy (it's available in digital format as well as paper) of a memoir by Susannah Cahalan called "Brain on Fire."  Susannah suddenly developed all sorts of bizarre neuro symptoms, some of which your daughter is also displaying.  She was studied and poked and prodded and tested, and they couldn't find the culprit; a set of doctors decided that she had a multitude of illnesses, both physical (seizure disorder) and mental (psychosis), but then one out-of-the-box thinking doctor noticed a few atypical behaviors and kept studying her and ultimately determined that she had developed some auto-immune reaction to some unknown microbe.  It's been a while since I read the book, but I don't think they ever found out definitively what it was.  I believe Susannah was treated with multiple interventions, but infusions were definitely in the mix, and she recovered. She was in New York, and the doctor who essentially saved her was Dr. Souhel Najjar.

[Patmom]

Thanks. Monday I will ask them for all name test. Doctor did a spinal test to determinate infections and immunity. Test anti-NMDA like Susannah Cahalan is negative, normal.  It is very hard really. I am in hospital in this moment, now is two weeks, they can not put a diagnosis. Only she has lorazepam for catatonia, 9 mg per day.

[tk1234]

I wonder whether one of the docs could consult Dr. Najjar to rule that set of concerns out. When he spoke at the beginning of the month at the Common Threads conference it was clear that ultimately, like pans, pandas some cases of encephalitis are ultimately clinical diagnoses like PANS/PANDAS.  He explained that in a not insignificant number of cases, antibodies don't get elevated and one must take the entire clinical picture into account. I am wishing you all the best.

[Patmom]

On 3/31/2018 at 9:54 AM, tk1234 said:

I wonder whether one of the docs could consult Dr. Najjar to rule that set of concerns out. When he spoke at the beginning of the month at the Common Threads conference it was clear that ultimately, like pans, pandas some cases of encephalitis are ultimately clinical diagnoses like PANS/PANDAS.  He explained that in a not insignificant number of cases, antibodies don't get elevated and one must take the entire clinical picture into account. I am wishing you all the best.

Hi, Thanks for message. I asked about PANDAS, and my doctors said, she doesn't have symptoms PANDAS, she doesn't have fever, tics,.

Her symptoms are catatonia. They dont understand what is the cause exactly. 

Maybe vaccine cause permanent brain damage? 

[bws1565]

I am sorry to hear about your troubles and wish your daughter a speedy recovery.

Unfortunately, vaccines can cause serious injuries especially the HPV.  There are many reported incidents regarding this vaccine.

Definitely hold onto tightly to all medical records and if, unfortunately, your daughter might have some lasting injuries you should contact a lawyer and apply for compensation to the Vaccines Courts. Have the administrating doctor report this reaction to VAERS (Vaccine Adverse Effect Reporting System)  as soon as possible.

Hope you might find any other solution to help you.  

[Patmom]

Hi. My daughter is not well. They want to increase dose of lorazepam from 7.5 to 15mg for Catatonia. They dont have any idee what is happening with my daughter. Anti-NMDA is normal, MRI-normal, EEG-normal, all test are normal. My daughter started regression after vaccins DTaP+HPV. I want my daughter back.  

[rhyanen]

Have they checked for other autoimmune encephalitis like GAD65, potassium channel and the other limbic encephalitis? There are several variants. ADEM is another one. My coworkers son had developed that. I agrree with consulting with Dr. Najar. I hope they can figure it out soon. I will keep your daughter and your family in my prayers! Keep us posted. 

[Wombat140]

Hi Patmom, how's it going?  Any progress?  I do hope your daughter gets better soon.

[LordChallen]

patmom,

I can only imagine your pain and that is bad enough for me. Losing your child in this manner has got to be the more horrible thing.

I'll be brief. I'm sure you will become an expert in your own right soon enough.

About the vaccines. . . .

The word in the underground is that the body is trying to get rid the toxins. The toxins used in the vaccines are supposed to be benign, and probably are. But they are designed to basically stick in the body and not get flushed out by the body. Some believe, myself included, that things like what is happening to your daughter is because the body is confused about the toxin. It isn't trying to get it out, but it is also reacting to it.

I know of no cure, but if you want the best results, IMHO, look into immune organizing and support, and detoxing. But, be careful  with the immune support, you don't want to throw 10,000 units of Vitamin C at it as that might over activate the immune system.

I am sorry this happened to you and your daughter.