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Wish I could help you figure that out. I have zero faith in my ability to interpret the rules of antibodies. I am acing difficult classes like Human Anatomy & Human Physiology, yet I can not wrap my head around this concept. There seems to be exception to every rule once I think I have it all figured out.

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Ok she now has a temp of 102 even with Advil. She is on abx now for an ear infection, which is pretty much already healed.

 

Can this be related you think?

Or maybe she picked up a virus from being in the hospital for 2 days?

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So hard to tell. Could all be related, or like you said she could have picked something up at the hospital. Hope she gets well soon though. Poor kid.

 

Anything is possible. There are a lot of crappy germs in the area, the local pharmacy was crazy busy today. Keep your camera at the ready, but hopefully you won't be needing it. Hang in there!

Edited by Orion
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This ear infection is.back in full force! It was pretty clear yesterday. Brought her in at 4:45 and her temp was 102. She had to get a shot of rocephin. And will get another tomorrow amd saturday. I gave her motrin a 1/2 hour who and tepid bath and her temp was 104.1.

I'm going to retemp her soon amd hope it goes down. Otherwise we will be at the ER again :(

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My DD12 had unexplained seizures at age 2, and a normal EEG. When the current symptoms started last fall, we felt it had a seizure like component because she feels "sick" before the "rage episodes" and then is really tired after and doesn't remember anything. The P-DOCs at Sheppard Pratt told us it was normal for psych patients to say they don't remember bad behaviors, but we didn't think she was lying. We pressed for an EEG and they ignored us.

 

Finally got someone to order the EEG in January and it was abnormal, with spikes in the left-temporal lobe region! Neurologist said it fit the description of "temporal lobe epilepsy" (my sister has epilepsy, although hers are grand-mal seizures).

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Her EEG showed no abnormalities. I do think something is going on. I knew I shouldn't have given her that PCV13 vax. I went in that day telling my pedi no vax, and he talked me into it saying she already had 2 of these and no reaction.

Figures, there was hardly anything I noticed at the hospital, but I did notice this morning her kind of dropping her head, but she snaps out of it within a few seconds.

We have a supportive pedi now, so we are no longer getting anyone vaccinated.

I got the pertissus vax in the hospital and I still nurse her.

 

I had Dr. B check me for Lyme last week and.we don't see him again until June. I think I will do a phone consult.

 

I wish things were easier for all of our kids :(

I'm just really having a hard time coping with all this stress lately.

 

I think I will bring Lucy along to our next Dr. B visit.

And I will give her a throat culture Wednesday when I go to our pedi's.

Thanks everyone.

 

 

 

my dd is doing very well but in retrospect I think vaccines along with possible other mercury exposure had almost everything to do with her illness. I have been quite obsessed with researching it lately and it really makes sense to me, more than any of our other diagnosis (pandas, lyme AND mycoplasma) I have read about mercury causing permeability of the Blood brain barrier which makes sense to me why we have to call it PANS or PITAND because anything that crosses the blood brain barrier (which the function is to keep most antigens out!) can cause inflammation. Even the supposed mercury free vaccines still have some along with other toxic adjuvants. I too had gut instincts as a mom taking my baby in for vaccines, something just didn't sit right with me... I felt so uninformed about what was being given to her. I did start to space them out more, but in retrospect, I would have dug deeper and not let myself be manipulated into giving all of them. Good news is, she is healing from whatever the cause. I have my girl back. Its been a long road but she is an amazing young girl and I thank GOD everyday. My heart breaks for what you are going through with your baby. I would like to suggest that you follow your gut instincts as best you can. We are on the other side of this, and while there are some things I wish I would have known before, I feel mommy instincts got me this far! My dd was so bad at one point they wanted to admit her to a psych facility! You wouldn't even know its the same girl

Edited by Priscilla
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Wish I could help you figure that out. I have zero faith in my ability to interpret the rules of antibodies. I am acing difficult classes like Human Anatomy & Human Physiology, yet I can not wrap my head around this concept. There seems to be exception to every rule once I think I have it all figured out.

 

 

know what you mean sista!

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I am at the hospital with my DD10 months old for possible seizure episodes. She is still hooked up on the EEG. Basically her first episode was in Feb. It was about 1 month after a PCV13 vax. Before the 1st episode she started doing a head shaking, like as if saying no. Had an EEG for that, was normal.

Her 1st episode lasted about 2 minutes. Her eyes glazed over amd she was blinking and her head was falling gently. She was confused for about 10 minutes after. Never had a follow up EEG.

She had a small episode on Easter and two the next day. Looked the same but lasted about 10 seconds.

Then Saturday night it happened 6 times in less than 3 hours...

She has been on an EEG since Sunday morning. No episodes until this morning where she had one that lasted a few.seconds.

 

Wonderig if this could be an early sign of PANDAS.... Any thoughts?

 

 

2 Pediatric Neurologists who we have seen think DS16's seizures are related to PANDAS. His EEG's are abnormal in the fronto-temporal lobes (epileptiform spikes), and this was with repeated eeg's, but they were never able to diagnose epilepsy. He is on 2 anti-seizure meds. They very much seem to be helping, as I can't remember a seizure episode since starting the 2nd one.

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Been awhile since I've posted......we are at the university level with studies and progressing on a treatment. DS22 now had first grand mal seizure at 21 (can't remember the new name for them). Also had strong evidence of the "time out" style seizures at 12, as noticed by his teacher. All tests at 12 and 21 came back FINE! Last seizure was chalked up to a medication lowering his seizure threshhold. As it was explained to me, some people may be more prone to seizures (our kids!) but don't necessarily progress to having them until the addition of some lowering factor the seizure takes place. Sorry for saying this in a confusing way. They did not put him on meds, but took that particular med off his prescribed list.

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