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Advice on IVIG and making sense of flare
TraceyB posted a topic in PANS / PANDAS (Lyme included)I am hoping to get some help making sense of our current flare. My son got PANS when he was three, but he really fell off a cliff two summers ago at age 7. It wasn't until last summer that we began treating it as PANS with Dr. P, and by October had determined mycoplasma and HHV-6 as triggers. Two steroid tapers and 6 months on azithromycin and his infection numbers were down to nothing and he was doing well (making new friends, laughing, his personality back). However, his IgG numbers, which were very low in October, continued to drop. We planned on doing IVIG this summer. In early June he had a tick bite with a bulls-eye rash and began treatment that day for Lyme. Unfortunately, he has been declining as the summer has gone on. He did two weeks on doxy, a week and a half off before we realized he was still being affected then two weeks on Ceftin. Last week he became very aggressive which had not happened since two years ago so we started a prednisolone taper. We were also just denied IVIG coverage by our insurance and are planning on paying for it ourselves. He just switched from Ceftin to Rifampin three days ago in case he has bartonella. On top of all that, he was stung four times by wasps last week (can that cause flaring?) which has restarted a major bee/hornet phobia and has him scared of being outside. He also just started saying he hates the feel of water which takes away our only activity this summer of swimming. He is scared of everything, says he "doesn't feel right" and has started saying he wants to "go home" which in the past has meant heaven. His sister also has an open sore on her bottom which could be staph (we are having it looked at today). Can this be causing the flare? I am a wreck trying to trouble shoot and keep my own mental health strong. I am anxious to do IVIG as soon as possible to alleviate his suffering and give him time at home before school starts, but I wonder if we have all the possible infections covered. Any thoughts? I would also love advice about preparing for IVIG. Did it help? How did you keep your child calm? Do they need other medications at the same time to make it more effective? Any questions I should be asking of his doctor? Thank you for your advice!
PANDAS is news to me...
Duckee posted a topic in PANS / PANDAS (Lyme included)I have just been told my son likely has PANDAS. I knew nothing about it. After reading quite a bit I am putting pieces together. He was given amoxicillin the same day as his MMR when he was 18 months old, for strep, I think... still checking to be certain as it may have been for massive ear infections, if which he had many. Another piece of the family auto immune puzzle is that this same time he regressed into a world of autism. Yet another, I have an adult daughter 15 years older who is on the spectrum. But here is my reason for posting: does anyone know of or has anyone heard of a documented or researched connection to autoimmunity disorders related to infections other than strep? I had recurrent TSS for 25 years and nearly died from sepsis month after month when doctors at a prestigious clinic in Phoenix dismissed it as imaginary. Fortunately, I found a great doctor. Could staph have a similar reaction as strep in people who may develop PANDAS, people who are constantly exposed to it or are carriers ?
Finally found a reason for DDs headache
mdmom posted a topic in PANS / PANDAS (Lyme included)Thank you all for the ideas you have shared with me regarding my daughter's headache. Just to review, she developed an unrelenting headache on 11/16/13 and up until last week no doctor has been able to find the reason. Her pain spiked last week and she was admitted to the hospital. Some smart pediatrician thought to look in her eyes and saw optic nerve involvement. Opthamologist confirmed papilledema (swelling of optic nerves), MRI (2nd one this month) showed nothing. So they did a lumbar puncture and she had an opening CSF pressure of 48cm. Highest pressure the docs have ever seen in someone her age and size. She is 14. Newest dx is Idiopathic Intracranial Hypertension (IIH). They are hoping to manage it with meds, as it can be a chronic condition but surgical intervention may be needed if the headache and vision implications can't be managed with meds. We now have a pediatric neurologist and a pediatric neuro-opthamologist on her case. After 3 years of treating co-infections and getting a lot of criticism for the LLMDs protocols from mainstream docs including the new docs on her case, they all are suspecting Lyme caused this. Is that irony or what? Now the plot thickens....she has an active Brucella infection confirmed by 3 blood tests in the last 3 weeks. She also has a staph infection confirmed by 2 blood cultures. I also found a sphenoid sinus culture lab result from Nov. 2013 that showed staph in her sphenoid sinus, which the ENT considers normal. Her primary care doc, the neurologist, neuro-opthamolgist and LLMD all agree that she needs to be treated for the Brucella. But no surprise, no doctor would touch the infection but the LLMD. While all of the 3 mainstream docs twiddled their thumbs this past week and waited for someone to treat her infection, my LLMD already had ordered the IV meds to treat it and had them delivered to my house. This is the very same scenario that made me leave the mainstream medical world and go off the beaten path to our LLMD. So many mainstream docs will pass the buck. The staph she has in her blood is coagulase negative staphylococcus and it's the same bacteria that was found in the sinuses. According to dr. Shoemaker, this is MARConS. She is being treated now with IV Vancomycin for Brucella and staph. And now we wait for the idiot mainstream doctors now involved to try and figure out the reason for the IIH. LLMD thinks it is caused by the Brucella (many medical articles have been written about this connection) but I wonder if the staph in her sinuses could have leaked into her bloodstream and/or CSF and caused the intracranial hypertension. Does any of this make sense to anyone out there? I would love your opinions.