Connections to sibling- off topic, but you all seem to know about everything

[Plum99]

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Edited September 23, 2016 by SSoda

[SSS]

Congenital Lyme Disease.

Lyme passed from mother to child via pregnancy/womb and/or breastfeeding.

Maybe that sounds crazy to you,

I know it did to me when suggested.

But it's a scientific proven fact transmission is possible,

I myself tested positive for Lyme (PCR culture)

and passed it to my daughter,

who (in retrospect) had symptoms from birth,

and I'm sorry to say this,

much like you're describing.

[Plum99]

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Edited September 23, 2016 by SSoda

[HopeinHIM]

Others have suggested Lyme too. I'm waiting for test results. What were the symptoms your daughter had that mine also has? Would that also have anything to do with some crazy vascular birthmark that is supposedly spontaneous and has something to do with mosaicism? And both of my kids have huge heads. I feel like that means they have encephelitous. Would that be related too? As much as I read on Lyme, it's hard to really relate it, because it seems like everyone would have symptoms, and it also seems like everything is a symptom.

Maybe try Dr R Trifelleti in NJ. He does some very good genetic testing and he will do both children. His labs are covered by insurance most of the time.

Phone consults as well . He is $$ . Most likely you will NOT get a definite lab positive if it's Lyme or Bartinella related though. Protozoans and microbial' s may be a piece of this puzzle for sure. There are probably a few things going on with both children and it's a puzzle that you will have to work through. 23&ME test might be helpful. We used a pace in PA. The ND is Bob Miller and very knowledgeable. Don't trust the medical doctors to give you all the answers. You are the captain of this ship. God Bless!

[Plum99]

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Edited September 23, 2016 by SSoda

[SAND9417]

Have you looked into Ehlers Danlos Syndrome? It is more common among females, but your comment about him being double jointed surely made it spring to mind. Many with EDS have autistic traits as well.

[mama2alex]

PM'd you!

[HopeinHIM]

I don't want to be the captain! I live in California. I'm back to calling repeatedly to try to be seen, but I'm also still waiting for test results. But I feel like I should not be waiting for test results, and someone should be treating this like an emergency. I feel like she maybe had a stroke. Both of my kids don't want to swallow? How is that possible? Both have balance and language problems? Now my son has a rash or maybe a bunch of bug bites on his leg and blood blisters on his feet? I'm sure I'm looking into every little thing too much, because I don't know how those things could be related, but why can't my kids walk down the stairs anymore? I can't even handle bringing them to appointments because of how out of control they have become, my daughter can't walk more than a few steps without falling, and then flying into a rage. Ship is sinking.

So sorry. It sounds terrible. My son had issues with walking as well. Lyme's and co infections can do terrible things to people with already compromised immune systems. Have you had a thorough immune panel done yet? How about any neurological tests done? Not saying that is what it is but odd behaviors and all of that I have heard of with Bartinella/PANS. You definitely need a lead doctor to help you diagnose some of those symptoms. Blood blisters and unable to swallow!!!?? Poor babies! The docs will guide you some of the way but you will be responsible to put all the pieces together. Dr T (pediatric Neurologist) may be helpful to at least direct you to the right type of doctor. Most of us here have a team of docs. Neurologist, Lyme's doc or ND's and many have immunologists as well. Its great when they all agree but many times you must play the middle guy and be in control. Perhaps a DAN doc can be helpful. It might be that if you begin to get answers to one of your children it might be helpful to understand the other child as well. Hang on!!

[Sirena]

Babesia apparently has potential to cause strokes-not to alarm you more...my DD had quite a few symptoms on your list excluding head size. Found out to be silent strep carrier. She had feeding issues linked to reflexes being impacted. DS7 started having similar when major onset occurred. We know know he's both pandas/pans.

Maybe ped can order anti inflammatory panel and Igenix tests while you identify a possible captain?

Does ibuprophen help at all?

[Plum99]

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Edited September 23, 2016 by SSoda