DS being admitted to Children's in Chicago tomorrow.

[qannie47]

Ds who has taken a turn for the worse is going to be admitted to Children's tomorrow. His pediatrician did a phone consult with a neurologist there and went over his history. The particular neuro has specialized in autoimmune/psychiatric symptoms and believe that this is auto-immune based. According to my ped's doc, he believes in Pandas....DS will get MRI EEG Spinal tap, etc.....My ds has become someone else. Withdrawn, blank stares at times, very dark, trigger rages at any little thing, short term memory decline, sleepy .... This is so far off from his baseline personality it is almost a polar opposite......I just hope we find some answers....Prayers...

[MomWithOCDSon]

All the best!

 

When you're out the woods and get a chance, can you PM me that neurologist's name? As I mentioned earlier, we got nothing but the psych run-around from Children's a few years ago, so I'm pleased that they are seemingly getting onboard. Would love to know who there is a viable "go-to" person.

 

Hugs to you and your kiddo!

[Dedee]

Praying for your son. Hope you get some answers and some resolution.

 

Dedee

[PowPow]

this is great. I really hope you get some answers.

even with normal MRI, LP, EEG, ASO- your child may have a very treatable form of autoimmune encephalitis, which can be only obvious from severe psych symptoms.

 

praying for you and please keep us updated.

[qannie47]

I hope they find something that will provide some answers. Of course, the hospital failed to call today to start the admitting process, our doctor is disappointed. Hopefully they will call first thing in the morning so we can get this going.

[Hopeny]

Wishing all the best for you. It is so very scary. Please keep us posted.

[trintiybella]

I have been to three different neurologist there at the start of all this mess. They looked at me like I had 3 heads when I told them of my child's symptoms. I guess they have someone new that "gets" it, finally! Lots of luck. Thinking of you....

[Hrosenkrantz]

trinitybella -- when you tell them child's symptoms and they look at you like 3 heads -- even if they don't believe in/treat pans, surely they must offer some explanation for the symptoms?

[T_Anna]

Prayers!

T.Anna

[qannie47]

Trintiybella, I can't imagine going what we all go through only to have doctors look at me like I am crazy. I am sorry that you have experienced that. We have been lucky that ds's pediatrician had some experience first hand with another Pandas child, so he got it. So he goes to bat for us. The neuro, who is admitting him today also ascribes to the belief that some psychiatric symptoms are autoimmune related. In fact, he has done research on this specifically, and gets funding from NIMH from what I have read. So, hopefully, we are with the right people. Perhaps our experience can help to shed light for all of you....I will start a thread specifically to keep all of you about tests done, and results.....

[trintiybella]

No, they did not give any explanation of symptoms. They said see a psychiatrist.

[PowPow]

No, they did not give any explanation of symptoms. They said see a psychiatrist.

Trinity,

how is your girl?

[JoyBop]

I am so sorry that things have gotten so bad. I hope that your son gets the best treatment and care in the hospital and that you are able to get to the cause of it. Can;t you just go in with the admitting papers and check in at registration? Better yet, have your peds office call ahead and get things going.

I will be thinking of you!!!! Good luck!!