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almost 12 weeks post-IVIg


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I am a daily reader of this forum and am so thankful for all the helpful and caring people on here!

I have a question about treatment.

Looking back and now that I know about PANDAS I know my daughter had been accumulating bad antibodies for some time. :( It wasn't until October 2012 that her symptoms became SEVERE and she had her "falling off a cliff" episode. In Aug and Sept DD had developed sudden EYE-ROLLING and sever separation anxiety. We noticed she would also have to say the same things at the same time, for example when I picked her up from school she would ask the same question the same way. When she would go to bed she would have the same routine and ask the same questions every night. Then we noticed her mood - SO DEPRESSED!! Color was PALE. Had constant migraines and needed ice on her face and eyes NONSTOP. She withdrew drastically. Had phobias and panic anxiety. Couldn't make it through a whole day of school. Made appointment with psychologist. Had to wait weeks to get her in :( Diagnosis was sudden and severe OCD and transient tic disorder vs Tourettes!!! That night DD opened up and told us ALL of her fears and rituals --- poor thing!!! There were LOTS! She was NOT doing good and nothing was helping! No one could tell us what was going on. She was writhing on the floor. Doing headstands constantly -- in the car, on the floor, on the couch. Twisting her head and neck in these painfull "yoga-poses." She couldn't walk more than a few steps before falling on the floor and twisting and writhing. And I use the word "walking" but it was actually hopping and spinning, tapping and touching, eye-rolling and humming or screaching. OK I am getting sick just thinkning back to those days :(:( There was so much more awful stuff going on but I will stop with that. Then December 6th 2012 she had a dentist appointment. I somehow got her there and she had to have a filling. By the time we got home she was COMPLETELY GONE! :( She was RAGING and kicking and hitting and angry and wild and screaming and hiding and moving nonstop and wanting to just make it all stop :( She was gone! Couldn't make eye contact. And I couldn't do anything to comfort her. I slipped in to her room and called my BFF and just bawled!!! What was happening to my baby!!??

I told her pediatrician and psychologist about this right away. Pediatrician had no advice or anything to offer. Psychologist is awesome and kept saying "There just HAS to be something MEDICAL going on!!" I kept asking "What is all of this WRITHING AND STRANGE MOVEMENTS???" "HOW DOES THIS RELATE TO OCD?!?!" Plus her pupils were dialated, she would not talk unless you asked her a simple questions and her answers were always very short. She looked terrified and distracted ALL OF THE TIME. The point to all of this history is no one could help us! I finally googled "OCD and MOVEMENTS" and Saving Sammy story popped up. I read just a few sentences and then watched the video of Sammy moving and screamed!!! This is what our DD has!!! How come no one knew about this?!? The very next day I took her to Pediatrician and presented my info - he started off by saying "You know, PANDAS is controversial.." How can anyone dispute the FACTS!!?? A normal 9 year old SUDDENLY DEVELOPS A MYRIAD OF PSYCHIATRIC SYMPTOMS? I did get Dr to prescribe some antibiotics - Keflex for 20 days. By day 11 on KEFLEX DD had a few moments of "clarity." She would seem more present for just a few minutes at a time then she would disappear back into her writhing movements and headstands and hiding and just be "gone." SO I researched like crazy. Found this forum. Pursued IVIg with Dr K.

We are now 11 weeks and 4 days out and she is continuing to improve. After the IVIg the writhing was GONE! The headstands were GONE! And within a few more days the painful "yoga-poses" were gone!! I will stop there but like I said she continues to improve in a stair step manner.

Does anyone out there feel like they are still struggling to get the help they need? Even when it when it seems so obvious AND IVIg helped? I mean, DD had IVIg in Chicago but that is 8 hour drive away. I just can't seem to find one doctor locally who knows how to treat this?! I read Dr T's comments on here as well, but he is halfway across the country as well :( I just want local support and don't know how to go about it?!

((HUGS)) to all!!!

Edited by sosudden
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What state do you live in? I signed up for the pandas resource network and requested their list of treating doctors, they e mailed it to me the next day and I called to get an appt. with one of the dr's. on their list. She is not one of the top pandas specialists and she still had a three month wait but at least she is about 90 miles from me and takes insurance. We are hoping for the best.

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I live in KS. Seems every resource I have checked no Doctor's in KS show up. Are you in the midwest?

 

I live in KS as well. I got a list from a site. I called one of the drs. on the list and she felt like she didn't have enough experience. We went to see another in KS and it was a total flop. He wanted to run a bunch of expensive tests and didn't think my child had PANDAS. Dr.K. thought she was "classic PANDAS". Bottomline we have not had much success in this area.

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I live in KS. Seems every resource I have checked no Doctor's in KS show up. Are you in the midwest?

I live in Mississippi, and believe me I was not expecting there to be any docs on the list from Mississippi, I thought maybe new Orleans or Birmingham Alabama, but I was surprised that there were actually five names listed on the list from here. I decided to start with the ped. Neurologist in Jackson. We will see how it goes. Are you close enough to any big cities that does have a dr. Listed?

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I live in KS. Seems every resource I have checked no Doctor's in KS show up. Are you in the midwest?

I live in Mississippi, and believe me I was not expecting there to be any docs on the list from Mississippi, I thought maybe new Orleans or Birmingham Alabama, but I was surprised that there were actually five names listed on the list from here. I decided to start with the ped. Neurologist in Jackson. We will see how it goes. Are you close enough to any big cities that does have a dr. Listed?

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So sudden you just made me cry. Your situation sounds so much like my ds that it's scary. Back when ds was 7 1/2 ( he just turned 10) . It was August/ sept and he came down with lots of tics and anxiety that went along with it. He would ask when dad will be home and watch the clock and say he is late ( 1 minute) and gk on saying from there that he might be in a car accident. I would constantly reassure him but that didnt work. I started putting paper in front of the clocks so he wouldn't look at the time. Then driving to ccd he would ask who is picking up and are you going to come in ( some parents pull up) what if you get into car accident and are not there. Constantly reassuring someone will bd there. Going to bed at night wanted his pillows a certain way and if I moved one of his CCDs he would want it moved back to where it was. He seemed very depressed. I would take them to the park and he would sit next to me on the bench and didn't want to play. He was 7 and I found that very unusual. He also just found out he is allergic to dogs and a bunch of foods so I though this was to blame. He LOVES DOGS, so his world was crashing. We got home from park and cried in my arms saying its hard to be a kid. We cried together. He looked pale at this time eith bags under eyes. He had phobias and panic anxiety. Was doing headstands and twisting head/neck in weird yoga poses. Was always falling to the floor. Was spinning and moving and getting to the floor. Had raging moments . St one point hit dd outside and when I brought him in hr screamed at the top of his lungs and when he got to his room he said I hate him and that he can't stop being made. We hugged and he just cried. Things have gotten better with diet. I do see some issues occasionally but more mild then before.

Mar

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We live in Colorado and have been to Dr.K twice for ivig for our DD and I will go back to him anytime

all I can say is to save your money with the other drs and save it for Dr K

He knows what he is doing..

even with all of the info out there it is just not getting into the Docs heads

I dont get it..

My DD Doc here in Colo got upset with me because she had not seen my dd in over a year and wanted her to come in for a check up when I got there we started to talk about PANDAS and she was happy that my dd was doing so well but still didnt like her on all of the abxs and I said "well you are not her PANDAS doc so she dont need to see you as much..Dr K is her PANDAS Doc and you are her other doc..

She did not really like the remark but I DONT CARE!!!

So that is how I feel..

I am starting to look at some other Docs in town so we will see how that goes...

Stick with the Doc that will help you

and dont waste time with the ones that wont..

Tracie

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