Thursday, May 06, 2010

Sweet Pea, PANDAS, and Prayer.

I haven't blogged about this, mostly because I haven't been really blogging about anything.
But for the last 15 months there has been some sort of change in Sweet Pea.. Right around the same time she caught Mono last Jan/Feb... things have been bugging her.. Stuff like blankets touching her, socks and clothing.. she says they are too tight even when they are clearly not.. I didn't think anything of it at 1st because she was extremely sick at the onset of this.. we are talking 103.5 fever for weeks.. The fever 1st started on Jan 9, 2009 and then went away, came back on the 19th and then went away.. Came back on Jan 24, 2009 and never went away.. she was in an out of the doctors though out this time.. and on Feb 3, 2009 the mono test came back saying she had mono and she was sick for a very long time after that.. I'm talking the sickest I have ever seen any of my children.. I don't remember all the dates but around this same time she also tested positive for strep throat which in the grand scream of things seem like nothing given how sick the mono was making her.. she ended up missing over 30 days of school and sleeping all day long, even after getting back to school she would come home just totally worn down..
She still to this point has not got back to the child she was before getting sick energy wise and in other ways.. Such as she seems to be much more clingy at times and this whole cloths and stuff hurting her thing.
For a good long time I over looked it, marked it up to her not feeling well, and then I thought maybe it just became a habit for her to think they hurt her.. It got to the point where it seemed like we would have ups and downs.. sometimes she didn't complain at all and she was perfectly happy with her cloths.. then boom out of nowhere they would all be hurting her again.. she would fight and cry trying to explain to me how much it hurt her and how tight they were and I would battle back no they aren't.. your going to wear them.. she would listen but pull at them crying and crying and trying to tug at them to make them bigger.. It all just seemed crazy to me..
I tried yelling, punishing, even bribing her... nothing seemed to work..
We all sort of marked it up to something that was brought on by the Mono well the Epstein Barr virus that will forever remain part of her..
But the weird thing about this was sometimes she would be ok then out of the blue boom it would all start up again..
Sometime around November 2009 and December 2009 things started to get worse and worse and worse.. they would start to get better and then get worse again..
In March it got to the point I felt I needed to see a doctor since this wasn't going away.
So at the end of March 2010 right before Easter I took her in.. Doctor told me it has nothing to do with the Mono and that he thought she needed a Psychiatrist. They were going to get a referral going for that.. I never really bought into that... I was thinking some sort of sensory problem which was brought on by the Mono or from how sick she was the last year. The Doctor was thinking it was some sort of OCD or conversion disorder.. I never really could buy into that because she had be perfectly fine up until she got really really sick in January/February 2009.. Sure she has always been a shy child.. but she seemed to have out grown that alot to the point of being sort of out going a leader of her friends always wanting them over for sleep overs or her going to there house.. UNTIL she got sick then she went though two different times where she didn't want to leave my side.. One was shortly after she got sick and then she started staying with friends again.. until June 2009 when she went though a phase I couldn't understand.. She was totally afraid to be out after dark.. even if I was with her.. if it got dark out she wanted to be in the house sitting right next to me and we couldn't even have the windows open.. it was weird.. and while she wanted to go to her friends houses though the day.. she didn't want to spend the night.. This went on for about 3 or 4 months.. but now she is back to being perfectly happy spending the night places and seeing it dark outside.. but this clothing thing has got really really bad.

We went to TN over spring break and everything seem to be doing alot better.. no issues with cloths no melt downs or anything like that..
Then two weeks ago it all started happening again.. only worse.. so much worse.. Normally if I just let her wear what she thought fit(normally 2 to 3 sizes too big) the world was happy for her.. but with this last onset of it she couldn't even get comfy naked.. hugs hurt her, laying naked in bed hurt her the sheets hurt the pillows hurt leaning back on the couch or chair hurt..
We were up all night with her listening to her cry and cry and crying sitting up arms wrapped around her knees in the middle of the bed or floor because everything was hurting her..
The 1st night this happened I called the doctor and demanded that they get me the script to see OT at the hospital for sensory issues.. and he asked about the Psychiatrist I told him no one got back to me about it.. I told him I'm willing to take her if he is willing to let us try OT also..So he said fine.. She got placed on the waiting list at the hospital for OT.. and he got on the ball about the Psychiatrist.. turns out there is waiting list for them also.. So they want you to go though counsellors and if they think you need the Psychiatrist then they will put you in with one.. but we got the ball rolling with the Counselling people.. This was all done on April 21, 2010
During the next few days she had issues every morning and every evening.. most of the time I could get her to sleep and off to school... But on Tuesday April 27,2010 things were so bad I couldn't get her to stop crying and having a major melt down about the cloths.. that she ended up not going to school that day.. Tuesday night was awful also.. she couldn't get comfy no matter what.. she just cried and cried and cried that everything was killing her and why is this happening.. But Wednesday morning I let her put on one of the two shirts that have never hurt her when wearing and she went to school in baggie shorts and this silky tank top even though it was only in the 60's. But Wednesday night she came home with a high fever again.. Wednesday e didn't have trouble with sleeping because the fever had knocked her out.. So we all got a good night sleep..
Thursday I called up the school to tell them she wouldn't be in and they told me they have strep running though the school so I might want to get her tested so I called the doctor and got an appointment.
30 minutes before the appointment I had her get dressed which started a major episode.. she cried and bagged to take her shirt off and wear the tank but it was so dirty and the minute she took it off I placed it into cold water.. so she couldn't wear it.. and we couldn't find the other shirt like that just in a different color.. so she had to wear something different.. and it was hurting her .. she cried and cried and screamed and yelled and was pulling and tugging on the shirt.. not only at home but the whole trip to the doctors, in the office, during the visit.. everyone thought I was bring her in because she was hurt.. I had to tell both the nurse and the doctor we saw that day(her doctor wasn't in) that no.. but I am seeing her doctor for this but she is in today because of fever and sore throat.. It took 4 of us to hold her down pry open her mouth to get the strep test.. sure enough it came back positive for strep...
Sweet Pea continued to scream "It's killing me" and "I can't take this" all the while biting at tearing and ripping at her shirt.. even after the appointment was over.. while walking to the car in the middle of the parking lot she ripped her shirt off over her head.. I said to her that people were going to see her and she blurted out in a scream that didn't even sound like her "I DON"T CARE" once in the car I gave her my sweeter to cover over herself and she continued to cry on the way home and while getting her perscription for amoxicillin.
30 minutes after the A/B was in her all the crying stopped.. and she was back to a happy little girl.. she still didn't want to wear a shirt for the rest of the day just stayed hidden under a blanket.. The next morning she woke up and seemed like my little Sweet Pea again.. wore normal(well normal for her cloths) didn't complain about them hurting her or anything...
That 1st dose of antibiotics was on April 29,2010 and we haven't had any issues like that day since.. No crying at night or in the morning ..beyond the normal her thinking cloths are too tight.. but she can find something she is happy with she isn't hurting just being in her own skin anymore.
ON Friday April 30,2010 she had an allergic reaction to the amoxicillin so on Saturday May 1, 2010 they changed her to Duricef and are now saying she is allergic to penicillin.
That Friday night though when I called the after hours line to explain the rash to the doctor.. It was her Doctor(Dr. T.) who was on call... He talked with me for close to an hour on the phone.. Doctors just don't do that..
I guess after we left the office on Thursday the doctor we saw called Dr T. to explain what was going on with Sweet Pea how she was acting and everything(because I told them that I have Told Dr T about this but he has never saw it).. They also told DrT. that she has strep throat..

This got Dr T. thinking and researching and he said he thinks he knows what is going on with Sweet Pea.. It is something called PANDAS. He said "you said all of this started around the time she got the Mono, well right around that same time she also had strep throat" and then he pointed out that the times I have mentioned to him the clothing issue and the clingy-ness and fear of the dark and all... Were all right around other times she had been sick with strep and or ear infections(that could have been strep also but once they saw the ears were bad they didn't test for strep) The explained to me what PANDAS is and what it does..
PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The term is used to describe a subset of children who have Obsessive Compulsive Disorder (OCD) and/or tic disorders such as Tourette's Syndrome, and in whom symptoms worsen following strep. infections such as "Strep throat" and Scarlet Fever.

The children usually have dramatic, "overnight" onset of symptoms, including motor or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody, irritable or show concerns about separating from parents or loved ones. This abrupt onset is generally preceeded by a Strep. throat infection.

We have to do a few different things for treatment for this.. one is still see the councillor because Dr T says he really does need the Psychiatrist and maybe a neurologist help with this.. and medically.. we need to keep Sweet Pea from getting anymore strep infections.. which isn't going to be easy.. But with each on set of Strep more antibodies are being made and those antibodies attack her brain and each time it gets worse.. meaning if she get sick again there is a chance her brain may not recover 100% or that she could be left permanently in that state. WE CAN NOT let that happen.. So we are doing prophylactic antibiotics with her, she will be taking the antibiotics everyday. in hopes that it will keep her from not getting sick..
this is the first step and where we are at treating this at this time... We saw Dr T and talked about all of this with him and what it all meant this past Tuesday May 4,2010
She goes to see the councillor on May 17, 2010 and we go back to see her doctor on May 24, 2010
and the OT at the hospital called yesterday and they can't see her till July 1,2010.. by then I should have a better understanding if she will even need to go that route or not..
In the mean time I'm going to be keeping a journal of how things are going to help get a better Idea of all of this..
BUT most importantly.. Sweet Pea's needs your prayers.. So please add her to your prayer list..
I will keep you all posted..


Fantastagirl said...

oh wow... you have your plate full! I hope that she feels better soon! Many hugs and prayers to you!

Rachel said...

Oh dear sweet girl! I'm so sorry but praise God you are getting some answers! We'll be praying.

Courtney said...

Omgoodness, poor little thing...she is in my prayers & hope it gets better soon....I think Callee is OCD with her skirts, dresses is getting out of control.