qannie47

I know how you feel. I went from elated that my ds was going to get the miracle IVIG to stressed about, "what if it does not work?". My advice, there is no point in putting your energy into what you don't know at the moment, or have any control over anyway.....let that go. Embrace your faith that something good is going to come of this. Put your energy into the positive, Best of luck!!!

What a disappointment with the doc.....regarding the headache, what have you tried so far for relief?

I have often thought the same thing when I have looked at pictures of my son post Pandas.....caught on film.

what is the treatment for lyme? I mean is there one? I have not tested yet, plan to, but isn't abx the treatment for it? Yet, it seems so chronic for anybody whom Is diagnosed with it...

Ds did well. He is in room and resting. No complications.

Prayers appreciated! Thanks, q

My ds is having his Tonsils out Dec. 30th. When meeting the surgeon, I was pleasantly surprised at her openness to Pandas. She stated that she was going to research this more so that my ds has the best outcome, (minimize exacerbation), from surgery. She got it right away! Anyway, I walked away pleased, but not sure if it was just lip service. Then today, I received phone calls from surgeons office AND hospital surgical scheduling nurse, both were mainly focusing on his PANDAS! They both asked some great questions, and it was clear that everybody was on board and taking Pandas seriously....! This is what they came up with. IV Steroid post or during surgery (cant remember which) IV Ampicillin before or after surgery (again cant remember) I am tired. ABX 14 days post surgery One night stay after surgery to make sure he is okay.... Aside from being thrilled about hospital not rolling their eyes....How does this approach sound to all of you?

I would call patient relations and nicely put in a complaint....I did that and got a full on apology...they said no matter how a child is acting, these nurses are all professionals and children should be treated with compassion, not judgement. She called a meeting within 2 hours with the nurse and floor manager. I felt better for myself and son....

Thanks everybody....this all puts my mind at ease a little bit. I am going to test for lyme with next blood draw, that should be interesting. ds was diagnosed at age 5 with hyp0-sensory, so maybe that is the way he articulates....I just don't like what he says about not being able to move his hands sometimes...I will keep an eye on that...I wonder if he is just sleeping on it and it is falling asleep. He gets his tonsils out dec 30th....wish us luck!

So, this tingly, electric feeling that my ds reports could be him now being old enough to articulate what his sensory issues feel like? He was diagnosed Hypo-sensory when he was five. I hope so. I like the couch pillow idea...makes sense. Thanks.

Since he has a history of bad headache with IVIG, can you set up a protocol to administer some prednisone before the headaches start happening. It seems reasonable to me that this approach would make good sense....

Rowingmom: Interestingly enough, when contemplating lyme, my mind always goes back to about 4 years ago when I noticed a golf sized mosquito bite on my ds's back. He had a history of getting rather inflamed mosquito bites so I was not really concerned, but this one really stood out. It did go away pretty quickly, but what I realized when recently contemplating this was that around that time was when I started experiencing a rather debilitating fatigue. I mean bad. This came and went for about 2 years and I chalked it up to caring for two high energy boys and no help from hubby plus low on vit d. I experienced high joint pain ever since then and still do at times. That fatigue is non existant for the last 2 years....mysteriously went away as quickly as it started. Also, my ds's joint pain behind his knee started around the same time after that odd bite....I wonder more now then ever what his lyme tests will reveal when I have them done......

rowingmom: I will ask him...except he does the movements over and over, there does not seem to be relief for him. However, it is the joint compression that seems to give him relief...does that make any sense to you? Powow: in his first episode he looked very SC...big rhythmic movements..these new movements are more quick herky jerky...karate chops and leg kicks and throwing himself into walls, couches... Vbakersmon: Thanks. Testing for lyme was next on my list when another blood draw was taken... This was helpful, thanks guys....maybe I will sleep tonight.

This is freaking me out. When my ds's spinal revealed 2 O bands, I was reassured by my Ped's doc that it was not MS because he had no brain lesions on MRI and his protein levels were borderline low and not high...He also said that I can put this to rest about worrying about this in the future. Now I have delbt with doctors long enough to know that they will say things like that to alleviate worry when nothing can be forcasted about the future. However, I truly trust this doc and he has never let me down. Then, about a week ago, with those concerns still lingering in my brain, I asked my ds a question when he was displaying those motoric movements that crop up when flaring and sometimes between flairs...I asked him, "Do you move around like that for a reason? Do your arms or legs feel funny that you do this?". He answered right away, "Yes, they feel all tingly". Being that he is only 8, it was hard to get him to quantify this as far al how long this has been going on, but from our conversation, it has been awhile. Then, 2 nights ago, he came up to me and asked, "Mom, do you ever lose control of your hand?". A chill up my spin, and did not answer his question directly, but instead I asked, "Why, do you?". He said yes and went on to explain that sometimes for a moment he feels like he cant move it and then it feels like somebody is squeezing his had real hard. Really? I mean really??? I don't know how much more worry my shoulders can carry... Have any of you heard of this? Growing pains? Side effects to abx? He is on Lipoic acid, biotin, vit c, mutltiple, fish oil. That's about it....

Peglem, you have a lot of courage. I am proud of you.

My situation is exactly like the move "The Break-up" with Jennifer Anniston, except with kids....He is his duplicate in everyway if anybody ever saw that move. ugh.........

I am glad that your dd is doing so well with the move. I must say, what a nice surprise for you and her! I find this interesting, especially because I have put off leaving my husband because I have been afraid of how my twins would handle the adjustment. My dh might have been an ok dad if his kids were not special needs. But he cant handle it. Hid day in and day out negativity, and refusal to participate in any behavior mod program to the extent of even mocking and sabotaging them is difficult. I have told myself that the kids love him, they don't know anything different, and there is that fine line where he is not good for them in many ways, but they love him. Stuck..............

What is a spect? Can they give her a sedative? As long as you are there, I would try to get it all done now. Surely this is not the first time the hospital has had an out of control child...what do they say?

What wonderful news!!! Merry Christmas!

What about the strep tests that you can order online? Somebody posted a link in this forum.

come to think of it, when I was trying to get pregnant, I was Strep B positive. I always wondered if I had been completely cleared because after birth, I had it 2 more times....hmmm

Today I hosted a Christmas party at school for 26 typical 8yr kids. They were all excited, on sugar highs, and bouncing off their chairs. The other 2 moms who were helping did not have a clue on what to do. They stood back and watched me handle the whole thing. As far as I am concerned, 26 typical 8yr olds are a piece of cake compared to ONE out of control pandas child. I'm serious. So Kuddos to all of you!

Great! I suggest we write these names down on a piece of paper and keep them handy by your bedside or where ever you would most likely have a moment of silence. I am going to nightly ask for a protective energy to surround all of us to provide restoration, strength, discernment, patience, faith, and continued good heath for those who have started the healing process.

I believe in prayer, and I believe in numbers...even if you don't ascribe to a higher being, I believe that thoughts have energy. What you send out comes back. For the negative and the positive. I essentially believe that is how prayer was designed to work. So my thought is that we could create a list of names. Every night we could all commit to saying a quick prayer for each of our children every night. I know anonymity is important here, so we could use our names that we use here in the forum. I will start by adding my name to the list. qannie and ds

I think also, that while there may be a universal trigger that has yet to be identified each child is unique in their own way and each probably have their own set of physical set of variables that play a role.....