7upMom

Getting caught back up with everything now, so wanted to give an update on 9 y/o son. IVIG done with Dr K two weeks ago now. Pre-IVIG my sons symptoms were not in wax/wane mode anymore they just seemed continous, he has had PANDAS we are guessing since prob around 2 y/o. Augmentin 875 twice a day pre-ivig seemed to subside the violent rages ( almost flipped to opposite end with bouts of silly insanity-literally) ,and his remaining symptoms were still placing him nonfunctional. It was much smoother than I could have imagined with Dr K's office/staff -I just love that doctor and his nurses could just hug and squeeze them ( : . Luckily, son's mood was pretty good on the days we went. Before IVIG my husband was living in a separate house with our son, away from myself and the other kids and ds could only function for about 2 hours when he was back in the home. ds was sick one day ( nausea and small headache) on day 2 post ivig- no other side effects. We brought him home directly after returning from Chicago so that 'coming back home' would not be a hurdle to overcome. Amazingly- it is now two weeks post ivig and he has done better ( beings he couldn't do longer than 2 hrs before in the home - wow) We are only two weeks out- and have had only 2 rages ( not even restraining ones) , many ups/downs and fits, but also see times of normal age behavior. His down times are MUCH shorter and more controlled. His tics are gone, there are still some motor movements ( chorea type- body constantly in motion but not tic'ing) He is doing one sheet of schoolwork every day ( impossible before) There are some new things we are experiencing right now- nightmares and very scared of his room- wanting to sleep with us or siblings. Overall though, we aren't close to being healed all the way- BUT we see changes and that feels good. Also, we were under the understanding that his sleep center tests were all negative but they contacted us and informed us he does have sleep apnea 4-5 x's / hr. They are recommending tonsillectomy. Dr K says once healing is stabilized ( more towards end of summer) and then contact him for ok , high dose antib before and after. So until he can go thru with t&a , they will be giving him a sleep mask for the apnea. Hopefully this will also help him feel much better! Have been reading up on posts about what other parents experienced and/or recommend when it comes to t&a's. Thank you all for sharing your stories and experiences it is so great to be able to resource information here. Everyone's story is so valuable in helping the next child without even knowing it!!!!

We will pray for your family and son also. That is the one thing that has kept us sane is prayer and faith in God. Dr K was more than willing to work with our local doc on ivig protocol he uses. Our doctor here was willing, but just knew nothing about PANDAS and we have found that Dr K has helped us in more areas than just IVIG so far ( i.e. school , antibiotic, when we put our son in the hospital - he helped us through all of this) there is only so much we could ask for his help on and he is not getting paid for it before we feel like we are taking advantage of him so we decided to go with him in case we were still having problems afterward we were with an expert ( although I am sure he would still help - he cares very deeply about kids) I know he is booking IVIG through May right now- he seems very busy- I think the word is really getting out so much that these docs are getting really busy now. What a hard decision it is for us as parents though always trying to do the best by our children. I second guessed myself so much that too much time went by, but we know now that we are on a good track I will pray for that for your family also !!

Same with us--- the school never saw anything until this last year, he ended up deteriorating to where they saw some glimpses and now he isn't in school at all. When outside "friends/family" visit they would look at us like we were exaggerating or full of it when we would describe him, because he would hold it all in while they were here. Our son is so nonfunctioning now that we have him in a separate house away from me ( it is worse around me -mom) and his siblings, but he does much better ( rage wise ) one on one. I could honestly say right now that at 9 he has gotten to the point with each exacerbation that now he could easily be mentally institutionalized longterm- with schizophr or whatever they would diagnosis him with. I am curious to see how he will be when we go to ivig next week and are around other people- he hasn't been around anyone for over a month now. The "controlling" of the symptoms is why the doctors kept telling us it was a mental health issue this confuses them also except for PANDAS docs - they get it.

We haven't had IVIG yet ( we do it next week for our 9 y/o son) so I don't know about the rages after, but we have rages like you are describing up until this time. My thoughts and prayers are with you- stay strong and just know you will see a better day- I hope you see it soon

could you repost this link, for some reason when clicking on it, states link not found possible wrong address, not sure if its my computer or typo. Thanks

We had daily rages and within a couple days the rages were diminished to just "tempertantrums" huge difference, but ocd,tics,anxiety are all still so high and its been 3 weeks now since we started the augmentin and would technically be considered nonfunctioning still but not having the rages is a good start!

Vickie, What is geographic tongue??

Do abx affect allergies? Our immunologist let my dd's stay on but had to come off all allergy meds. Susan Same here for us, he said antibiotics were fine but no allergy meds. We tested negative but also have the "allergy shiners" he called them but yet no allergies. No idea either what they are from, maybe just worn down systems?

Is her anxiety level high right now that she could be getting hives related to that?

If you do the IVIG are you expecting to have a second one? Maybe one IVIG will bring you enough relief and years to save up in case you ever did need a second? Thats what our thinking is here- we are doing this one paying upfront for it, but are setting up an ivig savings acct ( lol) for a just in case, so we never have to worry about how we are going to pay for it again. Hopefully by that time, insurance companies will be on board or there just won't be a second one ever needed. I hate how insurance companies rule over what doctors say ) :

That would be really frustrating and we are expecting for it not to go easy with the insurance company paying. We also have BC/BS , we have Illinois. Haven't heard the best about BC/BS coming through with payment, but it doesn't hurt to try!! We are paying up front and doing IVIG with Dr K, but just want to try to get a preauth ahead of time. We aren't going to stress about it too much just will be happy to have him better. Dr K is in network for our insurance and so far with everything thats been going on they have paid very well. We thought about going through our doctor here, she offered to help and follow Dr K protocol, but I think there are so many other things Dr K's expertise in Pandas comes in on that we decided he was the best route for us and we didn't want any oopsy's . Just trying to figure out the exact steps of getting a preauth? So you had your employer do it? So your codes with Dr K did not work? were all 3 of your ivig's with Dr K?

What are the steps in getting insurance preapproval when requesting IVIG? I know you need the codes, but do you just call the insurance company up saying you need a preapproval for a procedure? How long have other people seen this take from their insurance companies? Do they immediately give you an answer , or does it take weeks? Do they expect something in writing? Just trying to figure out what our steps are, we are headed to IVIG in a little over 2 weeks, so very happy , but if we can later get reimbursed back that would be good. So would like to try to do a preapprov ahead of time

Thats an interesting thought! We have a UV light on our furnace which helps kill the bacteria in our house so it doesn't keep recirculating it around. We saw a HUGE difference after having this installed in how much everyone was getting sick. I could def see the thinking with this possibly recirc into the air.

My 9 y/o son also sleeps a lot ( bed at 8 and wake at 10-noon) , he would fall asleep during school also on school days and come home and take a nap. Had him into sleep doctor and she said this is very common for tourette syndrome. She thought maybe with the relation of the tics and pandas this was also causing sleep issues. Although he does take clonidine ( only at night, not in am) but this has never really affected HOW much he sleeps but when he falls asleep- just made it so he isn't staying up till 1 am and sleeping till 3 in afternooon. The sleep clinic is continuing to follow him but they can't quite put their finger on it, I think he is just mentally and physically exhausted and prob depressed some.

This is beautiful and such a nice thing to read in the morning with a strong cup of coffee!! Thank you Vickie for posting this - and everyone here you all are my rock in so many ways!!

Fixit: this makes sense and I completely agree with trying to look at it with an openmind cause I know I can get worried and anxious really easy about where my son is at in terms of this , but DCMOM- not sure about you but with my 9 y/o it is def different its not the normal transitional thing- I say this out of 1) having 7 kids and I know they are all completely different even the twins in every way possible and 2) there is just something not normal ( whatever normal is lol) or ok about it with him. It is very noticable by everyone in the family also even the 6 y/o's before pandas we were thinking about some type of autism he could possibly be presenting with

Good question - looks like there are two foundations currently - Pandas Foundation and Pandas Resource Network - I will talk to both and Dr. K - as well as some of my peers ...I've looked at both sites - PF and PRN - I will then contact both foundations and learn more about what their plans are for the funds donated... Currently I know that PF has the "Got Strep" campaign and has begun distributing 50,000 informational cards to doctors offices and clinics regarding Pandas - the object is to "inform" and children diagnosed sooner ...this was PF's first task which is already underway. I've read that PRN - donations with be linked intially to research projects - for the study of Pandas both would be good - I am personally interested in seeing the foundations - help the families that are active in the disease - relief efforts I like this!!! I have wondered what would we have done had we not been able to refinance? I would be very interested in helping to raise money for families that don't have those things available to them for whatever reason. Count me in, pm me anytime with anything I can do , I know my 17 y/o daughter has been designing some t-shirt designs for locally here just to get the word out and she was thinking about selling them to help raise money for families that couldn't afford treatments. So maybe we could go forward with that if we could find a place to put that money and someone to coordinate that?? I just can't do that part of it right now. Even if we all did small efforts like that, I think it would really add up!!

My 17 y/o daughter and I were just discussing this on my 9 y/o son. His play and emotion behaviors are around 5 y/o , it really concerns everyone here it is getting worse and worse. The rages have diminished HUGELY but this regression really worries me also. My older son is 16 so I know what a 9 y/o normal behavior is and we aren't even close here.

My son 9 y/o has had high lymphocyctes whenever they run bloodwork on him, I have no idea why, he does not have low WBC everytime though, but have found wbc in stool samples which is not common. Took stools in a couple times because there was blood in his stools he has had a lot of constipation/diarrhea issues. Have an update immunology appt next week they did a full workup on him so we are curious to see how these numbers turned out on him.

I am pretty much guessing that( the uri) , it started on Thursday and yep thats when he started having some small behavioral fits again. He has had upper resp's about every 2-3 months since he was 1. So I can recognize it pretty easy since he's had so many, although my husband , who's with him today, said he is sickwise much better today and also even "fit" wise, in a great mood. The regressive behaviors and ocd and tics are all still there but not the anger. So wow, this is really going hand in hand for him- I am wondering if the augmentin held off that sick and its swinging to the better side again???? Now my husband and I are both sick also, I barely have a voice today, am just waiting for the doc here to call back with time for the whole family to come in.

sorry- upper respiratory infection

Although we are rollercoaster'y here- when my son went off the lexapro and abilify a part of his personality came back that we had almost forgotten about. He told us that he felt like a groggy fog was gone and his head felt more clear.

They aren't as severe or violent as before, so def hoping it is not progressing to that again. I am at a separate house today ( thought this would be better for my husband to take care of him for the day- he can get more violent with me) but I am def going to be making a phone call to the dr to check everyone. He did have an uri starting so I wonder if it is a small reaction to that? Hopefully the augmenten will keep that under control and like you said just make it a bump in the road.

I agree also, I think its also good to include a happy ending from abx/steroids as well, it is part of it just as much!

Well, it was worth a shot to find out if it worked that way or not. The explanation of the low dose for the diagnostic tool and the high dose for treatment makes sense though, I guess I never thought of them being different doses, so that explains that mystery. We are back to rages again tonight, very odd behaviors throughout the day also ) : , emotional regression is prob that of a 4-5 y/o- this is all just very confusing and frustrating.