tantrums

Oh I DO plan on going to them and I did take the appt. for feb. 25th. Just wondering if I should call every day and harrass them until they get him in sooner, or try other places. The immunologist recommended CHOP or I'd just go to Dr. T. It's sadly all very complicated right now due to my surgery. If it were at all elective, I'd put it off longer, but quite honestly, I just can't do it!! If I can get out of at least some of this pain and be able to move around more, I'll be better able to take care of him.

I'm finding this eye thing SO interesting! My DS eyes look just like that underneath. It was something the immunologist was always commenting on, that he had "allergic shiners" yet through all allergy testing, she could never find one thing he is allergic to. Poor kid had the whole gammut of allergy testing too. She was really floored by this, has never dealt with PANDAS before in person, but seems to know a bit about it. Even she, who had little contact with my son before, seems to understand how all of these puzzle pieces of his past suddenly came together in the past couple of months - they shiners, the chronic croup, the sleep disturbances and what we're dealing with now. I would imagine it IS hard to get a good photo of the eyes with the flash issue. But I'm certainly going to be looking now when he's in different modes to see what his eyes look like.

What does dilated eyes mean? I mean I KNOW physically what it means, but what does it mean if they are dilated in our kids?

Both of my sons current doctors, who are learning about this as they go too - briefly mentioned the steroid bursts. He had chronic croup as a infant and up until PANDAS began. PLEASE can I have the croup back? So we are very well versed in the steroids here. In fact, as his adult teeth grow in, we are finding them all discolored from so much orapred when he was just 1! When he was on steroids before, usually a 5 day course, we'd call him "steroid boy" - totally off the wall. At that time, it was the only time he acted like that. Now that irrational, raging behavior is becoming his normal, I am very scared to consider giving him steroids. How has that worked for others?

So I've spent nearly a week harassing the peds neurologist here to get my son in. The way the hospital system here works, the specialists need records and contact from your primary doctor first before scheduling. Normally, this is probably a good thing since it does weed out unecessary time for them if someone doesn't need them. But in this case, I was annoyed since there wasn't much for the ped to send them. Well, the ped contacted them as well as the immunologist. Remember, I also (selfishly I feel at this point) am having major surgery on January 11th which has already been delayed several times and I'm barely functioning at this point. I won't be able to drive and for the first few weeks - even be a passenger in the car. I won't send my son to a new doctor without being there. So after the ped called them and sent a letter and the immunologist did, they called me today. Actually sounding quite interested in the "little boy with PANDAS" and saying the doctor wanted him to have the next available appt. Well, that isn't until Februrary 25th! He is on the top of the cancellation list. But really, the ped is totally working with us as is the immunologist. We have the abx and the MRI is being scheduled. I'm seeing some improvement after a week of ABX, but it is up and down - no tics though for several days. I'm thinking at this point - do I NEED the neurologist? The ped is clearly going out of her way to research this, contact the immunologist (who is also researching a bit as she goes along) and making sure we have whatever we could need and giving me anything I ask for. What else would the neurologist do? I still plan on going, no doubt about it, but is it worth just looking elsewhere? I do like this hospital system as the communication is very very good between all of the doctors.

Very pretty girls

Oh Joan - let us know when you get the difinitive results! Between my back and my head I could probably BE a radiologist myself I've learned what MOST of the terminology is and what I don't know, I know how to find it. Again, it stinks that I've had to learn so much for myself, but in a way, I'm thankful now because I know how to navigate so much and will help me shorten the time it takes to do so for my son with his similarly "unusual" (although I'm really thinking this is SO much more "usual" than anyone thinks!) condition. I am so totally counting my blessings here. Dont' get me wrong. I'm on the verge of tears tonight. Mostly out of relief honestly. I do honestly realize how very lucky I am to have this diagnosis so quickly. The ped and I had discussed an MRI for him to rule in/out Chiari a while ago and decided it wasn't worth it to put him through it as he was escalating with his health worries. It's obviously necessary now and I know it needs to be done. I've probably paid for that machine (or my health insurance has) so at least I'm comfortable to some extent with the process - just different when it's your six year old. I guess i just could've lived without any mention of frontal lobe today. But yes - I will NOT Google! I repeat - I will NOT Google!!

The rapid came back negative and I was honestly expecting the culture to as well. I have NO idea when he had strep! He's on amoxicillin 400mg 2x a day. I realize I am very very lucky that these doctors have been so great!

I'm sorry, I'm too new to this myself to have any advice. But I wanted to lend some moral support and hope it gets better soon for you!

Wow! Literally as I hit post - my pediatrician called. Strep culture was positive. She will write orders for MRI and ASO and will write me the ABX for as long as we need.

So initially I thought I was very lucky today. I had my son at the immunologist. Honestly, I didn't even realize she IS an immunologist, just his regular allergist - DUH! She is wonderful!! I'd given a list of what is going on to the nurse to have the doctor read before she came in. She walked in with a shocked look on her face and asked me "Has anyone suggested PANDAS to you?!" Well yes thank you She spent a very long time with us and is going to contact the neuro to insist they seem him right away. Also contact the pediatrician to have her order an MRI and ASO titers. Since he'll have to be put under for the MRI, she wants the ped to order it. But I'm sitting here now realizing she mentioned a concern as well for his frontal lobe and that is her primary reason for the immediate need for an MRI. I did a quick Google and got myself out of there fast. Quite honestly - I am exhausted after a very bad weekend with him and I NEED to sleep tonight!! I did see some similarities to my son. I also checked his bookbag tonight to find a note from his teacher that it was a VERY bad day and he in fact tried to BITE another child! HE IS SIX!!! I'm beyond MORTIFIED here! He just seems to be getting so much worse every day! Tonight, he is good so far except for the obsessive drawing thing. Hasn't mentioned that he can't ummm... "find" his crayond - he's just using pens. But his mood is pleasant at least. I dont' even know what to say to him about the biting!! Obviously, we did adress it and took away all computer games, but I don't know what to do beyond that. anyway - I digress... Has anyone else had a frontal lobe issue, or more specifically tumor (which she didn't say specifically) mentioned? She did also order the abx to continue until all testing is done and the neuro sees him I do have to say - I consider myself VERY lucky that the first two doctors I went to immediately acknowledged this problem and reckognized PANDAS. The major hurdle seems behind us at least. Just have to continue to navigate from there. I'm sitting with Dr. T's number in front of me... He's only 2 hours from me, but I"m going to be out of work for 6 months after my surgery and I really don't know how I can afford it. I know he said he won't turn away for basis to pay, but if you just look at my salary, I can surely afford to pay.

One thing I started doing right away was writing the lists of my sons symptoms and giving them to the nurse to give to the doctor before she comes in. As most of his appointments have been late afternoon and my DH hasn't been able to go with me, he is in the room with me and I feel it would be awful to go over it all in front of him. I think it also drives home the point that this child is in a very bad place and discussing these things is very difficult as it will only feed into some of the issues themselves. So far, it's been very helpful. In fact, I was just working on one for our allergist appointment tomorrow. I may be new to PANDAS, but I sure learned after suffering Chiari for so many years - get your own copies of all test results (or your childs of course), make multiple copies so you have them on hand to share and have them organized and ready to go with you to appointments. Unfortunately or fortunately, depending on how you look at it, I've fought the Chiari fight for lots of years. It's very similar to PANDAS in that many doctors either don't know about it, don't believe in it or think one has to be completely incapacitated for it to count at all. I am glad that I have learned to prepare and advocate myself so that I can do so more efficiently now for my son.

Sad really. Isn't it? And that only means once he gets INTO bed... 6 hours until he's asleep

Well it helps to know I'm not alone here! My DH was distracting him with board games for quite a while while I was downstairs (we have a bilevel home). He then came down and joined me - paper and crayons in tow. I was busy ironing dresses and taking pictures for ebay. I actually put him to work looking for any flaws - he came in handy there! LOL! But man! I wasn't even all the way up the stairs when I was done when the paper was thrust in my face! I've already tried delaying and limiting, which I do stick to. But it doesn't stop the constant asking and whining for it. Right now he is on superheros. Then it will be different people for a while (rock stars, indians, etc...) then pokemon. To make matters worse today, my mom was going to come take him Christmas shopping for the day and it was too icy. He did NOT handle that disappointment well. At 6, any kid would have a hard time with that. I shouldn't have told him she was coming but hadn't thought to check the weather forcast. Four hours till bedtime...

All weekend, my DS, who is 6 has been NON STOP wanting me to draw things for him. It's quite honestly making me absolutely bonkers. The requests are constant - I can't get a break. I keep telling him I will do ONE later - say after lunch. I tell him I'll do one and he says "no do THREE". As I'm doing one - he says "just two more PULEEEEEZE~!!!!!". This has been something he has gone through in the past and even then, I never quite knew how to handle it. This weekend is more pronounced then it's ever been. The picture just get thrown out - except one which he insisted we tape on the ceiling over his bed to protect him when he sleeps. Any advice on how to handle this one would be greatly appreciated! I'm guessing throwing the crayons out the window would not be the route to go although that is exactly the urge I've been feeling since about noon yesterday! It's icy and nasty out so no getting out of the house to get away from it to distract him.

Well then, if you weren't expecting any reimbursement and your insurance will give you the in network cost that they would pay - then that is fabulous!!

Just be careful that you know all of the details. I was SO excited to hear my insurance BCBS tell me that they would pay for me to go to the Chiari Institute in Long Island after I called several times and demanded they pay for someone who would treat me. Then after a second call, another rep explained to me that they would pay in network rate IF the doctor would call them and request to be considered in network for this case. They will do this if there is a condition which requires specialty care that no one else in your area can treat. BUT - if the doctor you want to see won't accept the in network rate (and in doing so they cannot bill for the difference) you are out of luck TCI wouldn't accept that for me. I found another NS who will treat my Chiari but also doesn't accept ANY insurance. I haven't broached this subject with him yet - although he MAY be more willing since he also does a lot of charity work. If a specialist isn't accepting insurance at all, in the case of many specialists nowadays - apparently mostly neurologists - then the idea of them having to do EXTRA paperwork and phone calls so that they can accept a lower rate... Doesn't sound likely I don't mean to come here and burst your bubble. I really DO hope it's different for you! But I learned the hard way after getting very excited, making myself an appointment at TCI and hours on the phone.

Oh don't worry! I'm not giving up hope yet. It's only been a few days. Overall today, I have to say I still do see some improvement. But he's wacky! Like alternating between the OCD, hyperactive whiny stuff and then moments of just pure happiness and peaceful. I'm thinking the abx is working, just will be a little more time. I was actually afraid to say it out loud (or type it) last night and I guess I shouldn't have

Well I think I may have jumped the gun a bit. Today is not looking as rosey as last night. Still some overall improvement, but whiney as all get out and obsessively coloring and wanting ME to do the figures for him because his aren't right. Dang it!! I shouldn't have let myself get my hopes up so much so quickly. It was still SOOOO nice last night to see him as he used to be and gives me hope overall.

The ped gave us three weeks of amoxicillin. She didn't feel qualified to go beyond that at this point and wants us to get into the neuro. The neuros office is being a PITA though. Its the hospital system here that they want the records of the referring doctor before they'll give you an appt. I guess to prioritize. It's good when you need to get in but frustrating when I wanted that appointment made today! I called the peds office today and they said they would call them and insist. I didn't get a call back yet We also have his allergist on monday and she is wonderful! I really feel that she will help us as well. She's been baffled by him for a long time - his "allergic croup" that didn't respond to anything and she cannot find a THING he's allergic too. She always felt something else was going on. This was before all of these symptoms. So I think she'll be very interested in this. He has had a couple of "close calls" tonight to melt down, but honestly, I think that's just more age appropriate frustration and I'm hyper sensitive to it. He is still SO MUCH better I'm in awe here! He did ask me a few minutes ago though "will I survive tonight Mommy?"

I was hoping there WAS one in this topic Things may have changed, but I worked for CPS a while ago. At the time I had several cases of kids who had missed a lot of school and they were called in as neglect referrals. All three that I had turned into nothing because there was no such thing as educational neglect. Being the dumb childless 22 year old that I was (and I have since decided no one who does not have kids should be allowed to do that job! I was SOOO clueless!), I actually told the one school principle who was really pushing it, that they should file charges on the mom. That child was about 7 and had asthma problems. Again, being clueless I felt it was the parents responsibility to get the child to school at that age. I was told by three different elementary schools that they do not persue truancy charges at the elementary school level, only at middle and high school. I felt that was silly since wouldn't parents have less control over it when the kids are older? But again - that was 15 years ago and in NJ. States may be different and in 15 years laws may have changed. The one case that I referenced though - the child had missed like 75% of the school year. And what I learned was there was NO legal ramification at all. But yes, the school sent notices every day. And since I mentioned the CPS aspect of it - keep your medical records parents just in case you get some school official that tries to go that route on you

Maybe it will help me quit smoking! (disclaimer ONLY outside and I even change my shirt every time I come back inside the house and wash my hands). That's been WAY up in me since this has started

WOW!!! Fingers are SOOO crossed! I've used the inhaled steroids in the nebulizer bc he has had the barky cough on and off. I wonder if those help as much as the oral. They never did much for the croup.

Those books sound fantastic! I'm going to look for them and get them tonight. As for allowing it - I know. I do. I guess we're trying to "pick our battles?". We've just gotten to this place of learning how to keep him from escalating and we're getting pretty good at it to some extent. HOwever, I certainly do worry about allowing it to expand and get worse when we allow it

My son has only been on antibiotics for two days. Granted, compared to other cases I have been reading, his PANDAS is pretty mild. But since I picked him up today, he has been SUPER pleasant, helpful, even downright chipper! We've had other "good days" in the past, but good day only meant no major meltdown. This is beyond good day IMO! Is it possible to see a difference this quickly??