tantrums

Oh we've also seen Dr. T actually. Our ped is being great, our immunologist (had been seeing her just for croup for a couple years and she turned out to be GREAT with this as well!) and have appointments at CHOP and Bristol Myers Squibb in the next few months. Starting to wonder if it's overkill at this point

In December, when DS was first diagnosed, his doctor recommended we see a developmental pediatrician. This one is supposed to be very good - out of Good Shepherd in case anyone in PA knows of them. I JUST got the appointment - had to receive, fill in a book of forms and wait for them to review them first. It is a whole year away. I don't know. It seems silly to me. There were no developmental concerns for DS prior to PANDAS. He just had a full child study team eval and they found above average intelligence, no need for OT (although a sensory defensiveness the psych discovered brings that to question) and he will be getting a 504. I was debating looking elsewhere to see if I can just get an appointment sooner with a different dev. pediatrician since he is currently in full exasperation and the pandas is the issue, rather than wait a year. He is already 7. Does anyone have an opinion on if this is even helpful?

I think it's at 10pm EST. It's Mystery Diagnosis

Meant to add - if DSS is involved and the mentioned services are recommended, that means THEY pay for them, so no - not all bad I know in the state I worked in, parents can call themselves and ask for that type of help. Might not hurt yourself to look into what may be available - check the state dept of human services website and see if you can find the info.

Being "worried" that someone may get hurt - especially the parents rather than the child - isn't even a valid referral to DSS. Like I said, i was there a long time ago and a lot has changed. 10 years ago, we would not have even taken that investigation. Now, I do know they have different agencies that offer assistance in such situations - this would NOT be an investigation against you. It's a totally different issue. If help is what the counselor was suggesting, that may not be all bad. But seriously, the way he went about it, I'd never go back. Saying something that 99% of the population considers threatening in front of the child is out of line!

I do believe we were VERY lucky. The school psychologist who did this eval was covering for another who was out on maternity leave. This psych actually has a child badly affected by strep and is very familiar with pandas. Imagine that luck! The people who were working on his specialized reading team were pretty clueless (one said he is just a bit immature and will learn, but was harshly corrected by the psych before I had a chance to open my stunned mouth!). So I am sooo happy to see they are specifically going to train the staff in pandas! They are also calling in the Tourettes Association to train staff and to observe my son once school starts. Then they can give more specific recs in dealing with him specifically. Just hoping TS doesn't decline since it's pandas. I still believe this will be very helpful! I think I will add in there that if he gets sick in the am from meds (although hopefully by sept. we'll have the food/med thing figured out), he can actually stay at school. Seriously - he was FINE today as soon as I picked him up! They also are going to have to make allowances for him to visit the bathroom 30 times a day on those days he is urinating non stop. First grade had a bathroom in the class, other grades do not. I said I was worried about him being so obvious raising his hand and asking for a pass so much. They will give him his own pass and allow him to just signal the teacher that is where he is going. Also, since he is now so high on the ADHD scale, they are going to mark an area around his desk that he needs to stay within, rather than expect him to stay in a seat And since he has sensory issues, he will have a box at his desk with clay and other items that he can manipulate when needed. Overall, I am very pleased with the school. I just asked the teacher to start the process, met with a team to discuss and then signed a paper allowing them to evaluate. Check with your school though - you could have a different process. And the request isn't valid until in writing.

I used to be a DSS case worker. I only lasted 3 years. Awful, terrible job to say the least. First of all, did the counselor actually say that in front of your child? That is just awful! Last thing you need! But... let me offer some reassurance if there is any to be had. DSS in most states has changed from what people think it used to be. They DO offer some help to families in crisis - it's not only abuse/neglect investigations. They have contracts with counseling agencies, etc... that can actually offer some good resources. However, when I worked at DSS I can tell you this - I was in my early 20's and childless And therefore, clueless on a lot of issues, as many case workers are. So yes, arm yourself with info and DO offer up your peds phone number is contacted. In fact, they would request that anyway. Nothing you have said here indicates this would even be a neglect/abuse referral and DSS may not even respond at all, or they could contact you to offer some help - depends on your state and I've been out of that area for over 10 years. I still work for a Division of Human Services working with Disabilities and we DO serve thousands of kids. I have myself been discussing pandas with the different casemanagers, particular those in crisis and intake, our agency nurse, psychologists, etc... I am sure DSS could use some education on pandas as well! Hopefully not at the cost of more stress to you though. I'm doing what I can in my state.

I just had the eligibility meeting a few days ago. What I did was request a child study team eval for special education services. They did the whole evaluation. I was somewhat surprised, and honestly, impressed. He did not qualify for special education, but the school was more than willing to do a 504 based solely on PANDAS. No argument, no debate over the diagnoses. We have the meeting to formalize the plan in August before he starts 2nd grade. Glad you posted bc I hadn't thought about asking to have the room cleaned more often. They are going to train all of the teachers who will work with him in PANDAS/Tourettes. He will also be allowed to test at his own pace and leave the room if necessary. Since he was also recently diagnosed and we are fine tuning the treatment currently, we are going to reassess in August.

Congratulations on a wonderful evening

Thank you. That is good to hear.I have bananas and will try to get him to eat one. He isn't much of a fan. He is eating fine and I am having a VERY hard time explaining the concept of "when you come home sick from school - no you do not go out and ride your scooter all day". I forgot to ask the school if he is excluded tomorrow. Better call the nurse and check in. I'd bet even if that is their policy, they'll understand. He is totally fine so I'm sure it's the meds. Wonder what my chances are of convincing him to take a nap with me ?

DS just started Biaxin two days ago. He seemed to be doing okay with it. I know to make sure he eats prior to taking it and he is eating 2 activia yogurts daily. This morning, he was fine, ate a bowl of cereal, had his biaxin and off to school. I promptly got a call to pick him up because he threw up at school. He doesn't seem ill at all. Amoxi didn't work for him and he can't take augmentin. I'd like to be able to work the biaxin out. Is this something he is likely to get used to? Is there something else I should have him eat with it that would help him more?

I can't get over the low dosages everyone else has tried! Our doctor told me to get 3mg and the 2.5's were the closest I could find. I wonder if he was vomitting because it was just simply too much for him Scary!!! However, since I take it and know what kind of crazy dreams I get with it, some of you other comments made me think this may just not be the thing for him. DS has terrible nightmares as it is, sleepwalks and talks, etc... I'll look into the tryptophan. Thanks

Glad to see we're not the only ones "switching off" sleeping with our son. Honestly, a lot of it is for self preservation. We have good chance with convincing and reassurance that he will stay in his own bed, but often that results in multiple nocturnal trips into his room for me during the night. I can handle a few nights of that and sometimes end up in his twin bed with him for a while. But then, I just get too too tired and I just take his bed and DH sleeps with him in ours. On weekends, holidays, vacations... whenever alarm clocks aren't a factor, we switch off nights. I will readily admit, it is MUCH easier to reach over without even opening my eyes and pat him on the back and reassure him than it is to get up, walk down the hall, wait until he is calm and go back to my bed. We did try making a "bed" for him on the floor in our room that he could go into if he needed. He was having none of that. If he comes into our room, he's in our bed. But I have heard that method has been helpful to others.

When DS6 was first DX in December and I told the doctor how bad his sleep is, she suggested Melatonin. I immediately went and got 2.5 mg sublinguals. I myself have had bouts of insomnia for quite some time and only recently discovered melatonin myself - LOVE IT! I take 5mg and am amazed at how well it works. However, the first night I gave it to him, he vomitted in his bed. I should add - luckily, DS is NOT a vomitter. I can count on one hand in his life how many times that has happened. I chalked it up to a fluke. A couple nights later, gave it to him again. The same thing happened. I do notice that if I take it with other medication, I get very nauseated. I have a feeling that is also happening to him. Does anyone else see that problem? If so, are there any tricks to avoid this reaction? Spacing, eating something with it (although he always has a snack before bed - delay tactic) It is very disheartening bc I SO want to help him get some sleep!

Reminds me of a video of a little girl recently being posted around facebook. Her mother sat by quietly while she screamed hysterically for several minutes at her mom and the person filming. Everyone posting was appalled at the behavior and the mom. When I commented I'd bet money that child had pandas, friends asked me if what we went through was anything like that. They had NO idea it could be that bad as they had known my son for years. When I told them it was, they were shocked. They assumed seeing that girl, it was just lousy parents. Made me feel slightly better that knowing me and my son the first 5 years of his life, they now thought otherwise.

Wonderful!!! Hope it continues for you My son has had a day here and there where he is essentially symptom free. I find it so eerie, I hardly enjoy the time I have. It's just so weird to me anymore, it's like I'm waiting for the other shoe to drop.

This has been an extremely informative post for me! Thank you, but sorry it was at your expense of course I have to look into this more for my son. He will constantly say someone "hit him" when he was brushed up against, yet wants to "play" very very rough involving hard wrestling and hitting and it is very hard to stop him. I have his CST eligibility meeting tomorrow morning. I had received the OT eval in the mail. I deal with OT at work so was familiar with what they did. How he could hold a crayon, jump on one foot, didn't test shoe tying since he doesn't wear laces (lucky since I have not had the guts to tackle that one LOL), he's able to dress himself, move around the classroom, etc... the basics really. I'll have to read up more on this tonight before the meeting and before our sat appt with Dr. T.

Neurologist - who I waited two months for an appointment with. Both my ped and immunologist were referring to him thinking HE would be the one to help. First of all, he left my son and I sitting in the little examing room for nearly an hour and a half! Barely looked at my son, did NO sort of neuro eval, talked to him for 5 minutes and then had a nurse take him so we could talk, which I did want him to do. Told me DS has tourettes and tourettes can wax and wane and be aggravated by strep. Refused to consider trying long term ABX. I even showed him school work from pre first episode, during first episode, after ABX and current. He said it's the way TS goes... So I figure I'm at a neurologist and I tell him I'm concerned about Chiari. I have it and need surgery for it. DS has started with bad occiputal headaches and says he sees stars whenever he coughs or sneezes. Neuro tells me "oh ACM is NEVER hereditary". I could tell how far I was going to get with him so I just left it. Requested written report later for CST from neuro. Sent me chicken scratch notes that didn't even HAVE a diagnosis on them! Husband vent!!( and no offense inteneded I know there are some GREAT dads here). My husband just does NOT get it! He brushed off pandas at first. Finally admitted that sure seems accurate, but continues to say "he's just a kid. he'll grow out of it". When I bring up expensive doctor visits, meds, special education, he gets annoyed. But then the one time he took DS out himself and DS had a total rage attack in the car, he called ME on the cell phone expecting me to do something about it!

Oh the decision making! that is the WORST part at my house. DS says "I'm hungry" okay, so what do you want to eat. He will survey the whole pantry and fridge for what feels like an eternity trying to pick. Will almost always ask for whatever we do NOT have. I give choices... none of those will do. Sometimes I get frustrated and say "fine then nothing" and he'll pick one thing. Then after I put it in a bowl or whatever for him, he'll decide he won't eat it. He also won't eat at the table. My DH tries to force it, but I don't. I want SOME peace while eating. However, we also spent several thousands of dollars for new carpeting. So he usually eats on the floor in the kitchen. That of course leads to a happy dog and a very angry child half the time Not to mention, that causes a whole other issue bc I have to have a special dog too. Can only eat RX food or he gets bladder stones and needs $2000 surgeries.

Mine lifts the seat and STILL pees everywhere My bathroom sometimes smells like a gas station bathroom We have major food issues too. He just wants to graze all day long on the same basic things. Yet at dinner time, it NEVER matters - his tummy hurts. I actually put the plate in the fridge the other day and when he was hungry 20 minutes later, pulled it back out. To my amazement, he ate it! I'll have to do that more often. I know what my son doesn't actually like. I am very lucky in that respect, he truly dislikes very few foods. And to boot - he gravitates toward very healthy things. I try my hardest NOT to make an issue of the food. but now he is ALWAYS starving an hour after going to bed. Of course, delaying the actual sleeping part. Hang in there!!!!

I take topomax for migraines. However at work, I see soooo many clients on it for behavioral issues. Topomax causes behavioral changes - often just the opposite of whatever the typical behavior is. I have been on and off of it I think three or four times. Each time it was completely different for me - very weird stuff! The first time, it made me extremely angry. I started to get out of my car to go after someone at a stop light bc he had been tailgating me! I lowered the dose after that. That is NOT like me at all!!! That effect did fade though. Another time, it made me very depressed. IMO - it is a very unpredictable drug. And when used off label, I don't think they know what dosages to try. It also has some downright painful side effects. That all said though - I'm not against off label usage As far as anti-epileptics go, it's not a bad one and if those are going to be tried, I would prefer anyone I love to try the topomax first. The others have much much worse effects across the board.

Stephanie - forgive me if I'm wrong, but was it you that your children also have ACM? excessive sweat, especially at night is also an ACM trait. I have attributed my sons sweating to the possibility of him having ACM since he did so this all of his life.

Yes, I'm afraid that if I'm caught in a lie, it will only make it worse. He IS very smart (although he did just qualify for special ed this week based on his medical needs/TS) and he knows more than we give him credit for. I wouldn't say she was on a trip, but she said we should tell him her knees are bothering her. He knows she has bad knees. I think I will just stick with a vague "not feeling well" and hope that's enough. Thanks for the idea! We will try the computer once she is at rehab and feeling a bit better. That will surely help him a lot. Even a phone call actually, which I hadn't thought of. Before she was in the hospital, she had a very altered mental status and I was uneasy with him talking to her. Hopefully that will remain stable now and we can at least do that once she can speak more clearly.

What about losing teeth? I read or heard somewhere that losing teeth or growth spurts could even be a factor? My son just lost 3 teeth in less than two weeks AND suddenly outgrew all of his shoes nearly overnight! Is it at all possible that those, or one of them, could be causing his latest difficulties? Or now that I say that, I'm wondering if those alone are causing it and not even pandas related.

That's scary! I was just starting to seriously look into this. My DS is 6 and very tiny (never made it to a growth chart yet) He only weighs about 45 pounds I'll have to look into that aspect further. Thank you for posting! Sorry you had such a difficult time of it.