7upMom

Interesting! I don't think my son has peridontitis, but dental procedures whew- at 9 y/o he has had at least 7 cavities, 2 root canals, has never lost a tooth on its own- they have all had to be pulled, front two teeth got "damaged" ( no clue how) and died per say also, numerous abscesses dentally. No hereditary teeth problems, no sibling tooth decay problems, dentist stated he just has "bad" baby teeth and it happens. Never been tested for anything along the Lyme category tho.

I think you are in very good hands with Dr.K! Thanks DeAnn , I think I just needed that reassurance!! ( : I think my nerves are getting to me the closer its getting lol.

Sometimes I just feel plain wacko trying to figure it all out. I hate to say this cause I know that there have to be some really good doctors out there somewhere but I am getting so fed up and frustrated with everyone we have seen so far. I don't even know if this is going to make any sense because its hard enough for me to sort out but In Oct , his immuno dr said his strep b numbers were 1360, then Nov Mercy hosp called local hosp here and got numbers they had just run- told us strep b was down to 860, then Jan back to immuno dr for reck and they say his numbers are 1360 and they were happy with 1360 because as long as those numbers weren't increasing they were happy. I tried to explain that - they had increased if in between there at our local hosp they were down to 860 and now backup somewhere he got a strep and we missed it. She said nope, we don't go by anyone else's lab but our own so we are happy. I pointed out how odd it was it was the exact same number again also, she said nope not odd its just staying stable where it was before thats good. Come to find out- the lab there tops out at 1360 ( so they truly don't know that his numbers aren't increasing). I went to local hosp to get his lab results to take to immuno doc to prove it and they claim titer numbers were never ran - they only checked for active strep- so why would Mercy hospital tell me they got those numbers and it was good they were coming down. I don't understand the point about any of them lying about any of this , it just makes me ssssoooo angry and frustrated with them all. Does this happen to anyone else, just this mass confusion where you feel like none of them know what the heck they are doing? I am just praying so hard for someone to shine a better light on all of this, just when I think we've found someone who can- they end up being as idiotic as the previous one- meanwhile the one that suffers from it all are the kids. gggrrrrrrrrrr I guess all that just to ask , am I hoping for too much in Dr K ? that I would like to stop going to 50 different doctors and have one really good one take a look at everything on the table, not this one for this, that one for that- cause thats where I think they are not connecting the dots or misinf or something. Heck I don't even know if I make sense anymore LOL

Working on summary for Dr K appt coming up and some things are jumping out. This has been the first time we've actually taken an overall look at our 9 y/o's history. I am not doubting his diagnosis of PANDAS but am wondering if there is something more going on than just that. Every lab workup he's had done since 2 y/o to current shows very high monocytes, lab reports of 'rare white blood cells' in stool samples and just numerous other things that are making us go hhmm? ? Will Dr K look at more than just the PANDAS during our appt?

Will keep you in our prayers, know its really hard to go through but stay strong!

Great news! Happy for you and family!

It is good to know what to possibly expect when we do wean him down. My head is just spinning right now, this evening wasn't any different- same scenario only the rage was from not wanting to go into church> again physically aggressive and violent, spit in my face etc, etc. We have always done the just follow him/or sit by him for his safety but last night and tonight it is to the point where you have to physically restrain him he is so violent and out of control. It is breaking my heart and I don't know how much longer we can do this. I am going to try calling Dr K's office in the morning and get him in sooner- thanks for the sugg. I have a script from last month, they prescribed as a precautionary when he had a sore throat ( but strep was neg) it is cephalexin 250. Would this work better to give him than the penicillin??

He started on the lexapro in Dec (sudden onset OCD) it hasn't touched the compulsions, they continually have gotten worse, same with clonidine (started 6 mths ago and hasn't touched the tics- but works for his sleep. As far as the abilify it did work at first for a short while and then nothing, so they kept trying to up it and nothing anymore. Same with behavioral therapy- 2 years of weekly sessions - hasn't touched any of the behaviors. Its worth a shot to see if it gets better, I def will make sure I wean him off approp through his psych but if it isn't helping, it surely can't hurt to get him off of them and see.

They took him off the abilify for a short time, it just didn't do anything and put him on invega, whoohoo that was BAD for him. So they took him off that and back on the abilify. Right around the PANDAS diagnosis time though, I put my foot down and said thats it I want answers!! We were getting thrown around from this specialist to that one, etc. So it turned into a big mess and he was seeing like 7 different people, ugh. I am finally just now putting all these pieces together and wondering if he should not be on any of these psych meds right now?? the lexapro doesn't work, the abilify doesn't work so what is the point in pumping that into his little body.

He was on the penicllin for almost 2 years off for 1 yr and went back on 3 mths ago with PANDAS diagnosis/ they are trying to get the titers down. It is 250 twice a day, asked him Monday to up it, he said no can do! Geesh he has been on the abilify for 3 years- I'll try and search the threads and see if I find anything on this med

Thats funny- you are so right! and it took just reading this one sentence for a lightbulb to go off of yeah, I do!

After that have you ever seen it again? I hope not- it was very strange and scary and with him it takes a lot to make me fearful anymore! Thats a good theory though, the seizure part hhhmm.

We have an appt to see Dr K on the 22nd. He immuno dr is in Des Moines ( Dr Elliott) at Blanks, pediat- local, psychiatrist, and therapist. He takes Lexapro(OCD) and Penicillin( PANDAS) in am and then eve takes Penicillin( PANDAS), abilify ( nos mood disorder) and clonidine ( tics and sleep) I just hate that feeling right after of - how are we going to get through this - then after he's back of course I know I would do anything to get through it. He has been inpatient twice once at 7 ( he was hearing voices), once in Dec (self harm- for safety) but they told me 3 strikes your out- in other words if even for safety if he comes in one more time they said they may consider keeping him in a program and ultim boys home. You have got to be kididng me- so I do my best to protect him, keep him safe, cause no way would we let him go to a boys home, this is going to sound idiotic after the above post but he is a sweet, smart good boy in a good family. I am just praying we get some much needed help for him when we see Dr. K and that catatonic thing - I am just worried about that.

??? He doesn't believe in rheumatic fever? Isn't that crazy, we took him to our pediatrician like 10 times when he was spiking fevers 104 and lethargic for about 5 weeks in a row, they kept telling me he was catching one virus after another, they took him for blood draw, son fell asleep during the draw he was so out of it. They called and decided not to send the blood in, it was just a virus??? He had these lumps all over the back of his neck so took him to Blanks childrens hosp and they diagnosed him with rheumatic fever. My ped said that was "bunk- nobody gets that anymore" and removed him from the penicillin.

Jynx'd us when I posted yesterday that we had went a full week now with no full blown rage. 9 y/o has been couple days complaining of headache/ stomach ache on/off and a tad on whiney side ( reverts to 3 yr old whine) Out of nowhere today says he is bored ( thats a repetitive remark a lot no matter how many options he is given) but he started slamming head on countertop, threw himself on floor and there it went. This would be the first time I have had a chance to do the "pupil check" and yep, HUGE- it was not him that I was dealing with but he was slamming chairs around. My first move is always to lock all doors, he is a bolter! and then he went for the knives ( we've put these up since the last rage though) His 17 y/o sister walked in and he screamed horribly at her and drew back to punch her, - not seen that before - he is usually self harm only-- once has it been on others and that was a time period 3 years ago. Before I knew it he was coming after me, my husband was running an errand and we ended up on the floor ( he was 80 lbs- I weight 120 and he is close to the same height) so restraining him when he's got all that adrenaline was rough. I got kicked, punched in the face, he bit my arm, scratched my arms all up, anything he could do. This struggle lasted for a long time, meanwhile 6 yr old twins and 4 yr old twins, know the drill and take their stations of safety away from the situation ( our house is trained) Something different this time though, it really scared me- one - just that bad physical aggression towards me was new but in the midst of it, he went completely catatonic- no blinking, no movement , nothing. He was drenched in sweat from physical exertion but He was GONE. I said his name over and over - no response, nothing. Anyone ever seen this before in a rage, I am really worried about this!!!?? Daughter got a wet washcloth, she was crying, we had never seen this before and when I touched it to his forehead, it was like pushing play from a pause, he snapped right into the rage he just disappeared from, had to quickly restrain him again. After another 15-20 min, he just went limp- voice came back to normal so I knew it was Him- knew he really was back- he repeatedly said sorry over and over and just laid there while I held him. With him being 9, this has been a better year since he is able to verbalize more of what he is feeling inside. Couple hours later he says it feels like an "itch he can't scratch inside his head so this is how comes out, but he's felt it for a couple days now and tried so hard to hold it in but couldn't do it anymore" I am wondering if this has any relation to the stomachache / headache he complained of, or geez i don't have any idea, I am so burnt out trying to figure it all out ) : I just want to scream, cry, throw things myself. This just isn't right!!!!!!!!

gggrrrr thats frustrating Iowa isn't on the list for any of those exemptions. Theres no way our pediatrician would let us get out of it- HUGE firm believer he is in immuniz and not in rheumatic fever so def not in PANDAS either

Thats what they told me at the beg of the school year this year and they gave parents a timeline to get it done. I never realized there were exemptions on this though, I am going to see about doing that- appreciate the info.

New this year in the school system was the requirement for a second chicken pox vaccine shot. I don't care for this at all, but how do you refuse these shots if they are required by the school?

Is there a file for this besides excel that will work on my apple?

Thanks for the info on that!!!

Not at all, I completely understood that> ever notice a lot of us ask that a lot- was that confusing or did that make sense - cause we are all so used to trying to explain it to others who def would be lost trying to understand it lol

Does swimming in a pool with chlorine have relation to tics?

My 9 yr old is like this- he holds so much of it in at school and in public, even when he is at his dad's house every other weekend. I finally told him that if he needs to tic- do it, if he needs to spin 3 times and touch something( like at home) do it. We were seeing rages in him constantly ( every other day or so)- he was so relieved when we told him don't worry about what anyone else thinks and as long as it is safe we would not interfere. He has not had one rage since ( temper flareups/irritab yes,but he is much more at ease) and he now will tic and have compulsive movements in school But he doesn't come home irritable/ and full of anger. It is like holding it in was making him rage all the worse. His dad also talked to him and said not to be embarrased by it with him ( my son admitted he was emb that his dad would get upset) I also have felt "crazy" trying to explain it to others, thats one reason this forum is so great - everyone just gets it and there are just so many different things with it that the person on the other end of the conversation gets lost pretty fast too.

Thank you find that interesting and your explanation makes sense! This was a question a family member had asked me about pandas when discussing my son ( although he does not have autistic symptoms ) but I had not thought of it before so appreciate the insight

Don't mean to ask a stupid question but am curious? I have heard some discussion of autism and pandas- Is it possible for a child with pandas to have a sudden overnight onset of autism at a later age, say after 7? ( in the same way the t/s or ocd can present overnight) or is it that a child who has autism is also presenting separately with pandas?? Hope that made sense