bgbarnes

Great news on the 95% better- we just upped my ds8 to 500 mg last Thursday from 250mg and I am seeing improvement as well-250mg did nothing. I will keep my fingers crossed that you get to 100% and we have the same type of results as you! We did the ELISA Western Blot and insurance did not cover it- it was about $400 out of pocket. I don't know what the other test is and we have not done streptococcus pneumoniae yet. Brandy

Fixit & Data girl-We were on 250mg for about 3 1/2 weeks (were given a month prescription) previously we had been on several different 10 doses of Omnicef but there was always space in between and the behaviors came back. After we got our titers, Cunningham and Mycoplasma lab results (high) is when he he prescribed a month of 250 mg zith however I was not seeing the progress I thought we should be, I called the Dr asked for an increase or a steroid burst and the Doctor agreed to up it to 500mg instead of a steroid burst (he does not like them). He is 8 and weighs about 70 lbs. We have not done IVIG yet.... Brandy

My fingers are crossed- I think we are finally seeing some progress since we upped the zith to 500mg last week. 2 or 3 days after we upped the dose he had a MAJOR outburst that in the scheme of things was not that bad but still lasted about 30-45 minutes & wet his bed that night-thinking it was a HERX. He was a little more emotional for a few days and more touchy. Last night when my son came home from his Dad's- exhausted (he had been swimming all day) that normally is a condition ripe for an outburst or hand rituals etc....he was rather subdued( a word I have NEVER used with my ds- LOL!) did a little bit of I want to be with my Dad after telling his Dad he wanted to be with me- very normal 8 year old boy stuff-but this regularly turns into a cognitive inflexibility exercise and when we were eating dinner he did not do ANY rituals with his hands-the dinner table is one of the places I see it he MOST!!! He does a lot of different even and pattern touches- we call it his "touchy" thing..... last night I saw one small one and that is it!!!!!! He did a little bit of arguing about going to sleep- but once again I think it was normal 8 year old boy stuff and then he went to sleep. This morning- he was nice and did one of the "touchy" things at breakfast but it is not as pervasive as it used to be- once again I saw it ONCE. I am keeping my fingers crossed that we are finally making some progress!!!! We have our phone consult with Dr K this week- very excited!!!! Brandy

Can't wait! Do you need me to bring anything? Brandy

I got your VM- I will call you when kids are in bed....Dr R does not do high dose IVIG- one of the reasons Ia m talking to Dr K next weeek- hoping to get high does protocol and change Dr R's philosophy. Brandy

Congrats- may you get more Why? How? When and all sorts of other questions as the healing progresses! You are definitely a testament to perseverance heals a child!!! Brandy

Noelle- I don't know if I will be much help but we had a positive IGG for Myco not an IGM and Rage is one of our big issues. Zithro treats Myco too. Ds's ASO and Anti Dnase are also still high. We just increased ztihro to 500 from 250 and on the 2nd day had a BIG rage- did not last as long- I am thinking it is from kill off- I hope at least b/c I want to believe it is working!!! HE also has a dry cough- not sure what that is about right now but I do fear it has something to do with myco die off....or just some sort of virus. Our P41 had a double positive- but we are negative for Lyme. My understanding is that can be from Myco- Good Luck- the Rage SUCKS! Brandy

I am so sorry you are dealing with this, unfortunately we all know the pain you are going through- it will get better- just hold on and have faith! Brandy

My ds does this rolling with his hand ( it's like he is rolling his wrist around but does it up against something)- up against his head, on his body, on things- is this a tic or a compulsion? Brandy

I don't have experience with IVIG yet- but I just wanted to give you a cyber hug and know you are in my prayers! Brandy

My very good friend is an MD/ DC- she gave up traditional medicine and went to Chiropractor school while working as an ER Dr ( and she had a small child-needless to say amazing woman). We see her regularly- does cranial sacral and really looks at the whole body approach. She suggests supplements etc...I highly recommend it!! She is not the traditional Chiropractor either... Keep us posted! Brandy

Congratulations!!! That is huge- may your family enjoy more successes!! Brandy

Oh I have found a very fun way to deal with it-I pmed you my very creative solution....Sorry your family was not behind you- my Dad is in the process of buying Saving Sammy for the whole family and putting together a dossier of research to provide them- love my folks! BRandy

Ask them to fax them to you- The nurse has reviewed them with me before. FYI- he called me last night after leaving a message in the morning about something and I got exactly what I needed so don't worry! Brandy

I am sorry you do not feel you are getting the support at home- know you have it here. I agree with many of the other posts- I don't know if ANY 15 year feels supported just be the nature of being 15. That being said- keep venting here- if you are able to manage PANDAS in the amazingly mature way you are at 15 just think about what you will be able to accomplish in life. It is not what is holding you back but what it is preparing you to be able to show the world. You are an inspiration and such a resource into the brain of our kids. Thank you for sharing your feelings here! Brandy

I will take 50K- maybe it is the 50K that provides funding for a lab assistant to work solely on PANDAS for one year and makes us that much more progress towards a cure, or it gets media attention to get others to fund more research.....I think my SIL talked to this side of the family and it is really tainted from her- luckily I got all my hurt out of the way with her and now I will drop people like flies- I will only keep those around me that support me, my son and my family period- life is too short! I am proud of my Mom!!! Brandy

One of my favorite Aunts was talking to my Mother and my ds came up. She said her husband studied psychology in college ( 50 years ago) and she has done her own research and there is no such thing as Bacterial caused mental illness that I need to "get off my sons back" and get a job. MY Mom said You have not seen him in years- started talking about he OCD etc... ( IT has probably been 2 years since she has seen him) My Aunt responded- "other things cause that and I have my own theories, she just needs to deal with the behavioral issues and get off his back.... She also said something about I constantly have something as the "reason" for ds behavior issues- Duh I have been searching for 5 years!!! I have cried to her a number of times not knowing what was wrong. My Mom ended up hanging up on her- my Aunt called back and said now we are even and hung up on my Mom- can you believe that crap- seriously this was my favorite Aunt. She also said this Pepsi competition was just a way for Pepsi to advertise and that it is a bunch of crap- my Mom said yes but the top 10 get 50K. My Aunt said that is not going to do anything. I guess it makes my Christmas shopping list easier.... Brandy

My ds8 asked me on the way to school(camp) this morning what the word irrational meant. I gave him a simple definition and asked him why. He said it was from a movie he saw. Then he asked what an irrational fear was, we were passing a mailbox and I said an irrational fear would be that you were afraid the mailbox was going to attack you. Does that make sense. he said yes- then added I have a lot of irrational fears. I asked like what and his response was- you'll see. All very calm and matter a fact. I think I want to throw up.....I mean it is great he is talking to me about it but I just want this nightmare to be OVER! Watching his hand rituals at karate class last night-it is all I see-I am sure it just looks like an active little boy but I see so much more and I am afraid. Brandy

i know i'm soon to get kicked off this forum with my own obsession with the explosive child. i don't know where this falls with ERP techniques of reptitive questions so it may not be good advice. my son did this when in exacerbation. i didn't use this then but would if i had to now. did you try repeating back to him what he's said rather than engaging in a conversation about it? like "you want a pony?". "you want us to get a pony?". "you need a pony?" "a pony!" with an incredulous tone. what i like about this technique is that it keeps me involved with him b/c he will get upset if i ignore him or try to disengage in some other manner. however, i'm not really engaging with him. for my son, it tends to throw it back on him and then he's able to unhook his mind and he can see what he's saying is not really reasonable. if i try to tell him how his mind is unreasonable it seems to only further entrench him. I picked up Explosive Child this weekend and have used this technique when my son started his cognitive inflexibility or repetitive statements like that and I have to say- it has GREATLY DIMINISHED the length and duration of the inquisition. In the book it says to respond with- So you want a Pony- what's up? My son just stopped and had to respond- the responsibility became his not mine to answer. I am sticking with it! Brandy

CONGRATULATIONS!!!!! What a wonderful gift! Gives us all hope! Brandy

We had the lip licking things a couple of times too.... Play therapist wrote it ff as a nervous tic- and of course it went away... If we only knew!!

THIS week my son was bitten by a LOT of chiggers in a VERY private place if you know what I mean and he scratched so he had these huge welts all over his groin....trying to get medicine on them was a nightmare....makes me wonder if it caused an upswing in behaviors....hope yours ends soon! Brandy

IT was not horrible but it was NOT normal- the meltdown was short the defiance- moderate but I think it had more to do with me managing my expectations of how the say was going to be.....For my rough and tumble boy to talk like a baby all day is sweet- but just not right! Brandy OMG Brandy, my 5 year old talked like a baby ALL day in choppy short little baby sentences. I couldn't say it better...cute for about two seconds, then you want your normal 5 year old back! My kids were with their Dad today and I just was quiet and did things by myself, no talking- no decisions nothing- my hubby wanted me to do all these activities and I just wanted silence and peace- it was WONDERFUL!!!! I miss my kdis when they are gone but after yesterday I needed a day off! Hope your day got better!

IT was not horrible but it was NOT normal- the meltdown was short the defiance- moderate but I think it had more to do with me managing my expectations of how the say was going to be.....For my rough and tumble boy to talk like a baby all day is sweet- but just not right! Brandy