fightingmom

My son just about loses his mind when I don't respond.

Thanks for posting this link!

Yeah, the dog strep thing was icing on your crappy tasting cake for sure.

I have a goofy lab with big ears that often gets ear infections, i believe them to be yeast/fungus related because antibiotics and drops from vet never worked, but a yeast/enzyme product does. Hope that's not something else that could be causing issues. Now you really have my wheels spinning, the possibility with my cats mouth issue, your dog is positive for strep...good god.

WOW! This is not good. We have 4 cats and a dog. They are part of the family. I have been involved in rescue for years, I HATE people that ditch their pets. If we find a link with our pets, I will be devastated. Wonder if the vets can give you long term antibiotic for a year or so? Or maybe injections?

Well he came home from school and unleashed on me again. He's never ever been this bad. Not all day everyday, no way!! Got a call from Cindy at Dr. B's office and she said it absolutely could be the steroids doing this, even adults get aggressive in them so with his tendencies it sounds like its the steroids. She said since its been less than a week we can take him off them cold turkey. So...that's what I am doing!! I noticed a few of you had said that the prednisone tapers u were given were only 5 days. Since we took them or five days, maybe now we will still see the improvement others have seen right after... We shall see. Please, please let this be it! If he continues on like this I don't think I'll make it. Not sure I have any sanity left at this point. And I'm fighting with my husband over this crap, too. He isn't as patient as I am and hearing my son talk to me this way has been upsetting him. So now we all are fighting! I am on my phone but will reply later to the very informative, thoughtful posts from above. For now, I'll just say thank you!!

Thank you so much!!

On iPhone sorry for typos

Add me to the list too. Within 6 minutes of getting home from school today my son was already Swearing at me and calling me "stupid b*". I was five-ten minutes late getting home from class due to traffic. Was yelled at about that and it continued on from there. If he had not lost his house key for third time this would not be an issue but I've changed my locks twice already an now have to add that of my list of things to do before surgery tomorrow at 7am. He uses a side door, our other two entrances I don't give him a key to anymore. He's demanding I take the key off my keyring and give it to him to use the front door tomorrow. Um...no! So, the name calling begins, then refusal to take dog put, then 6,403 phone calls when I leave to get away and run to store. I can't take it anymore.

No, you didn't misspeak. I misread. I went back and edited my post. Mea Culpa. I forgot that bartonella was on your radar. Given the cat and your son's rages, I'd keep it on the radar. If it's a factor, one antibiotic may not be sufficient and prednisone would not be advised. Like DCmom suggests, a month of abx therapy alone may have given you more information before confusing the issue with prednisone. But different doctors have different protocols. If you're told to discontinue the prednisone, I would not be disheartened. It doesn't rule out Pandas. In most chronic illnesses, tests offer clues more than they offer proof. So I add a third item to my above list - bartonella. Here's an article you might find helpful. http://www.benbrew.com/lb/lb.html Read it carefully - the author (who is not a doctor) sometimes jumps from talking about lyme (abbreviated Bb for Borrelia burgdorferi, aka lyme disease) and talking about bartonella. Often in the same paragraph. One minute he's talking about Bb and the next sentence he says something about bartonella. So you may need to read it a second time, paying attention to which infection he's talking about in that moment. It's technically accurate but confusing. Parts are very informative, others not so much. But it's one of the more comprehensive articles I've come across. Pay particular attention to the section of how it effects relationships. I found it to be very true (my DS had a bartonella dx and was treated with azith+bactrim for 9 months). Weird. This sounds EXACTLY like my son. Right down to the way he constantly criticizes everything I do. I don't even bring that up to doctors, never thought to. He corrects everything I say, he has an issue with the way I do everything, the way I prepare food, clean, pack his lunch, give him his laundry, everything I do annoys him. Since the blood test for my cat came back negative, but it seems hard to find in blood (the article says it hides out in tissue) how exactly do you get this diagnosis? Seems like a lot of false negatives would be in labs, no?

Abandon the therapist, really. You do NOT want a member of you "team" talking residential treatment. She hasn't a clue of what to do with your child, and basically says this when the only recommendation is placement. SHe obviously hasn't a clue about PANDAS with comments she is making. IMHO: run away & don't look back. Don't get sucked into sticking with her b/c of your feelings of her. Our son has a hx of doing so much of what you son does behaviorally when he is not operating on all cylinders. There is no one--psychiatrist, psychologist, Lyme/PANDAS treating doc--even after boo-coo in patient stays--that has recommended residential treatment for our son. In fact, all have it in writing that RT would NOT be in Evan's best interest. PM any time. Dawn I am going to do just that. He's expressed to me that it hasn't been helping him and it gives him more anxiety and takes up more of his time where he could be doing hw, or whatever as well. So besides the comments last night, it clearly hasn't been beneficial anyway. Her thinking last night was that maybe residential would knock some reality into him and he'd learn to have some respect for us. I tried to explain that we have an immunologist now saying there is something physiologically wrong and that many autoimmune disorders have been known to have psychiatric symptoms and she just wasn't buying it. Thanks for offering to be an ear. I know you've been through a LOT.

His behaviors definitely started with all of his sinus infections, strep and ear infections as a young child. I have been telling doctors for YEARS!!!! that he's off the wall when he's sick and they all told me the standard "oh, well he's just not feeling good, kids get cranky when sick" crap. EVERYTIME he got sick, that's when his symptoms would flare. But, I was just the crazy neurotic mom. He actually seemed pretty good for a year after ear tubes and adenoid removal and then it started to creep back. The past few years though have been terrible. Summers seem pretty good though -- no exposure to illness at school? I think that there is a major link with him getting vaccines for school at the end of august the past 3 years -- every freaking year they require something else. The HPV vaccine, in my heart, really, really put us in a bad spot. Every doctor I have told has told me I was crazy (in their nicest way). Dr. B actually ASKED us if he had it and swears that it is a major issue! He is OFF all psych meds! Since the hospital in December I have refused to put him on anything. Dr. B. took about 15/16 vials of blood from DS and around 10 or so from me. We are on the month of Augmentin, but yes, he started the steroids with it. I put in a call to them already, maybe they will taper us off of the steroids faster. Oh and I agree with you, I think given how long this has been going on, it's going to be tough, tough road to recovery. IVIG may be necessary. I know my son's cousins had it. The older one's success is questionable but the younger one, is doing AWESOME.

He's been sick, fighting a sinus infection for a month - or one that came back. I think I may be getting another sinus infection, perhaps that's causing issues. We have a cat with a recent illness that has to do with bacteria in the mouth and possibly caused by bartonella, mycoplasm, strep, etc. - bartonella test on cat came back negative, but you never know. I posted about her on another thread. Probably grasping at straws on that one, but was wondering if she could possibly be carrying something. Only been on abx right now for a week, had also been on a 10 day course of amoxi that started on February 13th. After about a week and for a week after treatment he was MUCH better. Then he got worse again, I took him back to Dr. insisted he was still sick, had them do xray of sinuses to check and they said it was actually worse this time than last time, despite the fact that he really didn't have sinus infection symptoms at this visit. So, they started him on cipro, then Dr. B switched him 2 days later to Augmentin. He's take 5 doses of the steroids thus far.

Sorry, did I say it was his immunologist? I misspoke. His THERAPIST said that last night. Dr. B. -- seemed completely convinced, without a doubt that we are dealing with PANDAS. There was not a single question in his list of symptoms that we did not answer yes to and in our explanations, our adverse reactions to psych meds, my health problems, family history of autoimmune and 2 cousins dx with PANDAS in last two years. He had ZERO doubt this is what we are dealing with. His therapist last night just kicked me when I was down without realizing it I think. I truly think the steroids are messing him up, but why? Though, I have been on them a few times in the last few months and I HATE them. My husband says I am miserable and mean. So? He's been on antibiotics twice in 30 days, maybe it is something like yeast, etc. I suspected that before for both of us and had purchased a candida sublingual/spray. wonder if I should try it again.

But, isn't the prenisone a key in the diagnosis? I thought if they responded well to it, then it was a telltale sign we are dealing with pandas? I'm going to call him now. thanks EDIT: Just left a message on their voicemail in the section that says the message will be reviewed by the Doctor. Thanks.

We are waiting for a ton of bloodwork to come back from Dr. B. Here is my intro post: http://www.latitudes.org/forums/index.php?showtopic=16822 He is on Augmentin 875mg 2x a day and started them on Thursday. He had been on a different antibiotic for 2 days prior for sinus infection. We switched to Augmentin after our appt with Dr. B. He is taking prednisone first 4 days 40 mg, then 30 mg for 3 days, 20 mg for 2 days and 10mg for 2 days --- I think....don't have the bottle in front of me, but it's somewhere around there. Last night was 5 round of steroids. The 2nd day he was like HIS OLD self. I only saw this for a day and suddenly he turned back around again. Each day has been worse last 3 days. And, like I said, he went from mad to sad. Completely irrational, even been yelling at the cat about dumb things - for example this morning she was eating and took some of her food put of her bowl and moved it to eat it on the floor and that really upset him. He has been staying up late, too. I feel like he's unraveling. Part of me thinks "hey maybe this is good, maybe it IS working, his anger is now coming out appropriately and here are all the things that he HAS been having OCD, anxiety about etc." the other part of me thinks "Am I making him worse?"

Oh and what's even better is his therapist yesterday told us that he's not involved, hasn't made any effort, doesn't seem to care at all and perhaps residential treatment would be an option. I had Brendan leave the room and told her that we met with an immunologist/PANDAS specialist and she told me to "be careful" with that and she'd hate to see me exhausting myself "chasing" after something like "this". Great, thanks. And, I really, really liked her....

So it's been 5-6 days on steroids and over a week on antibiotics and while I have seen a glimmer of my DS here and there....overall, I'm seeing what seems more like a constant state of meltdown. Before, I could see it coming and at least try to somewhat diffuse. Now, he's literally crying over EVERYTHING. He has cried before after huge rages and then as he was coming down from it wound up crying on the floor, but this is different. He's not raging, (which he always has in the past) no slamming doors, tossing over chairs, just emotional meltdown over everything. He's obsessing over EVERYTHING - his clothes (never had this issue before) - his school work - the fact that he's no longer in the honors society is reducing him to tears. He feels inadequate now because he has lost his motivation (his words) to do the work, but each time he doesn't turn something in at school he feels worse about it and can't stop thinking about it and then because he's so far behind already he can't bring himself to do the next assignment, etc. He's getting low b's and some c's right now...so he's getting by but he seems to be fixated on the fact that he's no longer able to do what he used to. This particular issue is the only thing I can see that is genuinely bothering him and I am thinking that his is more of an OCD or ADHD thing, but with our hospitalization after meds, I'm VERY, VERY hesitant to try anything else. And, if it doesn't go well, then he'll miss more school and be even further behind. He keeps wanting to "talk" to me. I am having surgery tomorrow, and am severely behind on my work, but spent every moment from 6pm-midnight with him while he went from being seemingly appreciative I was helping him with a project, to reduced to tears, to calling me an a$$hole and a bad mom, to back to asking if we can talk again, to back to crying to back to calling me names. This went on for hours. He calls me nasty names, but when I get up to leave he cries and begs me not to. I'm just expected to sit there and take it. If I leave he follows me and calls me more names, but won't leave me alone. He always follows me around in rages, but I figured that he just was so mad at me he couldn't walk away. This feels more like an attachment issue, he just has to be near me almost. I feel like since he started the meds, he's not raging - he's just an emotional basket case. He went from being pissed at the world to crying about everything. Has anyone else seen this? I'm a little worried, like maybe we are barking up the wrong tree and this is making him worse.

I will ask the vet about zith and see how that goes. Thanks.

Bulldog, if she does get her teeth out will that eliminate the breeding ground for bacteria, or would her gums still be a source? First, I want to do what's best for her health and if there is a chance she could be perpetuating issues with my son, I guess my question is would that go away once the teeth are gone?

Ok! I got confused -- and excited! Lol the IVIG went well though?

We posted at the same time! You ha IViG with Dr. Walters? How did it go?

I also wish we had options in Boston! We are in Providence and I can't even find a pediatrician that believes in PANDAS let alone be in board for treatment. Hope your appt. went well!

Thanks for your perspective. Been doing the same with meds - also started colostrum and lactoferrin a few weeks ago. As soon as meds stop, it comes back she's off food. Been researching it quite a bit, there's even a yahoo group and the tooth removal seems to yield results only about 50% of the time. If it yielded a higher success rate I would have just done it from the get go. I'm on the fence. It seems SO extreme, and I feel so bad....but on the flip side, I'm feeding her baby food off my fingers this week...not exactly pleasant for anyone.

This hits home for me as I am positive vaccines have impacted my son and do each time. I think I may donate/buy it.