Feel like things are getting worse

[fightingmom]

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.

Edited March 21, 2012 by fightingmom

[dcmom]

Fighting mom- who is your doc? I don't think I am too familiar with your story.

 

Has he been reasonably screened for infections? How long and how much abx has he been on?

 

As for the steroids, they work miracles in my two pandas kids. We do see some issues when they (particularly one of them) are on the Rx. Steroids have side effects, generally. They can make a person anxious, irritable, etc. So for us, sometimes this added emotional junk makes things SEEM much worse for a few days. Think of taking ocd and emotional lability, and then adding on top of this major irritibility, difficulty sleeping, etc. It is not pretty. But- for us this only lasts a few days- then things start to improve dramatically.

 

How long is your burst, how high is the dose? I think I would try to stick it out- if you stop now- you may not see the results that could be coming, and you will be hesitant to try them again. For us they have been the single biggest factor in giving my kids a normal, happy life (so far).

[fightingmom]

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....

[bulldog24]

I had to stop steroids for my daughter. She was waaaay worse and a disaster. Called doc b who said this happens to some kids from steroids and to stop them. She was baseline in 24 hours! Call the doc! She was on them 4 days. You cant stop cold turkey sometimes so get some advice. The doc was very good about it

[fightingmom]

Fighting mom- who is your doc? I don't think I am too familiar with your story.

 

Has he been reasonably screened for infections? How long and how much abx has he been on?

 

As for the steroids, they work miracles in my two pandas kids. We do see some issues when they (particularly one of them) are on the Rx. Steroids have side effects, generally. They can make a person anxious, irritable, etc. So for us, sometimes this added emotional junk makes things SEEM much worse for a few days. Think of taking ocd and emotional lability, and then adding on top of this major irritibility, difficulty sleeping, etc. It is not pretty. But- for us this only lasts a few days- then things start to improve dramatically.

 

How long is your burst, how high is the dose? I think I would try to stick it out- if you stop now- you may not see the results that could be coming, and you will be hesitant to try them again. For us they have been the single biggest factor in giving my kids a normal, happy life (so far).

 

 

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?"

Edited March 21, 2012 by fightingmom

[fightingmom]

I had to stop steroids for my daughter. She was waaaay worse and a disaster. Called doc b who said this happens to some kids from steroids and to stop them. She was baseline in 24 hours! Call the doc! She was on them 4 days. You cant stop cold turkey sometimes so get some advice. The doc was very good about it

 

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.

Edited March 21, 2012 by fightingmom

[LNN]

I had two thoughts - steroids and yeast.

 

First, like DCmom, steroids have worked miracles for my DS twice during bad flairs. But they have also had the opposite effect twice when we tried them at a time that inflammation wasn't the driving force behind the behaviors. Everyone is different, but for my DS, prednisone has had an immediate calming effect when he's needed it. It has made him edgy and belligerent when he didn't need it. I now know the difference pretty quickly and when we recently tried steroids and got PMS symptoms, we stopped after 3 days and he felt much better. So it's a tough call. I put it out there as something to consider but can't tell you what to do about it. (sorry).

 

Second, when we recently tried steroids and didn't see success, I turned my attention to yeast. DS has been on multiple abx over the past 3 years but due to a strep issue in feb, we added an additional abx that may have tipped his gut balance. Then, thinking I was doing a good thing, I added Saccharomyces boulardii - a yeast probiotic - to protect his gut but for him, it may have been a bad thing. I started seeing agitation, inappropriate behaviors and language, defiance out of the blue (out of character and he later felt remorse), confusion, anxiety. A lot of yeast symptoms overlap with Pandas symptoms. Very hard to tell them apart. So now, I've stopped the extra abx, stopped the Sacc B and have started garlic - a yeast killer. I'm seeing an uptick in some things but that would be expected during a yeast die-off and I wont know if I'm on the right track for another week or so. In the meantime, steady dosing of Aleve and Motrin (which you should NOT give while on steroids).

 

So I realize I have no definite answers for you and am just muddying the waters. Wish I was more helpful. But I just wanted to say that it's a complicated thing to sort out and an adverse response can have several causes. FWIW, any therapist who advises against "chasing this" but would rather subject your son to a second hospitalization and additional psych meds is not someone I'd want on my team. You need someone who will be curious and willing to look at many possibilities.

Edited March 21, 2012 by LLM

[dcmom]

Fighting mom-

 

You should see improvement in any increase in "stuff" when you jump down to lower doses, IMHO.

 

How long has he been on abx? We have always been on abx a minimum of a month, full strength, prior to steroids.

 

Is there any possibility that he is getting sick? If he gets sick, that may negate any effect the steroid has.

 

I am going to read your link now....

[bulldog24]

Maybe i am wrong about the response to steroids being an indicator to pandas. My son who is severe never got any.

 

The dd i mention only has a mild case of pandas.

But the reaction was cear.

[fightingmom]

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.

[fightingmom]

Fighting mom-

 

You should see improvement in any increase in "stuff" when you jump down to lower doses, IMHO.

 

How long has he been on abx? We have always been on abx a minimum of a month, full strength, prior to steroids.

 

Is there any possibility that he is getting sick? If he gets sick, that may negate any effect the steroid has.

 

I am going to read your link now....

 

 

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.

[dcmom]

Ok I read your intro.

 

So it certainly does sound like pandas, although pandas is certainly tougher to diagnose after a long history, and without a certain link to illness at time of onset. However, the treatment for pandas is relatively benign, considering the alternatives.

 

I imagine Dr B did a panel of tests to look for infections, immune deficiency, etc. I say "reasonable" batter of tests, only because with my two pandas kids, they have given over 40-50 vials of blood over the last few years (since pandas onset), and almost every result is normal.

 

I sort of wish that Dr B had put your son on a month of Augmentin prior to starting the steroids. That is the way my doc has done it, and I do feel it is a good precaution to "reasonably" be sure any infection is dealt with.

 

Due to the severity and length of time your son has been sick, I am not sure that one steroid burst is going to be the answer. For my kids, at initial onset they had a fairly severe episode. We were not able to get and maintain a satisfactory remission at that time with steroids and abx. We ended up doing plasma pheresis on both, which brought them back to baseline. My kids had only been dealing with pandas about 6 mos when we did pex. Since pex, we have been fortunate enough to maintain a fairly good remission by using steroids when symptoms are flaring. In my personal opinion, your son may need something more, like plasma pheresis, IVIG, IV steroids or even possibly a monthly steroid burst.

 

Is he off of all psych meds? I would think it may be worthwhile considering weaning him off if he is on them- as they don't seem to be working.

 

Pandas is a tough diagnosis- with so much hope. It seems like it takes most families at least a year, or a few episodes, before they sorta figure it out, and feel a bit in control again. We have been on this journey for three years. The first two were tough- but things are calmer now. I am a bit calmer due to losing them, and then recovering them, a few times. I feel a little more confident in the abiltiy to get them back.

 

You will figure this out. My biggest advice is not to panic. I always panic at the first sight of anything (a new symptom? a flare? a bad day? an illness?)- but then I remind myself NOT to DO anything- ride it out for as long as I can- 3 days- before really panicking.

[fightingmom]

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.

Edited March 21, 2012 by fightingmom

[Iowadawn]

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....

 

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

[fightingmom]

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....

 

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.

Edited March 21, 2012 by fightingmom