Feel like things are getting worse

[dcmom]

How is the sinus infection now? Is it gone?

 

My kids have not dealt with sinus infections. However this is what happened recently-

 

my younger daughter had a cold, and for a month was going down hill (pandas wise). I did a week of regular ibuprofen and antibiotic dosing, which helped, but once she came off she got worse again. After about a month of this- symptoms remained fairly low lever- but they were there- I put her on a five day steroid burst. Days 1-2 were hard- she was very cranky on top of the pandas symptoms. Day 3, 4 and 5 were PERFECT! Day 5 evening, she looked like she was getting a cold. Next day, full blown cold, and pandas symptos (low level) returned. Ugh. Did another week of advil and antibiotics. She has been off everything now for a few days, still some low level symtpoms, so I am just hanging on to see where this goes. This morning (her worst time) was a little improved.

 

So- I guess I am saying there are so many factors. He could be getting worse due to the steroids- but if that is the case, improvement could be right around the corner.

 

If he is getting sick, or still sick, this IMHO could negate the effect of the steroids. The worsening could be due to the autoimmunity triggered by the illness.

 

We have a pattern. My kids get sick, they get treated (and seem to recover fine), then pandas flares up and we need to treat that (immune modulation). If they get sick again, pandas flares again. So, IMHO it is vitally important to "reasonably" try to clear infection, and THEN try to halt the autoimmunity.

 

Dr B sees lots of kids. I imagine he is speeding your son along the route to IVIG. We have never seen him, and I have mixed feelings about his protocol. I know some devotees, and some that are not fans- as with any doc. I find what works for us is for me to figure it out We use two great docs- but I still have to be the advocate, researcher, and director.

 

You will get him there. Whatever route or treatment you take, I have found that time is a factor in healing that cannot be bypassed. The longer my kids have been sick, and the more severe, the more time they have needed (regardless of treatment) to get well. So, try to hang in there. Also- don't look at symptoms day by day- look at the weekly trend. This is a truer indicator of where you are, and will help to save your sanity, or what is left of it

[LNN]

Sorry, did I say it was his immunologist? I misspoke. His THERAPIST said that last night.

 

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).

[LNN]

If he is getting sick, or still sick, this IMHO could negate the effect of the steroids. The worsening could be due to the autoimmunity triggered by the illness.

 

Dr B sees lots of kids. I imagine he is speeding your son along the route to IVIG. We have never seen him, and I have mixed feelings about his protocol. I know some devotees, and some that are not fans- as with any doc. I find what works for us is for me to figure it out We use two great docs- but I still have to be the advocate, researcher, and director.

 

You will get him there. Whatever route or treatment you take, I have found that time is a factor in healing that cannot be bypassed. The longer my kids have been sick, and the more severe, the more time they have needed (regardless of treatment) to get well. So, try to hang in there. Also- don't look at symptoms day by day- look at the weekly trend. This is a truer indicator of where you are, and will help to save your sanity, or what is left of it

 

You know, E, sometimes we see things from opposite ends of the buffet table and sometimes we're right there should to shoulder. Totally agree with you on these points!

[fightingmom]

Sorry, did I say it was his immunologist? I misspoke. His THERAPIST said that last night.

 

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?

[LNN]

Dr B can order a Bartonella test thru Specialty Labs (a division of Quest - make sure they run it thru Specialty and not one of their other labs) or thru the Igenex co-infection panel (but this is far more expensive). Like other lyme tests, when you are looking for antibodies, there are reasons why the test results may not be reliable. Many LLMDs (lyme literate MDs) treat based on clinical symptoms, the same way pandas doctors do, using lab results to support a diagnosis, but a negative lab does not rule out the diagnosis. Yes, you are Alice in Wonderland and nothing is simple or as it appears to the outside world. But you've been in this world for years, so now you've just fund a bunch of other nutty moms who live here with you.

 

Like DCMom said, you ultimately need to exhaust yourself (post-surgery - you need to take care of yourself first) and learn as much as you can about a variety of possible culprits. Assume you are dealing with more than one culprit but that you will focus on removing one layer at a time.

 

I started out on the Pandas path and then pursued lyme and bartonella and then nutritional support. In hindsight, I'd have done it in the opposite order. But DS is much better despite my backwards approach. DS still has Pandas - flaired with a strep issue last month. But recovered much faster and it was only a 2 on the scale vs. the 9s and 10s of years past. It's a process.

 

You have a lot on your plate. Focus on making things bearable for the moment. You are in the process of learning, testing, and sorting out your team. The team may change over time. IMO, Dr B gets many points for testing for lyme but his expertise is in other areas and an LLMD can help more if this is where your journey takes you. Take it one step at a time and stay focused on accomplishments, not on how much more is ahead. We will all throw ideas out at you, trying to be helpful. Put the ideas on sticky notes in a notebook. Look at the ones that are easier to treat (e.g. yeast, diet) and the ones that pack the biggest bang for the buck (CBT/ERP therapy is huge, IMO and can yield life long benefits as well as saving short term sanity, marriages, jobs and wrinkles). Stick with the abx treatment, even if you end up needing something more - like combo abx - it will probably help if some sort of chronic infection is involved. Baby steps...

[EAMom]

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.

 

 

My dd gets worse while on steroids. We've only done a couple of 5-6 day bursts...but they made her more aggressive. (However, PANDAS symptoms would then improve briefly a couple of weeks later.) My dh also got very irritable when he was on steroids once for a lung problem.

 

Steroids can be a double edged sword.

[Iowadawn]

Our son is fighting bartonella. He bolted out of school today & ran home--smashed a coffee pot in the Sped teacher's room when he got wigged out over math. Actually, the doc appt this afternoon is what is fueling (stuck on it) the behavior issues he has had the last few days. I just looked at his back--a couple bart rashes have shown up in the last day. It has been a while since seeing any. I have read somewhere that when the psychiatric symptoms are out of proportion to the physical symptoms of Lyme to suspect bartonella. Dawn

[sdrew99]

I know nothing, since we are starting this journey. But I did want to offer support and hugs. So much of what you have said about your son is just like my daughter and in a way it helps to know we are not alone...even though we feel that way at times.

 

Hugs,

Stephanie

8 year old daughter, possible PANDAS

[fightingmom]

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!!

Edited March 21, 2012 by fightingmom

[tpotter]

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

 

 

Steroids, although phenomenal for some, can be reallly bad for others. Also, if it is "just" a herx, it may not be necessary to have such a bad herx all at once. You may have to go easier on him.

 

Furthermore, give the therapist this "expert opinion" of the IOCDF (International OCD Foundation) that was published last year: http://www.ocfoundation.org/uploadedFiles/MainContent/About_OCD/Expert_Opinions/IOCDF%20Expert%20Opinion%20-%20PANDAS(1).pdf

 

They make it very clear that infection needs to be ruled out.

 

I know it's frustrating with people like her, but the best that you can do is try to educate her, and be prepared to find someone else if necessary. The fact that she's saying that it's an issue of "motivation" indicates that she just doesn't get it (and very possibly doesn't want to.)

 

Good luck.

Edited March 21, 2012 by tpotter

[cobbiemommy]

Our son is fighting bartonella. He bolted out of school today & ran home--smashed a coffee pot in the Sped teacher's room when he got wigged out over math. Actually, the doc appt this afternoon is what is fueling (stuck on it) the behavior issues he has had the last few days. I just looked at his back--a couple bart rashes have shown up in the last day. It has been a while since seeing any. I have read somewhere that when the psychiatric symptoms are out of proportion to the physical symptoms of Lyme to suspect bartonella. Dawn

 

We had a similar day, today. DS started allergy shots (three), Yesterday. He seemed fine this morning, but pushed a kid before first hour and ended up in ISS. He was upset because another boy laughed at him, when really the boy was trying to be silly. He reacted to the laughing boy by pushing another kid. Thankfully not so hard that the kid was hurt. Can't wait to talk to Dr. B on Monday and review all of the testing and decide where to go from there..

Cobbie

[fightingmom]

Dawn and Cobbie,

 

So sorry you had such terrible days. It's so exhausting and truly sucks the life out of you.

 

I'm going to knock on wood here, but today has been SO much better with my son. SO much better. He's upstairs doing his homework, thought he needed help with his math, but said nevermind he gets it now. Figured it out on his own!!! No name calling, no defiance and not crying AT ALL.

 

I'm convinced now it was the steroids for sure.

[fightingmom]

tpotter, thanks so much for that information. I will use it!!

[bulldog24]

Yes as soon as we stopped steroids, my odd was back.

[tpotter]

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.

 

Just one more thought on the subject. When DS 19 is flaring, he gets REALLY nasty, really rude, disrespectful. His standard line is "I don't give a s****!" It comes out of nowhere, and usually I respond (inappropriately for the fact that it's PANS/Lyme, but I usually don't think of that immediately.) Walls get broken, and I've been called some really horrible things. We once even had to spend the night in a hotel with DS home alone (16 yo) with the dog, because he was so violent towards us (just before we found out what was really wrong with him). We even had the psychiatrist call him (we called the psych from the hotel room.)

 

So, I totally see where you're coming from, but I agree with IowaDawn.

 

Additionally, if you have the ability, I would recommend that you also see Dr. L, as she has the capability to do PEX, and I think you should consider both PEX and IVIG as options (although she only does PEX on the sickest of the sick, so she may not offer it to him anyway.) As you know, both my children are older, had it a long time before diagnosis and treatment, and it's different when they get to that stage.

 

BTW, are you seeing a lyme specialist yet, since lyme is suspected?