praying for a miracle

[mom2yo]

This is my first time posting something here, or anywhere for that matter. I write this with a heavy heart full of sadness and concern for my ds who just turned 17. We have been dealing with "stuff" all his life and we have tried so many things over the years to help, including ot, pt speech, biofeedback, consegrity, chiropractic alignments, psychologists, medication from neurologists for adhd,sensory integration specialists.The background on my ds is that he had delays early on, learning issues,attention issues,and sensory issues. The therapies helped with delays, but he's always had the learning issues and what i thought and still think was sensory issues. At some point though, he developed OCD and the thing is that until recently I did not even realize that's what it was...so part of my sadness is that i wasn't aware. I was told he did a lot of of the things he did b/c of the sensory issues, and when i asked the school psychologist a couple of years ago if he had ocd as some of his behaviors seemed like ocd to me, he told me that no, he doesn't have it and it was was just some tendencies and we all have that. Boy was he wrong. My ds developed a tic in september and that is when i first heard about Pandas. Now that I have been on this quest on pandas, i have realized how ignorant i, and i think so many ppl are out there, about ocd, and how it comes in many forms , not just the famous/typical things its known for. So many things about who he is and what he does i now realize is his OCD.

 

Since hearing abt pandas I figuratively and literally have been praying for a miracle. I want my son to be diagnosed with pandas because then we would have direction and a light to look forward to. Nothing has worked so far. We have already been to Dr. B twice. My ds was put on antibiotics for over a month and no change. Dr.B added prednisone (starting at 60mg and waning down over the 15 days). Today is day 10 out of a 15 day course.

On day 3, 4 and morning of day 5, my ds was so much calmer and really happy. He was so pleasant to be around and we don't get that a lot. As day 5 wore on, he went backwards. My husband and i had gotten excited those 2 days, optimistic. My husband has been skeptical these past few months and it's been quite stressful as we research. He is not as open as me on this, but if he saw change, he would be the biggest supporter and advocate.

I have been going about my days now just waiting and i'm in a bit of a rut, b/c i am so nervous and scared that this won't be it, and i so badly want my ds to have it (who says those things?!)

 

Now that he slid back my husband, and I a bit too, question whether that was the prednisine working on days 3-5 or was just lucky good days? if it was the meds, then why did he stop showing improvement? should i even think there's more to see. i was told that we need to see change in order to know if it is pandas....

 

thx for reading, and in advance to those who offer words back,

mom2yo

[Chemar]

Hi

sorry it took so long for your post to show....we have a new system to pre-moderate initial posts as we had so much yucky spam showing up!

 

bump[ing this up so other members can respond

[JAG10]

Mom2yo

 

Hi. Quick question....did the improvement stop when you tapered down the dosage? Or was it consistent days 3, 4, 5, 6? My dd11 has done a taper w/Dr B and the first 5 days were the loading dose and day 6 was a decrease. If that's the case, you could ask Dr B to extend the loading dose longer to confirm your observations. I suspect that when kids are really sick for a really long time, it can take a lot to make a dent in the symptoms. My dd was sick a long time too before we did our " steroid burst" test and I had a similar reaction as you. Did I really see improvement? That was 18 months, tons of abx, and 8 ivig's ago. The last ivig we followed up with a steroid taper that got her to normal. I wish it was an easy fix, but it isn't. It's a long road only for the persistent and committed. Even at normal, it is a fragile state....like being a gangster in witness protection, you wince ever time you turn the key in the ignition wondering if today's the day. Sorry, I'm supposed to be supportive

 

Someone said once that those on this board who say it's never too late are the parents of the kids who are too sick and it is too late for. I find that untrue. The first doc who suggested pandas told me my girl had been sick too long (at age 9,) so just treat with psych meds (that never worked long term anyway.) That doc was wrong to say it was too late for my dd to recover. It hasn't been easy, but it was not too late.

 

Jill

[bulldog24]

Sorry to hear of your struggles.

 

A few q's-

 

Any lyme disease or tick bites?

Any periods of being well?

What makes things worse?

any strep throat?

 

Its my understanding that antibiotics are mostly to prevent strep vs. Treating PANDAS. My son was just diagnosed 2 weeks ago so i am still learning.

[PowPow]

I am agreeing with JAG10--

I think you need to see if Dr B will give you a longer course of steroids.

If you started at 60 (for only 15 days)- that does not give very long on the highest dose, correct?

I have 2 kids with PANDAS, and another with probable PANDAS. Between all of them we have done 8 "steroid months". A month = means a week at 60, a week at 40, a week at 20 & on down. Once our PANDAS doc (not Dr did 6 weeks of steroids for a particularily big crisis.

 

We saw improvements at 10 days to 2 weeks with each one- though the sickest & longest affected kid did not show a whiz-bang improvement, except for the first time we tried the steroids.

 

Also, the steroid improvement did not last more than a few months most of the time.

Thinking of you tonight & I am glad you are on the forum. There are lots of people here with very sick, older kids.

[mom2yo]

Mom2yo

 

Hi. Quick question....did the improvement stop when you tapered down the dosage? Or was it consistent days 3, 4, 5, 6? My dd11 has done a taper w/Dr B and the first 5 days were the loading dose and day 6 was a decrease. If that's the case, you could ask Dr B to extend the loading dose longer to confirm your observations. I suspect that when kids are really sick for a really long time, it can take a lot to make a dent in the symptoms. My dd was sick a long time too before we did our " steroid burst" test and I had a similar reaction as you. Did I really see improvement? That was 18 months, tons of abx, and 8 ivig's ago. The last ivig we followed up with a steroid taper that got her to normal. I wish it was an easy fix, but it isn't. It's a long road only for the persistent and committed. Even at normal, it is a fragile state....like being a gangster in witness protection, you wince ever time you turn the key in the ignition wondering if today's the day. Sorry, I'm supposed to be supportive

 

Someone said once that those on this board who say it's never too late are the parents of the kids who are too sick and it is too late for. I find that untrue. The first doc who suggested pandas told me my girl had been sick too long (at age 9,) so just treat with psych meds (that never worked long term anyway.) That doc was wrong to say it was too late for my dd to recover. It hasn't been easy, but it was not too late.

 

Jill

 

Hi Jill,

 

The improvement stopped before the tapering down of the prednisone (which started on day 7).

 

You mentioned that ur dd went for 8 ivig treatments..did u see improvements (long lasting) along the way after each ivig? if not, what made u keep going?

 

also, what do u mean that ur dd was sick for a long time? was it at all similar to what i described?

 

thx for ur words of encouragement,

mom2yo

[mom2yo]

Sorry to hear of your struggles.

 

A few q's-

 

Any lyme disease or tick bites?

Any periods of being well?

What makes things worse?

any strep throat?

 

Its my understanding that antibiotics are mostly to prevent strep vs. Treating PANDAS. My son was just diagnosed 2 weeks ago so i am still learning.

when we had all the bloodwork done, for some reason quest didn't put that test thru even though it was indicated on the blood order. we go back to Dr. B in 2 weeks and his office is now starting to draw blood there, so we will be taking more blood then and will know more in a few weeks in regards to lyme, and how the titers and all the things that r followed up on, are now.

 

As for any periods of being well, over the years, sure there are better days than others, but not specifically long time periods.

 

We are only now aware of the fact that things can make it/him worse..so all these years there's never been anything correlated, no trends, b/c we weren't looking for them. My ds has had strep at times over the years and i'm sure he had a lot of false negatives too.

[mom2yo]

I am agreeing with JAG10--

I think you need to see if Dr B will give you a longer course of steroids.

If you started at 60 (for only 15 days)- that does not give very long on the highest dose, correct?

I have 2 kids with PANDAS, and another with probable PANDAS. Between all of them we have done 8 "steroid months". A month = means a week at 60, a week at 40, a week at 20 & on down. Once our PANDAS doc (not Dr did 6 weeks of steroids for a particularily big crisis.

 

We saw improvements at 10 days to 2 weeks with each one- though the sickest & longest affected kid did not show a whiz-bang improvement, except for the first time we tried the steroids.

 

Also, the steroid improvement did not last more than a few months most of the time.

Thinking of you tonight & I am glad you are on the forum. There are lots of people here with very sick, older kids.

so as it turns out, i made a mistake...my ds started actually on 40mg and had been tapering down from there. the short questionable improvement on day 3, 4, and part of 5 was while he was on the 40 mg. He tapered down to 30 mg on day 7.today was day 10 with 5 days to go tapering down along the way. I will ask dr. B of course, but i heard that he isn't big on giving high doses of prednisone. perhaps he wanted to see if this amount would work? do u think my ds may have needed more and so it wasn't enough to sustan anything? he is after all already a big boy of 17yrs and abt 180 pounds...

[JAG10]

My dd11's illness started in early preschool, making it very difficult to detect "sudden onset." By the time she was in K, she was already on meds for ADHD and she would "hyperfocus" and stare a lot. Things went from concerned to WHAM in March, 2007 spring of first grade. My girl had no medical chart filled with strep infections. I had no clue why she was just getting worse and worse. That summer, we took her to see a psychiatrist and ended up spending the next 2+ years trying all these different psych med cocktails in different combinations and different doses. My dd would get bad mosquito bites, scratch them sore, then pick the scabs til it ulcerated. It was awful. She had tics and OCD and ADHD and restrictive eating. I finally had enough and took her for another opinion. That's the doc that suspected pandas, but said she had had it too long for immunomodulating treatment. But she ran ASO and anti-DNAse B that were so high they were over the lab's tilt measure....and still had never been to the doc for strep: she was completely asymptomatic outside of behavior.

 

So once I knew what I was dealing with....get out of my way! We did labs and abx in Jan, Feb, and March 2010. The steroid burst test was with Dr K in Chicago and her first ivig was May 2010. The anorexia stopped immediately. So did the skin picking and tics. Over several weeks, she was 75% better. Then Aug came and we hit a succession of exposures over the next 8 weeks and with abx got her back to that 70-75% mark, but then plateau. I realized at that point, for my girl who was likely sick 7+ years, the idea of "one and done" was not realistic. She needed more if we were going to get rid of those remaining 25% symptoms which included cognitive fog, ADD and behavioral regression. That's when we sought help from Dr B who had a reputation of good response from insurance. We paid out of pocket for Dr K and knew we couldn't keep that up. Then, we did a few monthly ivig, then this June switched to every 8 weeks. There were illnesses and bumps in the road along the way. But the bottom line is I have a 6th grader holding her own in a competitive school with friends. No psych meds since that first ivig. Well, correction; when we were hovering around 90% and couldn't hold that last 10% ADD stuff, we tried Straterra low dose, nothing; then Concerta low dose- tics one day and stopped. That's when we did the steroid taper that got her to completely normal, independent in school w/o support.

 

You will have to read a lot and seek out members to whom you can relate either personally or by the similarity of your children. There is a lot in common and as much distinction. I also have a younger dd8 with mild pandas anyway, but also treated younger. She has been managed w/o ivig.

 

It's hard to go back now, but when we did the steroid test, I made a list of every behavior I could observe and rated her every single day of the burst. For me, having those numbers to look at made me feel more confident that I did observe the improvement I thought I did that just seems weaker when you are just trying to describe it off the top of your head.

[PowPow]

My daughters ranged from age 6-13 when on their steroids & they each started at 60 mg (maybe the littlest one started at 50mg?). And it was 60 for a week-- then down to 40 mg-- we started seeing improvment at 10 days or so.

So-- maybe we would not have seen the same improvement on a lower dose? Can't say for sure.

If I were in your shoes, I would want to try them again and at a higher dose--

I think tpotter may have sons that are your son's age in similar presentation-- though I might be getting her (I assume everyone posting on here is woman-- sorry to offend any of you men out there!) mixed up with someone else.

[colleenrn]

Mom2yo,

 

What antibiotic was your son on for a month and what was the dose? Some antibiotics arew more effective for strep, especially if the person could have had strep for a while.

 

Colleen

[mom2yo]

Mom2yo,

 

What antibiotic was your son on for a month and what was the dose? Some antibiotics arew more effective for strep, especially if the person could have had strep for a while.

 

Colleen

My ds was first on augmentin 875mg 2x day for 3 weeks initially from pediatrician before we got to Dr. B. Then Dr. b switched him (since we didn't see any changes at all) to Biaxin 500mg 2x aday for a month, then back to Dr. B with no change, he switched him back to augmentin xr 2000mg 2x a day, we r still in the midst of taking that till we see him again in 2 weeks, and also currently on the steriod burst of prednisone (started at 40 mg tapering down).

 

additionally, all of us in my family, besides my ds, went on augmentin for a couple of weeks b/c all of our strep titers were elevated. we are all having our blood drawn again when at Dr.B next so we can see how the #'s went and if we can start seeing a trend. I really wonder what impact all of us may have on my son, as obviously germs can keep circulating, but that can also be from anywhere too (i.e school).

[nicklemama]

I do not have experience w/ an older child but I do want to offer this.....I think when you have a child who's been sick for a very long time, you cannot expect immmediate and drastic results. You are in good hands w/ Dr B. He will see you through. Patience is the key. Look for any small improvements. Hang in there.

[mom2yo]

My dd11's illness started in early preschool, making it very difficult to detect "sudden onset." By the time she was in K, she was already on meds for ADHD and she would "hyperfocus" and stare a lot. Things went from concerned to WHAM in March, 2007 spring of first grade. My girl had no medical chart filled with strep infections. I had no clue why she was just getting worse and worse. That summer, we took her to see a psychiatrist and ended up spending the next 2+ years trying all these different psych med cocktails in different combinations and different doses. My dd would get bad mosquito bites, scratch them sore, then pick the scabs til it ulcerated. It was awful. She had tics and OCD and ADHD and restrictive eating. I finally had enough and took her for another opinion. That's the doc that suspected pandas, but said she had had it too long for immunomodulating treatment. But she ran ASO and anti-DNAse B that were so high they were over the lab's tilt measure....and still had never been to the doc for strep: she was completely asymptomatic outside of behavior.

 

So once I knew what I was dealing with....get out of my way! We did labs and abx in Jan, Feb, and March 2010. The steroid burst test was with Dr K in Chicago and her first ivig was May 2010. The anorexia stopped immediately. So did the skin picking and tics. Over several weeks, she was 75% better. Then Aug came and we hit a succession of exposures over the next 8 weeks and with abx got her back to that 70-75% mark, but then plateau. I realized at that point, for my girl who was likely sick 7+ years, the idea of "one and done" was not realistic. She needed more if we were going to get rid of those remaining 25% symptoms which included cognitive fog, ADD and behavioral regression. That's when we sought help from Dr B who had a reputation of good response from insurance. We paid out of pocket for Dr K and knew we couldn't keep that up. Then, we did a few monthly ivig, then this June switched to every 8 weeks. There were illnesses and bumps in the road along the way. But the bottom line is I have a 6th grader holding her own in a competitive school with friends. No psych meds since that first ivig. Well, correction; when we were hovering around 90% and couldn't hold that last 10% ADD stuff, we tried Straterra low dose, nothing; then Concerta low dose- tics one day and stopped. That's when we did the steroid taper that got her to completely normal, independent in school w/o support.

 

You will have to read a lot and seek out members to whom you can relate either personally or by the similarity of your children. There is a lot in common and as much distinction. I also have a younger dd8 with mild pandas anyway, but also treated younger. She has been managed w/o ivig.

 

It's hard to go back now, but when we did the steroid test, I made a list of every behavior I could observe and rated her every single day of the burst. For me, having those numbers to look at made me feel more confident that I did observe the improvement I thought I did that just seems weaker when you are just trying to describe it off the top of your head.

 

thx for ur suggestion. i will start to compile what will be a VERY long list. My dh read this post last night as well, and told me that my ds who my dh wakes up every morning and then drives him to the bus stop for years, has been waking up lately w/o screamimng at him, and has been better in the car en route to the bus stop....that is a change. He still continues all of his other behaviors, but maybe documenting and rating it will show me more...It's been a rough few months, hoping, waiting. I know everyone says it's a long process and to be pateint. I will try to be, i just want to know he will get better... if I knew in the long run, that will be the case, i'd be so much calmer. The funny thing is that only in the last few months since we started down this pandas path, do i feel all crazed (again)...that's because i see a ray of light and i'm so nervous it will get taken away. With everything we've ever tried over the years to help his behaviors, i would get hopeful or be optimistic, and then that too didn't do "the trick". Over the years with nothing working, i figured this is who he is and over time he will mature and get better. after all, he only is really bad at home and does better hiding a lot of it in front of the rest of the world...but i often wonder and worry of whether he can function normally in the world?

additionally, i wonder if perhaps my other kids have pandas too but in a milder form. I have made all of us patients at Dr. B, not just my ds, so that they can be monitored as well.

 

i know time will tell, and so i continue to pray!

mom 2 yo

[nicklemama]

I completely understand the anxiety and worry that you will be told your child does not have PANDAS. My DS did not have positive throat cultures or titers. I was very worried, not certain he really had PANDAS. We'd seen so many doctors. Now, we are more than a yr down the road from his diagnosis and he's doing well. Have faith in your gut instinct. Things will get better, just not at a rate at which we'd all like, unfortunately.