Is there a "Cure"?

[T_Anna]

I guess CURE is the wrong word. But he slipped so fast from October to December and now I'm starting to believe we'll never get him off the couch : (

 

DS 14 was diagnosed with PANS/PANDAS by Dr.T this past November 11/2012 [strep. Coxsackie and Mycoplasma]. But we had started seeing body convulsions and what we learned later was scrupulosity (and OCD)in June of 2011. This past summer/fall the OCD started to get really crazy. Since November DS has been on many different abx (Biaxin, Augmentin, Clindomycin, Refampin, Doxycycline and Azithromycin) as well as Valtrex. Starting in November we were doing a ton of CBT and basically the OCD was just moving from one thing to another. In the beginning of January he shut down, he stopped going to school or doing anything associated with OCD (no shower, leaving the house, etc). We stopped the CBT as it wasn't helping. We later realized that he was getting strep again and again and his numbers for strep and coxsackie were rising.

 

Two weeks ago (17 days ago) DS had an IVIG. Pros: He looks better, has better energy, is more animated. Cons: He still hasn't showered, changed clothes or left the house. Is there hope? Have others been through this and gotten better? When we try to push him in any direction he breaks down and cries. I dread that he'll turn 15 lying on the couch.

 

Yes, I know IVIG needs more time, and that sometimes more than one IVIG is needed. It's just hard to watch. Another week has started and DH and I struggle anew to work and take care of DS (as well as get our two younger kids to school, etc). Honestly, I am depressed all over again.

 

Any advice, stories, links to blogs or personal stories are greatly appreciated.

 

Thanks as always,

T.Anna

DS 14 (4/1998)

Edited March 4, 2013 by T.Anna

[Mayzoo]

I guess CURE is the wrong word. But he slipped so fast from October to December and now I'm starting to believe we'll never get him off the couch : (

 

DS 14 was diagnosed with PANS/PANDAS by Dr.T this past November 11/2012 [strep. Coxsackie and Mycoplasma]. But we had started seeing body convulsions and what we learned later was scrupulosity (and OCD)in June of 2011. This past summer/fall the OCD started to get really crazy. Since November DS has been on many different abx (Biaxin, Augmentin, Clindomycin, Refampin, Doxycycline and Azithromycin) as well as Valtrex. Starting in November we were doing a ton of CBT and basically the OCD was just moving from one thing to another. In the beginning of January he shut down, he stopped going to school or doing anything associated with OCD (no shower, leaving the house, etc). We stopped the CBT as it wasn't helping. We later realized that he was getting strep again and again and his numbers for strep and coxsackie were rising.

 

Two weeks ago (17 days ago) DS had an IVIG. Pros: He looks better, has better energy, is more animated. Cons: He still hasn't showered, changed clothes or left the house. Is there hope? Have others been through this and gotten better? When we try to push him in any direction he breaks down and cries. I dread that he'll turn 15 lying on the couch.

 

Yes, I know IVIG needs more time, and that sometimes more than one IVIG is needed. It's just hard to watch. Another week has started and DH and I struggle anew to work and take care of DS (as well as get our two younger kids to school, etc). Honestly, I am depressed all over again.

 

Any advice, stories, links to blogs or personal stories are greatly appreciated.

 

Thanks as always,

T.Anna

DS 14 (4/1998)

 

 

My daughter (11) was lost to us in September 2011. She stopped talking for 3 months, and she slept only about 20 minutes at a time and was awake screaming/hollering for 2.5 hours. Even now, she still will only whisper when she speaks, and we have no real idea why. I have not heard her normal voice since July 2012. There is hope, I am certain of this. We are trying a ton of herbalistic things right now since I really want to boost her immune system rather than wait for an infection.

 

Good News: We are at about 85-90% of normal now. She will bathe without a huge fight, she has slept through the night several times this week. She goes outside with me and has fun while out there. We hear giggles far more than her vocal tic of hollering, and she is energetic and happy most the time. She goes to bed without a fuss as long as we leave the light on for her to read until she falls asleep. Most of the symptoms are improved or gone. We just had a T & A on Feb. 20th in the hopes that will help us clear infections. It appears that has gone pretty normally without inciting any flares or worsening symptoms yet. We are going to see an immunologist who is PANDAS friendly on the 4th of April, and see if we can get any more pieces to this puzzle figured out. To date, we have only pursued ABX and one time a steroid burst.

 

 

Bad News: In the last year and half she has had the initial outbreak, and two major flares since then. Each flare is different in how it presents, but some things are consistent. She is anxious, separation anxiety is high, and nightmares return. The rest fluctuates. We almost reached 100% in July 2012, but she got sick again.

 

 

 

So you can get an idea of how far she has come, here is a "short" list of the problems that developed overnight for her:

 

(This list is from 10-2011)

 

Symptoms (all new since onset, so likely unrelated to other conditions)--some are slowly improving with time and lots of work:

 

* Insecure, clingy. I cannot go to bathroom alone any longer.

* Frequent spills of her drinks

* Difficulty transitioning from room to room everywhere including our house.

* Increase in sound sensitivity

* Selective mutism (no speaking) 98% of the last 3 months. Called selective because she mouths words sometimes when she reads and if forced, she will speak in a whisper. About 7 days ago she began speaking again (less than normal), but 90% of the time in a whisper.

* Despite not speaking, she does "holler" all day and part of the night even when asleep (Holler is like a moan/crying out combined--not screaming, but louder than talking.)

* Complains of pain in ankles, knees, left hand, and shins.

* Sleep difficulties:

* Wakes up numerous times in the night "hollering/screaming" wanting to get up. Now that she is speaking a bit again, she says she had a bad dream and "can't go to sleep"

* Going to bed is now traumatic from the get go. Once in bed she 'hollers" for up to two hours until she finally goes to sleep.

* When she wakes up, if allowed to, she will lay in bed and "holler" for up to two hours before she gets up and begins the day.

* Will not get herself up out of bed at night or in the morning in any timely manner (takes hours).

* States I cannot brush her teeth (she has never completely been responsible for brushing her teeth-but never fought tooth brushing before).

* Very light sleeper now, wakes up with even tiny noises in the house.

* Frequently day/night incontinent. States she cannot pee or poop in the potty.

* No longer wants to go outside.

* No longer will get in the car without a fight/emotional upset, crying.

* No longer will shower or bathe without a fight/emotional upset, crying.

* No longer will wash hands without a fight/emotional upset, crying.

* States her daddy cannot love her. Has stated others cannot love her too.

* She will not eat lunch/dinner unless coerced or bribed. Dinner is traumatic even if when she says "I can't eat" I tell her "then don't eat".

* She will no longer read out loud to me. She never read quietly until this happened.

* She fights tooth and nail through school work.

Edited March 4, 2013 by Mayzoo

[Hayley]

My DD7 had IVIG at the beginning of December and she is, with a few small blips here and there, back to her old self. I would say it's been about a month now that she is really back to baseline most days. We've definitly had days when she is "off" but they seem to pass pretty quickly and thank goodness have been few an far between (insert aggressive knocking of wood here!). She was not at her worst going into the IVIG, but deinitely had major challenges at that point. We started seeing gimpses of the real her (more present, eyes looked like our girl, short fuse began to disappear) within the first couple of weeks after IVIG, but she was still really struggling trying to overcome her OCD, anxiety, sensory stuff, etc. Similar to your comment about your son breaking down and crying, for several weeks post IVIG, we found that we would try to push her or she would try to push herself, and the experience of trying to and failing to overcome the urges was really hard on her. She would get EXTREMELY sad and cry for hours. As the weeks passed, she started to become amazingly articulate (for her age) about how very hard things were for her. I think she was starting to come out of the fog and coming to terms with how stuck she was. This DID PASS and little by little, her PANDAS behaviors have dropped off. Try to hang in there. It takes time. As for whether this is a cure, even as good as my DD is right now, I worry daily that we might have a set back and watch her like a hawk. I guess only time will tell. But whatever happens, I feel comfort in knowing that we were able to get back to baseline with the IVIG and I would do it again if necessary.

[Ebersolk]

Have you tested for Lyme with Igenix? When strep keeps coming back or is chronic, Lyme can be the culprit.

[mdmom]

Dr. T is great. Many on this forum including myself have him as a part of their child's treatment team. However, I stand firm on this: You need to find a doctor, preferably an LLMD, that will look more closely at underlying infections and develop an aggressive, yet methodical approach to treatment. You have been treating since November with a lot of different things; however, dealing with some of the infections your son has takes time and patience. Mycoplasma is particularly hard to treat.

 

Also, have you considered yeast, detox, methylation issues.

 

IVIG could help over time, but underlying infections MUST be dealt with before you will see sustained healing.

[LNN]

If you're looking for a desperate story with a happy ending, you can read Saving Sammy by Beth Maloney. Her son was very sick for a long time and it took two years of antibiotics to get him well. He's now in his 20s and recovered.

 

Some of us have been on this board for a long time and each of us has found significant success - but in many different ways. There's no one size fits all. I think you do need to give IVIG a certain period of time before you judge. Sometimes it takes time. For some, it isn't their answer. Some have turned to multiple doctors for different perspectives. I know you've tried many antibiotics but it doesn't seem like your son has been on any of them for an extended period of time or on a combo. There are also other things to test for that can prevent a sick body from getting well - such as pyroluria, mold toxins, toxoplasma gondii, parvo virus and others. No single doctor is an expert on all these things. Sometimes it takes a very deep well of perseverance and resources to finally find your root cause.

 

But don't give up hope. The answers are there. It took me 2 yrs of chipping away to get to a major root cause (lyme in my son's case) and another year before we found another major root cause (pyroluria). Then an additional year of more treatment to get to a pretty nice place. It took two years on a different path to find different answers for my daughter (methylation issues).

 

It's not an easy journey. But the payoff for not quitting is indescribable.

[michelew]

I just wanted to say that I feel your pain, and my heart breaks for you. I am going through a very difficult time with my son (13), too. He's been sick for over 2 years, and hasn't been able to attend school in over a year and a half. He right now is in his room, (he's been there for over 3 hours), crying and screaming while trying to put his clothes on. He refuses to let me help him, as this interferes with his "processes." He does not bathe himself, does not go to the bathroom on his own, and does not brush his teeth, either. My husband or I have to do everything for him. Although, he refuses to allow us to dress him, and this is why he spends hours getting dressed on his own. He puts his shirt on and off (I don't even know how many times), takes his underwear on and off, and does the same thing with his pants and socks. Any way, we also did IVIG about one month ago, and also did high dose steroids. So far, we have seen very little benefit; however, the first time we did IVIG, we really did not see much improvement for two months, so don't give up. Hopefully, you will start to see improvements; however, the process can sometimes be very slow (like watching grass grow.) Hang in there. My thoughts and prayers are with you.

[MomWithOCDSon]

Like the others have said before, I too can feel your pain. I think there's a natural tendency for us to want faster relief, faster recovery. I mean, after all, some of our kids fell into this abyss overnight, or within a matter of weeks, so why does it seem to take so much longer to get them back? I don't know, it just does.

 

I'll also echo LLM . . . these is no "one size fits all" on intervention and recovery, and I think, at least anecdotally, that most of us have found it takes some combination of interventions in the end. You're seeing some improvement in mood, health and energy, so revel in that and exploit it as much as you can . . . make the most of the momentum that might grant you. At the same time (I know it sounds like a contradiction), try to stay patient. Most of the time, this is a marathon, rather than a sprint.

 

When it comes to some of your son's more troubling behaviors, i.e., not showering, not changing clothes, holing up in the house, I would really encourage you to try and find a good exposure response prevention (ERP) therapist, or potentially do some reading/studying ("What To Do When Your Brain Gets Stuck" or anything by Dr. Aureen Pinto Wagner)and see if you can conduct some in-home ERP exercises to help "bump" your son out of that particular rut. In our experience, some of that behavior is due to avoiding the task (showering, for example), because there are some rituals and/or compulsions that the task inevitably calls for that are distressing, and the menial task also becomes mentally and physically exhausting because of all that distress and anxiety. But therapy really can help, especially if the other interventions (IVIG, etc.) are helping him gain ground elsewhere.

 

The sad truth is, even with improving immune health and mood, some of that avoidance behavior may become habitual and harder to break through because it takes on Boogie Man proportions over time . . . the longer it's avoided, the bigger the monster can become, completely disproportional. Unfortunately, as our kids start to heal, then, sometimes we're required to be "cruel to be kind" or "tough Mom" to help them get over those hurdles.

 

Hang in there!

[smartyjones]

I guess CURE is the wrong word. But he slipped so fast from October to December and now I'm starting to believe we'll never get him off the couch : (

 

 

yes, i think 'cure' is the wrong word. and while you are in the midst of the 'dark days' now, i am confident there are bright days on the other side of the tunnel for you and your son. you are relatively still new in the timeframe of your diagnosis and treatment. you will reach a time when you have more of a set plan and you know what to pay attention to and have some tricks in your arsenal to throw out at it.

 

my ds was diagnosed almost 4.5 years ago - when he was 4.5 -- so half his life ago. i'd say he was sick with symptoms, exacerbations and remissions, us trying to figure things out for about 2.5 years. he's been on a very good healing path for 2 years. during those 2 years, there have also been ups and downs but we've been on much more solid footing to know what's happening and having a good plan of what to do to try to curb it

 

the other day,i was trying to explain something to my sister about 'just right' OCD and i was having a hard time remembering some of the phrases ds used to say and with finding examples to tell her. i do remember the feeling that we were in a big abyss and were never going to get out -- but now, i can't really remember the particulars of the hole. of course i could easily find them in my copious notes and binders -- but i'll leave them be for now. this month, he's just experienced going to his first sleep over party, (which went very well - with a family we don't even know well!), went to school without a word 2 days last week that his brother was home sick, is today happily going to an after-school activity by himself that his brother dropped out of, is doing very well in school academically and socially, and has some quite good problem-solving skills for an 8 yr old.

 

so yes - i believe you will get him off the couch. maybe not today or tomorrow - but you will. although we don't see dr t, i have great respect for him and that he will help your son. you will find the plan(s) that you need and at some time in the future, you, too, will have to grasp to remember what is so burned into your experience today.

[T_Anna]

Thanks for all the replies. It really does help to read these and see that there is a light at the end of the tunnel. Please keep them coming as it is so helpful to read experiences and know it can get better (even much much better than before).

 

Mayzoo, thanks so much for sharing your daughters story. I'm not sure we would recognize our son at 80% since we believe it's possible he's had this for years and years, it would be very exciting to see that level of improvement.

Hayley, I will try to be more patient. I just see his friends a lot and hate that he is missing all these "regular" teen kid milestones.

Kerry, we have only tested Lyme on the regular test.

Mdmom, I have been thinking about an LLMD, it will be a challenge since it is impossible to get him out of the house to go see any doctor, but I will start calling and maybe we'll be able to get to an appointment at some point soon.

LLM, Regarding giving meds more time, I agree. For example DS was only on Augmentin for 10 days. I think we were hampered by our timing (Dr.T's mother became sick around the time I started figuring out how to help DS) and we were stymied by some questionable advice from our ex-therapist. Hopefully, we'll be able to get more on track now.

Michelew, hoping we both have better stories soon.

MomwithOCDson, I ordered two books (the brain gets stuck one and dr.pinto's). It is unfair that he could spiral in a month and it takes months and months to get better.

Smartyjones, I dream about DS getting better and celebrating by throwing out that couch!

 

This afternoon and evening was better than we've had in a while. I will try and follow your advice and enjoy the good moments.

 

Someone had suggested reading Saving Sammy and after reading it, i bought copies for my whole family and school administrators and the school psychologist, etc. But it's more personal to be able to actually "talk" to parents going through the same experiences (or similar).

 

Thanks as always, I'd be lost without this forum.

T.Anna

[T_Mom]

T.Anna,

Wanted to add my encouragement to the kind comments so far.

 

I beat this drum about two years ago on the forum, again and again, and am needing to remind myself of it again now!

 

Brain healing takes time...

 

Be encouraged, greatly encouraged by the week-to-week TREND, and write down notes (if you can stand to), so you keep track of the little, tiny changes when you see them. As long as it is 2 steps forward, 1 step back, you are going in the right direction!

 

It is not necessarily the big changes, but the trend of continuing better-ment (is that a word?) that we should watch. Are we moving in the right direction?

 

Yes, it sounds like you are -- as an aside, it can take weeks for IVIG to kick in, as many of us have experienced. Hold steady, give it time, and as needed you will know if the trend is not going in the right direction.

[MomWithOCDSon]

It is unfair that he could spiral in a month and it takes months and months to get better.

 

I could not agree more! Makes me angry, too!

 

My mom always told me (maybe yours too), that "Life isn't fair," but to see that platitude lived out before your eyes, by your child, is painful beyond measure.

 

It can, and will, get better. Hang in there.

[Ebersolk]

I do think you should follow up with LLMD if you can. My daughter tested negative on western blot but then when we did Igenix and the co infection tests. Her Igenix Lyme while negative according to the CDC had several indeterminates and other CDC non-lyme positives. The co infection test showed she was positive for Bartonella and Erhlichia. We followed up with a LLMD who diagnosed her with Lyme. This was over 2 years into our journey but I am not sure that the undiagnosed Lyme is not what started our auto-immune process in the first place. Since then we have been actively treating the LYME and while not a 100% she is much better. Kerry