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a few thoughts

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I have been reading this board for a few weeks now and I've looked back and all the interesting stories. Sometimes I wish it were mandatory to post follow ups-- because I find kids EXACTLy like mine-- but then they don't post anymore...and I think.. well what happened.. are you cured? was it PANDAS?


Unfortunately the more I read the more I seem to forget. I think that I am now just completely exhausted and probably still grieving the loss of an easy going/laid back family. I know not to do it -- but sometimes when I'm out and I see a kid that's so naturally together and 'with it" -- I start with the "why us?" These kids stay up late, eat pizza and doughnuts all day, and are completely fine!


When my son was 7 we did the OCD thing-- but then the compulsions went away for almost 2 years. In the meantime I had learned to accept that my ds was an intense child and had certain quirks. But since IT (whatever IT was) was no longer glaring at us-- I could handle it. I knew I had to make sure he got enough sleep, enough excercise, nutrition. I knew I had to keep him balanced more than most parents have to do (I knew because thus far my other son is much easier and more flexible). But I could handle that. Now with the return of the compulsions I feel so overwhelmed and the sadness comes flooding back.


He improved with Omnicef but the compulsions are still present. It's this "just right OCD-- tapping-- evening up--retracing steps--" His body seems to be so hypersensitive. It's better- but he's not cured and so we go on.... We had a phone consult with Dr. T and had tons of labs drawn on Monday-- no results yet. In the meantime, as I wait, I keep thinking--CONSTANTLY thinking-- seasonal allergies, food allergies (he's been getting the red ears and he's also flicking them a lot), fish oil, probiotics, antibiotics, what is going on....Should I do the elimination diet, should we go see an allergist, an ENT (he has noisy nose breathing), should we drive 3 hours to a PANDAS doc NOW-- or wait to hear back from Dr. T. first. And what does "better" actually mean anyway? He's functioning. I'm the one losing it. I don't see that this roller coaster actually ever ends-- for those of us with later diagnoses (I'm assuming if I had caught this at age4 or 5 or whenever the initial insult was-- we'd be in better shape).


I guess what I'm asking is-- how do you all do this? where do you get the strength?

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You've touched on something I've been thinking about lately and that's the impact this thing has on parents. We focus so hard on our sick kids, obsessively so, since our conventional medical community are, more often than not, clueless when it comes to PANDAS/PITAND/LYME/etc. We field too many health practitioners who are little gods in their own minds and judge us as 'mad mothers', and ignore what we tell them about what we've seen in our kids, who really don't know what to do and give up on our kids and us. Add that to the stress of dealing with mystifying and often frightening behaviours we know weren't there before.


We have to hang in there because who else is going to do it if we don't? Our whole world is taken over by PANDAS research and dealing with our kids. We put our lives on hold and we often have to contend with the fall out from disbelieving family members and friends, which adds to the stress...and lets not forget the $$$!


It has a toll. I admit to having panic attacks whenever my son went PANDAS. The stress is awful and my son is not as severely affected as many on this forum. I think I better understand Post Traumatic Stress Disorder (maybe without the Post bit just yet...)


We look after our kids but who picks us up after our meltdowns, panick attacks, and whatever else? Gosh you're lucky if your partner/best friend/parent gets it and can pick up your pieces and give you some time out.


We PANDAS parents need to look after ourselves so we can stay strong for our kids. I'm a fan of alternative practitioners, such as a good naturopath or a homeopath, or a Biomed/DAN! doctor. They seem more likely to 'get' PANDAS even if they've never treated it. I ditched our family doctor when he tried to put us all on SSRIs and I found a medical doctor with both Biomed/DAN! and homeopathic training who realised what the toll was on me and organised blood tests, gave supps and got me to a better place. (It also helped that he supported our PANDAS doctor.) I also organised sessions with a psychologist for me (My DS saw a different psych in a different practice) and it just helped to vent, talk through what I was going to do next, and helped give some perspective.


Yoga is good, sport of any kind is worth the investment. Don't let go of the things you need to do for yourself.


As for the last part of your post...So glad you're consulting with a PANDAS dr.

I'm a fan of Biomed/DAN! practitioners - is there one near you who could support Dr T in this? Things like the red ears (phenols maybe?) would be seen in context by a Biomed dr.


Hang in there! You are not alone!

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I know where you are, I have been there. I actually strayed from the forum for a while but I check in periodically. I was in a very bad place last year and when you start to get better, I guess you just really want to move on and get back on track. I check in for this reason though, I have been where so many other moms are just coming into. I have a 9 yr old dd. She had some on and off mild issues from a very young age. Now, in retrospect she was sick for a long time. Just after her 8th birthday she went crazy pretty quickly: very defiant, aggressive, fidgety, ticcing, OCD.. then within 1 week she started panic attacks, severe phobias, full body jerking.. came across PANDAS and KNEW that was it. Started treatment with antibiotics and saw some dramatic improvements but I was to anxious to get off the abx. and whenever we stopped, she slipped. We did 4 high dose IVIG over 4 mos last summer. MAJOR herxing after the first. I would say we saw a definite improvement in baseline personality with IVIG but still alot of tics and OCD. I was so skeptical of lyme but I saw that ALOT of PANDAS kids were getting that diagnosis. I didn't act on it, but kept the lyme card in my back pocket for a resource if we didn't get better. I couldn't bring myself to buy into it. Something kept nagging at me about it, then one day I found a tick on myself in the shower! I wasn't ANYWHERE near a wooded area, I considered it Divine Intervention and decided I would educate myself as much as possible before the possibility of testing. The more I learned, the more curious I got. I went ahead with the test and didn't even know what answer I wanted to hear.... It didn't seem any better of a diagnosis than PANDAS and I was at the end of my rope. Well, we got an Igenex positive for CHRONIC infection. I of course had this done at a LLMD, which by the way was the FIRST doctor through all of this that I felt I could sit back, and put my trust in him. I am a nurse, I am VERY skeptical of doctors, and I often (mostly) find myself telling THEM what we need to do. This was the first doctor who took an initiative and made me feel secure- and he WANTED to help us (thats a novel idea for a doctor nowadays huh?) Anyway, we are doing GREAT!!! Mild flares every 4 wks or so, but I haven't seen my dd TRUE personality in many many years. It was only a matter of starting another antibiotic in conjunction with the other one. I DO feel IVIG gave us significant improvement, but that makes sense even with the lyme. I did get caught up in the worst of it doing 7 pills a day (supplements, meds,anti-yeast, detox), crazy restrictive diets, researching so many herbal therapies, cranial sacral therapy.... basically grasping at straws. In my personal opinion, it was ALL fruitless. I got fed up, stopped everything, even abx, but that only lasted 2 months.. I know now they were the ONLY thing we actually needed out of all we were doing. NOTHING else made a difference. I stopped stressing her and myself out with the crazy diets, she just eats healthy (she always has), NOT RESTRICTED. I kept her involved in activities as much as possible, IT SO IMPORTANT to not take away the things that make them feel like a NORMAL kid. If we had to leave, we left, but at least we tried. Most importantly for us, we kept FAITH, Faith that there was a plan in this suffering, and there was. My daughter is AMAZING! STRONG, WISE, SELF AWARE.... She knows she doesn't want to rush to grow up because her childhood is precious, she feels she lost some but now is enjoying it to the fullest. I prayed so hard for guidance, and I got it.. I wish you all the best- ALL OF YOU!! Feel free to contact me if ever you need :)

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The short answer is that you find the strength because you have no other choice. But there are things you can do to help.


First, having a doctor(s) who supports you is critical. It takes away a lot of the anxiety that comes with feeling like the survival of your family, your marriage and your child's health sits solely on your shoulders. However, having been at this for way too long, I can tell you that you never get to hand over the car keys and let any doctor take over completely. We too have found that doctors who follow a more integrative approach have been able to help us more. But the days of being able to let someone else be the case manager are over, regardless of their approach. You have a new job from which you cannot resign.


Second, having a support system is equally critical. The rate of divorce is high in the general population. I imagine it's even higher in families that struggle with health and mental health issues. You cannot do this alone and you should try as much as possible to bring your family and your support group along with you as you discover, process and adapt. Otherwise, it's really really hard to stay on the same page with the rest of the world.


Third, this disease will permanently change how you view life, but you can't let it become your sole identity. You have a child with Pandas, but your child continues to be so much more than Pandas. Don't lose sight of the big part of him or her that has nothing to do with illness. I think one reason some people leave the forum is that you need to move beyond cyber world and live life. This forum has a role - to educate, to support, to explore ideas. But you still need to nurture all the aspects of your life you had before this happened. At this point in your journey, this probably seems impossible. But always keep it as a goal. It's good that people move on. No offense to any of the friends I've made here, but I can't wait for the time that checking the forums becomes a distant memory. :wub:


What you're going thru is an evolution. Big growth doesn't come painlessly. Keep learning as much as you can. Question everything. Try not to become married to any one idea or solution. I don't think there's one "cure" - no holy grail at this point. But I do think there are individual answers, things that work for individual kids. Your job is to find that unique answer for your own child. Could be strep, could be mycoplasma, could be lyme, could be something else. At times, it feels like time is the enemy, that you have to figure this all out NOW and there needs to be ONE answer. It may not be that simple. But try not to lose yourself or the rest of the family in the process of discovery. It's a balancing act. But you can do it.

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Well, I find myself sitting here with my fingers on the keyboard trying to figure out what to type. I see the word "strength". All parents on here are strong, whether they realize it or not. Feeling helpless, crying, feeling like you're mourning the loss of your child is not weakness, it's normal and expected. But when you choose not to walk away, not to abandon your child just because you're tired and overwhelmed...that's strength.


Does it get easier, honestly, that's not an easy question. Maybe the answers to type or cite flow easier, but it's also becomes harder in that you know what your child may need and being scared they may not be able to get it. It's scary if they are better and you fear you will lose them again. I guess your life just changes.


Right now, as you wait for lab results, you feel you are in limbo not sure what you're suppose to be fighting. It's a day to day struggle.


You mention the return of compulsions, I would ask how bad they are. If he could have had residual OCD all along and it's taking back hold of him. Have you learned any coping skills for OCD? How fast is it all coming back? Also, how is the health of the rest of the family. You could test everyone else to see if he's reacting to some type of exposure while waiting for his results.

Edited by Vickie
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