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Day to day survival tips

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One thing I struggle with the most is the day to day survival having a PANDAS child. This can be from the sadness of seeing how it affects their life, to the sheer annoyance of the tics, to how to discipline. This isn't a post about my vent or just for me. I thought it would be really helpful to have a thread of tips on daily survival with a PANDAS child. It could be anything that has helped you, with any aspect of this. From a glass of wine to discipline techniques to how you explain this to others. Anything. I know I would find it very helpful and I am betting a lot of others would too. So share away!

:)

 

Lisa

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Great idea! Here are some of my survival strategies:

For ADHD/School work:


  •  
  • break homework up into very small chunks. As soon as focus becomes a battle, take a 5-10 min break.
  • Allow physical activity while doing homework. Stand instead of sit, use a squeeze ball while reading, allow chewing gum. Allowing the brain and body to multi-task makes homework easier.
  • As soon as your child gets home, review assignments and anticipate how long it may take, given his/her current abilities. Work backward from bedtime to figure out when homework needs to get started, rather than starting at the traditional time and letting bedtime get pushed off.
  • When homework slides into tears and tantrums, call it a day. Your relationship and having your child know you trust him when he says he just can't do anymore is more important than any assignment
     

For dysgraphia:


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  • Use your home printer to print paper with really dark, bolded lines on it - vertical lines for math, horizontal lines for writing. Place it underneath your child's work paper so (s)he has a guide, without the stigma of using lined paper when peers aren't.
  • If you have a 504, make an accommodation that you or your child can type answers to homework. Focus on the process of learning rather than the execution of the writing.

 

For age-regressive behavior:


  •  
  • When impulse control is non-existent, we use an NSAID on a regular schedule rather than waiting until symptoms have already escalated. During the school year, Aleve can be really helful, as it lasts longer than motrin and can stay effective during most of the school day. At 55 lbs, 1/2 an Aleve is ok. Dosing and side effects of various NSAIDS can be found here: NSAID Dosing

 

For anxiety and OCD:


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  • CBT is extremely helpful for anxiety. Finding a therapist for young children can be very difficult, though younger kids actually seem to adopt the techniques much easier than older kids. Some books that really help are "What to Do When You Worry Too Much" (Heubner), "Freeing Your Child From Anxiety (Chansky)and for younger ones, "Tiger, Tiger, Is It True?" (Byron)
  • ERP is, IMO, the best way to manage OCD over the long term. SSRIs in small doses may also be needed in individual cases, and medical treatment for the underlying trigger is of course needed. But for long term skills and for giving your child a sense of control and your whole family a mindset of not being a victim, I can't say enough in favor of ERP. It may not be particularly effective at the peak of an exacerbation, but over the long term, it instills a perspective to problem solving that can be applied to many aspects of life, even once the OCD is under control. Good books on the subject are "What To Do When Your Brain Gets Stuck" (Heubner), "Freeing Your Child From Obsessive Compulsive Disorder" (Chansky), "Talking Back to OCD" (March) - which is very helpful explaining the parents role, which is not to do the work for the child but to be the coach.
  • Breathing exercises and bedtime massages help with relaxation and also give you a chance for "talk time". Having a designated time to connect with a parent every day can make it easier for a child to talk about fears and turn a bad situation into an opportunity to build a long term, trusting relationship
     

For tics


  •  
  • Some have found diet, EMFs, TV and computer screens - to be triggers. My son swears playing video games gave him relief, as it distracted him. And even tho he may have ticced more afterward, for him it was worth it to be able to block out the urges for a period of time. There are medications but few on the board have reported much success. Although they are very heartbreaking to watch and a very public sign that something is very wrong, it's often the parents who struggle most with tics. Having lived this, I can look back and say the best thing I could have done (but never managed to do) was to ignore the tics and remind myself that tics are better than many other things, like cancer, permanent disabilities and OCD-driven anorexia. Tics are tough, but survivable.
  • There is a therapy called HRT - Habit Reversal Therapy - it's like ERP for tics. Some TS specialists say it works. My child was never in a place where he was willing to try it - again, the tics bothered me for more than they bothered him.

 

For overall health -

Detox, detox, detox. It has been so important and reduced the severity and duration of symptoms in a way I never imagined.

[*] Type up a medication schedule and keep it with your child's medications. List name of medication, time to be given, dosage and whether it should be taken with/without food, away from other meds, etc. Make sure the name of the medication matches what's on the label. Should you even not be available, the person dispensing meds will be looking for "omnicef" per your instructions when the label may say Cefdinir.

 

For siblings


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  • Dates out of the house with a parent, especially the parent who's giving the most attention to the sick child.
  • Therapy to help the siblings understand what's going on
  • When the sick child gets bedtime attention with massages or talk time, it's important that siblings get the same thing. We alternate nights with each kid. One night, mom reads and does the bedtime routine with the sick kid and dad does the routine with the other. The next night, we switch. If you have more than two kids or less than two parents, try staggering bedtimes, or maybe stay up late with one kid on weekends. Carve out time in one way or another. Above all else, special one-on-one time is the most valuable thing you can give to any child, but especially to those who live with a sick brother or sister.
     

For marriages

Respect is probably the most important. You start out thinking you're both on the same page. Then one spouse takes the lead on health and the other focuses on career, the rest of the family and all those other goals you had before the illness. It's easy to reach a point where you no longer share the same reality. It's important to realize that you're each doing your best (hopefully). But it's unfair to expect your spouse to react to things the way you do. Periodic therapy, dates, and frequent communication (about more than just illness) is essential. It's a constant - and sometimes difficult - investment.

 

For yourself

A good cry is a good start. BFFs are essential. A journal helps (using this forum as a journal counts). You need to view yourself as an essential resource. You'd never whip and beat your farm horse and expect it to work tirelessly without time to rejuvenate. You'd feed it, take care of its health needs, show it affection and companionship and give it well deserved rests. That's how you keep the farm running for the long run. Parents like to put their own needs aside, telling everyone they'll take time for themselves once this is all over. Truth is, for many of us this is a multi-year marathon. Self-care isn't optional. Waiting until a nervous breakdown or divorce doesn't do anyone any favors. Sometimes being selfish is the most selfless thing I can do.

Edited by LLM

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Laura- this is excellent work! How do we get it pinned up top?

 

On the spouse issue, does anyone else experience this....you have an intense conversation with your spouse about the concepts surrounding biological infection resulting in behavior. They seem to get it and for the most part, are on board with the treatment plan, helping when/where you ask. You are clearly the conductor of this orchestra, he, idk-the stage manager doing what he is told? Life tramps on and something happens, maybe-hopefully, it's even an improvement in an identified behavior and hubby innocently comments "Yeah, she's really maturing."

 

Maturing???? She is not "outgrowing" this. This is not a matter of Leo the Late Bloomer, dear. Your dd has an illness. Yadda, yadda, yadda. Okay, so when things are bad, he gets it. When I re-educate him, he gets it. But, his default position does not reflect that he gets it at all. Maybe it's denial, probably. But this scenario has played itself tired and I have come to accept it and not argue about it too much. He never gets in my way of getting her the treatment she needs. He follows directions when his help is asked for. Would I be worried about her if I dropped dead, yeah- so to Laura's point take care of you. He is an amazing father, but I have not succeeded in changing his default position, especially in the behavioral, you can't physically see it, types of behavior and his view sneaks out without him even knowing it. I've had to let it go.

Edited by JAG10

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How do we get it pinned up top?

 

My hope is that others will contribute bullets and I'll add them. Once we have a more complete list, I'll pin it.

 

As for hubbies, maybe Worried Dad will chime in and give us insight :D In our house, my DH has an issue with the concept of time. We joke that in his world, something either happened 5 minutes ago, 5 days ago or 5 years ago. Nothing in between. When we discuss the kid's behaviors, he tends to feel that how things are now are how they have always been. So if bad, DS is always difficult (can't remember when he was agreeable a mere two weeks ago). If things are good, there's no urgency to planning ahead. Why can't we just enjoy the "now"?

 

Some merit to his perspective. The reason our marriage works is that he balances me. So I have to remind myself to appreciate his views even when they're not the way I see things. The truth may be somewhere in between.

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I am so glad you think this is a good idea! I know I could use a list to refer to now and then.

 

My tip that helps with my 8 year old is to realize he is not functioning like an 8 year old. If I dial back my expectations a couple, or even 3 years, things work much better. I discipline as if he was a younger child and even talk to him as if he was younger. It makes me sad to admit, but it works better when I try to talk to him like a preschooler that wants everything their own way and who favors the word no. I don't talk in a cutsie voice, of course. But if I can convince him something is a good idea, or his idea, things go much easier. I also simplify any requests of him, giving him one bit of information at a time. Otherwise nothing gets accomplished. If I want him to get ready, I literally tell him to pick out his clothes. THen to put them on. Then to brush his teeth, etc. Tiring, but less tiring then yelling.

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Great idea for a thread! My son sits on one of those large exercise balls when doing homework, so he subconsciously is constantly balancing himself as he works. Or I use one of those vibrating massagers on his back as he works - basically the opposite of what a typical kid would want - distraction while working! As for coping with the constant draining of your emotions, I like the glass of wine at the end of the day remedy!! Seriously though, when my frustation levels build, I always think of how much worse off he could be. Sad to say, but I'm sure everyone knows of other kids with either terminal or severely disabling conditions and at least we have some fun periods in amongst the rages. Looking through photo albums of fun occasions also helps and finding joy in the moment when he hugs you or acts silly and immature but still makes you laugh, just accepting him for his quirky, uniqueness and accepting that he doesn't have to fit into the square box of life!

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Just wanted to comment on the distraction while doing homework bit--I always needed my music playing loudly to get my homework done. It wasn't defiant, teenager playing her music too loud--it helped me get the work done. It was actually considered for my 504 at one point before I left school that I should be allowed to listen to my iPod during quiet work times and tests at school.

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A good night's rest. Turning the computer off at a reasonable hour (the research can wait til morning). Unfortunately, I'm guilty of not following my own advice. ;)

 

I am so guilty of this myself. It is my quiet time, my down time. I don't always research, but I do fight going to bed when the house is totally quiet. I need that down time.

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LLM - beautifully written.

 

When I need to get sane, I take my pandas son out. My son always liked to go out and do things and it is one thing pandas has not taken away from him. Take him to a restaurant - he is perfectly behaved. Take him shopping while I look for clothes for ME-he is patient and happy. Take him to the grocery store-super helpful. Take him out in the city-loves it. Keep him inside-he goes insane. I remember during his overnight onset he said, "I have got to get out of this house." It has never changed since then. I think he is scared of the house and his bedroom because of all of his hallucinations during onset. He now sleeps in the guest room.

 

I also get lots of "me" time. My husband and I are selfish and spend lots of time with each other without the kids. If we didn't - we would go insane.

 

And JAG10- I totally agree with everything you said. I was laughing reading it. You live my life.

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Just getting the kids showered so i'll post quick (great topic by the way!!).

 

For our son - our biggest miracle has been his sensory swing (like a hammock hung from a single hook - it's used in OT). I think it was someone here that suggested it, but it has single handedly taken rages from hours long to mere seconds! It may or may not work for older kids,but it has literally been our lifesaver!!

 

For us, weekly date nights - we get a sitter if we can afford it, usually after the kids are already in bed around 8 ish, and head to our favorite local place for a couple of drinks, gets us out of the house and together. That combined with alternating weekly moms/dads night out have been essential for us. I'm not going to lie, sometimes my big night out consists of me, alone, with a book at Starbucks. Nothing exciting, but essential recharge time for both of us.

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Emmalily - thanks for the reminder. DS insists the iPod helps and I resist. I will lighten up (sometimes).

Tampicc - yes - my son rolls on that exercise ball incessantly - drives DH nuts - but saves the couch! And I love the melatonin before nighttime googling! Like Philamom and Lisa, I am so guilty of staying up past midnight - partly due to the research obsession and partly just for the "me" time in the quiet of the night.

 

Would love some more school ideas, especially this time of year.

 

I'll also toss out some health ideas -

Toothbrushes - always toss toothbrushes 2-3 days after starting an abx for a new infection. Store toothbrushes so they don't touch each other. Replace frequently, consider sanitizing in boiling water or with peroxide on a "regular" basis, consider giving your PANS child his own toothpaste (doesn't everyone drag the tube across the toothbrush - source of cross-contamination).

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Just getting the kids showered so i'll post quick (great topic by the way!!).

 

For our son - our biggest miracle has been his sensory swing (like a hammock hung from a single hook - it's used in OT). I think it was someone here that suggested it, but it has single handedly taken rages from hours long to mere seconds! It may or may not work for older kids,but it has literally been our lifesaver!!

 

For us, weekly date nights - we get a sitter if we can afford it, usually after the kids are already in bed around 8 ish, and head to our favorite local place for a couple of drinks, gets us out of the house and together. That combined with alternating weekly moms/dads night out have been essential for us. I'm not going to lie, sometimes my big night out consists of me, alone, with a book at Starbucks. Nothing exciting, but essential recharge time for both of us.

Wow! You get your kids in bed by 8?!!

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