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mild PANDAS, husband not entirely on board...


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Hi,

my son was diagnosed with pandas 1 1/2 years ago with the onset of physical tics, behaviors and now verbal tics and more behaviors....

I am so tired of my friends, family, neighbors and even my husband questioning my parenting skills and seeming to blame a lot of my son's behaviors on me! It is hard to continue to be confronted about all of this. My son has a mild case of pandas and I believe that he keeps a lot of his adverse behaviors for when he is with me because I am his safe person. Many of my friends, neighbors and family cannot even believe that he has pandas because they do not spend enough time with him to be around for his irrational, aggressive, out of character tantrums, etc.

They have rarely seen his tics because they are not severe.

Even my husband cannot distinguish what is normal 5 year old behavior and what is pandas with our son. I can easily tell when my son is "not himself" and is acting in response to an "inflamed brain." My husband thinks that I have caused my son to be whiney and oppositional until he gets his way because I give in too much to my son's demands. But I give in to my son's demands at times because I know that they are more ocd driven and pandas influenced than my 5 year old trying to manipulate me into something. I do not have power struggles over something that will take 45 minutes to resolve when it is benign and fueled by pandas and not by conniving boy. I believe in peaceful parenting, not authoritarian styles of parenting.

How can I convince people that it is my son and his pandas and not my mothering?

should I videotape his outbursts that he has with me?

should I not protect him from public meltdowns by preventing them with occassional isolation or ibuprofen?

Should I see a therapist? any suggestions as to what kind? or a family psychologist?

My son currently has echolalia (quietly echos people's speech) at times. I am not causing that! Some of the pandas stuff is very objective. It's the subjective behaviors that are hard to filter into regular kid stuff and pandas. But I hate to see my son suffer when my husband tries to hold his ground and make him "brush his teeth" when my son is digging in his heels in what I think is oppositional behavior fueled by pandas.

I hate this!

Suggestions?

Do you experience these things too?

And how many parents/families are struggling without even knowing that pandas exists?

Basilbeth

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When I read your post it really hit home. Even though dd was very obvious with her behaviors when she was in her massive flare in the spring, we seem to be constantly "discussing" her minor flare symptoms.

 

For example, she started getting a cold last week - first sign was that she had a facial tic with her tonque going in and out (she has never done this before). My gut told me something was up - sure enough, the cold physical symptoms kicked in, facial tic became severe right around the time the fever came out. We rushed to our ND for an immune treatment/boost - tic went away, the cold physical symptoms still here, but nothing else indicating her usual PANDAS type symptoms (which we are celebrating - all the money, work, and time with ND is paying off for us!!)

 

That being said - the first thing dh says is maybe she was just being goofy. He is in denial and "forgets" what her symptoms actually were in the spring. He wants her so badly to be "normal" - he gets very defensive if I even bring up PANDAS currently. I don't think he can accept that the child we once knew is pretty much gone, and hasn't adjusted to the new reality. It is very hard as we are going into prime bug season, and I'm not sure he is prepared for what is coming our way.

 

I did audio tape dd in one of her rages, and played that for family. We all live very close, so they have gotten to spend lots of time with her over her 4 years of life. Even they were surprised to hear it. dd often only does symptoms at home, and I find it almost frustrating that daycare will comment - she's normal - when as soon as she would get home she would ritualize, tic, rage, and hallucinate (bad symptoms in spring). It's like she held it together there, and then could not hold anymore at home, so when the dam burst here, it was worse then it would have been if she could have just been home all day and spaced it out....

 

Questioning of the parenting is so difficult to deal with, and I have been working soooooo hard not to take it personally. "Put her to bed at the same time", or "don't feed her sugar", or even better "4 year olds are just finding their personality" - well-meaning people with really stupid things to say... Sometimes I feel like I'm not only advocating for her, but for us as parents as well. I do see my own personal therapist to help keep things in perspective and stay rooted in my worth. When you feel like you are walking into a brick wall everytime you leave the house or see the doc, it can be very draining and I think the strongest of people will feel down sometimes. It also gives me a space to objectively discuss dd behavior and help me pick and choose my battles with her. When PANDAS entered our lives - I now very much know the importance of picking those battles ;)

 

I apologize for the long post - your message hit a nerve I guess :). Please know you are not alone in your frustration...

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thanks for the reply....I thought that this website was a place that we probably all have similar situations and can commiserate. I have kind of theorized that my son is his normal self 80 percent of the time, 10 percent are normal 5 year old behaviors, but 10 are pandas. and when he is flaring, then the pandas can go to 30 percent. thankfully not too often and ibuprofen helps a lot with the flares. when I have read up on tourette's it says that many kids do blow up more at home just because it is a safe and accepting place. i hate all of the suffering (repressing tics/emotions, etc) that is going on with these pandas kids.

my son is mainly oblivious to his condition because he is only 5 1/2. it would be interesting to hear what a more adult person says about their pandas flares, behaviors, etc.

does anyone have any anecdotes about whether pandas people have awareness of their brains, actions, emotions, etc?

thanks for sharing your story, I hope that science will quickly come up with a cure for this...or maybe us parents will on the internet!!

let's all keep sharing!

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I think you're right to trust your instincts about when your son is not himself. But two things in your post concerned me. First, when you say But I give in to my son's demands at times because I know that they are more ocd driven and pandas influenced than my 5 year old trying to manipulate me into something. I do not have power struggles over something that will take 45 minutes to resolve when it is benign and fueled by pandas and not by conniving boy. I believe in peaceful parenting, not authoritarian styles of parenting.

How can I convince people that it is my son and his pandas and not my mothering?

 

If a behavior is OCD driven, giving in in order to avoid a meltdown is one of the worst things you can do. OCD is a tyrant and the more it gets its way, the stronger it becomes. It isn't about a power struggle between you and your child, it isn't about being an authoritarian parent. It's a power struggle between you and OCD, about being a parent who will not become a pawn in OCD's game. I'm hoping the ERP experts will chime in here. But most of us who've been there will tell you that accommodating only leads to more OCD demands. Think of OCD as someone who's kidnapped your child and is demanding a ransom. You need to stand firm on things you feel are OCD-driven. If it takes 45 minutes, so be it. You may really want to get "What to Do When Your Brain Gets Stuck" by Dawn Huebner. It does a great job of explaining how to stand up to OCD.

 

The second thing that struck me is that you paint a picture of you against all the other adults around you. Even if you're 100% right, creating this kind of me/them dynamic isn't going to be healthy in the long run. Pandas is a long battle and it takes a heavy toll of marriages and family relationships. You need to compromise and get other adults to feel they're on the same team. Perhaps there are issues where being more firm would be helpful, not just in terms of helping your son feel there are limits (which helps kids feel safe) but also to help your DH feel like you're hearing him and willing to meet him somewhere in the middle in your parenting. I totally get the conflict that comes when everyone thinks your child is a brat who just needs more discipline and yet you see it as illness-driven, requiring a sympathetic response. Happens in my house too. But in the long run, everyone needs to be rowing in the same direction or you'll end up exhausted and stuck. Not saying your viewpoint is wrong. But it sounds like a warning sign. A little family therapy might help. It helped my marriage survive some ugly times.

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I don't have a lot of time this morning- I just wanted to second everything LLM said. I think many of us have gone through this :( Initially, my dh and family were not "sold"- but a mom knows. However, a mom is also very protective and wants to shield their child from difficulty- so we tend to accommodate. This only makes things way worse, and sets up a very tough family dynamic. LLM and I say this with love, we have been there. You need to get on a road back to expecting normal, age appropriate behavior from your child. Pandas is a medical condition, yes, but we cannot accept and condone ocd and bad behavior.

 

I strongly suggest a qualified ERP therapist, who through tough love can help you, your son and husband come to terms with these "issues", get on the same page, and have a plan. I can give you some suggestions for behavior later (that came from our therapist at USF).

 

Also- to me it sounds like you believe your son is not 100%. Do you have a pandas doc on board? I suggest not giving up until they are 100%. This may mean: antibiotics, steroids, ivig, pex, therapy and more testing for chronic illness.

 

PANDAS is really, really hard. In some ways it is harder when it is milder. Hang in there- the good news is he is 5- still so young, he can get over this.

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to dc mom: there are many of us in this same boat, just beginning to cope with PANdas OCd, etc. you say that you can give some suggestions for parenting OCD child -- please, do.

How exactly do you deal with a child that says no to everything, that can have a meltdown every five minutes? and so on.

thanks in advance

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I agree with LLM and DCMom. One of the best things a PANDAS parent can do for their family is to invest in CBT / ERP. No matter how impossible it may seem, it will be one of the most helpful things to get your family through this. I would recommend one of the intensive programs to start with. Either the USF program or the program at mayo clinic. If this is absolutely impossible, you should see if there is something local you can do. This will be an investment in sanity for your marriage and your family. It's a hard concept to try to accomplish without professional assistance.

 

We have all been where you are and I can certainly relate to your frustration. We have been through CBT / ERP with two of my kids and we still struggle on occasion with the same issues. However, I can't imagine where my marriage would be if we hadn't gone this route. It also gives the child a sense of empowerment. They learn the skills to deal with their OCD and it gives them feeling of control.

 

My only other suggestion is that I really had to learn to let go of worrying about what others thought. Even my family. It is very painful, I know. But I found I was wasting to much energy trying to convince them of certain things. I actually just quit talking to them about the situation. I have one sister who is very supportive, the others not so much. So I only speak to the one sister about it, no one else. I guess the others only believe my daughter is what they see when they are around her. That's fine. I don't talk to them about her treatments or anything else. They see a normal (but shy) little girl and I don't mention the rages, depression, & OCD that goes on at home. I'm not trying to hide anything. It's just that when we did speak of it before, it wasn't productive so I stopped. They have seen the articles, they have the information. I can't do anything more.

 

This is a very painful time for you. I am so sorry for what you are going through. It will get better. Make sure you are getting your child treated by a PANDAS specialist and get into CBT and you will be on your way to a more peaceful existence. Continue visiting this board and you will get valuable information and support. Best of luck.

 

Dedee

Edited by Dedee
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I'm going to echo a lot of what other parents on here have said, but add a few other points. My son was 19/20 months at onset - 26 months at dx. So it was especially difficult to differentiate between the typical "terrible twos" and PANDAS behavior. And while we had a FABULOUS pediatrician, and day care providers that got it and were on board, family and friends often gave us the "boys will be boys", "boys are harder/different than girls", etc...

 

At his young age, we ultimately came upon our own "want a cookie" theroy. When he would start becoming rigid, unflexible, defiant - you know the drill, we would try to diffuse the situation with some sort of "treat" that was normally a slam dunk for him (cookie, lolipop, popsicle). This totally goes against all good parenting - but it allowed us to learn the subtle nuances between his PANDAS related tantrums/issues and normal kid behavior. Most normal kids will give up their power struggle for something they want. Based on that - we were able to tell what were "want a cookie" tantrums and what were real PANDAS behaviors, and we could adjust our parenting accordingly. It was helpful - and I'd say over the years we've got it right about 90% of the time - usually erring on the side of "want a cookie" over PANDAS early in a flare. Maybe you and your husband can try something similar?

 

As for "giving in" when it's OCD related - I will echo what was previously said - that usually makes it worse, and what was orignially a 5 minute OCD demand morphs into a 45 minute OCD demand. We went to USF/Rothman Center weekly for therapy with my son when he was only 3 years old. Most of the sessions at that time focused on us and the proper response we should have to help our child fight the OCD. It's hard to watch your kid have a meltdown because he has to have 4 donut holes on his plate when it HAS to be 3. Since food has been our major OCD trigger, I can't tell you how many dinners we've had while he just screams, rages, wails and carries on because it's "not right". It sucks, and it's time consuming, and stressful, and makes you feel like a terrible parent who is torturing their child - but in the long run it's better for them.

 

"triggered" is also a good book for adult reading, it's written by a college kid who grew up with OCD - primarily obsessional thoughts. He provides good insight into how the OCD continues to grow when you give into it and what might be going through our kids heads when they're affected.

Edited by airial95
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It helped when my mother-in-law called when DS was in a full scale rage and she got to hear it, and then our good friend called and heard one too. Then I video taped one. Weekly therapy for DS plus biweekly check in for hubby and me as well with 1x a month including DS2 has been ongoing for 9 months - another must for our survival I think. And a GP who is not a PANDAS expert but is openminded enough and gets enough to reassure us that we're doing good work and not to blame ourselves. I also share the resources from the various PANDAS websites and IOCDF with family and friends. Plus they see the change from how DS used to be and how he is now even though he works really hard to hold it together when in front of anyone but myself and his dad. That inflexibility and just right need creep out a bit even if he doesn't melt or rage out of the house. But I too have my moments where I'm sure many people must think I'm the nutcase crazy mom. Keep working for that 100% though, mild or not. Good luck!

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