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I hope you pandas parents are having a good thanksgiving holidays.

I am posting this to parents with older kids as I don't want to scare parents with young pandas.

My ds17's main issue had been OCD that involved with constantly reassuring if everything was OK and he made us say sorry a million time for something so insignificant ( he could not let go) and he would find plenty of thing that bothered him ( some days I had to apologize million times for laughing because he thought I spited at him) As you can guess it was down right annoying and physically and emotionally draining to be around him. If his mom was feeling this way about him, it was no wonder that he did not have any close friends. He and his family(us) were very very hurt and sad about the rejections he used to get. It was one of the most painful issues my son had to face through out his teenage years.

After 4 IVIG + Augmentin for last 6months, he no long has that annoying kind of OCD. ( once in a while he demands that I apologize for touching his books in a wrong way but it would be only for a few times and lets go in no time.) Now he has several friends and had very busy social life. In theory, I should be very happy but in reality I am very scared as I am facing a new problems. This may be all in my head but I am worried all the same.

Here are my reasons for it. Even though my son has never been behind academically, because of his brain getting stuck on wrong issues he missed out a lot of normal growing up therefore making him very naive and impressive for his age. I know the boys he hags out with and they are nice kids(?) but my worries are that they are smokers and how is that going to influence my son? Do they do anything more than smoking as if smoking is not bad enough?

I realized that I have been treating my 17 yrs old son as he was 7 yrs old but I hope as pandas parents you guys would understand why I am worrying about this. I just don't have confidence in my son to make the right choices. ( based on his attraction to dark movies and music and my son says they are just movies and musics but still) When would my worries over? Am I over reacting? What would you do?

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Hi Pathfinder,

I'm so with you...my ds is 16 (going on 26, going on 3!) We have invested so much of ourselves in these kids and letting go is very scary. As mothers we'll always worry! Keep the communication lines open and you will find the balance. You've done the most amazing job! What a brilliant mother!

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I hate to tell you, My 3 oldest are all adults now- and they all went through crap in the late teens that scared me like crazy. Keep the lines of communication open and sometimes a good therapist can help them get through some of the issues, especially self esteem stuff.

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I don't think I've ever talked to you before! I'm a P.A.N.D.A.S. teen. I'm sure you already know this, but I'm sure I speak for all of us when I say we don't mean to act the way we do. I obviously can't say much as to parenting us (can't even imagine, really), but if you ever need a second opinion or something like that, feel free to bounce any ideas off of me. I love talking.

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I hope you pandas parents are having a good thanksgiving holidays.

I am posting this to parents with older kids as I don't want to scare parents with young pandas.

My ds17's main issue had been OCD that involved with constantly reassuring if everything was OK and he made us say sorry a million time for something so insignificant ( he could not let go) and he would find plenty of thing that bothered him ( some days I had to apologize million times for laughing because he thought I spited at him) As you can guess it was down right annoying and physically and emotionally draining to be around him. If his mom was feeling this way about him, it was no wonder that he did not have any close friends. He and his family(us) were very very hurt and sad about the rejections he used to get. It was one of the most painful issues my son had to face through out his teenage years.

After 4 IVIG + Augmentin for last 6months, he no long has that annoying kind of OCD. ( once in a while he demands that I apologize for touching his books in a wrong way but it would be only for a few times and lets go in no time.) Now he has several friends and had very busy social life. In theory, I should be very happy but in reality I am very scared as I am facing a new problems. This may be all in my head but I am worried all the same.

Here are my reasons for it. Even though my son has never been behind academically, because of his brain getting stuck on wrong issues he missed out a lot of normal growing up therefore making him very naive and impressive for his age. I know the boys he hags out with and they are nice kids(?) but my worries are that they are smokers and how is that going to influence my son? Do they do anything more than smoking as if smoking is not bad enough?

I realized that I have been treating my 17 yrs old son as he was 7 yrs old but I hope as pandas parents you guys would understand why I am worrying about this. I just don't have confidence in my son to make the right choices. ( based on his attraction to dark movies and music and my son says they are just movies and musics but still) When would my worries over? Am I over reacting? What would you do?

 

 

Hi,

Firstly, I just wanted to assure you that having PANDAS and missing out socially never made me want to make-up for all the social things I've missed; I mean, I haven't tried to suddenly cram drinking/smoking/any other risky behavior in now that I'm feeling well to make-up for having missed out on some social years.

Secondly, have you looked up any other resourced for parents whose kids may be socially "behind" due to a circumstance they couldn't control, like any other sort of illness, or a family crisis? For instance I knew a girl who stayed back in elementary school a couple of years because her single mother had breast cancer and school/friends just couldn't be a priority for them. So obviously, when she came back to school she was at different level than everyone else. Another girl I knew had to take about year off because she was anorexic and it was an adjustment period when she came back to school full time. So there's probably tons of situations where kids are on a different social timeline than everyone, and I bet lots of parents have written about it out on the internet somewhere.

Thirdly, and this is just an observation of my friends, when we were all about 14 we were all definitely into dark movies and angry music and doing that whole "I'm an angsty teenager you can't understand" thing. So if what you're saying is that he missed out on some social things, maybe he didn't get a chance to do that "goth" thing at 14 or 15 and is getting around to it now that his PANDAS is better?

 

I'm really glad his OCD is mostly gone! That's such great news!

 

Emmalily

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Maybe I misunderstood, but I got the feeling that he's hanging out with some "rough" kids because he didn't develop normal friendships because his PANDAS behaviors made him kinda hard to be around and he's at the age where the HS clics have already been formed, leaving him on the outside looking in. And w/ his history of not fitting in, his mom is afraid that he may be easily swayed by peer pressure to do some unhealthy, risky things, rather than take the chance that they'll reject him.

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Pathfinder -

Thank you for bringing up this topic. My PANDAS son is 13 so we are starting on the teen years with him. I also have a daughter who is nearly 16 (going on 21). I realize that my ideas here may be way off, so please take what you can use from these thoughts.

 

I agree with Emmalily that kids do explore the "dark" side a bit and they also need to do some rebelling against their parents ideals and seek their own place in the world. That makes it difficult, because if you openly disapprove of their friends they often become even more loyal to the friends... and if you are overly accepting of the friends they become comfortable with the culture of the friends and figure it is OK to act that way.

 

I am wondering if there are positive things that you son could capitalize on now that he is starting to be more social. Does he have positive interests / activities / skills that could be encouraged? Is he interested in developing any new skills? I am thinking of things like volunteering his time someplace, taking ski lessons or tennis lessons, getting a job. Something that will expand his circle of friends in a positive direction.

 

The Search Institute has lots of ideas of positive activities for kids. If you go here http://www.search-institute.org/ and look around you may come up with something that could be helpful. The "developmental assets" in the left column has lists of Assets for kids at different ages. The lists are good ideas of ways that kids should spend their time and things they need for healthy development. If any parents of younger children are reading this post - you might want to look their also and go back often through the years.

 

Pathfinder - please keep us posted. You are finding and paving a path for the rest of us. Best of luck -

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I have older PANDAS kids 20 and 15. I dont Know where you live or his religious beliefs but the best thing my teens ever did was get involved with an Organization called Young Life. We are religious but not church going, but my teens found YL to be the peer community for them. It is such a positive group that have young leaders that mentor high school kids. YL is religious based (no particular denomination) but its main focus is having fun in positive ways. Yesterday was the annual Turkey Bowl football game, where all the YL boys get together and play football and the winning team gets a goofy trophy that gets passed down each year. YL tries to have organizations for each high school although they are not school based. The kids in the group try to find kids who might need a little direction and show them what YL is about. They have a web site that you could check if there is a group in your area. I have found that with five kids they want to belong somewhere and YL makes all kids feel like their family. It is truly amazing!

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Thank you all for your kind and caring inputs.

I will take all of your advices with open heart and undying gratitudes.

Two of you pandas girls who dropped by, pandas or not I think you girls are incredibly bright and caring.

I know I would have been very proud if I were your mom.

Raising a pandas child is like walking through a dark alley blind folded, so many unanswered questions, so many uncertainties, and so many obstacles.

Thank you guys

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I think your worries are very valid. You want him to keep the friends he so much needs, and yet you want to keep him safe from bad influences.

One thing would be to get to know the parents of your son's friends, that will be helpful in getting a feel for what they may be in to.

Of course, keep the communication going, especially the dad-son line, as some things are better shared between men.

Also, it's important to stay one step ahead of the game. Not that you need to let him know all the crap out there, but you don't want him to be caught of-guard, or get into tricky situations simply because he didn't know what might be coming... I don't know if I'm making myself clear.

But I think PANDAS or no PANDAS, when kids grow up there will always be tough choices between being popular/keeping friends, and doing the right thing. It's just going to be tougher for you guys because he missed so much already.

I am glad to see, though, that he is doing better!!! That is very encouraging :)

And of course, the secret weapon is to pray, pray, pray for him and his friends.

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  • 3 years later...

My little sister is 15 and is severely depressed, anxiety and OCD and was just diagnosed with PANDAS/Mycoplasma, etc. Our younger sister has the Tourette syndrome, OCD, ADD etc. Anyway, I write for a few reasons, 1. to know if you know of any support groups yet for teens dealing with this? 2. What are people's experiences with SSRI's or meds for depression/suicidal thoughts/cutting, if so, what was the result? We are worried for her as today is her first day on the antibiotics (doxy and azithro) but her psychiatrist (who knows nothing about pandas) wants her to take risperdal, to help the mental portion. Your thoughts would be greatly appreciated.

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My DS is 15. We have been on this journey since he was 6. We didn't have a knowledgeable Dr till 11 when we had the anorexia-like component rear its ugly head and lost 30 lbs in 2 months. He wouldn't eat because he didn't want to grow taller. Wacky.

 

Some PANDAS kids have poor reactions to SSRI's. Our Dr has a very strict protocol that has to be followed first and since it brought our son back to stable we follow his directions.

 

First a Dairy free, grain free (except one serving for a sandwich), GMO free diet. Basically the Paleo Cave man diet to eliminate inflammation in the brain. We were not allergic to nuts except peanut sensitivities.

 

After diet we did Anti-virals, check post on Valcylcovir and then Antibiotics

 

We then introduced Sertraline and fortunately didn't have any issues. Our Dr. does a Neuro-spect brain scan of the frontal lobes. Here he finds most of the kids have areas of low blood flow shown like dark pools in the brain. He says the SSRI will keep seratonin in the frontal lobes to promote healing. He can show this on follow up scans but more important on behavior.

 

He does blood work every 6 weeks and it will show if you are not following the diet which after many years he feels is the foundation to healing.

 

Our DS lost his ability to read, write and calculate math. At the time of his flare he had D's and F's. We are now back up to A's and B's.

I can only speak of our experience. It is truly an individual journey but here you will have help and support for the twists and turns. That being said I would ask your Dr to try Valcyclovir before respirdol. My concern would be the side effects of resperidol.

 

 

On a different note females need to have a thorough GYN exam. Cysts on the ovaries, (maybe elsewhere..I have boys) can have the same psychiatric symptoms. GMO food promotes these cysts even in very young girls.

 

What an amazing sister you are! Please keep us posted.

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My little sister is 15 and is severely depressed, anxiety and OCD and was just diagnosed with PANDAS/Mycoplasma, etc. Our younger sister has the Tourette syndrome, OCD, ADD etc. Anyway, I write for a few reasons, 1. to know if you know of any support groups yet for teens dealing with this? 2. What are people's experiences with SSRI's or meds for depression/suicidal thoughts/cutting, if so, what was the result? We are worried for her as today is her first day on the antibiotics (doxy and azithro) but her psychiatrist (who knows nothing about pandas) wants her to take risperdal, to help the mental portion. Your thoughts would be greatly appreciated.

Pm'd you

 

Risperdal did help my child in extreme rage and confusion. She gained a huge amount of weight on it.

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It does take a team to make sure our kids are healthy in all ways. My ds15 is lucky enough to see a psychologist that talks to the PANDAS doctor downstairs. He has been going over a year now (bi-weekly presently) to her and the visits have helped a ton. We looked for one that worked with ill children which seemed necessary after trying a few others.

 

She said " be glad you are doing this now" because she also sees older Panda kids and knows of the possibilities of not seeking mental health help.

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