Help, I am losing my mind

[cara615]

So you may have been following my story. Non pandas DS has strep and is setting off a flare in my PANDAS ds. They are twins (fraternal). Non PANDAS ds has never shown any signs of PANDAS. He is a very even keeled kid and pretty rational. He is high energy and doesn't listen all the time but he is 6 so I chalk it up to normal behavior.

 

Last night he was prushing his teeth and instead of spitting in the sink he spit all over the mirror. DH punished him. While I was tucking him in for bed he seemed very sad so I asked him what was wrong. he said he wanted to kill himself. I was FREAKED OUT. I asked him why and he said because he is bad and has bad thoughts. So I asked him what his bad thoughts were and he said it was things like eating candy and drinking lemonade (Things I don't allow him to do anymore sinc we are on clean diets). So I told him those things were not bad thoughts and that he is not a bad child at all and that we love him and would be devastated if he hurt himself. He promised not to ever say anything like that again. He saw how upset it made me.

 

So now do I freak out and go insane that I have 2 PANDAS kids on my hands? Or is this just a normal thing that 6 year old tend to say when they are feeling attention deprived. Does this sound like PANDAS?

 

I mean he has no other symptoms at all. I don't want to make things up that don't exist but I will tell you last night freaked me out.

I am keeping a close eye on him. It just bothers me that this happened while he is on abx for a strep infections.

 

Thoughts? Please talk me off the edge.

[Hrosenkrantz]

Cara615, don't lose your mind over this. In the time I have been dealing with this, I have seen there are a LOT of people dealing with this, and worse. As scary as your situation feels right now, I guarantee you there are other families dealing with worse. You will get through this, I promise.

I know that sounds like a lot of unspecific platitudes, but I'm constantly amazed by families dealing with the worst of this who pull their children through it -- even if it takes a really long time.

[ibcdbwc]

Hi Cara,

 

I have one PANDAS/PANS son and one non PANDAS/PANS son. They are 2 1/2 years apart. When you have a PANDAS/PANS child it changes who you are and how your perceive things. I look at the world differently. I monitor the children in the school, the grocery stores, and at sporting events. It's a hyperactive awareness that is actually quite necessary to remain vigilant in this journey against these types of issues.

 

So I would have done exactly the same thing as you and completely freaked out! In fact, I have been tempted to diagnose my younger son because there are days that he is off kilter. Days, that he does something strange or says something concerning. Lately he's been walking around shooting pretend basketballs. He's always practicing his "moves." I thought, "oh no!" Then I realized he's just being a kid and half the kids on the street do this.

 

When they are sick, they can act even more strange. And they are indeed little sponges that can read your emotions. While you can express yourself through words and writing - they can't. They have these intense emotions, and have no idea what to do with them. He's 6 and he's been sick. He knows you are upset with the situation regarding his brother. He was also punished (and spitting on the mirror was impulsive? or was that because he didn't like himself? - which came first?).

 

I would absolutely monitor things because studies do show a likelihood and he has strep. But I would remain calm also. They are going to go through a lot of stages and ages and a lot of changes and weird behavior and high emotions. Not everything is PANDAS. But do stay on the look out. I might also make sure that he DOES come to you with unusual feelings. He's got to be able to talk to someone so that he can process these thoughts.

 

I imagine the stress level for him is also fairly high. I wonder if he feels "bad" because he brought home the strep. Kids can overhear things or sense things even when its not said aloud. He's just six and might be feeling really mixed up about all that is going on.

Edited March 11, 2014 by ibcdbwc

[cara615]

Very good point! i think he does feel guilty about bringing home the strep. We have had to keep them separated for the past three days. Very interesting. I think he spit on the mirror impulsively. He felt about about himself afterwards according to what he communicated to me. you are right, I think EVERYTHING is PANDAS. EVERYTHING. I am really not handling this very well and I have been in it for almost a year now. So you would think I would be getting better at handling this.

 

I will make sure he knows that I am a safe person to talk to should these thoughts come up again. i am praying it was only a one time thing since he probably is going through a lot right now and our whole house is high anxiety.

[ibcdbwc]

Please remember you are human too. The crazy part about this syndrome is how it can hit you in the gut so abruptly. It's almost more difficult because it goes away and then comes SLAM back into reality. Tortuous actually. No one gets better at handling this. We just do the best we can- when we can. But we are human.

 

And our kids are human. I've had to check myself daily in my reactions to both children. Even if my PANDAS son gets upset, I first think PANDAS!!!! and then I remind myself that he is human. He is going to have to be allowed to have a full experience of human emotions and reactions- without me reaching for the bottle of motrin. They change so much during these younger years as they grow into teenagers. We are almost at a disadvantage as we look too closely. Other parents would just chalk this up to nothingness.

 

Of course be on top of this. No guarantee that things all PANDAS won't pop up in your other son. But just remember that he is probably experiencing a similar amount of confusion and stress - and he has no idea how to interpret it. Spitting at the sink? We've all done that!!! Boys especially, impulsive! But then he was punished (its right to set limits) and he probably added that as a layer into all this confusion. I must be bad. I do bad things... I want the forbidden fruit...

 

Hang in there cara!! We have ALL been where you are today. I may be there tomorrow myself!

[chubbermommy]

*hugs* cara! You are not the only one who thinks that way...whenever my non-PANDAS DD does something suspiciously PANDAS like, I get all worried and anxious and start watching her like a hawk.

 

I agree with the others that your DS is probably reacting to the stress around him and being 6, it's difficult to express himself but he knows something is not right. I think you did good comforting and reassuring him and making sure that the lines of communication are open.

 

My DS is a bit older (he's 9) but I share with him my feelings of frustration and worry sometimes because I start to get snappy and easily irritated. I could not believe it when I once told him I was stressed because of his PANDAS and that I wanted him to be well, and HE comforted ME and said "awww, mommy, you're so caring". I just about cried.

Edited March 11, 2014 by chubbermommy

[cara615]

Thanks for the moral support ladies. You are the best. I felt so alone today. But I think my anxiety is causing me to expect the worst and project the worst. Today overall was a little better. I think pandas ds has plateaued with his flare (crossing fingers). Non pandas ds didn't say anything out of the ordinary and was pretty well behaved with the exception of being over tired at bed time. One week till we see the new dr. I wish I could press fast forward.

 

23andme notified me that our sample was not enough to collect DNA so we have to do it again arghhh

[qannie47]

PTSD.....I think all us Pandas parents have this to some degree. Cara, I can remember one year ago being in the exact place you are. It has been two years now. Despite the great progress we have made, I still find myself looking at both my child through the microscope lens and my knee jerk reaction is OH KNOW!!! I think it is completely normal. I promise it does get better. Last year, it consumed me. All day, All night. This second year, not as much in a pretty big way. As ibcdbwc said so eloquently, you too will reach that point where the panic is not quite so high, and it will be easier to remember "boys will be boys". One of the things that my pandas ds did constantly when in a flare was loud, constant bird shrieks. To this day, every time that kid demonstrates a sound that is in any way similar a chill goes up my spine. The other day, when we were on a play date, his perfectly neurologically sound friend was running around the house making similar sounds...I was reminded again that children just do the darnest things....otherwise there would have been no material for the hit show....

 

Yes, you will get through all of this...........

[cara615]

qannie what you describe is EXACTLY how I feel. I hear EVERYTHING. To most other people these tics are not really that noticeable (except if he is screaming on the top of his lungs). But to me even the littlest ones are enough to send me over the edge.

 

I am ok with the ugh ugh throat clearing, tongue movements (because they are silent) and sucking teeth because its kind of a "normal" noise. But the "eh eh", "breeeets", spitting, gagging, hocking a loogie and SCREAMING are all cause for me to get into the fetal position. Not to mention the motors which can be very forceful head jerks and arm flaps.

 

We are definitely in a much better place then last Nov and the previous May. In May of 2013 on Mother's Day weekend, ds was so debilitated, screaming on the top of his lungs about 80 times a minute, no eye contact, running around aimlessly, throwing himself on furniture and at people. I thought we would need to go to the ER. At the time we did not know it was PANDAS, just TS, ADHD, OCD and anxiety. Thankfully school was out at that point and we battled through with diet changes and supps over the summer. We were at the pool everyday and it was a loud place so most people did not hear his yelps and screams. Or if they did, they kind of blended in with all the other noise at the pool. It took 4 months but by the time we reached GFCF and corn free, treated yeast and started on a B complex we had him back to almost 99%.

 

This is truly a roller coaster and you are never prepared for the next ride down. Although hearing you say that it gets better makes me have some hope that I will continue to be better equipped to deal with this.

 

The goodnews is that we are finally going to see an MD that knowswhat he is doing. Our pedi is great and our integrative MD is great but they have limits when it comes to peeling back the layers of this disorder. Or new Dr. is going to run all the tests, see if IVIG is warranted, check for co-infections, CVID, and other things that I have never even heard of like nagalase levels to see if he would benefit from GcMAF shots. He is pretty cutting edge so I am hopeful.

 

But I would be no where without the support of you amazing MOMS!! This is a lonely disorder and most friends of mine don't get it. They don't ask about it or care to know because everything I tell them is over their head and too much information for them to process. I feel like an MD when I talk about it.

 

Good news is that this morning ds's tics were down. I still gave him 150mgs of motrin and sent him off to school but i can tell that slowly we are moving in the right direction.

 

As for non-PANDAS ds, it wil always be in the back of my head. He is on 10 days of amoxi for the strep infection and they gave us more than 10 days so I will give it to him until it runs out just to be sure. Then I will re-swab him to see if the infection cleared. I think if he winds up having PANDAS his case will be less severe because we will have caught it immediately. Those are the cases with the best results, right?

[lulu4]

I can certainly relate to your situation as well. There are times when my non PANDAS younger daughter has some behaviors that are like her older PANDAS sister. You can't help but wonder if this child also has it. Even if it is much milder. You also can't help but wonder if some of the behaviors are learned. And I think with everything she saw, heard and experienced during the 1 and 1/2 years that her sister was severe, I also think she has a certain PTSD response too. But when she seemed to get very irrational and irate a few weeks ago, and mentioned a sore throat, jeepers, it scared the pants off me! I hauled her in for strep test, but rapid and culture swabs came back negative and the blood test showed titers within normal range. Then I've been hearing of other children her age (just turned 9) who have been having lots of weird fears, especially at bedtime and sleeping with their parents for part of the night, just like her. So maybe she's just going through a phase of some kind. I certainly hope that's it! In the meantime, I've been giving her supplements to help with nerves and immune system. Her wholistic pediatrician suggested checking adrenals, so I will do that soon (first step is taking temps for several days). We've done some energy work, including BodyTalk and Emotional Freedom Technique (EFT is a tapping technique). Both of those were helpful. We now tap every night. Yesterday she had a session with big sister's psychologist. The dr. taught her about how to treat her fears. It went well. So, I'm hopeful my youngest daughter does not have PANDAS. But you can be sure I will be doing all I can to keep an eye on her and taking care of her health. I want to be far ahead in the game if the second child needs help. It took too long to learn what we needed to help big sister. ...One more thing, that's been going through my head for months now: the CDC lists PANS as a rare disease. I personally do not think it is rare at all. I know so many children in my town who have had strep, and at least one with lyme and mono, who experience behaviors that seem PANS to me, just not so severe. I think we might discover down the road that it is a spectrum. But right now it seems to be diagnosed only if it is severe. Just my thoughts there.......So I will be vigilant with my kiddo. Cara, all the best to you and your boys!!! Wishing you all healing and lasting good health!

[dasu]

PANDAS does take a heavy toll on parents. I think my sister also has a PANDAS child but he is 19 now - she just recently noticed that all of his episodes were after some sickness. Her situation scares me because her son has had crazy ups and downs, between violence and depression...and I dont want to see that with my son.

 

The effects of PANS have been wearing us out for a couple years. We thought our kids were just different or that we were doing something wrong. Everything has been more difficult. This ends up separating you from other adults, just like it separates the kids. There are things you cannot do or just plain feel to tired to do, just like there are many things the kids cannot do. Then there is the constant stress both in and out of flares. Anything can happen, you have to be prepared. The diagnosis provides some relief - a name! - but then more stuff to do and stress over - so many things to navigate,

 

lulu your PTSD comment was very a propos.

 

But I have seen things improve with my daughter and hence with her parents too I have learned not to dwell on how bad it is but on what to do. Its OK to grieve but at some point we need to turn to action. That is not just action for what we can do for our kids but sometimes what we can do for ourselves as caregivers - take the luxury of doing things that are fun and restorative.

Edited March 13, 2014 by dasu

[Dedee]

I would just be very cautious. Don't go crazy worrying, but stay alert to signs. You know what you are looking for. I am a Mother to 3 PANS children and I can remember the day I realized each had the symptoms. I am definitely not saying that is whats going on here and you shouldn't rush to judgement. But at the same time, I also know that children will withhold information if they think it will upset you. In addition, if they are having one bad thought there are often others they aren't talking about. I'm not telling you this to alarm you. I'm just going on my experience and being honest. What ever is going on, you can handle it. You are strong, smart and capable. I know you will figure it out and do the right thing for your children. Best of luck.

 

Dedee

[cara615]

Ok well then listen to this. So nonPANDAS ds is on amoxicillan for strep. They gave us about 15-18 days worth instead of the regular 10 days. Should I give it ALL to him just to make sure the strep is really killed off? I will take him back for a follow up swab but wondering if I should put him on a longer course just because i have it.

[bmf152]

You're not alone. I am the older sister (almost 30) of two younger sisters (13 & 15). For over 5 years, the 13 year old has had "Tourette Syndrome" OCD, ADD, incontinence, vertigo, unilateral hearing loss, the list goes on. She tested positive for Lyme, Bartonella, RMSF, Mycoplasma, Babesia. We only in the past few months have discovered PANDAS. THIS ENTIRE TIME we have doted over the 13 year old, Dr after Dr, while the 15 year old is an honor roll student that never had ANY tics, or any of these very "obvious" signs that something was wrong. We, in the past year, discovered that the 15 year old has been self injuring for over a year, cannot get "negative thoughts" from her head, unwillingly thinks of suicide, etc. We rushed her for bloodwork, turns out, she too has Mycoplasma and lyme. Both are now on high doses of abx and we are hoping to avoid psychotropic meds for the 15yo....very scary though. So, in other words, totally "normal" to tend to the one that exhibits such "obvious" signs that something is wrong. You can't know until you know.

[Brese]

My child took quite some time to tell me about her bad obsessive thoughts. When she first told me they were little things like I am having bad thoughts about things. I took me a long time to convince her I would love her and understand any bad thoughts she had. I told her bad things I think sometime to get her started. She overtime expressed she was having thoughts of dying, killing other people, hated god, she hated us and wanted us dead, could not get cuss words out of her head and more. I just hugged her while inside I was struggling with this information and scared.

She said she knew her thoughts were not normal and did not want anyone to know. She said she really did not feel this way and loved us but could not get the thoughts out of her head. She was afraid we would not love her, people would make fun or her be afraid of her. If they let any small detail go they are feeling you out for what they can share with you and are having more difficulty than you know. Make sure you let him understand you will love him no matter what he feels and can share anything with you. We consulted a psychiatrist for PANDAS OCD with his care and the neurologist all the symptoms resolved.