New to this and full of questions

[tantrums]

Hello everyone! So glad to have found this group thanks to a wonderful new friend My name is Sue and my son Carter has been very difficult lately. I spoke again with his pediatricians assistant yesterday and she said his doctor shares my concern that this is likely Pandas. During research, I found an email for Dr. K and emailed him as well. He also agrees.

 

Carter is 6 and a half and just started first grade. In July, he had what seemed like a typical cold - didn't amount to much. Then in October he had H1N1 - again not as much as I'd feared it would be. He seemed to said through. However, what seemed like odd things that began around August only got worse. He has become a different child - explosive to the point of 2 hour tantrums, destructive to property in the house, defiant, etc... He is obsessed with a fear that he is dying. He does not sleep - he will wake me up repeatedly in the middle of the night to have me tell him he is NOT dying. More recently, just in the past couple of days - he is afraid he is getting a "baby in his belly" and it's the same thing - constant reassurance that it is not the case. He will not be in a different room in the house from my husband or I - usually me. Just yesterday, he started wanting me in the bathroom with him when he is using it. He demands that I dress him, undress him and put his shoes on for him. He wants to drink from a sippy cup.

 

When he was very young - 2 actually, I'd noticed the first tic of blinking, but it went away as quickly as it started. Then around 3, he started sucking on his shirt collar and sleeves. His whole shirt would be warped and soaked some days. He also sucks on his arms so hard he gets bruises - but again - it would all come and go so I didnt' read too much into it.

 

When first grade started - real problems began. He refuses to write anything on tests! The teacher was as stumped as I. But we've come to realize, he is afraid of writing the wrong answer, so he writes nothing! He is likely going to have to repeat first grade. He is getting extra reading help, but even with that - he is failing reading and usually, no one can read his handwriting. His math skills are excellent - amazes me actually! He also USED to have amazing art skills, but anymore - he scribbles. I can't figure that one out.

 

So - since discovering PANDAS, yes it does seem pretty obvious that this is what we are facing. I noticed a predisposition in kids who are/where "croupy". Carter used to get croup every SINGLE time he was sick at all, or anyone around him was sick. He just grew out of it. Interesting? In fact, the H1N1 was the first illness where he did not end up with croup. I was SOOOO excited!

 

But I still have so many questions! My number one question is about OCD - I know the fear would be considered OCD. But other than that - my child seems to be the exact opposite of what I know as OCD. He is, point bluntly, a total slob LOL, everything is strewn everywhere, toys are constantly broken, heads ripped off of action figures and thrown about, clothes ripped, food and drinks spilled nearly every time he eats. he is loud and NEVER still! He is always banging walls and jumping off of chairs. Yet - I am assured by teachers and doctors my son does NOT have ADD?! Does anyone else experience this? During croup episodes when he has needed orapred, I've wanted to head for the hills! Talk about fuel for the fire!

 

And aggression is concerning me right now. He has not been typically aggressive in the past, but just in the past week, I'm seeing some things that are alarming me. He seems to be aggressing in "sneaky" ways. He has to hug me every few minutes, but then as he is hugging me, he rubs/butts his head into my stomach in a pretty hard manner. I can't tell if it's a tic, compulsion or what? He also has to have his feet on me constantly when we sit together and he kicks me a lot! Yesterday, he wanted to play with lightsabers, but this was during a rage and the look in his eye was quite disturbing. He got them out and was saying "take it mom! FIGHT me mom!". It seems like an escalation that I am NOT liking!

 

So we are going back to the doctor on wednesday for strep testing. What is the next step here?

[Buster]

My number one question is about OCD - I know the fear would be considered OCD. But other than that - my child seems to be the exact opposite of what I know as OCD.

There are all sorts of forms of OCD and "Monk" is really not very representative of the most common (especially in children). You might want to look at the discussion of OCD in http://www.latitudes.org/forums/index.php?...ic=6153&hl=

 

And aggression is concerning me right now. He has not been typically aggressive in the past, but just in the past week, I'm seeing some things that are alarming me. He seems to be aggressing in "sneaky" ways. He has to hug me every few minutes, but then as he is hugging me, he rubs/butts his head into my stomach in a pretty hard manner.

Yes, these are comorbid symptoms with OCD particularly in PANDAS children. Emotional lability is quite common for PANDAS children (see http://www.latitudes.org/forums/index.php?showtopic=6128 )

 

So we are going back to the doctor on wednesday for strep testing. What is the next step here?

Is he already on prophylactic antibiotics? Do you already have a local doctor who has agreed with the diagnosis? Does he have a sibling? Is the sibling getting a throat culture too?

 

Buster

[thereishope]

First, welcome. I don't have much time to type a lot, but my son had a lot of OCD. If you read the new OCD topic, everything I list, he did and more. I omitted what was already listed. However, he was not a perfectionist in terms of his room begin clean and such. He'd wear torn clothes too and mismatched. Don't let that stereotype steer you away from what your gut tells you.

 

And actually, his one oasis was the park. He acted fine there every time He even played in the dirt and he had a germ/dirt fear!

[tantrums]

Thank you so much for the relies! Buster - I will look at those links in a bit. We're trying to play a family game here and do some "quality family time". Somewhat challenging when he can't handle anyone else scoring or the thought of him not winning But we're trying to make it pleasant.

 

No siblings here. Lucky so that I can focus my attention and time on him I suppose!

 

Our regular pediatrician is on board. We've been on the phone all week after our initial visit last week. It wasn't brought up then, but when I called back (she had done basic bloodwork and Lyme titers and recommended a psychiatrist) to ask about PANDAS, she said yes and bring him back in next week for strep testing. So we will discuss more on wednesday. I was glad she was at least receptive and seemed to know what I was talking about!

 

I also have Arnold Chiari Malformation and was focusing on THAT concern with him! Like I now need TWO "controversial" medical issues to persue At least a neurologist will be involved with both. Don't know if anyone here would happen to know about that - but it's a skull/brain malformation that causes headaches (which he has been complaining of lately), fine motor issues and a host of other problems. I initially thought that might be what we were dealing with, but I realized as this escalated that this was beyond ACM symptoms. ACM is highly hereditary and I need to have an MRI for him for that anyway to see where he is at. Poor KID!

[sww817]

Welcome to the board. You will find a wealth of information here and lots of parents to help you as best they can. I saw a lot of similarities in my son when I read your post. My son is only four though. I did not recognize a lot of his actions as OCD originally either. It can be confusing in a younger child.

 

My one suggestion for you is to find a doctor who understands PANDAS and is up to date on the research. I suspected PANDAS twice before and was told I was wrong. I love my pediatrician and he is very open minded. He has been as helpful as possible on our whole journey. But during our last exacerbation, he agreed that it might be PANDAS, but he ran the "wrong" tests and ruled it out based on the results. He told me that was not our issue. I don't blame him for this (and he plans to talk to Dr. Latimer to get up to speed) but I would still not know what we were dealing with if I didn't follow my gut and go to Dr. L.

 

There are several doctors mentioned on this board. And some will consult without you having to travel to see them. Just something to keep in mind if you feel like your doctor is unsure.

[Suzan]

But I still have so many questions! My number one question is about OCD - I know the fear would be considered OCD. But other than that - my child seems to be the exact opposite of what I know as OCD. He is, point bluntly, a total slob LOL, everything is strewn everywhere, toys are constantly broken, heads ripped off of action figures and thrown about, clothes ripped, food and drinks spilled nearly every time he eats. he is loud and NEVER still! He is always banging walls and jumping off of chairs. Yet - I am assured by teachers and doctors my son does NOT have ADD?! Does anyone else experience this? During croup episodes when he has needed orapred, I've wanted to head for the hills! Talk about fuel for the fire!

 

And aggression is concerning me right now. He has not been typically aggressive in the past, but just in the past week, I'm seeing some things that are alarming me. He seems to be aggressing in "sneaky" ways. He has to hug me every few minutes, but then as he is hugging me, he rubs/butts his head into my stomach in a pretty hard manner. I can't tell if it's a tic, compulsion or what? He also has to have his feet on me constantly when we sit together and he kicks me a lot! Yesterday, he wanted to play with lightsabers, but this was during a rage and the look in his eye was quite disturbing. He got them out and was saying "take it mom! FIGHT me mom!". It seems like an escalation that I am NOT liking!

 

Hello and welcome. Some random thoughts for you....

 

My 8 yr old dd has OCD tendencies and a a complete slob. She becomes totally overwhelmed when needing to organize anything. Seems pretty ADHD to me. Her seat in the car is always filled with junk. She's a slob when eating, crafts, anything. She desperately wants order though but has no idea how to help herself to achieve it.

 

My other daughter is more agressive and always hanging on me, pulling on me, kicking, feet in my face... her feet are always a problem it seems.

 

Good luck with it all and I'm glad you have found us.

 

Susan

[tantrums]

I just thought of another question I need to figure out pretty quickly. Where does this leave us with school? My son is literally failing first grade. He does well in match, but everything else is an absolute failing grade. The teacher already has him in a "preintervention" program but it's not helping much. We've discussed having him assessed for special education services, but both she and I feel that it may not be the right move. I love that I have a teacher for my son who seems to know that this doesn't seem "typical". He obviously does have the intelligence, yet he just WON'T do the work due to fear of it being wrong. Would this fall under an ED classification? That sortof bothers me to be honest - especially since it can hopefully be treated and have some better periods.

 

Yet - the bottom line is - the child IS failing first grade and badly. He will probably have to repeat as it is. So special ed services may be warranted for whatever reason to help him succeed, right?

 

I should add - he is actually doing well socially with no issues. He is actually the class clown. He plays with boys and girls alike. Also in his aftercare, he plays with different age groups with no problem. Guess we are pretty lucky there.

[tantrums]

Hello and welcome. Some random thoughts for you....

 

My 8 yr old dd has OCD tendencies and a a complete slob. She becomes totally overwhelmed when needing to organize anything. Seems pretty ADHD to me. Her seat in the car is always filled with junk. She's a slob when eating, crafts, anything. She desperately wants order though but has no idea how to help herself to achieve it.

 

My other daughter is more agressive and always hanging on me, pulling on me, kicking, feet in my face... her feet are always a problem it seems.

 

Good luck with it all and I'm glad you have found us.

 

Susan

 

Oh Susan - that sounds SO much like it is here! I'm so happy to have found this group! I always feel like I'm constantly complaining about my child being "on me" and it's not a good feeling. It's not that I don't enjoy him, or don't want him to cuddle me - it's just excessive and in a rough way that makes it unpleasant. Sounds like you understand

[Suzan]

Oh Susan - that sounds SO much like it is here! I'm so happy to have found this group! I always feel like I'm constantly complaining about my child being "on me" and it's not a good feeling. It's not that I don't enjoy him, or don't want him to cuddle me - it's just excessive and in a rough way that makes it unpleasant. Sounds like you understand

 

I do understand!! I did not realize how much I pushed my younger dd away until she stopped being so agressive. I can now show her how to be gentle when holding my hand. I tell her "loose arms!" to teach her how to hold her own arms so she's not dragging me down. It's been so much better after she's been on antibitics since July. She hurt me for years it seems and it was so sad since she just loved me so much. She still struggles with it and it comes and goes. She is 7 now and she really does not get how she affects other people by her physical actions.

 

Regarding your son and school, I hope that if he can get some treatment things will get better (sorry if I missed that he is on any antibiotic treatment yet). My girls are great in math but have struggled with other subjects in the past. My 8 yr old struggles with perfectionism too and won't try new things at school unless she knows she will master them the first time. Her teachers know about this now and are working on helping her. I will say that after antiboitic treatment, she went from 2nd grade to well over 4th grade reading within months (she's in the 3rd grade). But she still has trouble writing legibly and she rushes through all her work at school.

 

Susan

[tantrums]

No - he's not on antibiotics yet. When we went to the doctor last week, we had NO idea PANDAS even existed and the doctor hadn't mentioned it. she did regular bloodwork and Lyme titers. Actually, there was a resident there with her, and I do think he mentioned it, but I didn't give it a thought since I was stuck on Lyme and Chiari at that point. But we've been on the phone three times this week with the doctor and her PA. Have another appointment wednesday for strep testing as she does think PANDAS is the diagnosis. I'm not sure if she will RX the antibiotics without the strep test results though. I'm hoping so at this point, because he is escalating on nearly a daily basis at this point.

 

I know! I feel so bad because I feel like I'm always pushing him away and that is so sad! I was actually supposed to have a spinal fusion next week, but put it off partly so I could get him taken care of. So I will be having it on January 11th. So my being in awful pain does NOT help in dealing with him. My nerves (physically that is ) are shot and having him rubbing on me, pushing me and kicking me is 10X worse than it would be normally. And then, I'm just generally in pain and exhausted. Not to mention, him knowing that I'm not well I'm sure does not help his anxiety levels. I shudder to think how he will be when I'm in the hospital. NOt sure yet if having him visit me will help or hurt - although I think they are still not allowing kids in the hospitals due to H1N1. I'm going to have to ask my doctor. Carter actually LOOKS stressed when he is hugging me, as if he is anticipating me pushing him away. I would NEVER deny a hug - it's the part where he slams his head into me afterwards that is the problem

 

So - for right now, we will be limited as to what I can accomplish with doctors sadly. My husband is not exactly on board with this. As soon as the word psychiatrist is mentioned, suddenly he feels there is NOTHING wrong with Carter and I'm over reacting. As of January 11th, I'll be totally out of commission for a few weeks and then unable to drive for 2 months. I will have support from my mom. I also have a good friend who is actually a child behaviorist and I'm sure she will help me with getting him to any appointments I can make.

 

So my plan now is to follow up with the pediatrician on wednesday. Then we happen to have an appt with his allergist on the 14th and she is WONDERFUL! I'm confident she will be a help. I'm also going to ask for a referral to the specialist group out of our local hospital, which is very good. The pediatric specialist group has a neurologist, psychiatrist, hematologist and rheumatologist all in one place. I think if they are knowledgeable on this, the set up could be fabulous!

 

It is good and bad that I have dealt with Chiari Malformation for years. It is similar in that it's something that many doctors either don't know about, or don't acknowledge. I've learned all to well how to advocate and navigate in the medical system and to push to find the right doctors. I had to do that for myself for a long time until I learned what I had and where I stand and how to get the right treatment. Now it shouldn't take me quite as long to figure that out for my child.

[tantrums]

I just read the Signs of OCD in a young child thread and Wow! I guess I didn't understand OCD as much as I thought I did. And I'm a social worker?! Yes, okay - that IS him. The fear of being apart from me, constant peeing (that one has baffled me for over a year now!) and a few others - I just didn't reckognize them as OCD symptoms. The fears I did know where, but when I filled out an OCD scale I found at my office, I got nearly no score on it. Maybe I need to revisit that with my new information.

 

But for now, I think I need to rest my mind and body and get some sleep.

[ajcire]

I'm glad you are able to post now because you just opened the door to such a huge resource. The people here are incredible for information and support. I don't get the science behind any of this and am so amazed at what everyone here seems to know and be able to break down into easier to understand terms. I had a feeling when you saw that ocd list that your thoughts on his ocd might change.

 

 

Hang in there!

[thereishope]

As for school, don't get too scared about the word "special ed services". My son has a speech disorder, has an IEP for it, gets services. He is seen as a special needs child because of his speech. It took me awhile to get over that term "special needs" and even more when it was definied in our state as a disability before it was changed to disorder. I say get the evaluatons done that are needed. If anything, get them done now when he is bad off and will qualify. it's hard to qualify for services. But once you got that IEP in place, they are responsinible until all goals are met.

 

Also, know that if he gets services it doesn't mean he will be pulled out of his current class. They are required to try their darndest to keep the child in a regular classroom and the intervention specialists visit the child in the regular classroom setting.

 

He may also qualify for special help in testing and follow different grading rules than the other children. And thus, make it harder for them to fail him.

 

Back to the croup. when he got croup, did he go on a steroid for it? Did you ever notice improvement while he was recovering from croup?

[ajcire]

Tantrums, I hope you don't mind me adding this but if I remember right you did say at some point in the past he did have strep right? Maybe not often but at all? I think you mentioned you had scarlet fever as a kid too right? To me that means nothing but some of the knowledgeable scientific people here might have some thoughts on that.

[Suzan]

It is good and bad that I have dealt with Chiari Malformation for years. It is similar in that it's something that many doctors either don't know about, or don't acknowledge. I've learned all to well how to advocate and navigate in the medical system and to push to find the right doctors. I had to do that for myself for a long time until I learned what I had and where I stand and how to get the right treatment. Now it shouldn't take me quite as long to figure that out for my child.

 

Isn't there someone else on this board who also has Chiari Malformation? Or did I dream that?

 

T - my heart goes out to you regarding this condition. I can only imagine how much you suffer.

 

Susan