Can't get a handle on this!

[bronxmom2]

Hi, I am frustrated and feeling hopeless again! My son's behaviors keep morphing. A few months ago he seemed stabilized emotionally; our main problem was that he refused to do his school work, I mean he wouldn't write ANYTHING, the teacher was talking about not passing him (despite the fact that he's probably the smartest kid in the class), and I was poised to pull him out to homeschool. Then suddenly he was willing to write --the results were still pretty atrocious, honestly, but he did it willingly and it didn't seem to cause him intense psychological pain as writing had in the past-- so I thought, OK, maybe he is pulling out of this... maybe the writing is the last piece and things are going to get better...

 

Then, a few weeks ago, the rages started. Now a day can't pass without a total emotional meltdown-- usually, there are several. His emotional volatility is extreme.

 

And around the same time, he started to swing his arms all the time. Big, wide swings of his arms-- all the time-- and he can't seem to stop. And he picks at his teeth. And keeps biting the inside of his cheeks, which are now riddled with sores. And his attention span and impulsivity are getting worse again. This weekend we went to the beach and he couldn't stick with anything for more than 30 seconds. Also, if he had the impulse to do something (throw a ball at someone) he could not stop himself from doing it. It was alarming. Watching it, I was getting sick to my stomach... though my family did not see anything that unusual... Now I am starting to have panic attacks myself. I mean real panic attacks. Hyperventilating, tingling extremities.

 

Because the thing is, for a months he's been back on the strong antibiotic my pediatrician did not want to keep prescribing, but then agreed to because his titer levels have not fallen. So for two weeks the Cefdinir helped, then it all started falling apart again.

 

A virus? (We are in NYC) The baby's had a bad cold...

 

Or maybe it's not PANDAS at all, and I'm just "in love with the hypothesis" (as someone said to me once)...

 

Do you guys get relief from your kids' maddening behaviors if you remove them from overstimulating environments? Because I have to constantly remove my child, and if it's just the two of us, or a similar environment that I can control, I can usually get him back.

 

So I have this instinct to pull him out of the school where he MIGHT be getting exposed to something.

 

And I am bracing myself for a horrifying summer of overstimulating houseguests.

 

And getting more and more depressed myself.

 

I have taken him to so many specialists and, as so many of you have experienced, no one does anything.

[nicholas]

Hi, I am frustrated and feeling hopeless again! My son's behaviors keep morphing. A few months ago he seemed stabilized emotionally; our main problem was that he refused to do his school work, I mean he wouldn't write ANYTHING, the teacher was talking about not passing him (despite the fact that he's probably the smartest kid in the class), and I was poised to pull him out to homeschool. Then suddenly he was willing to write --the results were still pretty atrocious, honestly, but he did it willingly and it didn't seem to cause him intense psychological pain as writing had in the past-- so I thought, OK, maybe he is pulling out of this... maybe the writing is the last piece and things are going to get better...

 

Then, a few weeks ago, the rages started. Now a day can't pass without a total emotional meltdown-- usually, there are several. His emotional volatility is extreme.

 

And around the same time, he started to swing his arms all the time. Big, wide swings of his arms-- all the time-- and he can't seem to stop. And he picks at his teeth. And keeps biting the inside of his cheeks, which are now riddled with sores. And his attention span and impulsivity are getting worse again. This weekend we went to the beach and he couldn't stick with anything for more than 30 seconds. Also, if he had the impulse to do something (throw a ball at someone) he could not stop himself from doing it. It was alarming. Watching it, I was getting sick to my stomach... though my family did not see anything that unusual... Now I am starting to have panic attacks myself. I mean real panic attacks. Hyperventilating, tingling extremities.

 

Because the thing is, for a months he's been back on the strong antibiotic my pediatrician did not want to keep prescribing, but then agreed to because his titer levels have not fallen. So for two weeks the Cefdinir helped, then it all started falling apart again.

 

A virus? (We are in NYC) The baby's had a bad cold...

 

Or maybe it's not PANDAS at all, and I'm just "in love with the hypothesis" (as someone said to me once)...

 

Do you guys get relief from your kids' maddening behaviors if you remove them from overstimulating environments? Because I have to constantly remove my child, and if it's just the two of us, or a similar environment that I can control, I can usually get him back.

 

So I have this instinct to pull him out of the school where he MIGHT be getting exposed to something.

 

And I am bracing myself for a horrifying summer of overstimulating houseguests.

 

And getting more and more depressed myself.

 

I have taken him to so many specialists and, as so many of you have experienced, no one does anything.

[nicholas]

hi, i'm sorry to hear about the difficult time you have been having. We went through a similar situation two years ago. Our son was 6 and had the biting tic amongst other physical tics. I'm a special ed teacher and knew the signs but sure didn't expect the explosive emotional outbursts that occurred. You are not alone. My son is now 8 and on Ritalin for school. I am now searching into naturopathic methods in assisting his tics and attention. They must have tourette specialists in New York to assist in times of difficulty. One would think they would. My heart goes out to you...let us know how you are doing. remember we're on your side.

Nicholas

[michele]

Hey we are living double lives. I feel your pain.. Since school was out last Thurs. my son has been an emotional wreck. Moods and OCD are at an all time worse. Meltdowns all day long over everything. I was scared by his anger the past few days. It just escalated too quickly. I am trying to up his meds for awhile to get him stable again. 15 to 20 mg of abilify each day. We work with a psychiatrist who deals with Aspergers and OCD. The tic Dr's don't get the emotional part. My PANDAS son has alot of Aspergers qualities. Last month he was much better and we had upped his meds and he was happier and now all has gone to pot again. i don't know if it is stress or exposure to illness but the kid is flipping out. After the meltdown and refussal to cooperate he will ask for a happy meal. I can't believe it? He says he hates us and wants us to die. He tears up his room and hits and slams doors and screams bloody murder and slaps people. The neighbors have to be tempted to call 911. He is losing it. It is so scary and all I can say is we are a support system right here for one another. We all go through this to some degree and maybe someone has a suggestion that may work for you. lately my son is obsessed for a 11 year old girl and he is 7. He keeps stealing the phone and calling her. He constantly wants things and bugs us endlessly. He calls and asks my inlaws to come get him behind my back. Help!

 

Michele

hi, i'm sorry to hear about the difficult time you have been having. We went through a similar situation two years ago. Our son was 6 and had the biting tic amongst other physical tics. I'm a special ed teacher and knew the signs but sure didn't expect the explosive emotional outbursts that occurred. You are not alone. My son is now 8 and on Ritalin for school. I am now searching into naturopathic methods in assisting his tics and attention. They must have tourette specialists in New York to assist in times of difficulty. One would think they would. My heart goes out to you...let us know how you are doing. remember we're on your side.

Nicholas

[EAMom]

Hi Bronxom/Michele,

 

sorry to hear things are going well.

 

Bronxmom...the "morphing" symptoms is not unusual.

 

I wonder if things are bad b/c of allergies? It's seems to be the season.

 

I do think there is the possibility of intracellular strep which your abs aren't getting. (Azith. is better at getting intracellular strep than cephalosporins...omincef etc.) Azith. also has the advantage of being immune modulating/anti-inflammatory. This seems to be a big factor for my dd.

 

The other (very likely) possibility is that your kids (like mine) have chronically elevated anti-neural (anti-brain) anti-bodies/CaM kinase ll despite being on antibiotics (in my dd's case Azith for 1 year). Per Dr. Cunningham, if your anti-neural anti-bodies are high, any infection can open the blood brain barrier causing symptoms. You don't need strep per se. As we have already discussed, stress can open the bbb as well.

 

Bronxmom...have you sent blood off to Madeleine Cunningham (see worried dads post...he gives info on how to do it)? http://www.latitudes.org/forums/index.php?showtopic=4834 Now is a good time to do it if your son is in an exacerbation. I would strongly encourage you to do so if you haven't.

 

Also, have you seen Dr. Latimer (DC?).

 

Bronxmom...I'm curious...does your son have any tics?

 

It's not unusual for PANDAS kids to become less responsive to abs with time. For Bronxmom, the next step might be to consider Azith/advil and eventually IVIG (or PEX). I know Michele is already on that IVIG path.

 

Good luck and hang in there!

[thereishope]

My son definitely acts up if he is put into a stressful situation, is around a lot of people in a closed environment (like a party at someone's house), or if he is experiencing something different, after it's over, he will have a relaspe.. An ex of that is when my 8 yr old had his First Communion, my 5 yr old PANDAS son sat in the church very nice, but when we got home for the party, his OCD kicked up. I think it was from the internal struggle of doing something he'd rather not do but had no choice. I say he's deprogramming himself. It's sensory overload and if they need to go in their room by themselves, let them. I tend to follow him when he does that, but I've learned if I let him be, he comes out when he's ready and he's calm...like a different child. I do, however, get on my hands and knees and peek under the door to see if he's ok. I've even had him go into the bathroom all mad and come out fine.

 

As for yourself, I've been there. I've sat on the bedroom floor hyperventilating, uncontrolably shaking, and crying. There's times, even though my son is improving, I find myself holding back tears out of nowhere. As a parent, it scars you psychologically to see your child like that.

 

All I can say is whenever you see that small change, cherish it and remember it. Even when my son would pick a sparkly pencil over a plain one, I would smile and be happy because that's something he refused to do prior. That's what gives you motivation and hope to continue the fight to get your child back.

 

One final thing, is your child on any allergy meds? After 11 days on Claritin, he was hyper like you wouldn't believe. We switched to Benadryl and he is fine now.

[bronxmom2]

I just want to thank you all for your thoughts... things have been crazy here so I haven't been on the board for a while.

 

I just made an appointment with Dr. Latimer.... I just hope the insurance company will cover it.

[thereishope]

I just want to thank you all for your thoughts... things have been crazy here so I haven't been on the board for a while.

 

I just made an appointment with Dr. Latimer.... I just hope the insurance company will cover it.

 

 

Perhaps call your insurance and see if you need a pre-approval. What insurance do you have?

[michele]

When is your appointment? Ours is July 7th. I am thinking if the first appointment is not covered because she does not accept any insurance we could plea to our insurance company that we had to go out of network for medical necessity. There is a letter you have to write and they will give you a receipt for insurance. Then the hospital or IVIG should be covered because they bill it a certain code that is accepted. We have Anthem and Latimer thought that would be covered for the IVIG. Not sure though. Does anyone know if Dr. K is billing wit a code that insurance accepts yet?

 

I just want to thank you all for your thoughts... things have been crazy here so I haven't been on the board for a while.

 

I just made an appointment with Dr. Latimer.... I just hope the insurance company will cover it.

[thereishope]

When is your appointment? Ours is July 7th. I am thinking if the first appointment is not covered because she does not accept any insurance we could plea to our insurance company that we had to go out of network for medical necessity. There is a letter you have to write and they will give you a receipt for insurance. Then the hospital or IVIG should be covered because they bill it a certain code that is accepted. We have Anthem and Latimer thought that would be covered for the IVIG. Not sure though. Does anyone know if Dr. K is billing wit a code that insurance accepts yet?

 

I just want to thank you all for your thoughts... things have been crazy here so I haven't been on the board for a while.

 

I just made an appointment with Dr. Latimer.... I just hope the insurance company will cover it.

 

 

Our psychology dept told us to ask the psychiatry dept to bill their services under a med managment code. I'm not exactly sure what "med management " is though. I have UHC. I'm still waiting for a response to see if that's what they did.

[melanie]

Where is this Dr latamer?

[michele]

For awhile our psych was billing under ADHD diagnosis and it was being denied everytime. I guess once the diagnosis is made our insurance will no longer pay for that code. Isn't that lovely? She had to change the code to something else then probably med management as you said.

 

When is your appointment? Ours is July 7th. I am thinking if the first appointment is not covered because she does not accept any insurance we could plea to our insurance company that we had to go out of network for medical necessity. There is a letter you have to write and they will give you a receipt for insurance. Then the hospital or IVIG should be covered because they bill it a certain code that is accepted. We have Anthem and Latimer thought that would be covered for the IVIG. Not sure though. Does anyone know if Dr. K is billing wit a code that insurance accepts yet?

 

I just want to thank you all for your thoughts... things have been crazy here so I haven't been on the board for a while.

 

I just made an appointment with Dr. Latimer.... I just hope the insurance company will cover it.

 

 

Our psychology dept told us to ask the psychiatry dept to bill their services under a med managment code. I'm not exactly sure what "med management " is though. I have UHC. I'm still waiting for a response to see if that's what they did.

[michele]

Dr. Latimer is in Bethesda MD very close to Washington DC. She has hospital rights as several locations and used to be head of ped neurology

 

Where is this Dr latamer?

[michele]

We had such a bad afternoon and evening. Andrew went to manners camp this morning and OT and all went fine. Then this afternoon he had another poop accident and made a huge mess and I made him clean it up. It was every where so I even rubbed some on him. I know I shouldn't have, but I am sick of him rubbing it on things like he ruined my hamper and his comforter, and the carpet and registers. Then tonight he wanted to go to the store with me. He lost it there because I wouldn't let him get a Webkinz. He was running all around the parking lot and wouldn't get into the car. He was sticking out his tongue and putting his fingers in his ears. Then running away everytime I tried to approach him. I threatened o get the cop. He ran down to the store across the parking lot. Then it was closed so he got into the car and ripped up his $20 (we don't know where he got it) then he blamed me just like he did earlier during the BM mess. He says he wanted to die and kill himself. We put him in his room and he got in a fight with my 13 year old and broke her collection dolls. My husband got mad and threw a water bottle and dented the wall. It is like he is going crazy. I know he was sick recently and his eyes are blinking fast and to the sides. What could be going on here? Is this transistion to summer, exposure to illness, meds issues? I am at a loss and all the Dr's do is up his meds. I am really getting scared here. He was asking me to take him to the hospital. He must really feel off. Any suggestions how to handle these horrible behaviors? Is this the Aspergers or the PANDAS or the OCD causing the obsessions over getting things?

 

 

Hi, I am frustrated and feeling hopeless again! My son's behaviors keep morphing. A few months ago he seemed stabilized emotionally; our main problem was that he refused to do his school work, I mean he wouldn't write ANYTHING, the teacher was talking about not passing him (despite the fact that he's probably the smartest kid in the class), and I was poised to pull him out to homeschool. Then suddenly he was willing to write --the results were still pretty atrocious, honestly, but he did it willingly and it didn't seem to cause him intense psychological pain as writing had in the past-- so I thought, OK, maybe he is pulling out of this... maybe the writing is the last piece and things are going to get better...

 

Then, a few weeks ago, the rages started. Now a day can't pass without a total emotional meltdown-- usually, there are several. His emotional volatility is extreme.

 

And around the same time, he started to swing his arms all the time. Big, wide swings of his arms-- all the time-- and he can't seem to stop. And he picks at his teeth. And keeps biting the inside of his cheeks, which are now riddled with sores. And his attention span and impulsivity are getting worse again. This weekend we went to the beach and he couldn't stick with anything for more than 30 seconds. Also, if he had the impulse to do something (throw a ball at someone) he could not stop himself from doing it. It was alarming. Watching it, I was getting sick to my stomach... though my family did not see anything that unusual... Now I am starting to have panic attacks myself. I mean real panic attacks. Hyperventilating, tingling extremities.

 

Because the thing is, for a months he's been back on the strong antibiotic my pediatrician did not want to keep prescribing, but then agreed to because his titer levels have not fallen. So for two weeks the Cefdinir helped, then it all started falling apart again.

 

A virus? (We are in NYC) The baby's had a bad cold...

 

Or maybe it's not PANDAS at all, and I'm just "in love with the hypothesis" (as someone said to me once)...

 

Do you guys get relief from your kids' maddening behaviors if you remove them from overstimulating environments? Because I have to constantly remove my child, and if it's just the two of us, or a similar environment that I can control, I can usually get him back.

 

So I have this instinct to pull him out of the school where he MIGHT be getting exposed to something.

 

And I am bracing myself for a horrifying summer of overstimulating houseguests.

 

And getting more and more depressed myself.

 

I have taken him to so many specialists and, as so many of you have experienced, no one does anything.

[bronxmom2]

Michele, I read your post a few days ago and really felt for you. Are things going any better?

 

I know it is so hard to be angry at your child so much of the time. Where is the line between "their fault" and "not their fault"? It may all be the result of illness and brain inflammation... but we need to hold them accountable, somehow, for behavior that totally crosses the line. Now my stepkids are with us for the summer and it's a nightmare... C. is delirious with overexcitement... we have 4 children in the house and I cannot balance everyone's needs.

 

We are also struggling financially, so I can't get him (or me) any therapy. I keep thinking that getting screamed at as much as he does is going to have huge psychological consequences for him. And also for the baby.

 

I hope for your sake (and mine) that Dr. Latimer can help us. I have decided to just pay the $580 or whatever even if the insurance won't cover it. I will try prednisone and if that has no effect, I may have to try behavioral drugs, which I have resisted to this point and still oppose, really.

 

You asked when my appointment was-- not until mid-August. My son will be traveling in July-- going to see his father in Europe-- something we decided to do a while ago and I think a break might be good for us, anyway. And I don't want to give him the prednisone until I can observe him closely.