urgent help needed re 3.5 yr old behavior

[lmh2402]

i don't even know where to begin

i felt like i was here complaining so much about DD. things with her have been really hard.

and/but things have been slowly spiraling out of control with DS. and i just haven't had the energy or even the clarity of mind to try and write a post to seek advice

but now i need it

seriously. i'm afraid. afraid of how out of control he is.

i actually do not think i can go to work tomorrow b/c i am no longer able to leave him in the care of others. he has turned into a full-on raging psychopath. and i don't use these words lightly

i don't know where or when things started to get so much worse. we've never had an easy time with him. and yes, i expected adjustments when the baby was born. and things were tough. but then they seemed to actually get a bit better.

however, in the past month...something has gone terribly wrong

his sleep is horrific. he is waking up every night screaming. literally screaming. one minute asleep. next minute screaming with rage. he wakes up in the morning. same way. raging. literally, truly. raging. he destroys his room. he throws things at people. he attacks people with hits, punches, kicks, pinching, screaming, clawing.

his voice. hand-to-god. his voice has been hoarse like he's sick for the last four weeks. but he's not sick. it's from screaming.

my DD was christened on sat. he was literally unable to be in the church. he had to be physically removed and strapped into the car seat to try and contain the horrific rage. my father stayed out there with him and missed the whole ceremony and ultimately came back visibly shaken. b/c it is truly that horrifying to witness

tonight we had another scene. and by the way, when i say scene, i mean these things last on a good day...an hour. on a bad day, they can last multiple hours. truly.

anyway, tonight here's what set him off.... ready for it? "(DS), it's time for bed." that's it.

everything was fine. and actual bedtime has not been an issue before tonight. so it's not like this was an anticipated trigger. he just flipped out.

and he just spirals out and out and out of control

to look at him, it's like you're watching a truly insane person. his face is bright red. his ears are bright red. his eyes are bright red. he cannot stand in one place. he's dancing and running in place and tearing around the room literally destroying things in his path. he is screaming unintelligibly. repeating the same demands over and over and over.

tonight he was screaming he wanted to go into the car to calm down.

we have gotten to the point where we had started taking him into the car to calm down b/c it just broke the scenery. we had found that the only way to snap him out of it is to change the environment. literally remove him from the room he's in. and take him some place else. so we've been sitting with him in the car

so tonight he's screaming that he wants to go into the car to calm down. he wants to sleep in the car. and he wants to be happy. and he's clawing my shirt and trying to rip it off me. screaming he only wants my husband.

i don't even know the point of this post. i could go on and on and on.

i am just so lost and terrified. do they medicate children this young?

DH and i have an emergency meeting with a behavioral psychologist on wed afternoon. but i don't even know what that will do for us in the immediate.

we are literally at a point where i think we need immediate help

i don't know what to do. it's like i think he needs to be committed.

and i cannot stand what it's doing to my DD. when the screaming starts her little eyes bug out of her head. it's awful.

i feel horrible for him. i feel horrible for her. i feel like we've utterly failed both of them

if anyone has BTDT with extreme behavior problems with a child this young (3.5), please tell me what, if anything, you ultimately did to get help

[Philly Mom]

I have no BTDT, but I could not read without posting. You are a wonderful mom and have an incredibly stressful year. Hugs to you. :grouphug:

[Momit]

I have no advice but wanted to send a :hug: Things have been so rough for you lately and I hope you are able to get answers soon.

[hillview]

Ok I haven't btdt but couldn't ignore the post. Sending you strength.

[Melaine]

This post breaks my heart for you guys, I am so sorry you are going through such a hard time. I don't have any advice but to say that I know you are obviously strong and you love your children so I'm sure you guys will get through this. I will be praying for you for wisdom in seeking help and that you will be able to find the best people and resources to get some improvement soon.

[SnuggleBuggles]

I am so sorry. I have no wise words. I wish I did!!

[kristenk]

Another poster with no experience but wanting to give you a :grouphug:.

The only thing that I wondered about when reading your post was food dye sensitivity. I don't have any experience with that, either, but I know I've heard some people say it's like a switch gets flipped and the kiddo can't control his or her behavior.

Any possibility that he's been eating stuff lately that he hadn't been eating before?

[g-mama]

I wish I had some words that would help. Just pray for strength and wisdom and patience. I'll be thinking of you and hoping you can get a handle on this. I'm sorry I don't have any advice, just sympathy. We're here for you. :hug:

[todzwife]

My thoughts went to food allergies as well. Before we got Maddie diagnosed with the gluten intolerance, she would go into fits of rage as well that could last HOURS. I remember sobbing to my mom on the phone that I was ready to take her to the ER so they could admit her because I did not know what to do for her.


I hope you get some answers!

[Pepper]

Yes, they do medicate kids that young.

I'm glad you were able to get an emergency meeting with a behaviorist...my first thought was PANDAS, then bipolar or another mood disorder.

Is DS having nightmares? Did he always have trouble sleeping, such as waking up but the screaming is new, or is the whole waking up thing new?

Our DS1 started having behavioral problems at age 2-1/2. For a while we thought he was bipolar but now his psychiatrist tells me that he's a better fit for a mood dysregulation disorder (which is a new diagnosis that;s in the revised version of the DSM coming out next year).

In the meanwhile, you could cross-post in the special needs forum ( though lots of those mamas are active int he lounge as well). You might akso take a loo at The Balanced Mind website.

Sending big hugs...hang in there...

[lmh2402]

Another poster with no experience but wanting to give you a :grouphug:.

The only thing that I wondered about when reading your post was food dye sensitivity. I don't have any experience with that, either, but I know I've heard some people say it's like a switch gets flipped and the kiddo can't control his or her behavior.

Any possibility that he's been eating stuff lately that he hadn't been eating before?

no, we actually know he has issues with food dye so we're very cognizant to not let him have any. particularly red coloring

though i have been thinking that maybe he's having too much refined sugar lately. we allow him to have a small dessert after lunch and dinner. was thinking maybe i should cut that out totally...but i'm actually afraid to do it b/c i know it will be a major, major scene. days long for sure. he does not ever let things go or drop. ever.

[amldaley]

DD1 went through this at the same age. It was aweful. She screamed so much in fits of rage, she gave her self nosebleeds.

No advice. Just lots of :hug:

[mytwosons]

I'm so sorry. DS1 was similar and was diagnosed with autism. A DAN Dr. and lots of hard work got our son back and he's now a delightful 9 year old.

[Melaine]

no, we actually know he has issues with food dye so we're very cognizant to not let him have any. particularly red coloring

though i have been thinking that maybe he's having too much refined sugar lately. we allow him to have a small dessert after lunch and dinner. was thinking maybe i should cut that out totally...but i'm actually afraid to do it b/c i know it will be a major, major scene. days long for sure. he does not ever let things go or drop. ever.

If you know he has sensitivities to dye, have you heard of the GAPS diet? I think I might consider it under those circumstances. A friend is using it with success in treating some issues in her family like anxiety among other things. Just what you need, more dietary restrictions huh? http://gapsdiet.com/

[lmh2402]

Yes, they do medicate kids that young.

I'm glad you were able to get an emergency meeting with a behaviorist...my first thought was PANDAS, then bipolar or another mood disorder.

Is DS having nightmares? Did he always have trouble sleeping, such as waking up but the screaming is new, or is the whole waking up thing new?

Our DS1 started having behavioral problems at age 2-1/2. For a while we thought he was bipolar but now his psychiatrist tells me that he's a better fit for a mood dysregulation disorder (which is a new diagnosis that;s in the revised version of the DSM coming out next year).

In the meanwhile, you could cross-post in the special needs forum ( though lots of those mamas are active int he lounge as well). You might akso take a loo at The Balanced Mind website.

Sending big hugs...hang in there...

he's been waking up in the mornings like this for a long time. so long that i can't remember when he didn't wake up like this. and long enough that we did already work with a behaviorist last spring to try and work through some of our morning issues. and it originally helped...but not any more.

but the awful night wakings. that is new. in the last month or so.

thank you so much for the tip for the other website. will definitely look

thanks to all for the hugs

i feel so ill. i can't stop crying. my poor baby. my poor babies. they are both suffering and it's pretty much more than i can take. i just can't take anymore.

[lmh2402]

If you know he has sensitivities to dye, have you heard of the GAPS diet? I think I might consider it under those circumstances. A friend is using it with success in treating some issues in her family like anxiety among other things. Just what you need, more dietary restrictions huh? http://gapsdiet.com/

no, i never heard of this. thanks you so much, melanie

mytwosons, how does one find a DAN doctor?

[inmypjs]

I also wanted to say how sorry I am that you are going through this. I would try to find a specialist that you can really put your trust in - either a developmental ped or a DAN doctor. I have heard good things about DAN doctors even for kids without an autism diagnosis. I would also explore the food allergies more.

[Pepper]

Melatonin helped get rid of the multiple night wakings/nightmares.We started at 1 mg given at bedtime - ask the behaviorist or his doctor about it though, before you try it. After a few months on melatonin our DS's psych said he needed a break from it so we've been giving him benadryl at bedtime instead and the nightmares have not returned (he used to wake up 2-3 times a night, screaming his head off. He'd tell me about the nightmares and they were horrifying...we've always been careful about TV and books, etc so I don't think the nightmare were caused by something scary that he'd seen on to or elsewhere).

[AJP]

I don't have any advice but wanted to give you hugs. You clearly have been through so much already and you're clearly a great mom!! I hope you can find some answers to give all of you the results and peace you so desperately need. Just know that you are doing your best to help him and hopefully he will be back to himself with that help soon! :grouphug:

[Reader]

I would say food allergies as well (from my experience with 3 kids with food allergies) and also yeast. I would try to see a DAN doctor (Defeat Autism Now) because they are well-versed in food allergies, food chemical sensitivities (like food dyes) and treating yeast. Yeast overgrowth makes my 3 year old extremely aggressive. I am not suggesting your child is autistic, it's just that DAN doctors seem to be the most up to date with regard to this sort of thing.

Just saw your post above asking about a DAN doctor...here's a list:
http://www.autismtoday.com/clinician-list.html

[lmh2402]

ok so yes i want to find a DAN doctor. seems like that would be a great step for us. totally open and ready to explore food allergies. he was skin tested for common food allergens right around 18 months and all came back negative, but things can change right?

please, anyone know how to find a DAN doctor? does anyone have a great reco for one in the NNJ or NYC area?

thank you

[daisymommy]

My thoughts went to food allergies as well. Before we got Maddie diagnosed with the gluten intolerance, she would go into fits of rage as well that could last HOURS. I remember sobbing to my mom on the phone that I was ready to take her to the ER so they could admit her because I did not know what to do for her.

I hope you get some answers!

:yeahthat: NAK red dye especially (which doesn't show up on allergy tests btw...). But yes, my DS1 was similar to this when he was young for about 2 years. He flipped over an entire bunk-bed set at the age of 4! Started meds at age 5 for ADHD, diagnosed w/autism last week. Feingold diet has been a life saver, but not a magic bullet.nia

ETA; I don't want to scare you, but I would ask about testing for bipolar or schizophrenia :hug:

[mytwosons]

I would say food allergies as well (from my experience with 3 kids with food allergies) and also yeast. I would try to see a DAN doctor (Defeat Autism Now) because they are well-versed in food allergies, food chemical sensitivities (like food dyes) and treating yeast. Yeast overgrowth makes my 3 year old extremely aggressive. I am not suggesting your child is autistic, it's just that DAN doctors seem to be the most up to date with regard to this sort of thing.

Just saw your post above asking about a DAN doctor...here's a list:
http://www.autismtoday.com/clinician-list.html

:yeahthat: They are awesome dectives and can get to the bottom of the cause.
:22: Hang in there.

My son would get very aggressive when he had a bacteria in his gut. Violent, etc. Antibiotics and now probiotics take care of it.

[Clarity]

I'm glad that you've made an appt to get some help. My dd1 used to throw horrific tantrums but she has gotten better as she has gotten older. I remember 3.5 was particularly bad. I know there is very little reasoning with them when they are out of control like that but the one thing that I wished I had tried harder to do was to teach her some self soothing techniques. She would scream at us to hug her but it was a challenge to set aside our own frustration and want to hug her when she was in the midst of a tantrum like that. I always did but dh would get caught up in thinking it was manipulation - it wasn't, it was a cry for help. That's where it sounds like your son is; he's asking for help. The behaviorist should be able to give you some suggestions on how best to do that but I would start by acknowledging his feelings, "I can see that you are upset" and then asking how you can help him calm down. It sounds silly but I think that he might surprise you.
My df has a son with ODD and his behavior is harder to manage. They've put him on ADHD meds and he seems to be improving.
The one thing I wonder...when did this behavior start to get worse? Has his diet changed lately? Is bedtime later? My dd still acts up when she is overtired. She turns into a pumpkin if she is not in bed by 8:00pm.

[mytwosons]

James neubrander in NJ is a big name. He is well known for mb12 injections. There office should be able to give you some other suggestions of drs you can get to see sooner.

Kenneth bock in NY is another name I recognize.

[lmh2402]

I'm glad that you've made an appt to get some help. My dd1 used to throw horrific tantrums but she has gotten better as she has gotten older. I remember 3.5 was particularly bad. I know there is very little reasoning with them when they are out of control like that but the one thing that I wished I had tried harder to do was to teach her some self soothing techniques. She would scream at us to hug her but it was a challenge to set aside our own frustration and want to hug her when she was in the midst of a tantrum like that. I always did but dh would get caught up in thinking it was manipulation - it wasn't, it was a cry for help. That's where it sounds like your son is; he's asking for help. The behaviorist should be able to give you some suggestions on how best to do that but I would start by acknowledging his feelings, "I can see that you are upset" and then asking how you can help him calm down. It sounds silly but I think that he might surprise you.
My df has a son with ODD and his behavior is harder to manage. They've put him on ADHD meds and he seems to be improving.
The one thing I wonder...when did this behavior start to get worse? Has his diet changed lately? Is bedtime later? My dd still acts up when she is overtired. She turns into a pumpkin if she is not in bed by 8:00pm.

we have tried this. uttering the words, "i can see you're upset." makes him MORE upset. saying almost anything...makes him more upset. i spend most of my day trying to tiptoe on eggshells and not set him off. and when he's off...then i tiptoe some more to try and not make it worse

[lmh2402]

James neubrander in NJ is a big name. He is well known for mb12 injections. There office should be able to give you some other suggestions of drs you can get to see sooner.

Kenneth bock in NY is another name I recognize.

thank you, thank you

[edurnemk]

DD1 went through this at the same age. It was aweful. She screamed so much in fits of rage, she gave her self nosebleeds.

No advice. Just lots of :hug:

DS also had awful fits (though not as extreme as OP describes) at around 4 yo. It was worse about 2 months before DD was born. He screamed in rage a LOT, hit me and my mom, it was awful, I have no advice, though. I has slowly gotten better, I put him in his room to calm down every time but it was very hard for me to keep it together :grouphug:

[trcy]

No advice but want to send :hug: You have been through a lot. I hope you get answers and solutions soon.

[Reader]

Kenneth bock in NY is another name I recognize.

I've read his book Healing the New Childhood Epidemic. I live on the other side of the country but would go see him if I lived in NY.

[lil_acorn]

I'm so sorry you are going through this. I don't have any BTDT experience with my kids that young, but my 7 year old used to have violent tantrums over the smallest things. He ultimately was dx'd with depression. We did medication, neuropsych eval, and counseling and thankfully he improved within a year. But it was a very difficult journey.

How long has this been going on? Is it possible one of the triggers has been the birth of the new sibling? Does he go to pre-school and does he act up there? They say it's a good sign if he only acts like a maniac at home.

I'd suggest finding a psychiatrist too and getting the neuropsych eval done.

Good luck to you and hang in there. I know it is easier said than done. Try to take turns with your husband so that when one is utterly frustrated and dejected, the other can pick up the slack.

[mytwosons]

I've read his book Healing the New Childhood Epidemic. I live on the other side of the country but would go see him if I lived in NY.

I was too tired to place the name. He is definitely the dr I would see. Tell the staff how bad things are and see if they can't see DS ASAP.

Eta: Rhey could at least hopefully order stool tests to get started. Cholistra (sp?) made my DS a raging maniac. There was absolutely no way to calm him.

[maestramommy]

Couldn't read and not give you big hugs. :hug::hug::hug: Hope the specialist has some answers for you!

[daphne]

How long has this been going on? Is it possible one of the triggers has been the birth of the new sibling? Does he go to pre-school and does he act up there? They say it's a good sign if he only acts like a maniac at home.
.

This is what I was wondering, as well. Many disorders, etc. have to be seen across environments, so I was wondering about his behavior at school or with other people.

My son used to have raging, screaming fits when he was younger. All I could do was sit down with him, with my front to his back and wrap my arms (actually pretty much my whole body) around him tightly until he calmed down. It was exhausting. Hugs!

[chlobo]

I second gluten intolerance.

Or have you considered Lyme?

[twowhat?]

I really hope you find some answers. My DD2 is our difficult child and that age was the peak of the worst of it - tantruming for hours at a time. I was at my DH's throat. He was at mine. The dogs kept themselves holed up in the bedroom. We were truly unhappy, always on edge, and I really wanted to commit MYSELF. I feel like we're just coming out of that fog.

So your description of your DS sounds so absolutely miserable:(

[123LuckyMom]

I am so so sorry you are going through this! I heard some good news in your post, though. You said he asked to go to the car to calm down. This means he is recognizing that he is out of control, he wants to be in control and not raging, and he is actively seeking solutions to help himself. Your son is no psychopath!!! He sounds like a bright boy who is suffering. I have no advice to offer on what you can do before you see the behaviorist except to try to be as calm and loving as you can and tell him you and his daddy are going to do everything in your power to help him feel better as soon as you can. Tell him you're so sorry you don't know how to help him yet, but you're going to start learning on Wednesday. Give him hope that life will not always be this way and that he will feel better. And he will! I would look for a really good psychologist as well as pursuing any dietary issues. Your behaviorist may not be a doctoral level person qualified to do testing as a psychologist is. Start with the behaviorist, but I would suggest not stopping there. Hugs to you!!!

[Melbel]

I am sorry to hear your son is still suffering. As part of a differential diagnosis and work up, I would suggest the following:

Testing for Strep and Mycoplasma (consider PANS/PANDAS)
Lyme (rages are common of neurological lyme; testing in young children is especially challenging though because the immune system is immature and may not mount antibodies; consider a newer test that actually tests for the Lyme bacteria, not immune response, at Advance Labs)
Bartonella (another tick born illness that some think is more common than Lyme and can cause rages; often a co-infection of Lyme)

Has your son recently been ill (before the most recent rages)? A prior poster mentioned PANDAS/PANS. Rages are common with PANDAS/PANS (often linked to strep or other infections such as mycoplasma). I seem to recall some OCD type behaviors with your son which is a primary symptom. Re-exposure to strep will set off nasty symptom flares. http://www.ocfoundation.org/PANDAS/
http://www.nimh.nih.gov/about/director/2012/from-paresis-to-pandas-and-pans.shtml
http://pandasnetwork.org
http://www.pansawareness.org

There is tremendous overlap between PANDAS/PANS and Lyme. Often times, children are diagnosed with both. Many are also diagnosed with autism (some doctors believe that a very large percentage of autism cases are actually triggered by an underlying infection).

My son had panic attack type rages prior to diagnosis with Lyme. Rides in the car seemed to help him as well. After treating with antibiotics, the attacks have gone away, thankfully.

Illness can also cause flares in Lyme/Bartonella symptoms because the immune system is overwhelmed. Another exposure or tick bite would also explain a flare in symptoms.

I would be extremely careful to rule out Lyme or other infections before using psychiatric medications because there is a high incidence of severe side effects (IMO due to the fact that the brain chemistry is altered due to infection). Elavil, given in a very low dose to combat vertigo, is actually what triggered my son's first attacks (he had no prior history of any psych issues). In a pamphlet for psychiatrists, oversensitivity to psych meds is actually a reason to suspect Lyme.

ETA: We did find melatonin was helpful for our DS as well.

[LizLemon]

ok so yes i want to find a DAN doctor. seems like that would be a great step for us. totally open and ready to explore food allergies. he was skin tested for common food allergens right around 18 months and all came back negative, but things can change right?

please, anyone know how to find a DAN doctor? does anyone have a great reco for one in the NNJ or NYC area?

thank you

Please be careful. I believe DAN has a history of doing dangerous treatments such as chelation, which can be lethal to children and do not have evidence supporting their use in autism. I think we can all agree that your son's symptoms are challenging - what's less clear is what is causing them. You can see by the number of people responding to suggest widely different etiologies. It is quite possible that different specialists will give you different answers as well. Please keep in mind what seems best for your son. :hug:

[Pennylane]

No advice but hope you find some answers soon. Thinking of you and your family.

Ann

[misshollygolightly]

Just sending you big hugs and praying for some fast relief for you and your family. I haven't read all the posts and I have no medical qualifications or BTDT, but a few thoughts

-I wonder if melatonin would help with the night waking, which might in turn help him be better rested and less short fused (I'd talk with a doctor before giving it to him, but I know it is sometimes used for kids--it's the only way my friend's autistic DS gets any sleep!)

-it seems like a good sign that he asks to go to the car to calm down. Maybe you can teach him techniques for self-calming (and practice them throughout the day so he knows what to do when the rage comes). Maybe a song or mantra he can repeat would help? Would it help him to channel his physical rage if he had a "safe" pillow to punch?

You must be so exhausted and you sound discouraged, but you're doing a *great* job and you will all get through this! I'm sure the therapist will have some good ideas for you. You are NOT failing your kids--you're advocating for them and seeking out help!

[twowhat?]

You know, I just wanted to add something - you say that when he asks to go to the car, you go and sit there with him.

When DD2 was at her worst with tantrums I used to sit with her in a bedroom while she screamed. I thought I was completely ignoring her but a mom friend of mine pointed out that really I was just a "captive audience". She turned out to be right. Once we moved the time-outs to the bathroom (because DD2 would pee all over the floor on purpose and scratch herself bloody) the tantrums because much shorter in duration within a period of weeks. And yes, I had to hold the door shut to keep her from getting out. So the key for us was to ABSOLUTELY AND TOTALLY ignore. Then once she was calm, I could get her cleaned up and then we could sit and talk - calmly.

And - my DD2's daytime tantruming also translated to nighttime wakings and tantruming and limit setting problems. So at the same time we basically had to Ferberize, and it took about 3-4 days of ferberizing if I remember right but getting her nighttime sleep fixed definitely also helped so she wasn't so grouchy during the day.

Anyway, I don't know if that would help you. I thought I remember your DS may have some sensory issues as well? But I just thought I'd mention it in case it helps.

[musicalgrl]

I give you credit for being strong and doing a great job in a really tough situation.

[Melbel]

I forgot to mention another treatment that you may consider exploring with your son's health care professional, Low Dose Naltrexone.

It has been used successfully with autistic children to reduce inflammation and improve cognitive function. It is also helpful to improve sleep. There are numerous ongoing clinical trials because it has been shown to help with a variety of serious health conditions including brain cancer, MS and Crohn's Disease (several at Duke).

If there is an infectious origin, I believe the rages are caused due to brain inflammation. LDN is commonly as part of Lyme treatment.

I researched carefully before deciding to give LDN a try on our son and it really helped him quite a bit. We have the medicine compounded into a transdermal cream that we give at night time.

[citymama]

I'm so sorry. Your heart must be breaking for your DS. I hope you get some answers soon. Hugs and wishes for strength.

[lmh2402]

Thanks, everyone

Melbel, yes to ongoing seemingly OCD issues. Since he was really young. In fact, the night wakings started now that i think of it, about 6/7 weeks ago with him obsessively calling (3, 4, 5 times a night) for us to come straighten his blankets. He would scream that they "weren't square and straight and flat." I tried buying a comforter much bigger than he needed thinking if it were much bigger than needed, he would likely always be covered...problem solved. But no such luck. Eventually took all blankets away and bought giant custom sleep sacks for warmth bc the blankets were just a total inhibiting obsession. This is just one small example. Every single day. Every move, or thought, or idea..I have to double, triple, quadruple think....will this end up being unproductive obsessing. It sucks.

I want to have him tested for anything and everything we can possibly test for.

[ArizonaGirl]

No real BTDT except my DS has major OCD traits including the blanket issue so :hug:

[theriviera]

I am so sorry and I hope that your appointment on Wednesday will help you guys.

A friend's daughter had raging tantrums like you describe and it turns out it was celiac disease.

[sweetsue98]

:grouphug: just wanted to offer hugs to you! You are doing and excellent job and this will pass. Hopefully sooner than later. Good luck Wednesday and keep us posted!

[lcarlson90]

I don't have any advice but I just wanted to say that I am so sorry you are dealing with this. I know things with your DD have stressful and I am this is adding to the stress. :hug5:

[StantonHyde]

I am assuming that you have seen a psychiatrist? And that you have had neuropsych tests done? If not, you need to do that first. You can chase dietary stuff forever, you need to get a look at how his brain is doing.

And even before that--a psychiatrist may want to admit him to a psych hospital for observation. At our psych hospital, we treat kids as young as 4 and we have admitted a 3 yo. That way you have dedicated staff who are observing your child, they are trained in handling aggressive behavior, etc. (and they go home at the end of the shift and a new staff person comes again--makes a HUGE difference). It may not be a medication issue, it might be a structure issue. They even have therapists who come into your house and observe you with your children to see if they can figure out what is going on. This does NOT mean you are a bad or incompetent parent. It just means that you have a challenging kid.

I also think it is encouraging that he knows to go to the car to calm down--he wants to calm down. You do have some good stuff to work with here.

Go ahead and pursue the dyes, gluten, Lyme, bacteria and yeast. But do NOT do that at the ommisison of psychiatric care. Good luck and big hugs.

[California]

((hugs)) Following this thread with interest. There is a little girl in my family with similar issues, and her parents feel like hostages to her temper. It is incredibly stressful. Their pediatrician first had them (the parents) take turns staying up for a night to see how much their DD was sleeping. Turned out she wasn't sleeping much-- she was staring at her ceiling for hours. So then the doctor ran a panel of tests and found out she had anemia caused by vitamin deficencies and they first addressed that. That helped her sleep more and the frequency of the tantrums decreased. Now they are working to decrease the severity of her tantrums. Tantrum isn't the right word for it. A tantrum to me seems to suggest that the kid willfully gets upset. In this little girl's case, she loses control. There is nothing willful about it. She is as freaked out by it as her parents are.

Did your DS's behavior change when he started waking up more at night? It could be that there is a link there for you to start with.

My relatives are absolutely loving and devoted parents. It sounds like you are too. You haven't done anything to cause these fits-- something is off with your son's body, and he is scared and out of control, and you are seeking help for him. You are doing everything you can and it will get results. All this info you are getting here I am definitely going to share with my relatives! It may help them too.

[wifecat]

I have not BTDT, but thinking of your family and sending tons of positive thoughts your way.

Your story did remind me of a podcast from This American Life - the segment was called Black Hole Son and it was about a child who was bipolar and ultimately, ended up being treated and his terrifying behavior ceased.http://www.thisamericanlife.org/radio-archives/episode/207/special-ed?act=2

Obviously, I have no idea if this is similar, but it might feel reassuring to hear this mom's story. She was scared of her son, and scared to tell anyone about how he was acting. She was blaming herself, and ultimately, there was a chemical reason for what was going on.

[KpbS]

I am assuming that you have seen a psychiatrist? And that you have had neuropsych tests done? If not, you need to do that first. You can chase dietary stuff forever, you need to get a look at how his brain is doing.

And even before that--a psychiatrist may want to admit him to a psych hospital for observation. At our psych hospital, we treat kids as young as 4 and we have admitted a 3 yo. That way you have dedicated staff who are observing your child, they are trained in handling aggressive behavior, etc. (and they go home at the end of the shift and a new staff person comes again--makes a HUGE difference). It may not be a medication issue, it might be a structure issue. They even have therapists who come into your house and observe you with your children to see if they can figure out what is going on. This does NOT mean you are a bad or incompetent parent. It just means that you have a challenging kid.

I also think it is encouraging that he knows to go to the car to calm down--he wants to calm down. You do have some good stuff to work with here.

Go ahead and pursue the dyes, gluten, Lyme, bacteria and yeast. But do NOT do that at the ommisison of psychiatric care. Good luck and big hugs.

A big :yeahthat: to all of the above. If you feel physically threatened or in danger or feel like he is in danger from his behaviors, BY ALL MEANS, take him to the hospital, ASAP. I know you have dealt with a lot, huge amounts of over the top tantrums which are definitely outside the norm but please do not hesitate to go seek help, immediate psychiatric help. Clearly this is a very explosive situation and your DS1 is very agitated. Don't worry about labels or the future right now, you've got to protect yourself, your DD, and your DS from himself.

Many hugs, mama. You can do it. :grouphug:

[StantonHyde]

If you feel physically threatened or in danger or feel like he is in danger from his behaviors, BY ALL MEANS, take him to the hospital, ASAP. I know you have dealt with a lot, huge amounts of over the top tantrums which are definitely outside the norm but please do not hesitate to go seek help, immediate psychiatric help. Clearly this is a very explosive situation and your DS1 is very agitated. Don't worry about labels or the future right now, you've got to protect yourself, your DD, and your DS from himself.

Many hugs, mama. You can do it. :grouphug:

I failed to put this in my post. Trust me, you won't be the first parent to bring a young child because you rightfully fear they are going to hurt you/someone else/themselves. Obviously, nobody wants to do this and I wouldn't recommend doing it at 9 pm on a Saturday night--but if you have to, do it. You won't necessarily get answers at that weekend hour, but you will get some help. e.g don't expect them to "get to the bottom of this" but they may admit your child for observation. This isn't "committing" him. This is getting him help--IF you need to go that route. Not saying it is a must. Just be open that it might be necessary.

[mjs64]

Hugs hugs hugs.

[mmommy]

Your story did remind me of a podcast from This American Life - the segment was called Black Hole Son and it was about a child who was bipolar and ultimately, ended up being treated and his terrifying behavior ceased.http://www.thisamericanlife.org/radio-archives/episode/207/special-ed?act=2

Obviously, I have no idea if this is similar, but it might feel reassuring to hear this mom's story. She was scared of her son, and scared to tell anyone about how he was acting. She was blaming herself, and ultimately, there was a chemical reason for what was going on.

This is exactly what I was reminded of reading the OP.
I'd agree on the sleep and psych work ups first, as dye and allergy will take longer to trace.

[queenmama]

Oh, mama. Hugs from me, too. I wish I knew how to help your poor boy. Praying you're led to just the right people and that they know what he needs.

Lara

[OKKiddo]

we have tried this. uttering the words, "i can see you're upset." makes him MORE upset. saying almost anything...makes him more upset. i spend most of my day trying to tiptoe on eggshells and not set him off. and when he's off...then i tiptoe some more to try and not make it worse

I keep seeing you writing this and talking about the escalations. I felt the EXACT same way with my older son when he regressed (he's moderately autistic) and I'm not saying your son is autistic or is regressing. I just remember how it felt--I felt like I had no control even though I would try to micromanage the world around us and I was super anxious because I knew at any second it would all be blown to bits by an explosion--set off by something that my hyper aware self would miss. I would avoid things I knew to be a trigger and still dread that it would be the unknown the next time. I also remember the guilty feeling because I had a younger son (infant at the time) and he was frequently set aside somewhere safe to deal with my older son. I felt like I wasn't doing a very good job or like I was failing both of them.

So, know that I identify with your feelings but remember this: YOU ARE NOT AT FAULT!!! You are a GREAT mom! You and your children WILL get through this! Please, take strength from knowing that others are here to listen and offer advise and ASK for help from others.

Lastly, when my oldest was in the midst of his regression he would also seek comfort from snug places. That car seat thing? I bet you snug him in tightly don't you? With my son we would squeeze him (arms in/arms out however he preferred it at the moment). Squeeze and rock and often squeezing while changing the scenery (do I ever remember that one!!). Wrapping our arms around his torso covering as much of his torso as we could and just holding him as tightly as he'd allow would calm him within minutes. I also went back to wearing him (often on my back because of the baby needing to be held too) because that seemed to soothe him as well--but only if he was already coming out of his rage or sometimes we'd head it off when he'd start acting kind of sensitive and we'd pop him on our backs (we had an Ergo, Beco, and lots of wraps).

I'll be praying for you guys and I hope you can get in and get some answers quickly! Hugs for you because I know you need them too!

[brittone2]

IIRC, you guys saw a dev. ped a while back, right? The thought at the time was that he might be close to Asperger's, but the doc said he could (or would?) likely outgrow it?

I would get back into that doc, which I know can be a looooong wait. I would document what's going on now. They may tweak things now and decide to diagnose him.

Assuming it will be a long wait, maybe also call neuropsych and get on the list for an appt.

I agree that if you need immediate psych care for him, then you need to do it.

You didn't cause this, it isn't your fault. :hug:

[Melbel]

I am thinking of you this morning and hope you had a reasonably good night.

Since you are open to testing, here are a couple of well reputed labs (mainstream labs miss a majority of the cases because they are not sensitive enough):

Advanced Labs and/or iGenex for Lyme
http://www.advanced-lab.com
http://igenex.com/Website/

Fry Labs for Bartonella
http://www.frylabs.com

A couple people mentioned either yeast or celiac/gluten, both of which also happen to be very common with Lyme Disease (my 3 children with Lyme have issue with both, as well as dairy sensitivity). There is tremendous overlap in aliments/symptoms which makes it tricky to navigate. Wheat and dairy are common offenders for inflammation, which you may want to reduce/eliminate (after blood draw for testing for gluten and casein sensitivity). Yeast if fueled by sugar (and causes sugar cravings). I would try to limit sugar where possible (juice or sweet drinks are big offenders; start reading labels and opt for lower sugar options).

For an over the counter remedy to help settle the rages, you may want to consider Rescue Remedy Kids which we found helpful.

I am hoping that you land with a doctor who is well versed in Lyme/other tick born diseases, Autism, Celiac, and PANDAS/PANS and praying that you are able to find answers/relief soon.

[mytwosons]

I forgot to mention another treatment that you may consider exploring with your son's health care professional, Low Dose Naltrexone.

It has been used successfully with autistic children to reduce inflammation and improve cognitive function. It is also helpful to improve sleep. There are numerous ongoing clinical trials because it has been shown to help with a variety of serious health conditions including brain cancer, MS and Crohn's Disease (several at Duke).

If there is an infectious origin, I believe the rages are caused due to brain inflammation. LDN is commonly as part of Lyme treatment.

I researched carefully before deciding to give LDN a try on our son and it really helped him quite a bit. We have the medicine compounded into a transdermal cream that we give at night time.

:yeahthat: LDN has really helped my son.

[mytwosons]

Please be careful. I believe DAN has a history of doing dangerous treatments such as chelation, which can be lethal to children and do not have evidence supporting their use in autism. I think we can all agree that your son's symptoms are challenging - what's less clear is what is causing them. You can see by the number of people responding to suggest widely different etiologies. It is quite possible that different specialists will give you different answers as well. Please keep in mind what seems best for your son. :hug:

There was one death, not due to chelation, but accidentally giving the incorrect medicine instead of the chelator. DAN drs do not have a history of doing dangerous treatments and all of the ones I talked to would give information and suggestions, but the parents decide on the treatment. FWIW, I never had a DAN dr suggest traditional chelation for my son.

[TxCat]

No BTDT, but wishing you lots of luck helping your son and getting your family through this. :grouphug:

[Melbel]

I am hoping that you land with a doctor who is well versed in Lyme/other tick born diseases, Autism, Celiac, and PANDAS/PANS and praying that you are able to find answers/relief soon.

I posted a request for recommendations for a doctor with the above areas of expertise on one of my parents of children with Lyme groups (many also have a PANS/PANDAS and/or autism diagnosis as well).

Here are a few more names to explore (check reviews, expertise, etc.):

Warren Levin may also have a NY office. He is described as brilliant but pricey. His is also listed in the DAN doctor list linked above by another poster.
www.warrenmlevinmd.net

Rosario R. Trifiletti, MD PhD, LLC
A pediatric neurologist who specializes in PANDAS in NJ
http://www.site.neurokidsr.us
There are links to peer reviewed studies on PANDAS that you may also find helpful.

Scott Smith, PA
He was recommended by a mom I trust (solid researcher and pointed us in the right direction with our VT Lyme pediatric specialist; she has children with Lyme and PANDAS)
Physician Assistant
100 Menlo Park, Suite 410
Edison, NJ 08837
732-906-9000
732-906-9015 (fax)
www.drneubrander.com

Here is a link to other PANDAS doctors (I imagine you may have some overlap with the DAN doctors): http://www.savingsammy.net/providers.php

[lmh2402]

Night was ok ish

Only two wakings and both were not totally hysterical. More moaning and only a little bit of shrieking. Unlike most other nights lately, last night he wasn’t actually awake. He was definitely still sleeping. I went into his room and he was saying, “no, mama. I don’t need you. I don’t want you. go away.” but at least he wasn’t screaming.

This morning he woke up amazingly pleasant. But we also jumped through every hurdle to make sure that the situation was primed to be as successful as possible. DH and I were both showered and ran right in as soon as he called.

This is where/why we start to question ourselves – issues vs. behavior. Yesterday, before last night, we were having an ok day. DH was home from work b/c the markets were closed. We left the au pair with the baby and we both drove him to school. We both picked him up. We both took him to OT. And DS was relatively calm and behaved.

But reality is, most days DH is gone for work from 7am – midnight. I’m working and I have a nursing infant. We have an au pair who is seriously like a god-send. This girl puts up with more than I think most people would put up with. DS tortures her.

He gave her a very hard time when she first arrived in May, but then things got better. And he started seeming to really rely on her.

But again, in the last month…he has reverted to his horrifyingly nasty ways. When she comes downstairs in the morning, he will look at her and scream at the top of his lungs, “NO (her name)! I don’t like you! I want you to leave and go back to Brazil! Go away (her name)!!”

He will hit her, slap her, kick her, throw things at her. And no amount of speaking, yelling, screaming, asking, explaining, etc, etc, etc from me or DH does anything. We’ve done time outs. We’ve tried talking nicely before she comes downstairs.

At this point, we’re in avoidance. So yesterday was a basically ok day b/c she was with the baby and he “got his way.”

Someone asked if he goes to school – yes, he does. Five mornings a week and I’ve asked the teacher a million times in the last three weeks if there has been any inkling of this kind of behavior at school and she consistently says no. Says he’s one of the most polite, compassionate kids in class. She did note that there is a little girl in his class that seems to upset him. he has been talking about her a bit a home too – that he doesn’t like her. The teacher said she is “difficult” and has been giving a number of the other kids anxiety.

We had problems last year twice when kids at school seemed to ratched up DS’ anxiety. But both times last year, it presented very differently. It was very clear that there was a correlation between them and his behavior changes. This time, it’s not really seeming to be to be so much related to this little girl.

And/plus, this is life, right? I mean, there are kids in your class that you’re not going to be a huge fan of. We can’t control his every environment every moment of every day

And back to the behavior piece, he KNOWS. I mean, I KNOW HE KNOWS that it is never, ever ok to speak to someone the way that he speaks to the au pair. For some reason, most of his venom is directed toward her. It’s so awful and embarrassing.

She came down the other day and said to me, “I woke up this morning thinking about what I could do just right to make it a better day.”

It was so devastating to actually hear those words come out of her mouth. To realize that now every adult in our household is reduced to waking up with the thoughts of how to not misstep each moment of each day. I swear, it’s as if we’re all thinking to ourselves, “well, if we only breathe through our right nostril while tapping our left foot twelve times, than…THAN!!! Everything will be ok.”

It’s pathetic. b/c the reality is, none of us can ever seem to find the just right combo for sustained relief.

And/but, he doesn’t do it at school. And he is so easily managed by just bending to his every whim and need. So…doesn’t that mean that there is a huge behavioral component to this?

Our attempts at discipline have totally gone out the window lately b/c we are literally just in survival mode. So any semblance of “rules” or expectations of ways to behave, etc…we’ve let them all slip b/c we are just scrambling to stave off the next explosion. But I’m very worried that we are raising a monster.

At this time, we have “that kid.” That no one in my family wants to be around anymore. He’s that unpleasant. My sister has taken to calling him Kim Jong-il.

It’s embarrassing. Frightening. Enraging. Exhausting. It just sucks.

Melbel, thanks for the lab links. Sorry if this is a dumb question, but how does it work – meaning how do I use them/get a sample to them? Do you just tell the doctor that you need them to draw blood or something and then somehow send it to this special lab? Sorry, I haven’t had time yet to open the links you sent.

[twowhat?]

I was just reading your update and wanted to send hugs:hug: I was completely nodding through your entire post about what it feels like to go about each day trying not to misstep on ANYTHING and being in survival mode, willing to do ANYTHING and give ANYTHING to not have the screaming start. It's an awful feeling. But at the same time it exacerbates the behavior (barring anything else going on, medical/otherwise). Once we put on our iron suits and made the decision to follow a plan with absolute consistency, no matter what, it got so much better. I won't lie - the first couple of weeks it actually got WORSE (and I was warned that it would). But then after that it got infinitely better. And our DD2 was exactly like your DS in that she was a "perfect angel" at school. When we told her teachers about her behavior at home, they simply COULD NOT believe it.

Anyway, I hope you're able to come up with a plan of action. It's really rotten feeling like your every move is dictated by your difficult child. It's very very hard:(

[Melbel]

Melbel, thanks for the lab links. Sorry if this is a dumb question, but how does it work – meaning how do I use them/get a sample to them? Do you just tell the doctor that you need them to draw blood or something and then somehow send it to this special lab? Sorry, I haven’t had time yet to open the links you sent.

I agree, there does seem to be a behavioral component. When my son was sick with undiagnosed Lyme (and his cocktail of other infections), it definitely impacted him at school too. There was a marked change. On the other hand, some kids are able to keep it together at school, only to take it out on the family once they get home (as if they used up all niceness and self control at school; this may explain why your DS was better behaved yesterday, when he did not have to be "on" at school). My DD1 (who has a controlled Lyme infection) leans in this direction. I literally laughed out loud at the gushing behavior report from her teacher (which unfortunately is not reflected at home). From what you wrote, it seems like he is playing you to some extent, but legitimately cannot control his rage attacks either. Does he only have rages when he does not get his way (more like a tantrum) or does it sometime happen for no reason at all (sorry if I missed this distinction in your prior posts)? There still seems to be "something" medically going on, in addition to he behavioral component.

When DS was at his worst, we definitely were walking on major eggshells too. I could tell by his gait while walking down the stairs what kind of morning/day we were in for (I was that tuned in to every move). Just thinking about it makes my chest tighten.

As for the testing, your doctor can request kits from the labs. Draws can be done at a doctor's office or at a commercial lab (Quest, Labcorp, etc.) for a nominal fee. Note that some labs (i.e. iGenex) do not want you to do draws at the end of the week because they test right away (blood should not sit over the weekend). The labs are not cheap, but I have learned through experience that it is better to invest in more accurate testing that you can rely upon sooner vs. later (we learned of numerous other infections that were missed by the commercial labs). ETA: Our testing at the referenced labs was not initially covered by insurance, but we were reimbursed.

We cross posted above, so note that I gave a few doctor suggestions.

[lmh2402]

IFrom what you wrote, it seems like he is playing you to some extent, but legitimately cannot control his rage attacks either. Does he only have rages when he does not get his way (more like a tantrum) or does it sometime happen for no reason at all (sorry if I missed this distinction in your prior posts).

It’s both. It’s definitely if and when he ever doesn’t get his way. But many times, getting his way is based on something that is really just…irrational. Meaning, flipping out over blankets not being straight. So we get up over and over to flatten his blankets. Or he will be playing a game and he’ll lean over the cards on the floor and they’ll shift…won’t be perfectly lined up. And if we don’t fix them fast enough, he flips out. Or he has these ideas in his head of the way a conversation is supposed to go...and I mean, he literally has an idea of what exact words he wants you to say b/c we often have the same conversation over and over. And if you misstep and use a different word. He flips out.

There is a lot, a lot, a lot of behavior that is really just very irrational and not functional.

Thanks for the explanation re: the labs. And the names of the doctors.

God, none of these people take insurance. We’re already carrying so much each week in therapy. At some point we just aren’t going to have the funds to continue all of this. I just want to crawl under my desk and cry. And sleep.

[hillview]

it might help to keep a diary of
what he ate
how long he slept/night wakings
behavioral issues and what was going on at the time

good luck, glad the night was a little better

[Indianamom2]

I agree, there does seem to be a behavioral component. On the other hand, some kids are able to keep it together at school, only to take it out on the family once they get home (as if they used up all niceness and self control at school; this may explain why your DS was better behaved yesterday, when he did not have to be "on" at school). My DD1 (who has a controlled Lyme infection) leans in this direction. I literally laughed out loud at the gushing behavior report from her teacher (which unfortunately is not reflected at home). From what you wrote, it seems like he is playing you to some extent, but legitimately cannot control his rage attacks either. Does he only have rages when he does not get his way (more like a tantrum) or does it sometime happen for no reason at all (sorry if I missed this distinction in your prior posts)? There still seems to be "something" medically going on, in addition to he behavioral component.

I agree very very much with the quote above from Melbel. My daughter's behavior is night and day different between school and home. She literally holds herself together at school/in public and then loses it at home. She has sensory processing disorder, high anxiety and ADHD. All these diagnosis overlap a lot and all of them are characterized by this type of behavior. It becomes more apparent as she gets older. When she was 3, things were ROUGH, and yet I think your household sounds worse. It could be that he has a much stronger case of Adhd, for example and the emotions and elements of that at such a tender (I know, hard to think of it that way) age are just too much for him and so he loses it at home with those he is most comfortable with and who he has an element of control over. Does that make sense?

I think to some extent you do have to just put on your armor and duke it out...standing extremely firm and inflexible to these kids to stop the way that they can take over the family and hold everyone hostage. That's not fair to anyone. But at the same time, I do think there's something physical/emotional going on and so it needs to be teased out and addressed, and this WILL get easier to do as he gets older. It's just incredibly hard at this age.:hug:

[Melbel]

It’s both. It’s definitely if and when he ever doesn’t get his way. But many times, getting his way is based on something that is really just…irrational. Meaning, flipping out over blankets not being straight. So we get up over and over to flatten his blankets. Or he will be playing a game and he’ll lean over the cards on the floor and they’ll shift…won’t be perfectly lined up. And if we don’t fix them fast enough, he flips out. Or he has these ideas in his head of the way a conversation is supposed to go...and I mean, he literally has an idea of what exact words he wants you to say b/c we often have the same conversation over and over. And if you misstep and use a different word. He flips out.

There is a lot, a lot, a lot of behavior that is really just very irrational and not functional.

Thanks for the explanation re: the labs. And the names of the doctors.

God, none of these people take insurance. We’re already carrying so much each week in therapy. At some point we just aren’t going to have the funds to continue all of this. I just want to crawl under my desk and cry. And sleep.


:grouphug: Our majorly escalating costs for my husband's employer sponsored health coverage thanks to ObamaCare is another source of stress for us.

Note that even if the doctor does not accept insurance, many offices will file for you, or you can submit the bill on your own for reimbursement. Once you can figure out what is wrong, the appointments do not need to be that frequent. IME, it is soooo worth the investment to figure out the underlying cause. Our DS could not benefit from the therapy while he was medically sick. His CBT was an utter waste of time/money/effort/stress while he was sick. Now that his infections are controlled, however, he is able to use and benefit from the tools he learned in therapy. We deeply regret using any psych medications for our DS because he had such severe side effects (common with Lyme). IME, I would only try psych meds after ruling out underlying medical conditions/infections.

Given the strong OCD presentation, I would lean in the PANDAS/PANS direction in choosing a doctor (but also be sure to rule out Lyme and Bartonella). There are groups on Yahoo and FB that you can join and post questions (providers, does this sound like PANDAS/PANS, commiseration, etc.).

I wonder if your GP can order the labs suggested here: http://pandasnetwork.org/diagnostic-tests/diagnostic-tests/

[Melbel]

I am still brain storming a bit. I seem to recall that your son getting therapy for issues consistent with Lyme (speech, motor delays???). I think that a Lyme/PANDAS co-infection is definitely a strong possibility.

Here are symptom checklists for pediatric Lyme disease. As a point of reference and to show the variety in symptom combinations, for my 3 DC, the are the early symptoms that were missed until DS' crash.

DS - jaundice, gross/fine motor delays, speech delays, frequent respiratory and other infections (requiring tonsillectomy/adenoidectomy at age 6), asthma, poor muscle tone (floppiness), napped until age 5 or 6, headaches (beginning at age 8); after DS' crash in 2011 he started getting vertigo, balance problems, severe headaches, etc.
DD1 - jaundice, frequent ear infections requiring tubes, reflux, colic, frequent respiratory infections, asthma, MRSA-like skin infections (2 requiring out patient surgical intervention), headaches (beginning at age 8)
DD2 - jaundice, severe reflux and colic, muscle floppiness/clumsy, frequent infections that did not clear in normal time frames

Lyme pediatric specialist Charles Ray Jones, MD, compiled a list of common symptoms of infection in his young patients:

severe fatigue unrelieved by rest
insomnia
headaches
nausea, abdominal pain
impaired concentration
poor short-term memory
inability to sustain attention
difficulty thinking and expressing thoughts
difficulty reading and writing
being overwhelmed by schoolwork
difficulty making decisions
confusion
uncharacteristic behavior
outbursts and mood swings
fevers/chills
joint pain
dizziness
noise and light sensitivity

Dr. Jones has also documented congenital, or gestational, Lyme disease in some children who were infected in utero or by breastfeeding. In these patients his suspicion is raised when the child has:

* I think this list is helpful with the youngest patients, regardless if the infection is congenital or not *

frequent fevers
increased incidence of ear and throat infections
increased incidence of pneumonia
irritability
joint and body pain
poor muscle tone
gastroesophageal reflux
small windpipe (tracheomalacia)
cataracts and other eye problems
developmental delay
learning disabilities
psychiatric problems

Among Jones’ patients, 50% have no known history of deer tick attachments and fewer than 10% have a history of an erythema migrans Lyme rash (bull’s-eye).

[Melbel]

How are things going? Better I hope.

I just saw the following information re. PANDAS posted in one of my Lyme groups and thought I would pass it along.

Link with helpful information: http://intramural.nimh.nih.gov/pdn/web.htm

Here is a PANDAS/PANS symptom list:

•Obsessions (e.g., preoccupation with a fixed idea or an unwanted feeling, often accompanied by symptoms of anxiety)
•Compulsions (e.g., an irresistible impulse to act, regardless of the rationality of the motivation)
•Choreiform movements (e.g., milk-maid grip, fine finger playing movements in stressed stance)
•Emotional lability (e.g.,irritability, sudden unexplainable rages, fight or flight behaviors) (66%)
•Personality changes (54%)
•Age inappropriate behaviors particularly regressive bedtime fears/rituals (50%)
•Separation anxiety (46%)
•Oppositional defiant disorder (40%)
•Tactile/sensory defensiveness (40%)
•ADHD, fidgetiness, or inability to focus (40%)
•Major Depression (36%)
•Marked deterioration in handwriting or math skills. (26%)
•Daytime urinary frequency/enuresis (12%)
•Anorexia (particularly fear of choking, being poisoned, contamination fears, fear of throwing up)

[AnnieW625]

Very late to this party, but I hope your DS is doing better. Best wishes to you and your family.

[mom3boys]

Hi, sorry, late to reply to this post, I hope the meeting with the behaviorist went well.

I did want to mention we took my DS to Children's Specialized Hospital in Mountainside, NJ And had a good experience there (we are going up for follow-up next month). It is Developmental Peds/Pediatric Neurologists/Psychs/OTs/Speech Pathology etc.

My DS was evaluated for ADHD but we also suspected Asperger's. He is older than your DS and his issues were not as severe as you describe with your son. It was ONE YEAR to get the appointment so obviously you will want to see someone sooner but you might want to get on the waitlist there as well. They were also one of the few Dev Peds that took our insurance (Oxford) and are very good about making sure of coverage a priori. We saw Dr. Prontnicki but there are a bunch to choose from.

[hillview]

Hi just checking in -- hope the appt went well!

[Multimama]

I'm late to this, but the night waking sounds like night terrors. You scream, but aren't awake and don't remember them because of the point of sleep they happen in. They are often caused by fatigue (my DS used to get them at night if he skipped his nap during the day) and then of course they cause more fatigue. They often run in families. You could ask you parents if either you or DH had anything like that or sleep walking etc.

Wish I had advice for the rest. Hope you get the help you need to figure it out.

[KDsMommy]

So many hugs OP :grouphug: I don't have any BTDT advice but I couldn't read without responding.

I hope things start looking up for you all very soon.

[SkyrMommy]

:grouphug: Thinking of you today. Sending many P&PTs things lookup soon.

[toby]

I am so so sorry you are going through this! I heard some good news in your post, though. You said he asked to go to the car to calm down. This means he is recognizing that he is out of control, he wants to be in control and not raging, and he is actively seeking solutions to help himself. Your son is no psychopath!!! He sounds like a bright boy who is suffering. I have no advice to offer on what you can do before you see the behaviorist except to try to be as calm and loving as you can and tell him you and his daddy are going to do everything in your power to help him feel better as soon as you can. Tell him you're so sorry you don't know how to help him yet, but you're going to start learning on Wednesday. Give him hope that life will not always be this way and that he will feel better. And he will! I would look for a really good psychologist as well as pursuing any dietary issues. Your behaviorist may not be a doctoral level person qualified to do testing as a psychologist is. Start with the behaviorist, but I would suggest not stopping there. Hugs to you!!!

ITA-- great sign that he is asking to go to the car. Please let us know how you are all doing when you get the chance.

[mikala]

Hope your appointment went well!

Your comment about him wanting to be confined in the car reminded me of a friend's daughter. She has some similar behaviors and she loves her Ikea hammock chair because it hugs her and helps her calm down. I don't know if they still make it but I know I've seen similar one on etsy. http://www.amazon.com/Ekorre-Swing-hanging-hammock-outdoor/dp/B002XPNMFU

[KDsMommy]

Hope you're doing well, please update when you can. :grouphug:

[Melbel]

PANDAS/PANS and Lyme presentation streaming LIVE now. Free.

http://new.livestream.com/accounts/2016089/events/1688460

[Melbel]

I just came across this detailed PANS symptom scale that I thought you may find helpful. It described PANS and what constitutes OCD symptoms differently and in a way that I better understood.

https://word.office.live.com/wv/WordView.aspx?FBsrc=https%3A%2F%2Fwww.facebook.com %2Fdownload%2Ffile_preview.php%3Fid%3D176811249122 801%26metadata&access_token=1451921825%3AAVIhRpnQ6vSFJ-r3En5N7uyyMIDZPyp_LesenqmWsaQK3A&title=PANS+Scale.doc