Dd 12 gets into a rage with any discipline, adhd on meds

amother

Lightgreen

Tue, Jul 06 2021, 5:42 pm

bigsis144 wrote:

We have seen no “sudden, major changes in personality, behavior, and movement” - he has always been this intense - and he has been on antibiotics multiple times throughout childhood.

We haven’t had him evaluated by a “PANDAS expert”, but none of the professionals we have taken him to for evaluations has suggested it based on his symptoms and behavior.

I know pandas is controversial in the mental health/psychiatric community, and the true believers see it everywhere.

My dc was super intense and high strung from Day 1.
I'm not saying your child has pandas, I don't actually know your child. I just think it's a worthwhile thing to explore thoroughly so you know you've ruled it out completely as a possibility.
And yeah, for some reason, professionals never seem to suggest it. Btdt.

amother

Whitesmoke

Tue, Jul 06 2021, 7:31 pm

amother [ Stoneblue ] wrote:

We found the rages were a form of anxiety. We use a neurologist from Northwell behavioral (formerly northshore). We live in 5t the therapist we use is gentle but helps her work on noticing her body and feelings etc...zoom sessions with any therapist were h*ll. Definitely reccomend in person. I would ask around for someone local who is really good with children like this.
I think it doesn't really matter who she sees, just someone she clicks with and who knows how to deal with behavior.
Idk anything about pandas but my daughter has bern on plenty of antibiotics and strep tested many times. I'm not saying it doesn't exist. But these medications changed our lives.
Op another thing I found helpful was keeping a tight routine with flexibility for special times. Enrolling her in after school activity. Giving her mp3 player with meditations downloaded. Noise machine in her rm. Making her room feel safe by giving her a corner wall to sleep with her bed.
I will post more if I can think of anything else.

I also live in five towns. Pls post name of doc you used who you were happy with

amother

Peachpuff

Tue, Jul 06 2021, 9:25 pm

amother [ Moonstone ] wrote:

I’m a bit confused now. One child had bloodwork done multiple times over the past two years. I went to a neurologist/psychiatrist and also to a endocrinologist. Both said that DC has inflammation & high strep titers indicating pandas and/or Epstein bar virus. This child has extreme anxiety & other symptoms but not what OP is talking about. This is the child I’m attempting to treat for pandas.

My other child has behavioral issues like OP is describing. We attempted therapy but DC walked out. Literally. Couldn’t find a recommendation for a therapist that will take the case. I tried someone Sputz in Brooklyn, but he wouldn’t take us. I never attempted meds, but tried supplements & diet change with little results mostly due to lack of cooperation/consistency. We did bloodwork this month after someone mentioned a child with similar behavior being diagnosed with pandas. The pediatrician agreed to test but claims that there isn’t sufficient evidence as per the results. Whereas for the other child, he recommended antibiotics.

Also, what do you mean by biological component? Does having family members behave similarly mean it’s in the genes? Can Nature/nurture be healed in a preteen despite that? Can inflammation or pandas trigger the child to get worse? Would treatment make it better?

Re: supplements: I got advice that I can go two routes, one via healing the brain and the other via healing the strep. Both eventually get to the same place. We started the latter. It includes specialized immune building supplements to heal the strep plus calcium, fish oil, and other anxiety/stress reducing tablets. I’m supposed to follow up after one week to say if it’s better/worse/same.
Not sure if my other child needs the above because it’s way more rooted in explosive behavior than anxiety. Unless ADHD is a form of anxiety? (disclaimer: DC never got a diagnosis. Yet.)

Can you please specify what you gave and whom you used for cranio?

Im not a specialist or even a dr, and I don’t know your kids, but it’s entirely plausible that they both have some form of neuro inflammation that’s presenting in different ways. Your dr is wrong in that he’s saying 1 of your kids doesn’t have enough evidence in his bloodwork to warrant treatment — official treatment guidelines are based on symptoms ONLY, no bloodwork necessary. I don’t blame him for not wanting to make that call, but again, you don’t technically need any specific results to treat. And if you don’t treat for pandas and see if you get results, you can’t rule it out.
The biological vs genetic vs epigenetic piece is complicated to explain but suffice it to say that even when there’s a strong hereditary component, it’s most often epigenetic as opposed to purely genetic, and can be worked around by addressing the susceptibilities. To give a very simplistic example, we know anxiety runs in families, and we know the most direct cause is a neurochemical imbalance, but it’s not usually a genetic mutation that’s coding directly for the wrong balance. It’s usually something way downstream that’s genetic, such as a methylation polymorphism that affects how your body metabolizes b vitamins, which in turn will affect neurotransmitter production. By correcting methylation via diet and supplementation, you will correct upstream neurotransmitter balances.
About the supplements, I’m not sure what you mean about healing the brain, but the infections definitely need to be addressed.
About your other child and adhd vs anxiety, both adhd (emotional dysregulation) and anxiety can trigger rage, but rage can also be a symptom unto itself, as a result of brain inflammation.
I don’t feel comfortable sharing our CST but I will say I consider it an adjunct therapy, secondary to treating all underlying infections, immune dysregulation, etc.
For more on the different potential causes of brain inflammation and how they relate to genetics etc, you could read Brain Inflamed by Dr. Kenneth Bock.

amother

Peachpuff

Tue, Jul 06 2021, 9:27 pm

amother [ OP ] wrote:

Thank you.

I actually do believe in pandas and have treated another child for pandas a couple of years ago.
My question is, if she has been this way since infancy (she never whimpered or cried, she SCREAMED, etc), what would indicate a presence of pandas?

Also, one step closer to what? We have a diagnosis. Adhd with anxiety, which very often comes along with emotional dysregulation. She seems to neatly fit into that box.
I am always looking for more solutions, but a diagnosis we do have.

The thing with the psych diagnoses you have is that they simply repackage the symptoms, which can be helpful to an extent, but they don’t tell you anything about a cause. I think what FF means is that you will be closer to discovering what’s beneath the symptoms your seeing. Like the next layer.

amother

Peachpuff

Tue, Jul 06 2021, 9:33 pm

amother [ Sapphire ] wrote:

How convenient that there don’t need to be any consistent bio markers for pandas. So anything could be pandas. That’s why pediatricians are wary of the diagnosis.

Not convenient, it’s actually very unfortunate, though there’s been some good progress lately in this area of research. The thing is, nobody is diagnosing adhd or asd or anxiety based on a bio marker either, just based on symptoms they’re seeing. And the treatment is a lot of trial and error. Not that scientific either... I don’t blame pediatricians for being wary, most of them are not equipped to diagnose and treat this, it’s a huge paradigm shift for them, and frankly, most of them don’t understand this disease at all. I still fail to see how the alternative (psych diagnoses, psych meds) is preferable to at least trying to find and treat root causes. In addition, it’s good to understand that psych diagnoses and pandas (and pans, AE, Lyme etc) are not mutually exclusive. He former labels the symptoms, the latter attempts to establish a cause.

amother

Viola

Tue, Jul 06 2021, 9:36 pm

Forgive me please, I didn't read the op or thread, I'm just responding to the subject line:

"Discipline" and "12 yr old" in the same sentence is a big problem. Maybe it isn't the 12 yr old who's the problem, but the discipline. Discipline and 12 yr olds can't live under the same roof. One of them has got to go. Pick your choice.

May I suggest you take time to visit your 12 yr old self and ask her how it was for her to be on the receiving end of discipline.
She might give you a clue as to how a 12 yr old wants to be interacted with. She's closer than further to having the ability to leave the home.

Eta: I lived through similar stuff with DD at that age. She killed our cat and almost killed our puppy. That's how intense her rages were. I feel for you. Discipline had to go. That was our game changer, plus other stuff . But that was key.

amother

Peachpuff

Tue, Jul 06 2021, 9:37 pm

amother [ Darkblue ] wrote:

I see alot of people saying PANDAS here. No one is mentioning PANS. The symptoms everyone is describing are not always caused by strep. There is also lyme, mycoplasma, mold etc etc. There is something as congential lyme as well for those who are saying it has been since birth. Just some food for thought

When I say pandas I really also mean pans, lyme, AE, and all other causes of brain inflammation and dysregulation.

amother

Tue, Jul 06 2021, 9:41 pm

amother [ Viola ] wrote:

Maybe read the post and don't just respond to the subject line. Thanks for the visit

amother

Sapphire

Tue, Jul 06 2021, 9:41 pm

amother [ Darkblue ] wrote:

Not to derail this thread but many DSM diagnoses in the mental health realm do not have biomarkers.

Mental illnesses have recognized neurotransmitter excesses or deficiencies. No one is claiming they are systemic illnesses.

amother

Darkblue

Tue, Jul 06 2021, 9:44 pm

amother [ Peachpuff ] wrote:

Would you recommend craniosacral therapy as a good adjunct or is therapy or something else money better spent. Did you see any results with it after addressing underlying infections? Did you see results with homeopathy or supplements?

amother

Peachpuff

Tue, Jul 06 2021, 9:46 pm

amother [ Sapphire ] wrote:

Mental illnesses have recognized neurotransmitter excesses or deficiencies. No one is claiming they are systemic illnesses.

They are not diagnosed based on neurotransmitter testing. So when someone comes to a psychiatrist with symptoms and they get a diagnosis, there is no telling if those hypothesized imbalances are what is actually going on in that persons brain. Also, there is no definitive theory on what causes discrete mental disorders, just lots and lots of hypotheses. Also lots of hypotheses on how psych meds act on said imbalances. It’s really not as clear cut as they would have you believe. What’s more, so much of the latest research points to inflammatory etiologies just below those imbalances.

amother

Peachpuff

Tue, Jul 06 2021, 9:47 pm

amother [ Darkblue ] wrote:

Yes, we love cst as an adjunct. We’ve seen some amazing results with certain supplement protocols as well. We’re still too early on in homeopathy to say for sure about results but many people have reported amazing things and I’m very hopeful (against my own best judgment Wink

)

amother

Viola

Tue, Jul 06 2021, 9:47 pm

amother [ OP ] wrote:

Maybe read the post and don't just respond to the subject line. Thanks for the visit

I edited my reply above.

amother

Darkblue

Tue, Jul 06 2021, 9:58 pm

amother [ Peachpuff ] wrote:

)

Thanks. If your CST does allow a reccomendation and if your homeopath does work out, please share.
Also, can you share the supplement protocols?
Anything to take away the trial and error Sad

amother

Peachpuff

Tue, Jul 06 2021, 10:02 pm

amother [ Darkblue ] wrote:

Thanks. If your CST does allow a reccomendation and if your homeopath does work out, please share.
Also, can you share the supplement protocols?
Anything to take away the trial and error Sad

Our most successful protocols were high dose magnesium (oral mag malate, mag taurate and mag threonate, plus epsom salt and magnesium chloride footsoaks) and methylated b vitamins with active forms extra b1 and b2. We also did really well on NAC, l theanine and Gaba. I don’t know any way around trial and error because very kid is so individual.

amother

Tue, Jul 06 2021, 10:04 pm

amother [ Viola ] wrote:

Eta: I lived through similar stuff with DD at that age. She killed our cat and almost killed our puppy. That's how intense her rages were. I feel for you. Discipline had to go. That was our game changer, plus other stuff . But that was key.

When I say discipline, I mean even telling her firmly that it's not ok to pick the bathroom lock when someone is in there. Do you have suggestions? In general, we try to have conversations with her about things, and we do that almost all the time. But this is a real red line that she crossed. Poor sibling came crying to me about it.

amother

Olive

Tue, Jul 06 2021, 10:23 pm

OP- I can completely relate with your post. I have a 6 year old daughter who presents the same way (no official diagnosis yet- going to bring it up with her doctor soon). I have no advice, but I empathize with you! After reading this thread, I plan on looking into the nurtured heart approach. I also want to either do a coaching call with Blimie Heller ($175/50 min or $85/25 min) or take her course in October. She focuses on the gentle parenting approach- her Instagram name is unconditional_parenting and she has tons of info on her page. Hatzalacha!!

amother

Sienna

Wed, Jul 07 2021, 12:02 am

Totally can relate. My almost 14 year old dd has DMDD, ADHD, and anxiety.
After many years of therapy, for both my daughter and for me in coaching me on how to best parent her ( and starting our 4th school this year) I try to engage with my dd before a meltdown/rage and ask her what she would need when those episodes happen and validate how scary/uncomfortable it must be for her during those episodes. She has recently been able to give substantial answers during those conversations. Even if in middle of the rages she cannot receive the very things she said would help her/ I feel that at least on some level she know that I am with her in her pain. And yes, the rages are usually in response to receiving a consequence for egregious behaviors.
It’s so so hard - and the added layer of knowing how to support her siblings are is really challenging for me personally.
I am in middle of the book The Uncontrollable Child. So far I like it very much.

amother

Wed, Jul 07 2021, 12:11 am

I bought that book, too!! Looking forward to reading it!

amother

Sienna

Wed, Jul 07 2021, 12:29 am

I’m amother Sienna - and just to add, we took our daughter to Dr. Schulman to get tested for PANDAS.... negative