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

amother

Moonstone

Tue, Jul 06 2021, 11:56 am

amother [ Peachpuff ] wrote:

We have been treating for years, have done various long term abx, diet, lots of supplements, craniosacral therapy and homeopathy. I know this is vague, I’m not sure how specific you want me to get. Just anxiety doesn’t always have to be pandas, though in my experience there usually does end up being some kind of infection/neuroinflammation component at the root, and you end up finding more symptoms as well...

I would appreciate if you were very specific; but I didn’t get into detail so as not to derail this thread. I know it’s Pandas because we did bloodwork & yes there were many other symptoms as well.

We did 3 months of antibiotics, one long craniosacral session (whom did you use? I had some concerns) and started a high quality supplements program this week. Also hoping to get a therapist for the Anxiety/OCD part but I’m still looking for someone good.

But I didn’t think my child (who is behaving like the OP’s child) is doing so because of pandas until recently. His strep antibodies are high but my pediatrician claims that there would’ve been inflammatory markers if it is was Pandas & it must be classic behavior issues. Would love to hear from others if it could still be pandas anyways? Even if parts of it seem like ADHD?

Edited for typos

amother

Stoneblue

Tue, Jul 06 2021, 2:07 pm

amother [ OP ] wrote:

Wow, I can so relate to what you write. it feels so validating to have someone who understands.
Yes, we have locked the other kids with one parent in a room while other one just made sure she was safe while out of control...very scary. bh so much better since on the meds, but still difficult!

If her anxiety is completely controlled bh, would there be a purpose in raising the zoloft?
Would you mind sharing which neurologist and therapist you use?
Thank you!

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.

amother

Peachpuff

Tue, Jul 06 2021, 2:21 pm

amother [ Moonstone ] wrote:

Your pediatrician is wrong, we don’t yet have consistent bio markers for pandas so as of now it’s a clinical diagnosis, not based on bloodwork at all. Of course, elevated strep titers can provide a good clue, but they are not necessary and not diagnostic. Not sure which inflammatory markers he is referring to, there are so, so many, but none of them have consistently been associated with pandas in the literature and definitely not necessary for a diagnosis. The most telling way to know if you are on the right path is if the treatment works. Also, having been in these trenches for many years I will tell you there is no such thing as classic behavior issues. There is always a biological component, and almost always an inflammatory piece. If your dr is willing to keep prescribing antibiotics, it’s probably worth keeping them on it. Which supplements are you starting?

amother

Moonstone

Tue, Jul 06 2021, 3:00 pm

amother [ Peachpuff ] 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?

amother

Lightgreen

Tue, Jul 06 2021, 3:55 pm

amother [ Moonstone ] wrote:

Listen to amother peachpuff, she knows what she's talking about.

And yes, explosive behavior is just another presentation of the same biological dysfunction.

bigsis144

Tue, Jul 06 2021, 4:10 pm

amother [ Pink ] wrote:

My ds is similar but he doesn't care. He has no desire to change or accept responsibility; he thinks it's his right to throw a fit .
He is on meds/therapy but it makes no difference if a child refuses to change their behavior.
He is this was since he was a newborn

My son has been “let go” by multiple therapists because his attitude is “everyone ELSE is annoying and stupid, I don’t need to change. If only you bought me everything I asked for/I was an only child/I didn’t have to go to school/mom entertained me and waited on me hand and foot, I wouldn’t misbehave!”

I had such a hard Shabbos this week (including multiple times locking myself in my room with my toddler to get away from him) that just. didn’t. end.
By motzei Shabbos, I ended up sobbing so hard in the bathroom I was nauseous from it.

I am imperfectly human, but I’ve been working on myself for so long that *most* of my reactions would satisfy parenting book standards after all these years, and still it can be hell on many days in my house. YES I’ve read the Explosive Child and Nurtured Heart. And those have helped me shift my perspective and be the best parent I can be. But I cannot control my child and his behavior.

amother

Lightgreen

Tue, Jul 06 2021, 4:27 pm

bigsis144 wrote:

Have you ever explored pandas as a possibility for him?

bigsis144

Tue, Jul 06 2021, 4:33 pm

amother [ Lightgreen ] wrote:

Have you ever explored pandas as a possibility for him?

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.

amother

Tue, Jul 06 2021, 4:37 pm

FranticFrummie wrote:

OP, even if you don't believe in PANDAS, it wouldn't hurt to have her tested, if only so that you can check that one off the list. For every diagnosis you can exclude, you are one step closer to getting to what is really going on there.

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.

amother

Stoneblue

Tue, Jul 06 2021, 4:37 pm

bigsis144 wrote:

I'm so sorry!! Sounds awful!! I'm sure you tried this but just in case not, have you considered a psychiatrist for mood stabilizers?

amother

Tue, Jul 06 2021, 4:38 pm

amother [ Peachpuff ] wrote:

Do you have a specific dr you use and recommend for the pandas/neuroinflammation?

amother

Tue, Jul 06 2021, 4:43 pm

amother [ Stoneblue ] wrote:

Thank you. I would love to be in touch with you, we feel so alone with this.
We have tried therapy for quite a while, but whenever the therapist went near anything dd needs improvement in, such as not bullying siblings, dd would refuse to discuss it.

We do keep her very busy, that is a definite necessity for her! Swimming, sports, clubs, etc.
Even on a good day, she is just SO high maintenance!!!!!!!!!!

amother

Tue, Jul 06 2021, 4:48 pm

bigsis144 wrote:

I had such a hard Shabbos this week (including multiple times locking myself in my room with my toddler to get away from him) that just. didn’t. end.
By motzei Shabbos, I ended up sobbing so hard in the bathroom I was nauseous from it.

Ohhhh, the shabbosim are soooooooo difficult, as many activities/books/friends that we prepare ahead of time, there almost always end up being really difficult times on shabbos... plus we have a huge incentive program for her for shabbosim. For during the week also, but she can earn much more points on shabbos bec its so hard for her

amother

Sapphire

Tue, Jul 06 2021, 4:58 pm

amother [ Peachpuff ] 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.