Is there hope and healing to hf asd that's clearly genetic?

amother

OP ↓

Sun, May 19 2024, 2:28 am

Dc five. Symptoms are lacking some social understandings, black and white thinking and rigidNess.
So far im doing these for pandas / but think they are also advised for asd
probiotic- though would love to hear which kind is best
Vitamin d
Coloidal silver
Epsom salt and magnesium in his baths
Brain exercises MERTZBACH
The least gluten dairy and food coloring possible usually only mostly in school
Anything else I can do he shouldn't
Grow up like my husband? My husband claims he remembers being like him when he was Can't Believe It

young and doesn't get why it makes me sad...

amother

↑ Brunette

Sun, May 19 2024, 3:23 am

amother OP wrote:

young and doesn't get why it makes me sad...

Same boat …. Following

amother

DarkYellow ↓

Sun, May 19 2024, 5:53 am

If your child has pandas, that's the first thing that needs to be addressed, and it needs to be addressed aggressively. The symptoms you listed are all classic pandas symptoms and can go away with pandas treatment.
Are you able to get to a pandas specialist or do you want to diy?

Fwiw I was like this as a child, and I have a child like this as well, and they are doing sooo much better with pandas treatment. At one point I was sure they would have qualified for an asd diagnosis but at this point their struggles are so minor I'm the only one who notices.

amother

Geranium

Sun, May 19 2024, 6:18 am

Floor time therapy, and loads of it. Ideally a session with a therapist every day, and then daily floor time play at home with the family. You really can do floor time all day long.

My son was diagnosed when he was 2.5. We put him in a floor time public school program for 3 years. He was getting 5-6 hours of floor time therapy daily, in a social setting, plus floortime informed OT and speech therapy. It wasn't an easy decision, but BH we have an amazing Rav who met with our son, heard our concerns, and backed us all the way. It was probably the best thing we ever did. I stopped working for 2 years, which was very hard for us. But it allowed me to join many of his therapy sessions in school and we also did private OT and more floortime after school. It cost a fortune. It was worth every penny.

When he'd gotten a bit older and we put him is yeshiva, we continued the after school ot and floortime, and did a lot of follow up at home. We started working with the super flex model therapist (Michelle gracia winner), which made a huge impact. We worked with an OT on and off through the years, and always prioritized sensory outlets-- swimming several times a week, horseback riding, trampoline, hiking.

We tried lots of other things too, but this is what really worked.

He stopped meeting criteria for his autism diagnosis when he was about 10. We kept up the floortime and superflex therapies until he graduated elementary school at 14. Now he's in 10th grade, almost 16, in a mainstream school. He's an incredible kid. Kind, tuned in, funny, empathic, calm, flexible. He can still get more overwhelmed than your average kid, but he copes with it well and has the self knowledge and tools to deal with his emotions. He has deep, sincere empathy for others and real, reciprocal relationships. I'm confident that he'll make a wonderful husband and father.

Academically, my son was always gifted. (People assume this is the case with all autistic children, which is very much not true. Most have average or below average intelligence.) This was a huge boon for him and us, one area of his life where he thrived and excelled. It made it easy for us to take him out of school frequently for therapy and stuff we called therapy so his yeshiva would go along with it (swimming for example).

amother

DarkKhaki ↓

Sun, May 19 2024, 6:53 am

Been there. ❤️

I worked with the Guttmann sisters for my second and third and am so grateful. They are OTs that specialize in this. They ended up treating 2 of my children. When I had my 2 next kids I used what they shared in their prevention course and it’s been 5 years later - no dx for them.

If you are doing all the interventions and this would be too much for you (lot of energy and $) be part of their community. They give so much to support people. It’s been amazing to see.

They helped consult with a nutritionist for me. Advocate for the school. Dealt with the communication and social issues. Very grateful I had found them.

You are doing a lot of good things. Make sure someone is overseeing everything you are doing. Good luck.

amother

Bottlebrush ↓

Sun, May 19 2024, 7:16 am

amother Geranium wrote:

Exactly this. Floortime asap and when he's a little older intergrate a Michelle Warner Garcia top down approach as needed. I also think the Guttman sisters are great

amother

↑ OP ↓

Sun, May 19 2024, 8:21 am

amother DarkYellow wrote:

the concerns were always there. Then suddenly he started acting aggressive and having recurring strep and we've been dealing with that. For now he's in a good place with no flares much calmer but the way I look at it is he stayed with some bad habits... My concerns though as mentioned before at this point is his uniqueness which resembles my husband and clearly is hf asd. I'm struggling in my marriage to accept my husband for who he is but it's lonely frustrating and embarrassing. And in no way do I want him to grow up like him. I just stayed with doing what I've been doing for pandas cuz I've heard they're also recommended for Asd. I'm trying to figure out what else I can do and if I can expect real change to happen in the my dc s brain seems to be wired.

amother

↑ OP ↓

Sun, May 19 2024, 8:25 am

amother DarkKhaki wrote:

can you elaborate what their approach is in how to deal with hf asd? I've taken my dc to a great otwhen he was younger. He said there is no sensory issues and worked with him on other stuff until he said he's reached his goals and no need for ot anymore.

amother

↑ DarkYellow ↓

Sun, May 19 2024, 8:29 am

amother OP wrote:

I get it, I really do. For me seeing how similar dc was was to me was what was driving me to do everything I could for her so she could grow up to be emotionally healthier.

Even if there concerns were always there, they can still be caused by brain inflammation. Even if you're not seeing flares. What did you do to treat pandas? Who guided you? I'm happy to share more information but I feel like we keep having this conversation on multiple threads and not getting anywhere. It's a very involved route if you truly want to go down it, takes a lot of commitment. There isn't just 1 or 2 vitamins that's are going to make a significant difference, and there isn't anyone who can tell you off the bat what's going to be the golden ticket for your child. You're going to have to get educated and try lots of different things. But it can be done Heart

amother

↑ OP ↓

Sun, May 19 2024, 8:40 am

LovesHashem wrote:

PT
Ot
Speech
Social skills
Group therapy
Animal therapy

he has no speech delays and is communicating well. It's just his unique way of thinking and expressing himself. No speech therapists would accept him.
Ot would work on which part? He's been to great ot and was told hes reached his ot goals. He's had group therapy in school but no more group in his school for this age anymore. He can for sure benefit from social skills therapy. Anyone know of male provider in N.Y. ?

amother

NeonPink

Sun, May 19 2024, 8:48 am

[quote="amother Bottlebrush"]Exactly this. Floortime asap and when he's a little older intergrate a Michelle Warner Garcia top down approach as needed. /quote]

This exactly. Even if it's not instinctual, he can be taught relational skills. Start early and often.

And integrate the work into your home. You can work with a therapist to get some ideas. You're trying to build what they call theory of mind and empathy. Even in simple ways. Like taking him to the grocery store and having him figure out what other members of the family would want to eat. Constantly asking, would Chani like this? Do you think Yossi would appreciate this? Teaching him to think about others and their perspective.

amother

↑ OP ↓

Sun, May 19 2024, 8:49 am

amother DarkYellow wrote:

is it the same treatment route for pandas and asd? Cause I'm so sure it's asd as this point and maybe some remainder from pandas without the extreme behaviors he's displayed during flares. I'm so sure there is asd too cause he was a calm child till his pandas sudden onset and just had classic hf asd symptoms from when he was in playgroup. And then there is clearly the genetic part where hes just as his father and there are other family members that have asd as well. Does it matter at the end of the day if It's pandas or asd or healing process targets both?

amother

↑ DarkYellow ↓

Sun, May 19 2024, 8:54 am

amother OP wrote:

Asd isn't a medical cause, it's just the name given for the behaviors you're seeing. The brain inflammation that causes pandas is one potential cause of asd symptoms. We tend to associate pandas with aggression and meltdowns and other big behaviors but it can definitely also cause these more subtle cognitive type issues. The inflammation puts their whole nervous system in fight/flight so they can't access their "higher" brain that's in charge of social thinking, perspective taking etc. There are many others causes for asd symptoms. But brain inflammation is a very big one, regardless of how you label the behaviors.

amother

Hunter

Sun, May 19 2024, 9:04 am

amother OP wrote:

Asd has many causes.
And many ways of manifesting. (Some poeple diagnosed with fhasd, are just a square peg in a round whole. I don't think it's the same thing at all. Probably just personality. And nothing worth their brain is going on. Imo)

Most common cause for asd is brain inflammation. Which is the same issue for pandas.

I have a child with PANS. In her worst times she totally behaved like a child with not so mild asd. She reminded me of my cousin I uses to babysit with severe ask. She was nonverbal and non communicative. Stimming. Aggressive. Irrational sudden dangerous behaviors. Like running in the street (at 5!) When she was a previously healthy child, with some sensory processing issues.

Typical pandas treatment helped her. We tried antibiotics and that helped at first tremendously but then she plataued.

We ended up going the natur route. (With traditional therapies), and body work. it's been so many years I can't even remember everything we did. But now what's left over is her adhd and tics. And that's what we're working on now.