DD has so many issues. Where to start? Help me help her 😢

amother

Green

Fri, Sep 10 2021, 8:46 am

OP going the biomedical route will help you treat all the issues at once rather than chasing separate therapies for each area of delay. I agree with the amother that said maybe pandas. That, or some other form of neuroinflammation. I completely disagree that the speech issues are the source of the other issues, I believe they all have another unifying source. Social delays, extreme social anxiety, unclear speech, rage, all of these are neurological, not just the unclear speech. Sounds like she’s in fight flight mode, her lower brain is in distress, flooding the rest of her brain with distress signals and hijacking her upper brain from executing more advanced functions properly. Finding the source of the inflammation and addressing that will go a long way towards helping her brain as a whole heal. I would also rule out seizures. If she has apraxia that might be a mitochondrial issue.

amother

Aster

Fri, Sep 10 2021, 9:21 am

amother [ OP ] wrote:

Thank you everyone for responding.
Can someone walk me through, with really simple baby steps, how to get her evaluated? I don’t want to say where I live, but say it’s your hometown. Who do I call? What do I Google?

I live in lakewood. Here I would start with the board of Ed.
Go to their office on Linden Ave. Sign a paper that you want a full evaluation. Tell the person at the desk your concern so she knows which evaluation to request (educational, psychological, speech, occupational...)
You will need I.d and birth certificate.
I dk where you live but I imagine it's similar in other towns.
If you have a good health insurance you can do that instead(board of health) by going to your pediatrician (but it depends on his opinion and what he recommends!)
It can take up to 3 months to complete the process.

amother

Olive

Fri, Sep 10 2021, 9:35 am

As an SLP with many years of experience, I say that you need to find a good SLP who can connect well with your child. She will benefit in so many ways... social skills, speech clarity and general confidence as a byproduct of setting goals and reaching them. You can even throw in some quality time for you and her together on the way to and from sessions.
In my experience, best way to find this professional is through word of mouth. It needs to be primarily someone who relates well to children and is experienced. I would not recommend going the school therapist route at this time because progress is generally slower ( due to a variety of factors) and for your daughters emotional well- being, it would be good for her to make steady progress. Stay involved in the process without being overbearing. As far as your daughter being self- conscious about her need to intervention, I think it largely depends on you to present this therapy initiative as exciting and fun and an opportunity to learn new skills.
As a dedicated mother, you can play a large role in helping your daughter grow through this experience in so many ways.

amother

Pearl

Fri, Sep 10 2021, 9:53 am

amother [ Green ] wrote:

OP going the biomedical route will help you treat all the issues at once rather than chasing separate therapies for each area of delay. I agree with the amother that said maybe pandas. That, or some other form of neuroinflammation. I completely disagree that the speech issues are the source of the other issues, I believe they all have another single source. Social delays, extreme social anxiety, unclear speech, rage, all of these are neurological, not just the unclear speech. Sounds like she’s in fight flight mode, her lower brain is in distress, flooding the rest of her brain with distress signals and hijacking her upper brain from executing more advanced functions properly. Finding the source of the inflammation and addressing that will go a long way towards helping her brain as a whole heal. I would also rule out seizures. If she has apraxia that might be a mitochondrial issue.

This^^
Listen to her, she sounds like she knows what she's talking about. As a parent to 2 children with inflammatory/neurological disorders, this is the best advice you'll get.
I just want to add that a craniosacral therapist was the best addition that we've made to our team of providers. It really helps with downregulating the whole system so that you can work with the child.
I know those rages that you're talking about, it's like nobody's home, there's just no one to talk to. All the talk therapy in the world can't bring a child down from that. With craniosacral therapy, we were able to calm the body so we can work with dc. I just can't recommend it enough.

amother

Mintgreen

Fri, Sep 10 2021, 10:00 am

amother [ Pearl ] wrote:

can you recommend a provider?

amother

Poppy

Fri, Sep 10 2021, 10:22 am

amother [ Green ] wrote:

The pandas mom did not day she thinks this is pandas. She just said as a pandas mom she feels you need to get to the root of the problem.

amother

Turquoise

Fri, Sep 10 2021, 11:29 am

I believe that her speech and language issues are probably the root of most of her issues. Speech is the articulation, being able to speak clearly, say all sounds, etc, and language includes receptive (understanding what others are saying to her) and expressive (including word retrieval, vocabulary) and pragmatics (social aspects of language, conversation, communication with others). A speech-language pathologist (SLP) can help with all of these areas. I am not an SLP, but I have learned a lot about this as a mother of a child who has been getting SLP services for over a decade.

Find a good SLP in your community who can do a thorough evaluation of your daughter's speech and language and identify her weaknesses. (BTW, a hearing evaluation may be in order--the way you describe her slurred speech sounds to me like some people with hearing impairment.) Ask around--many kids are getting speech/language therapy for various issues, and hopefully people in your community can recommend someone good.

Your DD's pediatrician is also a good resource.

Hatzlacha!

amother

Green

Fri, Sep 10 2021, 12:12 pm

amother [ Poppy ] wrote:

The pandas mom did not day she thinks this is pandas. She just said as a pandas mom she feels you need to get to the root of the problem.

She did say she feels like it’s something similar to pandas and op should go the bloodwork route as opposed to the developmental route. Which is what I was agreeing with. I also happen to be a pandas mom x 2 and do think this can be pandas. But, I also use pandas as a sort of umbrella term for neuroinflammation.

amother

Hyssop

Fri, Sep 10 2021, 12:15 pm

amother [ Green ] wrote:

Pandas moms think everything is pandas. Please don’t derail the thread.

shaqued_almond

Fri, Sep 10 2021, 12:46 pm

First off, relax. Those are issues but your daughter is young and it's likely that you'll find a way to fix it. Idk why everyone is so convinced that it has to be neurological. It could be but it could also be psychological. I agree about having her evaluated. Focus on the speech first. Read a lot with her and take your time listening to her.

amother

Coral

Fri, Sep 10 2021, 1:02 pm

I had a frustrated 18 month old who couldn't express himself clearly. Turns out he needed ear tubes as he had partial hearing loss from fluid. He also had tongue tie. He does have a speech and language delay - oral motor planning.

Once he got the ear tubes, tongue tie clipped and speech therapy he calmed down a lot.
Please get the hearing checked and see and ENT who specializes in tongue tie as a starter.

If you're in NYC Dr Scott Rickert is amazing. In that NYU building they can do a hearing test and then after go to the other floor for him to read the results and check for tongue tie.

amother

Bluebonnet

Fri, Sep 10 2021, 1:07 pm

Another SLP here. In addition to what everyone said above, I just wanted to comment that I hear a lot of panic on your end about your daughter's struggles, and I want you to try to let go of that. In 2021 we have this perception that if we just work hard enough, we can somehow raise perfect kids. But that's not the case. Many kids have differences and areas of struggle, and while you should certainly pursue professional help, the most valuable gift you can give your daughter is the knowledge that she's just fine the way she is.

BrisketBoss

Fri, Sep 10 2021, 1:53 pm

amother [ Bluebonnet ] wrote:

In 2021 we have this perception that if we just work hard enough, we can somehow raise perfect kids. But that's not the case. Many kids have differences and areas of struggle, and while you should certainly pursue professional help, the most valuable gift you can give your daughter is the knowledge that she's just fine the way she is.

This Aspie agrees.

amother

Pewter

Fri, Sep 10 2021, 2:02 pm

amother [ Hyssop ] wrote:

Pandas moms think everything is pandas. Please don’t derail the thread.

Hi, I'm the pandas mom who blamed every individual issue the whole year on something else until I finally had to take a step back and say, ok nothing makes sense here. A wonderful malach told me to look into pandas and I believe I may even have corresponded with the knowledgeable amother above.

As someone with autoimmune diseases I can tell you that when there's 2 things wrong with the body, they are connected AND it will soon be more than 2 things.

Never treat the symptom. Go ahead and do your speech therapy, it's just a bandaid. I took pt for my swollen joint too. But that didn't heal the arthritis and your speech won't heal your daughters underlying issues.

There is something underlying like a million percent. I didn't say it was pandas. Pandas isn't a real disease anyways it's just an umbrella term as someone else said. There has to be a cofactor, mold bartonella lyme etc to cause it.

Save yourself time aggravation money and heartache and try this route first. It's better than the opposite where you exhaust yourself with the bandaids.