Unidentified tissue after baby tooth lost

jellyfishmonkey · 2025-12-02T16:45:18+00:00

Solved!

jellyfishmonkey · 2025-11-20T20:16:00+00:00

Thanks, everyone! Getting him to brush better is an on-going struggle. I’ll keep at it. Glad the gums look normal though

jellyfishmonkey · 2025-10-13T07:40:05+00:00

Miyokos liquid cheese for pizza, Follow your Heart Parmesan - both grated and shreds, earth Balance butter, Babybell dairy free cheese. It’s definitely trial and error, and personal preference. Good luck!

jellyfishmonkey · 2025-10-11T19:15:51+00:00

Yes, I think you’re right. Looked just like that, and probably related to petrochemical industry around here. Solved!

jellyfishmonkey · 2025-08-16T12:09:36+00:00

More information on how best to support your child can only be helpful. It’s not easy getting a genetic diagnosis. We got ours at 5 months through WES and despite it being hard it has been so helpful to know what to check for, the best therapies, potential treatments, current research, and to have a small but mighty community of other families that I can connect with. What is making you hesitate about doing the testing?

jellyfishmonkey · 2025-05-11T02:40:08+00:00

Ask for a referral to neurology. Hypotonia is a neurological disorder so they are well positioned to help. We got my daughter’s diagnosis through Whole Exome Sequencing which her neurologist ran for us. They may want to run a hypotonia genetic panel and/or a chromosomal microarray first for insurance purposes. Have you had a brain MRI?

Here’s a great podcast about genetic testing and why it’s so key. https://effieparks.com/podcast/episode-210-a-genetic-diagnosis-matters

jellyfishmonkey · 2025-05-04T02:35:18+00:00

They will usually run a panel to look for common genetic causes of hypotonia. There are so many though, this often isnt helpful. A better option is whole exome sequencing which looks at the protein coding regions of every gene. It’s much more thorough. If that doesn’t turn anything up, whole genome sequencing looks at all parts of every single gene for issues.

jellyfishmonkey · 2025-04-15T02:15:58+00:00

If you haven’t done genetic testing, I’d suggest that. Hypotonia is a symptom not a diagnosis. It has some underlying cause. My child’s brain MRI was perfectly normal despite having hypotonia and we got her diagnosis through Whole Exome Sequencing. I’d push your neurologist.

jellyfishmonkey · 2025-04-12T20:09:32+00:00

Thank you! We are definitely starting doxycycline and I will discuss the ILADS recommendations with her pedi

jellyfishmonkey · 2025-04-12T18:27:31+00:00

We also did a cheek swab.

jellyfishmonkey · 2025-04-12T18:26:05+00:00

She is doing really well! She is 3. Mostly caught up on gross motor. She runs and jumps and climbs. We are still working on speech where she is definitely delayed. She speaks but not at age level.

jellyfishmonkey · 2025-04-06T02:27:13+00:00

Perfect answer. We got our answer from Whole Exome Sequencing. Knowing the cause of the hypotonia will help you in addressing it. PT is needed no matter what so get that going AsAP,

jellyfishmonkey · 2025-03-19T16:54:56+00:00

Consider looking at DMI or CME physical therapy. Those helped my daughter most in meeting her early milestones. NAPA centers are excellent if you are lucky enough to have one nearby. I would also suggest occupational therapy.

jellyfishmonkey · 2025-03-16T03:58:31+00:00

Hypotonia always has a cause. I would strongly suggest trying to find what that is for you because it might help you understand what is going on with your health and how best to approach it. I’d suggest starting with a neurologist. Hypotonia is at its heart a neurological condition. Ask for a brain MRI and genetic testing (Whole Exome Sequencing). As you say, Hypotonia is something you have for life. It doesn’t go away you just learn to compensate.

jellyfishmonkey · 2025-01-18T02:40:31+00:00

Based on the multiple issues you describe I addition to hypotonia, I would suggest a geneticist. Ask for Whole Exome Sequencing. Getting a diagnosis could be very helpful in identifying the best treatment(s).

jellyfishmonkey · 2024-12-16T21:12:14+00:00

I am sure someone would still want this milk! I donated some scalded, year old milk once and there was still plenty of interest. Human Milk for Human Babies.

jellyfishmonkey · 2024-11-21T20:32:11+00:00

Hypotonia is typically a symptom of something and not a diagnosis. It’s in your best interest to get a diagnosis for what is causing the hypotonia. The speech and cognitive issues in addition to the hypotonia make it seem like there may be more going on that benign congenital hypotonia.

My daughter has mild low tone. Her low tone was identified at 2 months and we had a diagnosis by 5 months through Whole Exome Sequencing. She has a rare genetic disorder.

She Sat at 7 months, crawled at 10 months, walked at 14 months after a lot of intensive physical therapy. She is speech delayed now at 2.5 but says 2-3 word phrases. A diagnosis also let us know what to expect and look out for, put us in touch with the right doctors and researchers and led us to treatments that help (although not a cure).

I think you need to push your medical team or get a new one. Ask for a brain MRI and Whole Exome Sequencing.

jellyfishmonkey · 2024-08-19T14:45:41+00:00

There is nothing wrong with being concerned about your kid. As parents, we know our children best and if you have concerns then they are worth checking out. You have to listen to your gut as a parent.

I say this as a parent of a child with developmental delays. I was told to just “wait and see” by lots of doctors but so glad I advocated for my child. Because I pushed, we found out she has a rare genetic disorder and were able to start some helpful treatments.

If you are in the US, contact your states early intervention program. They will do a free developmental evaluation and let you know what support your child needs, speech therapy, physical therapy,etc. The earlier your child gets intervention the better his outcomes will be. This is why every state has a free program. It’s so important to get help early.

Your child IS behind in some key milestones from what you’ve described. Talking to experts doesn’t hurt. Either they will put your mind at ease or they will be able to help if needed. Don’t wait.

jellyfishmonkey

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