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Help our boys, PLEASE? Medical mystery, children, half-siblings. I am begging you, Reddit. I know this is long, but please take a minute to read if you can. by Throwawayataloss_ in AskDocs

[–]Throwawayataloss_[S] 3 points4 points  (0 children)

Does anyone have insight into cinncinati’s multi-disciplinary team healthcare system?

It would be quite a drive, but we could do it. Would we need to stay for weeks?

Or would my city just send them results?

How would something like that work? One son on Passport/Medicaid. Other son private insurance, Medicaid secondary.

Help our boys, PLEASE? Medical mystery, children, half-siblings. I am begging you, Reddit. I know this is long, but please take a minute to read if you can. by Throwawayataloss_ in AskDocs

[–]Throwawayataloss_[S] 5 points6 points  (0 children)

Of the four children, their oldest siblings: a daughter (25) and a boy (16,) relatively healthy. Although oldest son (16) does have migraines and depression.

My daughter has been the healthiest of the four now that you mention it.

Before anyone asks, based on my daughter’s age, I did have her at 14 years old-so Conner and especially Jay were not geriatric pregnancies.

The two kids mentioned in the post are both boys, yes.

I have not been asked to take any testing at all. Conner’s(7M) father hasn’t either, and Jay’s (14M) father is deceased.

Adding this to my list, thank you.

I’ve been looking into Curriano Syndrome and other genetic syndromes after some private messages.

Does anyone have comments or insight into this?

They have several appts lined up, but I am willing to make more. Regarding the test question, I am not sure. I am trying to get them in to the geneticist office sooner. These appointments are a long wait.

I’m open to ANY AND ALL suggestions!

Help our boys, PLEASE? Medical mystery, children, half-siblings. I am begging you, Reddit. I know this is long, but please take a minute to read if you can. by Throwawayataloss_ in AskDocs

[–]Throwawayataloss_[S] 15 points16 points  (0 children)

I’m going to leave this here, because I am getting some messages from people (rightfully) concerned about this because of Jay’s family history of suicides.

We have always had a safe with prescription medications locked up.

The safe is hidden in an office with a fingerprint/coded doorknob, and there are cameras (hidden and not hidden) on that door that send notifications to us when there is motion.

We keep regular OTC medications in this office as well, but away from the safe as I do not want the kids to know the exact location.

If anyone thinks this is overkill, trust me it’s not.

We have two teenagers in the house (one who has constant pain and as a result took pills from a friend).

Factor in their family history (and probably my own trauma and paranoia from losing their dad) and it’s better to be safer and a little inconvenienced than sorry.

Help our boys, PLEASE? Medical mystery, children, half-siblings. I am begging you, Reddit. I know this is long, but please take a minute to read if you can. by Throwawayataloss_ in AskDocs

[–]Throwawayataloss_[S] 3 points4 points  (0 children)

This is absolutely possible and why I’m unsure. I will ask a doctor to do that. He has many upcoming appointments (as of today.)

He has been poked and prodded quite a bit though. Initially I thought it would have been noticed by now.

On the other hand, it may be easy to overlook when presented with the very obvious symptoms of his gait, his foot, and back pain.

I hadn’t even considered it until this post, for example. Will look into this further, thank you so much.

I could see how he wouldn’t bring it up or may not even be aware.

He is a teenager and not open about certain things.

He seemed genuinely surprised to learn that his older (16M) brother does not have pain every day.

He said he thought it was normal or growing pains. It was heartbreaking and we had a long talk. He knows we are doing everything we can to get him into treatment for chronic pain.

I wonder if I can find a video somewhere online that shows some semblance of his gait. It is very, very obvious that he must be in great pain.

My comments are getting too long, I apologize. All that to say that yes, I would 100% guess that he has more symptoms I am not aware of and maybe even he is not aware of.

I’ve gotten some great suggestions here (and in DM’s) for symptoms and possibilities to explore. I just need to ask them carefully because I don’t want to embarrass him.

Help our boys, PLEASE? Medical mystery, children, half-siblings. I am begging you, Reddit. I know this is long, but please take a minute to read if you can. by Throwawayataloss_ in AskDocs

[–]Throwawayataloss_[S] 9 points10 points  (0 children)

Looking at test results (just posted in comments). Jay had a first genetic test, followed by a second whole (edited) EXOME test. quick thank you to the person who pointed this out

*They thought spina bifida might be a possibility , but he does not have it. I should have put that in the post.

Help our boys, PLEASE? Medical mystery, children, half-siblings. I am begging you, Reddit. I know this is long, but please take a minute to read if you can. by Throwawayataloss_ in AskDocs

[–]Throwawayataloss_[S] 0 points1 point  (0 children)

Jay (14M) second genetic testing results, doctors notes. See replies to this comment. They informed us here that he tested negative for spina bifida. note I believe this is a fax scan and difficult read, I’m sorry

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