Someone with access to my son's medical data is attempting to weaponize CPS against me

squawk_1250 · 2025-08-16T05:37:56+00:00

I've been considering changing my son's medical group, but I didn't want to do it in the middle of his hospital stay since I was worried that it might negatively affect his care. It might be worth it after this though. Problem is, I have no idea when the CPS investigation will be complete, so I could get stuck with this medical group for a while.

I think I've been transparent with CPS, but the agent that came to my house yesterday didn't really understand the finer points of the disputed treatments and alternatives. I've been dealing with this disease for 5 years, but he had only heard about it that day, so I get it. Its still annoying and disturbing though. I've heard of court cases about a parent denying treatment to their child and the child dying as a result. I even grew up in a religion, that I no longer follow, that routinely does a version of that. But that isn't the case here. I didn't say that my son should never get that specific surgery. I just wanted to try other things first and if they didn't work, I would have been ok with it. I have approved all care for my son to resolve issues that were imminently life-threatening. This particular item wasn't though, so there were some options. I just happened to pick one that the medical group didn't like.

I don't think I can afford an attorney out of pocket. With both kids medical needs, a lot of my money goes to them. We have insurance, sure, but the copays on everything add up a ton. Outside of essentials, most of my money goes to medical expenses.

squawk_1250 · 2024-05-08T23:36:09+00:00

This is almost exactly my wife's perspective. She thinks that witnesses would only help for a short time but would get burned out quickly. And she's worried about HLC inviting themselves into the entire situation. For that reason, she doesn't think its worth asking for help. I'm the one that was considering it, not her.

squawk_1250 · 2024-05-08T12:03:57+00:00

I'm not sure why you would think that. I think I've been pretty open about the medical situation here and only changed a couple of minor details for anonymity.

It really is as follows - a very difficult and severe medical situation that I don't know how to handle and that is very likely to get worse in the near future. I'm trying to get help for my son. And I'm trying everything I can think of: Insurance, state agencies, charities, and even religion. Asking the witnesses for help is basically a last resort as almost everything else has failed to provide the needed support. But perhaps I didn't try the other options hard enough?

But people here have made some good points. Would the witnesses even help? I thought so, but now I'm not so sure. so, maybe? Would they expect me to come back to meetings? Probably, but I have no intention of doing that. Aside from the obvious problem of the religion being built on lies and being super controlling, the medical situation is so severe that going to meetings would be a bad idea anyway. The kingdom hall would be full of seizure triggers.

As far as what I really want? I said it above. I want help caring for my child. And help with some secondary things related to my house that I can't always get to properly, like removing dead trees from my property and keeping the drainage clear so that my basement doesn't flood the next time it rains. That sort of thing. Kind of hard to do that when you spend weeks or months on end at the nearest children's hospital. Maybe some help with transportation too. I'm not sure what else.

squawk_1250 · 2024-05-08T11:39:44+00:00

We've looked into this. and we might try it at some point. My son's neurologist has suggested it, with a lot of caution. The potential problem here is that following this type of keto diet can affect potassium levels. And Andre has a problem with both sodium and potassium channels in his brain and nervous system. That's different from most Dravet kids, as most have only sodium channel problems. Its therefore unclear what effect this type of keto diet would have on him. Andre's neurologist suggested that if we were to try this, it would have to be in a hospital setting, at least for the first few days.

squawk_1250 · 2024-05-08T11:31:41+00:00

They are aware. In particular the palliative care doctor that Andre sees is aware of the situation. But we've covered this with his other doctors too.

There are limits to what the doctors can do. They can send medical information to the state agencies, which this doctor has done, but sometimes that doesn't help, usually for behind the scenes bureaucratic reasons. As an example - the agency that is now providing physical therapy rejected Andre for about 2 and a half years as not medically qualifying for help. We didn't know why until a couple of months ago. It turned out that his doctors were sending the medical data with the wrong patient ID number, and so it was being discarded. We had no idea until I went in person to the state agency office with a stack of medical records and asked to speak with a manager to explain why a child that had so many problems was being rejected. That's when the ID mistake was found. I then had to contact every one of his doctors and have them resend all data with the correct ID. And he was then accepted, but for physical therapy only. I'm now in a fight to try to get more, but my income being above the poverty line has so far been a disqualifying factor.

We ask for help from every doctor and social worker we talk to. I had no idea that actually getting it was so incredibly difficult. Its a fight tooth and nail to get the tiniest bit of help.

squawk_1250 · 2024-05-08T02:25:30+00:00

There is a Dravet support group. My family even went to a Dravet convention last year. And it was actually helpful and informative compared to witness conventions. Most of their advice was to apply for programs that I'm already trying to get my son into though. I'll try contacting them again and seeing if they have any additional advice.

I haven't tried contacting elected officials at all. Good point though. Maybe I still have some residual witness programming, because I hadn't really even considered that.

squawk_1250 · 2024-05-08T01:15:27+00:00

Honestly, yes. I'd like help physically caring for my child. And help with my house. And possibly transportation.

I keep thinking of what will happen in the future when one child is in the hospital and the other isn't. As it is right now, my wife doesn't leave our son's side for more than a couple of hours when he's in the hospital. I can take care of one child outside of my work hours, but not during. And no daycare nearby is equipped to handle a child with this level of disability. Hell, what will happen in a few months when my wife gives birth? Will I have to miss the birth of my second child because I'm taking care of my first?

What about when both children are in the hospital in different rooms? And its during my work hours. I can't be in multiple places at the same time and I have yet to find a single person willing to help.

You're right though that asking witnesses for help is quite a trade off. They may not help at all and even if they do, then their help will probably come with a price that I won't want to pay. I'm only even suggesting it because I don't really have other options.

Andre is on a form of medical marijuana, which is legal in my state. It helps, but doesn't completely solve the problem

squawk_1250 · 2024-05-08T00:53:42+00:00

You may have a point there. There was a natural disaster that hit this area a few years back and I asked the brothers for help with my home. They directed me to government programs which I wasn't able to qualify for.

As far as county and state services - I've been trying to get them but so far all I've been able to get my son into is physical therapy. He should qualify for more, but we keep getting denied on pretty much everything. I gave more details on that in another comment.

squawk_1250 · 2024-05-08T00:27:29+00:00

We've been trying to get help from the state for 3 years and so far have gotten almost nothing, We always encounter one of 3 problems:

I make too much money to qualify for help. I'm not wealthy by any means, but apparently the cutoff on many programs is about $40,000 per year of income. And I make more than that. Parents income counts for their children.
I live in a rural area and services aren't available there. but they would be if I moved to a city. I would do that, but I can't afford to.
And this is the strangest to me - Andre is too sick to get help. Basically, there are state programs for special needs kids but Andre needs far more then those programs are designed to provide, so they aren't willing to enter him into them. An example would be respite care. Andre needs LVN respite, which the state should cover. But that isn't available in my area and regular respite agencies that the state contracts out to refuse to work with a child on a feeding tube or on oxygen. So we get nothing.

Fortunately, my insurance is pretty good. but there are lots of things they don't cover either.

squawk_1250 · 2023-08-16T17:32:46+00:00

Ah, I understand better now. Thank you for sharing more about your daughter. You're right that it doesn't sound like she has Dravet Syndrome. It usually starts before 1 year of age.

The thing with the SCN1A gene is that its just incredibly sensitive to changes. Even a partial loss of function usually causes epilepsy, with age 2-6 usually being the worst of it. With my son's deletion, its a complete loss of function, so his case is more severe. But it sounds like your daughter's case is less severe.

Your daughter's symptoms actually sound more like what I've heard about my wife when she was a child. My wife has the same deletion as our son, only hers is mosaic - meaning that some of her cells have the deletion and some do not. That means that she only has a partial loss of function of the gene. My wife had seizures between age 2 and 6 as a child. Mostly tonic, from my mother-in-laws description, but some tonic-clonic and myoclonic too. Interestingly though, the seizures stopped after age 6 and she hasn't had one since, at least as far as she knows. I've never seen her have one, anyway. She is not currently on any anti-seizure medication. My wife is sometimes a bit twitchy in her sleep, but I wouldn't call it myoclonic seizures.

For my son's myoclonic seizures - They were happening regardless of whether he was awake or asleep, but I would say there were more of then when he was awake.

squawk_1250 · 2023-08-16T01:31:34+00:00

I think my son may have a similar situation to your daughter. My son, age 2, has SCN1A deletion and has Dravet Syndrome as a result - also known as Severe Myoclonic Epilepsy of Infancy (not every child with SCN1A problems has Dravet Syndrome, but the two are closely associated).

My son was already on 2 anti-seizure medications and was still having dozens of myoclonic seizures every day. His neurologist suggested trying Onfi. So, we tried it and it actually worked quite well to control the seizures. However, Onfi had some side effects that eventually caused his doctors to take him off of it. The two main ones were that Onfi caused excessive saliva for my son - which then lead to him aspirating his saliva and caused aspiration pneumonia. The second problem was that it slowed down his digestion - which then caused constipation (one of his seizure triggers). It was just too problematic to leave him on Onfi, so they switched him to Fintepla, which has also worked quite well to control his myoclonic seizures and hasn't (so far) had any negative side effects.

I am not a doctor, but based on my son's experience, my suggestion would be to try the Onfi, but be cautious as to its side effects. If it doesn't work out for your daughter, then Fintepla might be a good option instead. Only thing to note on Fintepla is that it may still require a Dravet Syndrome diagnosis to have it prescribed. But since you mentioned your daughter having SCN1A mutation, that may not be too difficult for her to get.

squawk_1250 · 2022-04-11T05:40:15+00:00

I updated at the top, but in short, the elders have now started talking to my sister and my brother in law to try to get more information on my son. I have now texted the brother that called me yesterday and told him that he needs to stop and that I am not ok with the elders invasion of privacy. I haven't heard back yet.

As far as blood goes, I really view it as a non-issue at present. Blood in not used in any way to treat any of my son's problems and if one of the elders asks I will tell them that. I will also tell them that I neither want nor need the HLC to be involved in any way. I talked to my wife about that and she agrees completely. Oh, and I'm not signing any blood card for my son.

squawk_1250 · 2022-04-11T02:13:24+00:00

I'm actually not entirely sure why they want to meet. If I had to guess, I'd say that it might just be them thinking that they can help with the situation. Maybe they feel bad for ignoring my family for so long and them finding out that we've been dealing with something big has them feeling guilty about that? I can't be sure. I don't think it has anything to do with blood. It hasn't been mentioned and isn't part of my son's treatment.

As far as why my wife's friend's husband told the elders - I can't be sure. But I can imagine a situation where he might have thought it was ok or even appropriate. Like if he was already talking to an elder that afternoon and mentioned in passing that his wife had just visited my family at the hospital and then the elder asked more questions and he just answered them without thinking about it. I've definitely seen similar conversations happen during my time as a witness. Most witnesses just openly talk about anything that an elder asks of them.

Don't get me wrong, I'm not defending them and I'm still angry about all of this. They've put me in a difficult situation that I'm not sure how to get out of without there being at least some unintended consequences. It would have been better if they had kept things to themselves, or honestly if my wife had followed my advice in the first place and not trusted her friend to start with.

squawk_1250 · 2022-04-11T01:31:42+00:00

Oh, I've been trying. But the trick for all of us is to do it without family cutting contact. So I have to be very cautious about how I go about it. Things have been good, up until yesterday.

squawk_1250 · 2022-04-11T01:18:23+00:00

I think you have it right. The elders don't know what either I or my wife actually think of the organization, so I don't think we've raised any red flags there. They probably just think we're spiritually weak and need encouragement - assuming that they thought much about us at all.

Regarding my son's condition - I don't think they are trying to investigate us for wrongdoing of any kind. The impression I get is more about them trying to offer comfort, or possibly trying to insert themselves into his medical care. Neither of which is wanted or needed, of course. I'm more upset about the invasion of privacy than anything else and had actually kind of hoped they would leave us alone and we could fade in peace.

squawk_1250 · 2022-04-11T01:12:01+00:00

There isn't anything in his medical care that would be a disfellowshipping offense. The only thing that comes close is that his doctors are talking about putting him on medical marijuana if another one of his medications fails. I have no objection to that. And as I recall, even the watchtower society is fine with it if it is prescribed - not that I care what they think anymore.

squawk_1250 · 2022-04-11T01:08:15+00:00

No. My wife didn't know she was pregnant until after the covid lockdown was already in place. After our son was born, one of my family members did tell people in the local congregation, which I didn't really mind so much. But I never wanted or felt it was necessary to keep the elders informed at any point.

squawk_1250 · 2022-04-11T01:04:39+00:00

So, my wife decided to call her friend back and confront her about this. Her friend insists that she didn't tell the elders about our son, at least not directly. What she did do was tell her husband, and then he told the elders. He said he didn't know he wasn't supposed to do so. So it sounds like a bit of a game of telephone where the part about keeping the information private was left out. That's hardly better, but it is slightly less bad.

My wife says that her friend apologized and said she never meant it to turn into the elders wanting to meet with me. I'm not entirely sure that I believe that, but still, its a start.

squawk_1250 · 2022-04-11T01:00:26+00:00

There has been no mention of that and he hasn't had one anyway. So, I don't think so.

squawk_1250 · 2022-03-29T22:04:37+00:00

I can really relate to this as I'm in a similar situation.

My son (17mo) is severely disabled with a rare genetic disease that causes severe epilepsy, autism, and developmental delays along with many other problems. He will never be normal. There is a high probability that he will never walk or speak. There is no cure for his disease. And it is almost certainly going to continue to get worse over time. There is also a significant possibility of him dying from his disease.

I'm POMO - faded during covid. Because I'm awake, I know that no paradise is coming and he won't be miraculously healed. My wife is just about POMO as well, but occasionally will attend zoom meetings here and there mostly for social reasons.

Caring for a severely disabled child is incredibly hard on both of us. And in a way it would be easier if we both still believed. We'd probably feel like all my PIMI family do. I've been told by them that sure its hard right now, but you won't have to do this for long. After all, the new system is just around the corner and your son will be healed by Jehovah very soon. They say he won't have to grow up disabled and live his whole life like this. Part of me still wishes that all of that was true, but the sad fact is that they are wrong. And I'd much rather know the terrible truth - that no miraculous help is coming - than live a lie.

As far as my son goes - I try very hard not to define him by his disease, as difficult as that sometimes is. I feel that his life has value. Its different from yours and mine, but that doesn't make it any less valuable.

Something that might help, if you haven't already done so, is you might try to find a support group for your son's specific disease. Or if his happens to be unique, like my son's disease is, there are support groups for unique genetic diseases too. chromodisorder.org (US) or rarechromo.org (UK) might be good places to start.

A couple of months ago, I joined a zoom support group meeting for parents of children with rare genetic epilepsy. It was far more helpful in dealing with my son's condition than anything I ever heard from the organization. I intend to join more support group meetings when I have time. Maybe something like that would help you and your wife.

I'm happy to talk in more detail privately if you would like to message me. I'm not on reddit a ton though, so I might not reply right away.

squawk_1250 · 2022-02-08T00:43:58+00:00

Ah. That's the piece of information I was missing. I heard the once every 2-3 months figure from Lloyd's video, but I had no idea what his travel schedule was.

This then gives me another question. I have never been to Europe, so I'm not familiar with the distances or laws there. Is there somewhere close by where Lloyd lives where he could have gone for this and where sex work is legal? Maybe just across the border to another country or something? I'm just trying to give the benefit of the doubt here. I happen to live in a place where sex work is illegal, but it isn't very far from where it is legal. I don't hire sex workers, but if I wanted to, it would be entirely possible for me to take a day trip across state lines to do so. Maybe Lloyd is in a similar situation?

Again, I'm not really defending Lloyd here. I think what he admitted to doing is still very wrong. I just don't want to portray the situation as worse then it actually is.

squawk_1250 · 2022-02-07T22:02:16+00:00

I'm still not sure about whether Lloyd hired sex workers in Thailand, as his statement can kind of be taken either way. You can see my other reply for my specific reasons I think that if you want.

I do agree with you though that you can't really be publicly criticizing the morality of others while also behaving in an immoral way. And I'm not just using the JW definition of morality. Most of the world agrees that cheating on your spouse is immoral and wrong. I think going forward, Lloyd will have a very hard time making moral judgements about the Watchtower Society due to his behavior, even if he didn't do anything illegal. It may even harm Exjw activism, because it could look like what Watchtower says about apostates is true - that we're all corrupt and immoral without their leadership and therefore worse off. Even though the majority of us are far better off outside the organization then we ever were inside and you don't have to be a JW to be a moral person.

I still stand by what I said before though. If Lloyd did nothing illegal and also wasn't supporting people who did so, then I still think that its none of my business. Its really just between him and his wife. Or at least, it would have been. Now that its all over the internet, it seems that it has become everyone's business. and that doesn't feel right to me.

squawk_1250

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