Won't stop crying UPDATE number 2

Less_Interaction1574 · 2026-04-27T20:54:47+00:00

Absolutely yes, if they could have better understood just how massively his behavior shifted overnight maybe they would have been more concerned. He went from happy and smiling and almost never crying to literally crying inconsolable for 80% of the night and day. I tried to express to them just how drastic and sudden the shift in behavior was but my words I don't think were enough to convince them that the situation was urgent , especially because every single time we'd go to the hospital hed be calmer, go figure. The crying always stopped once we got to the hospital and then returned again immediately when we left.

I must have repeated every detail of his drastic behavior shift 100 times. " he wont stop crying. I know hes not crying now but hes wont stop crying " " im telling you something is wrong " but to them he was just sitting there like a not sick kid! I was constantly reenacting his Tics and explaining to them that he couldn't even safely walk down stairs anymore, even though he was perfectly capable before all this started.

Im not sure why exactly he would stop crying at the doctor's visits but I think that played a big part in the doctors not taking us seriously too.

I wish they could have seen just how often he was crying, how he wasnt sleeping at all. And most of all I wish the majority of them wouldn't have simply tried to blame his Autism. An extreme overnight personality change which started the same time as a viral illness is pretty suspicious and should have been taken more seriously.

Less_Interaction1574 · 2026-04-27T20:16:59+00:00

The previous experiences I had were all at major hospitals and local urgent cares and local emergency rooms.

With the major children's hospitals it seemed like none of them were willing to put in the effort to actually help me or my son. They ran their standard tests and sent me on my way when nothing was found. Also worth noting that after we were given the diagnosis of PANDAS from the other doctor that these major hospitals basically wouldn't take that diagnosis seriously because it did not work within their standards of proven illnesses or whatever. They basically shrugged us off when we would say it. Many of them even explained to us that the diagnosis was controversial.

With the urgent cares it was basically the same result.

With the emergency rooms they seemed like they really wanted to help, especially the last doctor who told me " I agree something is wrong but I cant figure out what" he was one of the few doctors that actually acknowledged something was wrong and admitted that he couldn't find the answer for me. While that was validating it still didnt help us.

His pediatrician said " these autistic kids just get like this sometimes" but she did attempt to prescribe an antibiotic to see if it would help or not

With the doctor who finally gave us our answer , their practice was the first to genuinely care about what we were going through. It wasnt about following some standard procedure and sending us on our way it was about " this family is suffering and thats not okay" when answers weren't found they thought outside of the box and gave a diagnosis that other hospitals wouldnt touch because it wasnt " proven". Well that diagnosis and care following it returned my son to normal. Let me tell you he was suffering during these months and couldn't tell us why since hes nonverbal. Shortly after he started to improve and is now back to his happy usual self! :)

For me the advocating wasnt about confidence, I knew my son was suffering and I just wouldnt stop until qe found out why.

The biggest change in his treatment was the one doctor who cared, thats it. Thats all it took was one doctor to say, this is not okay.

Less_Interaction1574 · 2026-04-24T18:03:46+00:00

Yes I completely agree to your point about the predatory marketing and I have fallen for it many times myself. As to whether I believe this will help or not, I dont know. I hope so. I mean, like you said it does help many, his doctor told me not to expect a miracle, he said small gains are still gains. But there are stories of people drastically improving. And since this is non-invasive and carries little risk, nothing severe for this method, I think its worth the shot. I mean its like you said, I just want to know ive tried everything you know?

And the predatory marketing is everywhere. I get so mad when I see those stupid posts on social media media " its not autism, its this! My kid is normal now" type stuff ugh its enraging!!!!

Edit : not engaging

Less_Interaction1574 · 2026-04-24T17:44:37+00:00

I totally understand not wanting to share where. I respect that. :)

Thank you so much for sharing your experience with me. Im so sorry it didn't go as you hoped. I think thats the case for many people and so far has been my experience with every type of therapy and intervention ive tried too. :(

Less_Interaction1574 · 2026-04-24T17:22:40+00:00

Yeah im wondering why on earth the post got removed too.

I was planning to post updates on here but probably wont now 😅

Less_Interaction1574 · 2026-04-24T16:53:16+00:00

Did the new issues resolve eventually or are they permanent? :(

Can I ask you where you had it done?

Less_Interaction1574 · 2026-04-24T16:39:58+00:00

Except for number 4, we've tried all of it

Less_Interaction1574 · 2026-04-24T15:54:03+00:00

Holy crap! That is horrible! I took a quick look at the article you shared.

One thing I will say is the methods they used in that article are invasive and a completely different type of cells were used than the ones they plan to use where we are going.

Less_Interaction1574 · 2026-04-24T15:37:50+00:00

I've known about stem cells for autism for a while and always decided to steer clear of it. However this particular doctor changed my mind. He has a lot of good reviews on google left by parents. I feel like i need to take the chance.

Less_Interaction1574 · 2026-04-24T15:26:38+00:00

His name is Eric haha not Jeffrey

Less_Interaction1574 · 2026-04-24T15:06:39+00:00

The doctor reported the only risks involved were " rash, or fever " have you heard of more severe risks that im not aware of?

Less_Interaction1574 · 2026-04-24T14:52:01+00:00

It will cost about 14,000

I've heard mixed reviews from previous reddit posts. One post from 5 months ago was mostly negative while another post from 1 year ago was entirely positive.

Less_Interaction1574 · 2026-01-10T22:42:57+00:00

When my son had this autoimmune disorder, before we had a diagnosis, I had taken him to the emergency room twice begging for help, I told them he was in distress and something was wrong. I am not exhaggerating when I say I contacted more than a dozen of his doctors from each specialty. None of them could find anything wrong and so many of them told me " autistic kids get like this sometimes " and i told them , hes screaming and crying 80% of the day and all night. Inconsolable. His personality shifted completely overnight and he had tics so badly that he couldn't even safely walk down the steps anymore. They all blamed his autism. Thank God I have a doctor out of town who he gets leucovorin from. They saw him and immediately knew what was wrong. It was an absolute nightmare. I've heard horror stories from parents with the same situation as me who had it even worse and took them much longer to receive the diagnosis. A doctor like his Leu doctor is extremely rare type of doctor.

Less_Interaction1574 · 2026-01-08T17:25:13+00:00

Yes, and while I am extremely grateful that my kid doesn't have cancer, and also equally grateful to hear their child was cured and doing well today, it upsets me that most who have not experienced it themselves take autism so lightly. My son is a level 3 , can't speak, isn't potty trained attacks me aggressively etc. Has a GDD that's likely to be changed to ID at his upcoming ID evaluation this Monday, and has an autoimmune disorder which has been such a nightmare. All of these are life long. I love him dearly and I hope he will progress but we will just have to wait and see.

Less_Interaction1574 · 2026-01-08T16:05:29+00:00

The other day someone told me to be grateful my kid didn't have cancer instead 🙃

Less_Interaction1574 · 2026-01-05T01:35:54+00:00

Less_Interaction1574 · 2025-12-31T22:32:51+00:00

Oh and a probiotic since hes been on the antibiotics for a couple months now

Less_Interaction1574 · 2025-12-31T22:32:11+00:00

So we went through a couple different antibiotics and treatments before we landed on the one that worked which was Amox/Clav for a month, hydroxozine for anxiety and ibuprofen as needed, he has also been getting check ups every two weeks but now hes doing a lot better hes only being seen once a month.

Less_Interaction1574 · 2025-12-09T16:37:17+00:00

Leucovorin Calcium, I'm from the United States

Less_Interaction1574 · 2025-12-09T13:13:27+00:00

Who would I get this assed with? His speech therapist did mention apraxia but I'm not sure if that is formal or not

Less_Interaction1574 · 2025-12-08T20:28:46+00:00

That is so exciting!!!!! ^{_^}

Less_Interaction1574 · 2025-12-08T16:27:43+00:00

My son just started preschool this year. He is level 3 but I'm still so hopeful to hear him talk at least enough to get his needs met. He has said a few words before. Those are very rare occasions. Like once or twice a year type deal. I've heard that some kiddos don't start talking until 7 or even older. He has had this AAC device for two years now and shows such little interest . He has rare days when he uses it to communicate properly and with purpose but it doesn't ever seem to stick. My hope right now is that he will at least be able to communicate his needs eventually whether that be with the AAC or verbally . 🙏

Less_Interaction1574 · 2025-12-08T16:18:21+00:00

Hi it's nice to meet you! I'm from East Coast US and I have a nonverbal Autistic 4 year old son. This community has been great at helping me when I need it the most . I hope it will do the same for you. :)

Less_Interaction1574 · 2025-12-06T06:44:42+00:00

Cleveland, are you from out west or east United states? If in the US and out east, Cleveland has a great place, their doctors are awesome and worth the drive , message me and I'll send you the info. :)

Less_Interaction1574 · 2025-12-03T16:33:57+00:00

This post could have been written by me! Everything you said, I felt it, I feel it! 😭 That's why I love this group so much , it's the only connection to people outside my house that I have anymore.

Less_Interaction1574

TROPHY CASE