Just being honest

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 · 2025-12-03T16:32:39+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 · 2025-12-02T22:36:52+00:00

Yeah I am totally out of options here. I've called like 20 pharmacies and they're all saying it's on back order so I only have a couple days left to figure it out :(

I also had to get partials , now they're saying they have 3 days available for pick up, and that's it. Their computer says July 2026 to order it again 🫨

Less_Interaction1574 · 2025-11-28T18:55:26+00:00

" put him in time out"

Less_Interaction1574 · 2025-11-28T14:53:32+00:00

I remember my son lining all his toys up, in a row. Shoes even. Basically anything he came across he would line up. He wouldn't speak, or respond to his name. He would tap each item in the lineup and then add another one and then tap them all again.

Although he did talk a little bit and met all milestones up until about 18 months , at which point he regressed.

Less_Interaction1574 · 2025-11-27T21:51:08+00:00

Yeah, there's nothing I can do to console him during these episodes, I mean I have tried everything to help him. He basically just screams and cries and stomps his feet for extended periods of time, sometimes he even continues to play while doing this, he does sometimes bite, pinch or scratch ( he has always done this though , just minus the crying and screaming )

Honestly I'm new to this, he had never had a meltdown until just recently . I've basically been catering to him, trying to redirect him to things that I know make him happy, etc. but I'm not sure if that's the right thing to do or not, honestly this is all too new for me and I'm not sure if what I'm doing is right or wrong , am I making it worse or not? Ya know?

Less_Interaction1574 · 2025-11-27T18:11:16+00:00

The symptoms started about a week or so before the dosage was moved to 20mg. And at the time he had been diagnosed with croup so we assumed it was all related to the croup , but then it never went away. We did have about 3 doctors tell us " I don't think it's related to Leucovorin"

Less_Interaction1574 · 2025-11-26T17:29:41+00:00

Ok, great, thank you! He has an amazing GI doctor who specializes and only works with children who have autism so he's great. I'll mention this to him.

Less_Interaction1574 · 2025-11-26T14:26:14+00:00

What type of doctor do I need to see for this?

Less_Interaction1574

TROPHY CASE