Jill Berglin

Wifey, mama, business owner. Surviving on sarcasm, dark humor, and a little bit of CrossFit.

[Jill Berglin @JillBerglin]

BIG UPDATE:

Asher has had some better days recently. So much so that he was able to receive the Rituximab infusion yesterday. It’s a major immunosuppressant that targets the B cells. The hope is that it will calm the autoimmune storm that’s attacking his brain. The infusion itself took about 10.5 hrs. Thankfully there was no major reaction to it (aside from a persistent headache). It’s not an overnight fix. He’ll need a follow up infusion in 14 days and we won’t expect to see any sort of change for at least 30 days after that.

He’s still very sensitive to light so his room remains dark, the intensity of his sound sensitivity comes and goes, his speech comes and goes, and he’s still 100% dependent on TPN (Total Parenteral Nutrition). We’ve seen a shift in him though and it’s brought him out of the longest phase of what I can best describe as catatonia (or a flare - or both). We’re having some good conversations, deep belly laughs, and watching his inquisitive mind start to return. This illness waxes and wanes unpredictably but I’m holding onto these good moments as tight as I can. Sadly they can disappear just as fast as they arrived.

The plan now is to get his overdue fourth IVIG infusion on Monday, discharge possibly Tuesday, then come back to the hospital for his follow up Rituximab infusion outpatient.

Not a day goes by that I don’t feel completely overwhelmed by the outpouring of love and support from all of you. Our family has seen some really dark days through all of this. Here’s hoping this is the start of something really good for him. #pans #pandas #autoimmune #encephalitis #AsherStrong

[Jill Berglin @JillBerglin]

From valedictorian to catatonic. It was never a psych issue, it was an immune issue.

[Brain Inflammation Collaborative @BrainInflCollab]

April Burrell lived in a psychiatric hospital for 20 years.

Her catatonic state left her immobile and unresponsive.

But after 2 decades, she suddenly woke up.

Here is why...🧵

[Jill Berglin @JillBerglin]

106 days in the hospital:
Asher has had some better moments over the last couple weeks, but he is so sick. Our current focus is nutritional restoration but even the most basic tasks have become what feels like an impossible battle. Something needs to shift for him and I don’t know what it’s going to take (honestly, he needs a miracle). It terrifies me. I’m grateful for the TPN that’s keeping him alive right now but it doesn’t come without major risks. The kind of risks that cause serious infection. His body is too fragile for that but our situation is making it difficult to prevent.

I keep thinking all of this couldn’t possibly get any worse, yet here we are. This illness has broken me. My faith has been tested, shattered, and rebuilt over and over again.

#PANDASnetwork #pandasppn #pans #pandas #panspandashour #AsherStrong

[Jill Berglin @JillBerglin]

This is a long overdue update but after 96 days in the hospital we were really hoping to be at a better place than we are now. It’s so easy to second guess every angle of treatment for this illness. I continue to pray for guidance and clarity on how to bring Asher out of this crisis mode we’ve managed to stay stuck in for so long.

As much as we would all really love to have him home, he’s going to remain inpatient at the Univeristy of Iowa children’s hospital until he’s a little more stable #pandas #autoimmuneencephalitis #panspandas

[LAST WEAPON @weaponrosary]

Northwest Children’s Hospital, this is the most heartless thing I have ever read. @RobertKennedyJr how is this happening in America to thousands of suffering children?! @HHSResponse this needs your involvement asap! 🥹

@DrOzCMS @NIHDirector_Jay @NNwppn @MAHA_Action

[Jill Berglin @JillBerglin]

@weaponrosary @RobertKennedyJr @HHSGov @HHSResponse @MAHA_Action @ZachWahls @SenJoniErnst Iowa needs change. These children deserve so much better.

[LAST WEAPON @weaponrosary]

@RobertKennedyJr warning this will be one of the hardest videos you have ever watched.

These are 16 real life stories today of children trapped in a LIVING HELL with PANS / PANDAS.

Have mercy on our children.
@HHSGov @HHSResponse @MAHA_Action

[Jill Berglin @JillBerglin]

Update from UCLA

We’ve ruled out a lot of things, drawn labs more times than we can count, had 21 glucose checks, sedated twice, received his 3rd IVIG infusion, started a treatment, failed a treatment, and preparing to get Rituximab as we simultaneously schedule our flight back to Iowa

[Jill Berglin @JillBerglin]

After 39 days at the @uiowa, Asher was transferred by med flight to @UCLA to see a rheumatologist who not only specializes in PANDAS but also has experience in severe cases. After an extensive intake with all the other teams in the hospital, we finally met with the specialist today and he’s formulating a game plan right now.

In the meantime Asher’s step mom Beth is here with me and we’re working on solidifying logistics like housing, transportation, and meals. We did just get accepted to a Ronald McDonald house for tomorrow in Pasadena but it’s about 40 min from the hospital so we’re hoping to get bumped up the waist list for the one across the street from the hospital as it would eliminate the need for transportation.

Thank you again for your unending prayers! It’s been a brutal journey but it’s such a relief to finally be in a facility that not only recognizes this illness but also has a doctor who is actively treating 900 families with this condition. I’m confident Asher is in good hands. I will continue to update as we learn more about his plans for Asher.

[Jill Berglin @JillBerglin]

A quick update on Asher while I’m home for the weekend to spend some time with my other kids. I’m really eager to have us all under one roof again.

[Jill Berglin @JillBerglin]

What are the odds

[Jill Berglin @JillBerglin]

Today is Friday March 13th. He’s much more alert and no longer gasping for air. Still very weak and nowhere near baseline, but he’s more communicative, cracking some jokes again, and I feel like he’s at least in a stable enough place that I too can breathe.

From what I’m learning, histamine response can play a major role in the kind of symptoms he’s presenting with. I brought it up at the care conference and we implemented the ideas. We added H1 and H2 blockers to Asher’s protocol on Tuesday night. Maybe it was a fluke, but by Wednsday at noon he was sitting up unassisted (something he hadn’t done in over a week).

He’s sedated right now while they advance his NG tube to an NJ tube. Obviously not something we want to rely on long term but we’re really hopeful that bypassing his stomach for a while will at least allow him to get regular feeds and start gaining weight again. Ultimately, we want to wean off the TPN all together. Anesthesia always makes me nervous. He doesn’t come out of it very easily. Prayers for a smooth afternoon for him would be wonderful right now.

[Jill Berglin @JillBerglin]

He’s looking better than the day I took my last video. I suspect the effects of a pain medicine we tried with him had something to do with that level of what I would describe as lethargy (we immediately titrated down). He’s still INCREDIBLY weak but I’m not seeing the big gasps for air like the other day.

We ran extra labs, had hematology rule out the reasoning behind some of his numbers, and Neurology stopped by to examine him. At this point his current care team is attributing all of these symptoms to his severe state of malnutrition. We are in a hospital that doesn’t treat PANDAS so their focus with him during this stay is purely from a nutritional standpoint.

I’ve had many well meaning suggestions on which doctors I should transfer him to right now but the reality is we are in crisis mode. He’s not stable enough to leave the hospital and is completely reliant on TPN. This isn’t a long term solution. We’ve been here 17 days now and we’re still trying to address the severe level of pain that he gets when he puts anything in his stomach. Until we can tackle that, he’s not getting any closer to discharge.

We have a care conference scheduled for this afternoon so hopefully there will be a plan we can come up with to reduce stomach pain, bring this kid to a stable place, get him off TPN, and bring him home for some more substantial nutrition.

[Jill Berglin @JillBerglin]

This started before his most recent IVIG infusion so we know it’s not a side effect of that. Very few moments has he had the strength to hold his own head up since this started 5 days ago. His doctors don’t know what to make of it. We’re told he’s getting adequate nutrition through TPN that this level of lethargy should not be related to his current nutritional needs. 6 months ago I thought this whole thing couldn’t possibly get worse. And yet here we are. Hoping this latest infusion helps kickstart quicker healing for him. Constantly reminding myself that this is a marathon, not a sprint.

#PANDAS

[Jill Berglin @JillBerglin]

Asher will be here a while. If anyone is interested in sending words of encouragement, he would love some messages! We’re all missing the normalcy of school and friends. He loves riddles too. If you have a good one, drop it here and I’ll read it to him! ♥️

[Jill Berglin @JillBerglin]

UPDATE:
Asher is still in the hospital. He’ll likely be here at least another couple weeks. Last weekend was terrifying. I pray we never have to experience anything like it again.

They placed a PICC line the other day while he was under anesthesia for an endoscopy. I have enormous peace of mind that he’s at least getting TPN while we’re figuring out what to do about his stomach. So far that’s his only source of nutrients. We’ve tried adding in his typical feeds through the NG tube but he’s having such a tremendous amount of pain when anything enters his stomach.

His PANDAS specialist stopped by yesterday (pleasant surprise when he lives 3 hrs away). We’re continuing to run some tests but our best guess is this is all just related to the complications that come with PANDAS. The parts of his brain that are inflamed are controlling a lot of things, including pain receptors in the gut. After the progress we saw from his first IVIG infusion, his doctor has a lot of hope that Asher’s next infusion will help him even further.

He’s scheduled to have his next infusion here at @UIchildrens this Thursday March 5th and Friday March 6th while still under care for malnutrition.

[Jill Berglin @JillBerglin]

I have to believe all of this is happening for a reason. He’s been through so many struggles and so much pain. One thing we never question is the level of support pouring in from this community
#AsherStrong #PANDAS