Baby Hulk Syndrome (BHS)

I'm not sure if I've mentioned BHS in any of Abi's previous posts but it is a syndrome her awesome uncle Andrew discovered -It is a syndrome in which what Abi is trying to do is turn into the Hulk - but she's not quite able to transform yet, so what happens instead is she has seizures as a result. Sometimes these seizures make Abigail is very, very mad, like a baby hulk.Other times Abi seems to be mad at other things that are going on with her body - but either way, she is now our little "baby hulk".
She has been very, very angry/irritable since Sunday and  I don't know exactly why (she has not been having any seizures at all), but I can make some conjecture:

1. She has been placed on a feeding tube that goes through her stomach into her intestines (naso-jejunal or NJ tube) that combats/eliminates reflux so she won't aspirate-they did that while she was in her sedation state but have kept it in for other reasons I will explain later. They were going to take it out yesterday because she is ready to eat by mouth but then plans changed. The problem with the NJ tube as opposed to having the feeding tube go into her stomach (naso-gastral or NG) is that she gets the calories she needs, but she doesn't get the feeling of being full. So essentially, Abigail has not "eaten" since 11 o'clock Friday night..she's probably STARVING.

2. Until yesterday, she hasn't pooped since we've brought her here early, early Saturday morning. So for 2.5 days she was holding it all in - very constipated. I can't imagine the feelings of hunger and constipation make for a very good mix of comfort. They started giving her miralax in her feedings - but since she is still feeding through a tube it doesn't go through in one dose like it would through a bottle - so she only gets a little bit at a time - so even the first poops were little sticky 'skid-marks' - so they increased the dose and finally we got some good runny poops. We've decided to increase her miralax dose and split it to twice a day due to the lapse in time with the feeding tube. hopefully CONSTIPATION won't be something she has to worry about for too much longer.

3. The medicine she has been on includes: Phenobarbital, Ativan, Keppra, Phosphenytoin, and methylprednisolone (steroids) - all of which are all known to cause irritably - especially the steroids ("roid-rage") - so she's DOPED UP on anti-epileptic drugs that make her mad.

4. Increased seizure activity, even though she hasn't had any seizures in a few days, the fact that she did have so many days of seizing so frequently would also make her irritable. So her SEIZURE ACTIVITY may also be a culprit.

5. Add on all the other little things going on - every 4 hours they mess with her to take her BP and get her vitals and listen to her heart. And she's had an EEG on since we've been here, essentially, and with that EEG come leeds all over her head, and with those leeds she needs a head wrap, or cap (I call it a turban) to cover those leeds so she won't knock them off - I'd imagine all of those little things on top of already not feeling well aren't a huge culprit, but definitely don't help.

starving, constipation, drugged, seizures, and lots of bugging, I would say, all add up to allow her to be pretty irritable. The neurologist said "she's earned some irritability with all she's been through" - isn't that the truth!

Like I promised above, the reason they didn't take the NJ tube (that's funny for me to write being from NJ (new jersey)) is because yesterday morning they stopped all of her seizure medicines with the exception of Keppra - the reason for this is because they want to catch a few seizures on the EEG to be sure that everything we are seeing are indeed seizures and some of these posturing episodes aren't something else induced by some other neurological stimulation. They just want to be sure that they are not missing something and are giving her the proper medications - i.e. not giving her only seizure medicines if some of these "postures" are from some sort of irritability of the brain instead of a seizure.(she definitely has seizures, they just want to be sure that they are ALL seizures). Because taking her off of her medicine will cause her to have more seizures again, they did not want to move the NJ tube to continue the fight against reflux so she won't aspirate during one of her seizures. (I have mentioned several times that she is home orally feeding while having seizures - but they are just being cautious, and I understand) -- With that being said, I just got word today that they may move the tube back to an NG tube (into the stomach) today! They do have other patients eating "p.o" (latin for by-mouth) and having seizures, and she is usually eating p.o. at home, so they feel comfortable with her ability to be able to eat and be fine. Thank goodness! So now her constipation should be held at bay and she may be able to start feeling full again! It's up to the Peds medical team though (this was the neuro team talking about it), so it's not for sure that we are going to get to be able to give her that satiety..but I am ALL FOR IT!

We are going to be seen by Rehab today because they do feel like some of her irritability is not seizure related and that's where rehab comes in-I told them I have no problem being seen by rehab but I don't want to make any irritability judgments based on her last few days of being her because that is not normal for her. I mean, when she does get irritable this is how she acts, but it's never been this strong and this constant, that I can remember. I told them that I still would like Rehab to come see her, but I would like to hold off any new medications until we determine what are and are not seizures, get her on the proper medicine for that, get her eating and pooping again more normally and then make decisions from there-they agreed that is a good idea.

Even though it's been 24 hours since we've stopped all of her meds they are still in her system (they were very high doses) and we haven't seen any seizures up to this point. We will probably start to see them within the next 24 hours however as the levels of medicine continues to drop.

Neuro also mentioned that her EEG's are looking much better than when she came in (YAY), but still has that AbiNormal 'background noise' (which I expected) - However, her left side still has a stronger A-Symmetry than her right side, so when we get closer to getting her home they want to do another MRI to be sure there isn't anything on the left side that has maybe shown up that wasn't on her other one. They don't believe there will be, but again, they want to be thorough (and I appreciate that). I'm kinda hoping that means that her right side has already kind of "grown-out" of the seizure activity and now we are just waiting on the left side to do the same - IDK if that is even possible, or if it even makes sense. It wasn't something I had even thought about until literally this second as I was typing - but she is expected to grow out of her seizures around 4 or 5 years old and her EEG's before showed A-Symmetry on both sides, and now it's just the left - makes sense to an 'uneducated', hopeful mom! I'll definitely mention it, because now i'm curious!

She's been arching her back again a whole ton more lately - makes sense with all of the discomforts - but they don't love to see that. I asked them why it's so 'bad' that she arches her back and they said, it just shows us that something is bothering her and we want to know what it is. Even when she is calm though she arches her back - I feel like it's more of a learned response than anything else (right now it's definitely a response to discomfort, but normally nothing seems to be wrong but she will still arch) - he said it's possible it's just a learned response, but it could also train her muscles to extend like that in their natural/neutral position. So again, we will look into getting her on something for that - but potentially not until things seem to be back to her baseline.

Peds and Rehab will be back sometime today and will discuss what they find/think with neuro and let me know their recommendations from there-but that's all I have for you guys right now.

Thanks for checking in!

This is AbiNormal!