For now the Keto is a no-no

Liam had a long slow burn of a seizure tonight. It started slow with a twitch and a full body spasm for only a few seconds every three or four minutes until it clustered about ten minutes after it started. The nasal versed we’ve been trialing to break larger events worked just fine though, and he drifted into his drug induced haze right at his normal bedtime. If he’s going to have a big one, that is just about the perfect time for it. So aside from his normal twitches that’s two for the day today,  this morning’s was much milder.

You may recall that in late July Karin and I elected to admit a healthy Liam into the hospital to transition him onto the ketogenic diet. Hoping that the high fat, no carbohydrate diet and the ketones his body would produce as a result would reduce the quantity and/or severity of his seizures. Within days we were seeing a change. Cranky and miserable while his body fought what instinct told him was starvation, by the end of that first week we saw a few seizure free days and returned home hopeful that this diet really would help Liam reduce the amount of seizures and as such, anti-seizure meds he has always been prescribed.

Just about 14 hours later Karin and I were admitting a very sick Liam into the emergency room for what would end up being a 26 day stay in the intensive care unit to battle septic shock, the ileus (intestinal obstruction) that resulted, a severe increase in seizures, the constant struggles in finding and maintaining IV access including two different central lines being put in (one of them by the surgical team), and the discovery of an enormous blood clot which is the result of the first of those lines. Oh and one other thing but we’ll get to that later.

For the first few weeks of that stay we stayed true to the diet, even when Liam was NPO. instead of the normal D10 or D5 for hydration, Liam’s maintenance fluids were specially made in the pharmacy to give him as little dextrose as possible. His IV meds were specially made because most solutions contain dextrose. The chlorhexidine wipes that hospitals use for sponge baths contain glucose so we went old-fashioned with good old soap and water. Basically, let’s just say that keeping a kid who was sick enough to stay asleep for days and days at a time on  this ketogenic diet was getting a lot more complicated.

While investigating some blood in his stool (I know some of these details are a little  “too much information” but they really do tell the story, ultimately it was another byproduct of the shock and resolved itself eventually) a bright circle appeared on one of his x-rays. A circle that seemed so symmetrical as to appear unnatural it was at first disregarded medically,  The assumption being that it was one of the leads to Liam’s heart monitor or a piece to the in-line suction tube of his circuit. A few days and a few more films later, the diagnosis surprised us all. Gall stones. A ton of them. Little crystals that when his gall bladder was tasked with breaking up such a high fat diet  rose up in revolt and clustered together into a mass to protest.

Freaking gall stones at three and a half.

Now I don’t think I need to explain how severe a gall bladder surgery on any three-year old would be nevermind a child as medically complex as Liam. Lucky for us, the medical consensus was not to do anything. remove the strain on the gall bladder and they should spread out again and not cause Liam any pain I was told. So I asked another doctor, and then another, not believing that finding a gall bladder full of tiny stones wasn’t a more major problem that would require at least some kind of intervention. Come to find out, no one was even all that surprised.

All told, by my very rough estimate, I think Liam has spent about 6 to 8 months of his life on TPN and Lipids, nutrition through an IV instead of his gut. Of course nothing is without its side effects and apparently gall stones is one of them so to find out that they were there was hardly a shock. They were there the whole time. The only reason that we know they are there now is because Karin and I took our healthy little Liam into the hospital to try the ketogenic diet.

A diet.

Adjusting for weight every half-year or so, day in and day out Liam eats the same amount of calories. Pumping through his g-tube exact amounts of protein, fats, and carbs in his formula Liam’s diet for his entire life had been designed to make it as easy as possible for his body to digest. He has grown so big and strong and since we hadn’t had a hospital admission in just about a year Karin and I were convinced that now was the time to try the diet.

Liam is no longer on the ketogenic diet. Until he is strong enough that we consider removing the gall stones (and with them probably the whole gall bladder itself) he will not be able to resume the ketogenic diet. Sepsis and blood clots, staying on seizure meds and giving injections of blood thinners, I feel guilty about trying this diet every single day.

I think I always will.

But even living with the constant guilt, I know that we made the right choice in trying.

We knew what the risks were going in. We were the ones who approached our neurologist to try. Seizures suck enough, the long and short-term side effects of pretty much all meds to control seizures suck just about as bad. To think that there was an option to control seizures and reduce the amount of meds Liam required simply by changing his formula? A case could be made that we would have been negligent in not trying it. Right?

That doesn’t make it hurt any less when I think about everything Liam went through for us to find out. I know he understands. I know he’s a fighter and wants to beat these seizures as much as any of us do. He tells me with his eyes. That doesn’t make me sleep any easier remembering what he had to go through in that intensive care unit. There was no reason that anyone could have predicted the events that transpired from this change. That doesn’t make the thoughts go away that I somehow should have seen it all coming.

*****

The universe works in amazing ways.

Liam’s NICU stay was 153 days long. In a teaching hospital that’s 5 months of residents rotating in and out every 30 days. Among them when Liam was born was Dr. S. just beginning her residency and in her first rotation. About 10 months later she started her rotation into the PICU. At the time Liam was about halfway through a 109 day stay there. The following year Liam was admitted for a virus that attacked his GI and who should arrive to consult when the GI team was called but Dr. S now onto that rotation. During his last few admissions though, Dr. S would just come by to say hi to her buddy Liam whenever she saw his name on the patient list.

Liam has a hematologist now. Cross another specialist off the list. He is now a patient of the hematology clinic at the Tomorrow Fund of Hasbro children’s Hospital. Last week we went in to asses the level of his blood thinner and go over any other concerns of the three to six month course. We weren’t there to meet with the attending of course but the fellow. The fellow, a year-long assignment instead of a month. The end of being in medical school and the beginning of being a doctor. (technically they are “doctors” the whole time but you catch my meaning.)

So it should not surprise anyone at this point when in walks the hematology fellow — Dr. S.

For us and for her it was coming around full circle. Liam had been a part of her entire med school career. She even remarked about it to the attending who popped in towards the end of the appointment.

“Yeah, you’ve been a part of Liam’s team his whole life.” I said.

The attending looked at Dr. S and then back down at Liam and said ” Oh she’s not alone. I’ve looked over his chart. I bet there are a whole lot of doctors out there who this boy has taught something to.”

She’s right. There are. And Liam is an excellent teacher.

The connections that we make with other people mean something. Something important. That is no less true for a person like Liam who can’t make a connection verbally. He can’t sign and for the most part he can hardly smile (with his mouth. Liam smiles with his eyes and anyone who has seen it can tell you that it has the power to change the way you look at the world.) but the connections and bonds that Liam can make above all those obstacles mean something, to him and to us.

During that last hospital stay Karin and I were able to meet a parent whose child had just been trached. We were able to give our experience in how we are able to manage a trach and vent at home. That means something. We were able to meet a doctor we hadn’t yet met and although Liam was not her patient she would visit him and us, and we would talk for long periods about what this life of ours is like. A strong bond of friendship not doctor/patient was quickly formed. That means something.

Any future patients that enter Hasbro Children’s Hospital to try to start the ketogenic diet will be getting an ultrasound of their gall bladders beforehand. Liam did that, and that alone is worth the risk. Maybe the next kid wouldn’t have been as strong as Liam is. He has helped to make sure that other kids don’t need to encounter this problem in the same way. That means something too.

Karin and I brought our healthy boy into the hospital for a week to try the ketogenic diet hoping it would reduce his seizures. A 33 day hospital stay, crazy complications, twice daily injections at home, and we are right back where we started. Only Liam won’t allow me to think that it was all for nothing. It’s his strength that gives me the courage to try whatever we can do to improve his medical needs. Along the way, connections are made that show me how much Liam means to nearly everyone he meets. It’s those connections that I hold on to when I wonder if I made the right move. If it was worth the risk.

It hurts like hell, but I still think that is was.

5 responses to “For now the Keto is a no-no

  1. Of COURSE you had to try the keto diet — I can’t imagine how you would go on with a seizing boy without trying it. I think the interesting thing about the keto diet is that when it works, it really works but when it doesn’t, it’s as hideous as any drug. I can honestly tell you that I look on our two trials of it as some of the darkest days in seventeen years — while it improved Sophie’s seizures, the side effects were hideous and psychologically for me, it was obliterating. I think it’s a mistake to say it’s not a drug, actually — because it IS changing the body’s metabolism. In any case, the fact that you’ve found something positive about this whole experience is a beautiful thing. Thank you for sharing that, for your generosity of spirit –

  2. I agree with Elizabeth. Of course you had to try, you had to. For your sake and for Liam’s, you guys needed to know if it was going to work. You are doing everything you possibly can for your son, and not every measure is going to be a great success. I see Liam’s strength in his pictures and your words, but I hope you both see your own strength and courage as well.

  3. Sorry for sweet Liam. And for you and Karin as well. Hurts us on levels and to depths of our hearts, that only certain people could ever understand.

    I was on the phone this last weekend with a dad who’s little guy was having seizures. Talked about Infantile spasms, at video EEG’s and meds. and such and as much as I hated it, I was glad that through the journey with Zoey, I was able once again to maybe help someone along the way. I guessed I helped. Anyway, I try to spin her crap hand that she landed with the gifts. Somedays it balances it out.

    Did a post the other day that had a little blip about a kind man that saw in my child, what I hoped the outside world would see more of. A connection, and the lasting effect she has had on people whom I may never, ever see again, it’s a beautiful thing.

    Best to you and your precious little crew.

  4. Eric, rest assured you did the proper thing, you did your homework before trying somethingthat hopefully be benificial for Liam, you cannot predict side affects, keep up the great parenting…………..

  5. I am so sorry it’s not worked out for Liam but at least you guys gave it a shot. We are wrestling with the diet at the moment and our issue is with Samuel’s weight loss. If he fails to gain weight we are coming off. If that happens then so be it, but I’m pleased we tried. Although I fear that if we do come off it then we will never see Samuel have a seizure free day. The diet gave us a few of those which as you know with his extreme epilepsy it’s almost a miracle.

    I can handle Samuel being profoundly disabled, only like a little baby, but its the seizures that kick me in the gut & the heart everytime. That’s why we had to try the diet, like you. Seizures suck more than many people can understand.

    Love as always to your wonderful family. x

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