The Sleep Experiment… night, what?

What night is it? I can’t remember, I’m too tired.

I can’t tell you whether the Sleep Experiment is working. I have no idea. May isn’t sleeping through the night, that’s for sure. The fact that I’m writing this at 4 a.m. is proof enough of that.

May still wakes up three or four times a night. Reasons? Seizures. Thirst. Dirty diaper. Mainly, after wriggling around in her sleep, she wedges herself between the sides of the bed. We readjust her and she falls back asleep.

Waking up three or four times a night is not good. Earlier this week, I was so exhausted that every time I rose from bed, I pitched to the side like I was on a ship. This continued throughout the entire day until I came home from work and slept for three hours. Pregnancy and exhaustion are not easy bedfellows.

On the other hand, I can’t help but feel we are making some progress. May is less distraught when she wakes up and faster back to bed. Tonight is the longest I’ve been up with her since the first night, at over an hour. The difference being, the last time she screamed straight for that hour, whereas this time, she seems more settled, even if she isn’t asleep.

But, the thing is… she isn’t asleep.

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Fevers and Misery Update

No, really, I'm ill.

A typical day over the past few days opens with tears. Lots of fake crocodile tears. May imitates the sound of crying, without even the slightest hint of wetness in her eyes.

May has perfected the skill of manipulation. As in: “Listen to my piercing cries! Don’t I sound like I’m in pain? Pick me up now or I will probably die.”

Then, I pick her up and it is: bounce, bounce, bounce!

A similar situation is happening at night. May didn’t enjoy almost a week of illness and increased seizures. BUT, she did develop a taste for cuddles in Mama and Daddy’s bed.

So, the good news is: she is eating again, the seizures are disappearing again and she is bouncing again. The bad news is: she doesn’t want to sleep in her bed anymore.

In some ways, this is a very good sign for May. She is learning to manipulate her environment. She is taking control of her life – even in this little way – and she is mad, burning mad, when she doesn’t get it.

Anger is a strong motivator. Desire is as well. So, May has learned to simulate the sound of crying without actually crying.

This shows she understands cause and effect in a more substantial way than she has before. If I cry like this, Mama comes running like this.

The only people not reaping the rewards of this new-found skill are her parents. Who are tired. Very very tired.

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Abracadabra! Seizures Be Gone!

For almost two years, May’s entire life, she has been afflicted with seizures. These ranged from her first week with seizures so severe her doctors worried she’d stop breathing, to minor seizures that didn’t affect her health, but did disrupt her concentration. At their peak, these kind of seizures occurred several times every 10 minutes. They numbered in their hundreds each day.

To have a small idea of what this was like for May, imagine trying to concentrate on something you found difficult, but could not stop hiccupping: no physical repercussions, but they would destroy your focus. Then, imagine that they never stopped. Sleeping, eating – even the most pleasurable moments disrupted by those annoying hiccups. Hiccups in your brain.

Doctors tried to control the seizures with various medications. One was a controlled substance – like morphine. Actually, come to think of it, one of them was morphine. It’s amazing how traumatic something is at the time – in this case when May was born and she was put on morphine (and two other powerful sedatives) to control her seizures – and I would forget.

In total May tried ten different medications. One tasted bitter, like licking ground up aspirin. Several made her gag. Some were easily pushed out (especially sprinkles). Some melted into a thick paste as soon as they hit her tongue. One did this and turned a bright, turmeric yellow that stained everything. It didn’t taste so hot either.

Pharmaceutical companies make medicines for adults. If they are for kids, they make them sweet (and sticky – watch out). They don’t make them for babies. They don’t consider that babies can’t drink from cups. They don’t think that a seizure medication might be given to a brain-damaged baby that has difficulty swallowing or digesting. They don’t anticipate you delivering the medication through a bottle so that their powder, instead of dissolving completely, might collect like cement at the bottom of the nipple.

Often, we would be using one brand for months and then pick up our new prescription only to find out it was a new brand that May could not tolerate and we’d be completely screwed. Those were moments of real panic for me.

If there is anyone struggling for any reason to give their child a medication, email me. I know ways doctors don’t even know. I’m your pusherman (or mama).

So, on to the good news! May had her first seizure in a week last night! Seven days seizure free. Incredible.

She is only on three medications now: Topiramate, Sodium Valproate and Lamotrogine (the newest one). Seven days is by far the longest she has ever been seizure free. The relief we feel is enormous. Very hard to describe actually. Suffice to say, it is probably the single greatest triumph not accomplished by May herself.

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Six-Month State of Brain Review

Every six-months, May’s team review her “state of brain” (if you will allow me such a turn of phrase. Actually, this seems pretty minor compared to “half-brained baby” and no one seems to mind that).

It is a developmental review, but “state of brain” sounds so much more accurate. Accurate and ominous. Accurate because they don’t just look at her developmentally, but also review her general health and seizures. Ominous because inevitably someone says something at these reviews that sends me into a minor tizzy for weeks.

We’ve had two other reviews, at six-months and a year. Originally, I thought these reviews were for us, the parents, to learn how May was doing. To be honest, I would find that far more helpful as opposed to what they really are for, which is for the team, to hear how we think May is doing. The positive thing is that having everyone in the room together means that we collaborate on what we need to do next.

Without a doubt, May’s team benefit us. They fight for her funding. They acquire amazing equipment for her. In the coming months – or years – as the government tightens ever further on funding and gives local councils ever more freedom to spend it as they will, we need professionals fighting our corner. That is, if they still have their jobs (see my last post).

But, I am not a saint and I do disagree with the professionals sometimes. During May’s last review, her pediatrician made May’s weight a sticking point. Despite me repeatedly explaining a recent weight loss and May gaining it all back by the time she saw her (within a month), she insisted I see the dietician.

Thus began a vicious “British” argument, which means we didn’t argue but pleasantly disagreed with one another, neither of us backing down. She even called me to discuss it further that evening and I again stressed my “deep reservations” about seeing a dietician – to no avail. She’s made the referral anyway.

I made the following points to her, which she clearly disagreed with, but I still feel are true:

1 – If it wasn’t for May’s brain-damage, we wouldn’t ever have a dietician conversation. If May was a “normal” baby, she would be given a prescription for a supplement to boost her weight. Because she is brain-damaged, it is assumed that her lack of weight is something I need help on (what I will call the ‘Parental Brain Deficiency Syndrome’ when doctors seem to think parents of brain-damaged children are also brain-damaged).

Having said that, she did write in the report that she felt nutritionally May had an adequate diet, but that input into calorie uptake would be useful to the parents. It’s not, but at least I suppose she tried to soften the blow.

2. It is not always necessary to intervene with May’s care. We receive a constant stream of advice from people. We are not allowed to parent on our own. We are not given the room to make mistakes. In this case, if we feel that May’s eating has significantly improved and the pediatrician is unable to look beyond the numbers, who is correct?

I’m a reasonable person. In general, I follow the advice I am given. But, I should be allowed to disagree and make my own choices about how to parent my child over fundamental things like what she eats.

I received the written report for the review yesterday. It contained all kinds of small discrepancies with what I said on the day. The report says she has just begun vocalizing, when she has been doing that for a year. The report says that May doesn’t enjoy bouncing as much as she used to. What?!? Tell my arms that. Finally, the report contains some supplementary advice, I assume given by the dietician of whom I specifically expressed reservations about.

The advice is to change her milk to Aptimal to add calories. Good advice, if it wasn’t for May drinking Aptimal since she was born.

I suppose this may seem petty when compared to the enormous amount of good work May’s team do. And, I’m aware of the irrational streak in me that just wants to tell everyone involved with May to F-off and leave us alone. Or, maybe it is not unreasonable for me to ask that when assumptions are being made about our care of May, the facts should be correct.

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This week I’m… drinking from a cup

This isn’t meant to sound like an argument for the “just stimulate them the best you can/there is nothing you can do differently to help your brain-damaged child” camp.

It is, however, meant to sound like an argument for “if you can find something they enjoy, they will figure out how to do it better/faster” camp.

Of course, no one told me this before I invested in 1,000 sippy cups, only to have my daughter routinely laugh in my face and use them as chew toys.

My daughter’s newest seizure medicine (the one she has been taking for the last few months) tastes of blackcurrant. May loves the taste of blackcurrant.

Before this tasty concoction, every time we poured liquid in May’s mouth, half went out the sides and half, perhaps accidentally, hit the back of her mouth to be swallowed. Within days of the blackcurrant medicine infusion, May learned to sip. Now, two months down the line, she slurps from the cup, just like you or I. Bottle to cup, without any sippy step.

When you enjoy something, you want to do it more. You learn to do it better.

In that way, it seems, brain-damaged babies are no different than the rest of us.

 

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The Seizure Diet

Early after May’s release from the hospital, it became clear that for the doctors, May’s seizures were their biggest concern. Like the rest of her injuries, the cause of her seizures perplexed them. One by one, May trialled numerous seizure medications, seven so far; currently May takes four. The most recent addition, Lamotrigine, May began two weeks ago though, due to its side effects if administered too quickly, it will take three months before she is on the full dose.

We hope, as we always hope, that this one will be the one. That this one, will be the one, and not the four she takes.

Early on, therapists mentioned a ketosis diet that, once May was older, we could try to see if we could get her off these medications completely. What a lovely idea that sounded like.

That was before I read Fred Vogelstein’s article Epilepsy’s Big Fat Miracle in the New York Times Magazine this weekend. Until then, I thought this diet was a typical, healthy diet of the kind you would expect a hospital affiliated with Harvard Medical School to prescribe.

Vogelstein’s son has almost 100 seizures/day. That sounds outlandish, even to me, but then I remember that at one time May had over 800/day. Luckily, May’s medications keep that number down. Before her new medication, she was at to 3 or 4 an hour (that’s almost 100/day). We are in the honeymoon period of her new medication – today we saw four, which is great news, if it continues.

That was exactly the problem with Vogelstein’s son. Despite medication, they did continue, in fact they got worse. So, he took drastic measures, albeit drastic measures backed up by medical science.

As he describes it, his son’s diet is almost 90% fat. “Some might argue that unhealthful food is all we let Sam eat. His breakfast eggs are mixed with heavy cream and served with bacon. A typical lunch is full-fat Greek yogurt mixed with coconut oil. Dinner is hot dogs, bacon, macadamia nuts and cheese. We figure that in an average week, Sam consumes a quart and a third of heavy cream, nearly a stick and a half of butter, 13 teaspoons of coconut oil, 20 slices of bacon and 9 eggs.”

Not only that, but he is strictly forbidden to eat anything outside of the diet. Everything he eats must be weighed. Every recipe made must be eaten in its entirety. There is no room for maneuver.

There is a fine line walked in the name of children’s health. Saving one thing at the sacrifice of another. Clearly, Vogelstein and his son feel it is worth it. If he continues, there is a chance he could come off the diet seizure free in a couple of years.

I’m not sure I could put May through this. Already, we know that she finds eating, not impossible, but definitely difficult. She can’t feed herself and she often tires mid-meal. These variables would work against such a regime.

However, the most profoundly difficult obstacle to surmount, would be my reluctance to refuse to feed her things she enjoys. After all, delicious food is a pleasure she can achieve and I’m not sure that would be a sacrifice worth making.

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Seizures

My daughter has seizures every day. At one point, they were as frequent as three times every five minutes. That is 864 every day.

Did I just write that? May had over 800 seizures a day?

As I mull over those numbers, a nauseating weight grows in my belly.  Yet,  I’m thinking even worse things; like… those were only the ones we saw. Some seizures don’t manifest themselves physically.

It is a horrible thing to say, but May’s seizures were so frequent, that I’d discuss them as casually as the weather. If people stopped to ask if she was shaking from cold or fear, I’d respond, “Oh, no need to worry, it’s only a seizure.” They all looked at me like I was insane. Most asked if they should call for medical assistance. “No, it’s fine,” I’d say. It’s a wonder Social Services never knocked at my door.

I should add that the doctors don’t think the seizures will damage her brain any further. But, seizures that frequent do interrupt activity and, therefore, could be hurting her long-term development.

Fast forward six months. May is now on her sixth medication trial. And, we think it is working.

It has been a very slow process, made slower by the agonizing time-lapse, sometimes weeks, until a drug starts to take effect. Then, an even longer wait as the drugs are slowly built up in the system in order to see if they really work to remove the seizures entirely.

When we started May on Toparimate, it we saw amazing results, but then May regressed and her seizures returned. They never returned to 3x/5 minutes, but we did sometimes hit 3x/10 minutes.

As the Toparimate seemed to help to some degree, we kept her on that and started her on Sodium Valporate. Another nail-biting three weeks of no change, and then one day, we noticed a marked decrease.

During the time she was seizure free, she made all kinds of progress. And, she was just happier. Who wouldn’t be?

But, if May is tired, ill or teething, the seizures return. So, the past couple weeks we’ve experienced days with a couple of seizures in total, and days of two or three/hour, still a vast improvement.

At some point, we will have to weigh the balance of drugging May more and possibly hurting her development as a result, or her enduring some seizures but less medication. This week, we meet with the Boss, who will advise.

(This is a bit sneaky of me actually, as this appointment was made back when we waited three months to see him last time. I “forgot” to cancel it. Some genius thought it was a good idea to schedule an appointment for a child having 18 seizures/hour, five months later.)

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Ups and Downs

I try to focus on the positive aspects of raising May, but hard times are unavoidable. Tomorrow will be tough.

May has an appointment with her SALT and then our key worker is coming over to help me fill out the Disability Living Allowance form. The form will take about four hours to fill out – no exaggeration. The process will entail me projecting May’s needs over the next few years. Will she walk? Will she speak? Will she be able to feed herself? The last time I filled it out, I spent the rest of the afternoon in tears.

Why the government would put a parent through that is beyond me. I could understand if they made a permanently disabled person fill it out again if their circumstances changed, or say, routinely every five years, but every year? It is an absolute disgrace.

If I wasn’t looking forward enough to that, I have the joy of the hospital. May’s seizures have increased. After a week on the pyriodoxal phosphate, her seizures decreased from every few minutes to once an hour. I was thrilled. My husband was thrilled. May, especially, was thrilled.

But, then over the weekend, they returned. They seem to be exacerbated by May’s teething pains. The poor thing. As if teething wasn’t hard enough.

At least she doesn’t have to fill out the DLA. Now that is pulling teeth. (I know – bad joke.)

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Seizures, hospitals and apricot jam

Last week, May was admitted to the hospital for two nights to trial a new seizure medication, pyridoxal-phosphate (or, PP, as I will now call it) to replace pyridoxine. They are both Vitamin B6, just in different forms.

Some babies react badly to PP.  They “forget” to breath. They pass out. They don’t wake up. They require resuscitation.

Just in case, we waited for a bed to become available in the High Dependency Unit, the most critical of rooms in the children’s ward. Unfortunately, while we waited for this bed, her seizures increased dramatically. By the time she was admitted, May was up to three seizures every five minutes.

I should add that, while disturbing to me and distressing to May, none of May’s neurologists thought her seizures were causing her further injury.

Regardless, my frustration and anxiety grew as May’s seizures increased and she still wasn’t admitted. But, once on the ward, I saw there were only eight beds in the whole unit. On one side of us, was a ten-year old boy whose skull was opened in an operation two days previous. (“It was very interesting poking around in your skull!” a chipper doctor said to him.) On the other, was a teenage boy who’d clearly been in some kind of accident. His legs were held together by metal pins, half his hair was shaved off and periodically staff used a suction to clear his throat.

To our relief, once the PP was given, May didn’t have a bad reaction. Actually, she didn’t have a reaction at all – good or bad. The seizures continued. Bouncing also continued unabated. Bouncing – the ultimate barometer of health.

PP has been the most unpleasant to administer of all her drugs. It is powder that doesn’t dissolve in water or milk. We have to give it to her in food. Instantly, PP turns all food bright yellow (try washing that baby drool out of clothes) and rancid. Four times a day we did this. Feeding times lengthened from 30 minutes to almost two hours. PP comes in no other form.

After several days, May’s new SALT received a panicked “May’s not eating because we have to feed her this revolting medicine in food four times a day!” call. After referring to the pharmacist’s guidelines, she advised I pour half the powder on a spoon and cover it with chocolate sauce or jam without mixing it in.

Four spoonfuls of apricot jam – and only five minutes later – the medicine was gone. May was not distressed in the least. Normal service resumed.

We are five days further on in the trial now. May’s seizures are coming once an hour. Every day, for the last three days, they halved. And, good riddance.

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Exam Results

Today, the Boss had two major exam results to report to me. An EEG and a VEP. Neither were all that pleasant.

May’s EEG still shows epileptic activity, which didn’t shock either of us since they have all shown that. What did shock us was when, as I described some of the twitching that concerned me, May actually demonstrated it to him for the first time.

Her arm shook and the small muscles around her eyes spasmed. “That’s it!” the Boss cried. “That’s a seizure!”

If he is right, May has been seizing every day, many many many times a day for as long as I can remember.

Next week, May will be admitted to the hospital to try a variation on the vitamin B6 she currently takes twice a day. The hope is that this new supplement, Pyridoxal-phosphate, will succeed in controlling her seizures where the other medications have failed. She will be admitted because there is a chance she will fall unconscious or stop breathing if her body, in need of B6 all this time and not metabolizing it, suddenly receives it.

The good news, as he explained it, is that she is not having major, catastrophic seizures. She isn’t losing consciousness or ceasing to breathe or losing entire control of her body. It is a momentary disturbance that is unpleasant and worrying, and isn’t helping my already half-brained baby to concentrate.

Next, her Visual Evoked Potential exam results. Again, it was pretty much what we expected. Her eyes are sending signals to her brain. The signals are being received as quickly as they should. But, the signals themselves are weak, meaning at some point along the way or when they arrive, the signals are not understood.

It is possible that in the future May’s sight will improve, but at the moment it is very weak. He agreed to refer her on to a pediatric ophthalmologist who, to be honest, will probably tell me the exact same thing – but hey – it’s worth a shot.

So, any good news Mama? Yes!

May’s head is growing – slower than a normal baby, but at a slightly increased rate for her.  He thought she was very alert and responsive. The tone in her legs was almost nonexistent. Her head and neck more controlled. Her eyes concentrating better (even with the test results).

And, her toes were adorable enough to blow raspberries on. That’s true. He is a sappy, baby loving doctor.

Another plus today was that the most expensive nursery in the world did not make me jump through hoops. They were so lovely, friendly, professional and concerned for May, that I may take out that second mortgage so that May can go there. I was totally won over.

Good thing too. The childminder tells me this weekend if she thinks she can provide proper provision for May. If she says no, there will be no decision. May will be attending the most expensive nursery in the world.

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