Websites and Resources

When you have a sick child, it is vitally important to do two things: 1.) Educate yourself, and 2.) Find support.
Read as much as you can about the diagnosis, the treatment, the prognosis--but make sure you are utilizing reputable sources. Going onto message boards and reading people's personal experiences can be both useful and damaging. It's good to hear first-hand accounts of what it's like to have a child with Infantile Spasms, but many children have IS because of other very severe problems (such as brain injury or Down Syndrome), which may or may not be relevant to your own child. In these cases, the prognosis is likely to be worst-case. Getting your hopes up by reading only positive-outcome stories can be dangerous, too. It's best to maintain a well-rounded idea of what's possible and what's probable by reading not only personal experiences, but also professional websites, such as the Epilepsy Foundation, or the Infantile Spasms Project.
Support is imperative. Your family and friends can offer you a lot of great, loving support, but they will likely never fully understand what you're going through as a parent (unless they are very close to you and your child, or have been through something similar). You definitely need the support of loved ones, but you also need to be in touch with services that can benefit you and your child, and other parents who have experienced what you're going through. Many organizations have a community section on their website where you can get communicate with other parents of children with Infantile Spasms. This is also another example of how reading other parents' personal experience (blogs and message boards) can be beneficial, but again, keep in mind that every child and situation is unique, which means every outcome varies greatly).
Here I've compiled some of the best resources for education and support that I have come across so far (please feel free to link to more in the comments!):

Resources for Infantile Spasms

The Epilepsy Foundation

http://www.epilepsy.com/

The Child Neurology Foundation

http://www.childneurologyfoundation.org/

The Infantile Spasms Project

This resource has great information about what the disease entails. On this website you'll find videos of other children experiencing spasms, which is what really helped us to know that J.'s strange little jerks were not to be ignored.

http://infantilespasmsproject.org/

The Infantile Spasms Community

Connect with other parents enduring the same diagnosis.

http://www.infantilespasms.com/forum/

Early Intervention Program (NY)

Information about Early Intervention for New York residents. (EI is free in New York!)

https://www.health.ny.gov/community/infants_children/early_intervention/

Center for Parent Information and Resources

Learn about Early Intervention, who qualifies, what services entail and how to find Early Intervention services in your area.

http://www.parentcenterhub.org/repository/ei-overview/

http://www.parentcenterhub.org/repository/services-ei/

Other Infantile Spasms blogs

Read about other firsthand experiences.

http://bradleyboyandhisfight.blogspot.com/

http://spazfamily.blogspot.com/p/infantile-spasms.html

http://thatdadblog.com/infantile-spasms/

http://www.everydayfamily.com/blog/understanding-infantile-spasms-lucis-story/

Resources for Cerebral Visual Impairment

The Cerebral Visual Impairment Society

http://www.cvisociety.org.uk/

Little Bear Sees

This blog has great tips on activities to do with CVI children, and how to help their brains learn to see.

http://littlebearsees.org/what-is-cvi/

Blind Children's Resource Center

http://www.blindchildren.org/

National Association of Parents of Children with Visual Impairments

http://www.lighthouseguild.org/programs-services/education/napvi/

American Council of the Blind

http://acb.org/

Smart Toys
Read about toys that can benefit the development of a visually impaired child.
http://www.smart-toys.info/single-post/2016/06/01/Tips-for-helping-partially-sighted-infants-see

1 Month Post Diagnosis

A diagnosis of this magnitude creates a rift in your timeline, splitting your life into Pre-Diagnosis and Post-Diagnosis.

Pre-Diagnosis we were very anxious about J.’s health, all of the time. We knew something was up, but couldn’t put a finger on it.

Post-Diagnosis, life is, if you can believe it, in some ways easier. Would we pay a million dollars to have this all be a bad dream? Of course we would, in a heartbeat! But that’s not an option, obviously, and at least we have answers, now. We have a plan, we have medication, we have therapy.

Right now we’re actually in intermission. Another diagnosis--another landmark event--is coming. I don’t know what that will bring, but right now we are doing okay and that gives me confidence that we’ll really be okay no matter what.

It’s been one month to the day since J. was diagnosed with Infantile Spasms. She’s 7 months old now and doing great, so far.

When J. was in the hospital I was really torn about going home. On the one hand, I was tired of living in the noisy hospital. It was hard to sleep because the bed was uncomfortable, and we were sharing a room, and we surrounded by other sick children which was so heart wrenching. And J. was constantly being poked and prodded and woken up.

On the other hand, though, I didn’t want to bring J. home. As long as we were in the hospital our real lives were on pause, which made her illness feel temporary. I didn’t want to take her home and have her be my sick baby.

It turns out, I don’t think of her that way, maybe because she’s doing so well outwardly she doesn’t seem sick at all. The first week home she learned to roll to one side onto her belly. By the end of the third week she was holding her own bottle and she cut her third tooth. She talks a lot and she smiles a lot. She’s really close to sitting up on her own. She’s now been seizure-free for almost 4 weeks! She is such a trooper and I am so grateful for that.

Watching a baby go through what J. has been through (the vEEG’s, anesthesia for the MRI, the blood draws, the shots, the glucose tests--the list goes on!), it’s painful for us, but J. hardly ever complains. By the end, she didn’t even cry when we gave her the ACTH injections! I’m in awe of her strength and it only makes me want to be stronger, too.

It has changed me as a mother. My sister told me once that we become the mothers our children need us to be, and that’s absolutely true. I feel sad, sometimes, for J. (and of course also for us), but I have so much love for her. Even more than before, I think. And so much patience. I want to do everything I possibly can for her. I’m 100% dedicated to giving her every opportunity any normal, milestone-hitting, fully-sighted child would have.

Her dad and I, we have our good days and our bad days, of course. I think (though I can’t really speak for him) hearing the diagnosis was harder for T., whereas I’m having trouble dealing with being home with J. and seeing her affected by her condition and her medications.

We are both more or less accepting of it now. We’re focused on what we have to do to support our daughter. I try not to think too far ahead. Infantile Spasms is a tricky thing in particular because you don’t know what the prognosis is until the child is older. We have no way of predicting what kinds of delays or challenges J. will have in the future. Living with Infantile Spasms is like standing in a thick fog. You can only see an arm’s length ahead, so thinking of what lies beyond is too overwhelming. This has been a tough point for me. I’m a planner who hates surprises. Now, though, I have to live in the moment. I deal with what’s immediately in front of me and leave the future for the future.

Right now, what’s immediately in front of me is not all terrible. J. can’t be in daycare, so we get to spend more time with her which is wonderful, especially now that she’s awake more than ever and so happy all the time. We are finally getting to see her catch up with her milestones, and we are eligible for great services that will provide her with great therapists. And we are just so proud of her. She is amazing and so, so special.

It’s easy to think that you couldn’t deal with something like this if you’ve never had to, but once you have no choice it just becomes what you do.

The Follow-up vEEG

Earlier this week was J.’s second vEEG (video electroencephalograph). We were placed in the PICU overnight and she was hooked up to all the wires all over again (I was bummed we didn’t get to stay in the same wing of the hospital--we really miss our nurses!). The hope was that there would be no sign of hypsarrhythmia.

Hypsarrhythmia is pretty unique to Infantile Spasms, though it can occur in a few other conditions. It is perhaps the most important key to diagnosing Infantile Spasms, as the spasms themselves can be hard to detect. If you think your child is having spasms, consult with your pediatrician immediately about whether an EEG should be ordered. When J. was hooked up to the EEG the first time, her hypsarrhythmia was immediately apparent. Even if we’d never seen an EEG before (which we had in our research) it would have been obvious that hers was a mess. Hypsarrhythmia can be described as “chaotic brain waves,” and they absolutely look chaotic. The Acthar website shows you the difference between a normal pediatric EEG and an EEG of a child with hypsarrhythmia.

Leading up to this appointment, I was sick with nerves. Our first week home with J. (her second week on the ACTH) was amazing. She tried to roll over for the first time ever and in just a couple of days she was able to roll to the right from back to belly. She was so happy, and smiley, and babbling non-stop. She was a completely different baby. It was crystal clear she felt a million times better and we were thrilled. She didn’t even cry when we gave her the ACTH injections.

After that week, however, as time progressed, she seemed to be doing a little less amazing. A zillion times better than pre-diagnosis . . . but she gained some more weight and kind of stopped rolling over, and wasn’t holding her head up as reliably. She wasn’t babbling as much. She wasn’t smiling as much.

On the other hand, she was gaining ground on sitting up by herself (still not quite there) and she has learned how to hold her own bottle by herself, which she only started trying to do since we brought her home.

Despite the progress, I was really concerned that the treatment wasn’t working. I had really noticed a difference in her behavior when we tapered her dose from everyday to every other day, and then to half a dose (.2 mL) every other day. I thought maybe the taper schedule was too dramatic. It's difficult to know when you're seeing something concerning, though, versus when you're just hyper aware of everything your child is or is not doing.

I should add here that some of the side effects of the ACTH that we were told to expect were finally starting show. As I mentioned before, J. has put on some weight (just a little, and since she’s such a good gainer it’s hard to say if she would have anyway), she is having a LOT of trouble sleeping--some days she only takes two 30 minute naps around 10am and 4pm, then goes to bed around 9pm and sleeps only until 5am or 6am. J. was always an excellent sleeper before, so this is really terrible for her and it’s obvious she’s tired. Plus, another side effect we hadn’t really seen is grouchiness. Pre-diagnosis J. was in a bad mood or asleep about 22 or 23 hours of the day (not an exaggeration). So if she is irritable now, and she can be, it doesn’t phase us. She’s still 400% better than before, so it seems like nothing, but if she’s in a bad mood because of the meds, that could explain why she’s not doing certain things. She may not have the patience to try.

So, anyway, back to the vEEG. I had planned on not looking at the vEEG at all, being that I was so nervous about it. Our first stay in the hospital, the screen was right there between her crib and the couch, so it was impossible not to look at it. It’s bright, white glow pried at our eyes at all hours of the day. Naturally, when I realized that the screen this time was on the back of a column of power outlets, I thought I’d won the lottery.

But the tech who came to attach J.’s leads needed my help finding a good position for the crib in relation to the camera, so she asked me to watch the screen. I couldn’t help but glance at the EEG, too. I had already steeled myself to defend against the debilitating disappointment that threatened when I saw exactly what I’d expected which was, while J.’s EEG looked inarguably much better, it was still nowhere near normal. At least, that’s what I thought. All I could do at that point was tell myself: “You are not an EEG tech, nor are you a neurologist, so you basically have no idea what you’re looking at.”

Which is true. Still, I braced for bad news from the neuro team when they visited the next morning. Imagine my surprise when our previously very grave epileptologist offered us the first smile of hers we’d ever seen. She said that J.’s scan looked great and that she had no spasms overnight (though she did have an episode of eye-rubbing that corresponded with spikes).

We’ve grown accustomed to receiving bad news and good news is now foreign to us. I pressed her. I asked about the spikes, and pointed out that maybe she’s not having spasms, but her EEG isn’t "normal." And what about all the regressions?

The neurologist said that if “normal” is 100%, then J. is at 90%. J.’s regressions are likely a side effect of the ACTH and she’d be concerned only if that pattern continued after the ACTH injections stopped.

Wow. 90 percent. 90% normal.

She also said (after I asked) that, yes, this kind of response to the medication after only 4 weeks is a very good sign.

Finally, a little luck.

You may be picturing us jumping up and down and celebrating. I doubt we even smiled. T. and I are “cautiously encouraged.” We don’t dare get too excited. We still don’t know what is causing J.’s Infantile Spasms and while they are now controlled (at least for the time being), another diagnosis is looming and we have no way of knowing how severe it will be. So far, J. has beat the odds and that excites us--don’t get me wrong--but the higher you get, the further to fall. We’ll celebrate after we have all the facts, if it’s appropriate to do so.

The neuro team told us that they feel they are close to uncovering the cause of J.’s IS which is both good and not good. No discernible cause would be better (cryptogenic IS), of course, though unsatisfying. A diagnosis will be more satisfying, but could go either way as far as being good news or bad news. They believe it’s metabolic, based on some abnormal levels of something-or-others (they weren’t that specific because they want to have concrete information to give us). One thing we know, is that J.’s carnitine levels are low. I made the mistake of Googling metabolic disorders that are associated with that, but after reading some terrifying stuff, I have decided to wait for the blood test results to come back before conducting more research.

So, today is J.’s last dose of ACTH. Hooray! Starting tomorrow, she’ll be on Topamax until she’s 8-10 months old, to keep her seizure free. Topamax has it’s own slew of terrible possible side effects but most of them are relatively uncommon. I’ll write more about Topomax in a later post.

Next time I’ll talk a little more about how J. (and T. and I) are doing 1 month post-diagnosis.

In the meantime, as always, if you have questions please e-mail me, or leave a comment!

Treatment for Infantile Spasms

When Baby J. was diagnosed with Infantile Spasms a few weeks ago, the doctors were adamant that treatment begin immediately. We knew a little about the drug ACTH because we had read about it before even bringing J. to the hospital, but we didn’t know much about the supporting drugs she would need to be on, as well.

I hated that we had to start her on treatment so quickly because I didn’t have time to research our options, or the side effects of the drugs. I still haven’t really researched alternative treatments, mostly because I’m afraid that I’ll find something that indicates we should never have given such a powerful steroid to our daughter because there are less dangerous treatment options out there. We’re already halfway through her course of ACTH, so why make ourselves feel bad about it, now?

On the other hand, however, I believe in trusting your doctors (until you have a real reason not to) and so far J. has done very well on her medications and they seem to be working (our next EEG will tell us how well).

So far, J. has been placed on four different medications and is also undergoing therapy for her delays. This is what our schedule for the last two weeks has looked like:

7/15	Admitted to the hospital; EEG	7/30	E.I. Physical Therapist assessment
7/16	Diagnosed with IS; began meds	8/1	Follow-up with the pediatrician
7/18	Removed EEG leads; MRI	8/2	E.I. Vision Therapist assessment
7/22	Meds arrived; discharged	8/3	E.I. Developmental Specialist assessment
7/23	Visiting Nurse (introduction)	8/4	Visiting Nurse (weight, blood sugar, BP)
7/26	Early Intervention assessment	8/4	E.I. Occupational Therapist assessment
7/27	Visiting Nurse (weight, blood sugar, BP)	8/8	E.I. Speech/Feeding Specialist assessment

As you can see, post-diagnosis is a very busy time. It’s good, though. Each appointment gives us something to look forward to and it makes us feel better to have all of these professionals checking in on J.

The two branches of treatment J. is receiving at this time are medication and therapy.

I mentioned above that J. is currently on 4 different medications. They are: ACTH (Acthar), leucovorin (folinic acid), B-6, and ranitidine (Zantac).

ACTH

The worst, by far, is the ACTH. The other three drugs are prescribed to support a baby’s health while they are on ACTH. (The Wikipedia page is very informational.)

ACTH stands for Adrenocorticotropic hormone. It’s a corticosteroid this is used to treat, in addition to Infantile Spasms, pituitary disorders, Addison’s, Cushing’s, and some kinds of cancer.

The side effects can be severe. The top three things to be careful of are high blood pressure, high blood sugar levels, and infection. Our visiting nurse comes twice a week (unless we are seeing a doctor) to monitor J.’s blood pressure and blood sugar.

ACTH suppresses the immune system is why infection is major concern. It’s easily the scariest side effect, in my opinion. We decided (and our neurologist agreed it was wise) to pull J. out of daycare for the duration of her treatment. We haven’t decided yet if we’ll put her back in when she is done with the ACTH, but we felt that it was important to keep her away from other children. Especially because she also cannot receive her vaccinations until her treatment is over. Since she was diagnosed just after she turned 6 months, the last series of vaccines she received were her 4 month shots, so, now 7 months, she is quite behind.

ACTH is also very difficult to get. As we were told, ACTH is made by one company and distributed by one pharmacy in this country. We ended up having to have it overnighted to our house, and were then required to bring it in to the hospital before we could be discharged. The whole process took about five days. If you are unfortunate enough to not have insurance at the time your child needs this medication, be sure to inquire about special programs the manufacturer may have to help you receive the drug for free. ACTH is prohibitively expensive without the help of insurance (we’re talking in the range of $30k-$50k per vial--we were prescribed 2 vials). We were also told that insurance companies will sometimes refuse to cover ACTH due to exorbitant cost, but those situations are rare. We haven’t received our bill yet, but our prescription was covered. Most insurances will comply because ACTH is virtually the only drug used to treat Infantile Spasms (unless the underlying cause is discovered, for instance, if your child has Tuberous Sclerosis, vigabatrin (Sabril) may be used, instead).

Prepare yourself for learning how to administer ACTH to your child at home, it’s given by injection. Your nurses will teach you to give the shot and when you receive the drug, you’ll also receive syringes, needles and sharps container. Ask your nurse to find out what to do with the sharps container once it’s full.

We are on a taper schedule with ACTH. The first week we were giving her 32 units (.4ml) twice daily. The second week was 32 units once daily, third week 32 units once every other day and fourth week is 16 units (.2ml) every other day. We will be on the fourth week when we return for the second EEG, so we are hopeful that J. can come off the ACTH after that week, but they told us that she may be on it for 6-12 weeks.

Leucovorin

When you Google leucovorin, don’t panic when you see it listed as a drug used to support patients going through chemotherapy. During ACTH treatment, leucovorin is used to protect intestinal tract from a GI bleed.

This comes in pill form, which we crush up with the B-6, mix with pureed prunes and spoon feed.

Leucovorin is 30mg once a day.

B-6

B-6 is prescribed for Infantile Spasms because, in some cases, seizures can be caused by a B-6 deficiency. Our doctors told us that sometimes they will administer B-6 first to see if it has an ameliorating effect on the spasms before going to ACTH, but in our case, they prescribed it to J. in addition to the other drugs.

This is also in pill form, which we give by crushing and adding to prunes.

In the hospital we tried mixing both the Leucovorin and the B-6 with apple juice and giving that by syringe (it would clog a bottle nipple) but J. really hates being force-fed with a syringe, and sometimes that would get clogged, too. We’ve had far better luck giving it to her mixed with prunes, which she already loves, and I add just a touch of pure maple syrup to cut any bitterness from the pills.

B-6 is 300mg once a day.

Ranitidine

Ranitidine (Zantac) is a drug used to treat reflux. This is also to protect J.’s digestive tract. GI bleed is another side effect of the ACTH to look out for, but the leucovorin and ranitidine are employed to combat that risk.

It comes in a minty syrup which we administer with a syringe.

Ranitidine is 3ml once a day.

Therapy

J’s therapy has not yet started. A diagnosis of Infantile Spasms makes J. automatically eligible for Early Intervention services in New York, but she is currently being evaluated for which kinds of therapy she’ll need. This whole process (unfortunately) takes upwards of 30 days. Then we’ll be able to review the report the therapists have written, and approve it, or ask for a second assessment. Once the report is submitted, we’ll have a meeting with our EI coordinator who will go over the whole thing with us.

Once J. is assigned therapists and seeing them regularly, I’ll post more about this part of treatment.

How we knew

At this point you may be wondering how we could have known that J. had Infantile Spasms to begin with? As I mentioned in my previous post, though heartbroken, we were not surprised by her diagnosis. That story really begins when J. was one month old.

J. was born by C-section at 39 weeks and 1 day. She was 7 lbs 15 oz. A beautiful, healthy baby girl. Her birth was uneventful. She had difficulty nursing due to a tongue tie we opted out of correcting. Because of this, she was half breast fed and half formula fed until 5 months. In the hospital, she lost some weight initially. Some of the nurses were concerned and some weren’t. My C-section was bumped twice by emergency Cs, so instead of going in at 8:00am we went at 12:30pm. All the while we waited, I was receiving intravenous fluids for hydration. One nurse theorized that J.’s birthweight was inflated because of the extra fluids and that most of what she shed (13 oz in the hospital) was due to this. We agreed, that made sense to us. Still, she was jaundiced as well, so they had us supplement with formula. Once her weight came back up, I laid off the formula for a while, but succumbing to the pressures of exclusively pumping, we incorporated it back into our feeding routine at about 3 weeks.

After all of that, J.’s weight gain really took off. She’s always been a great eater, a good sleeper, and she gains steadily. She’s now somewhere between the 97th and 100th percentile for weight, and pretty high on the height scale, too. I was a heavy baby and am now thin and average height. Dad was a heavy baby and is now thin, but also 6’4”, so it’s really no wonder where Baby J.s’ size comes from.

Her first month of life was magical. I felt energized, happy. She was a calm, relaxed baby. Loved to snuggle. Never cried, unless she was hungry. We had to set alarms to wake us up, to wake her up for feedings because she would sleep for hours.

Around 6 weeks though, things began to fall apart. J. became very colicky. She cried for hours every evening and was fussy all day (that is, when she wasn’t sleeping, which she did a lot). This went on and we took solace in the notion that colic usually ends around 4 months.

At around 2 months, I started worrying about her eyesight. She never gazed at us as other babies would do. I had a friend whose son was two weeks older than J. We would go for walks in the park and he would be so distracted by his surroundings that he couldn’t concentrate on eating. By contrast, J. would stare downward, blankly. Not at me, or at the trees, just at nothing. I tried to discuss this with others--I posted on mom boards and brought it up to my partner and my friends and family--but everyone agreed it was too early to worry.

At 13 weeks she started daycare two days a week. She would be screaming every time I picked her up and it would last until she went to bed. It got to the point where the daycare teachers would meet me at the door with her and her things to get her out as quickly as possible. They were always polite about it, but the reports were usually that she’d been fussy all day.

The 4 month mark came and went and there was no change. She was still grouchy and still not making eye contact, or tracking her toys.

We took her to a pediatric ophthalmologist and that’s when the possibility of ONH was first presented to us. We were beyond devastated. On top of that, the doctor really wanted J. to have an MRI for which she would need to be put under general anesthesia. The MRI was scheduled for June 16th and J. would be only 5 months old. We panicked, briefly, and then I went into planning mode. I gathered as much information about what ONH was and what resources we would require and then I scheduled a second opinion.

That doctor asked me not to disclose was the first doctor had suggested was wrong with J. before he had a chance to assess her. Ultimately, he decided that J.’s optic nerves looked normal to him. We cancelled the MRI.

A second visit to the first ophthalmologist 2 months later produced the same conclusion. He even told us that he felt sure that J. had Delayed Visual Maturation and that her vision would soon begin to improve.

That was two days before we were admitted to the hospital.

While all of this was happening, J.’s mood had improved some. For a couple of weeks after she hit the 5 month mark she was a whole new kid. A week or two before we were admitted, however, things had begun to regress. She was becoming irritable again, she was smiling much less (at most, one smile a day) and babbling much less. She wasn’t standing up as well. She was slumping over, having trouble holding up her head. She was sleeping a lot.

Wednesday evening, after the last ophtho visit, while sitting in our living room we noticed something strange. My partner was holding J. in a sitting position on the floor and all of a sudden she shrugged her shoulders and pushed backward. We definitely noticed it and thought it was weird--we’d never seen her do something like that before--but it was just once or twice so we sort of ignored it. .

The next evening we were lying in bed with her, again my partner was holding her in a sitting position, this time on his lap and she did the same motion again. She did it a couple of times and then stopped, but this time I noticed she was pointing her toes and I knew that couldn’t be good. It wasn’t normal. I Googled “muscle spasms in babies” and the first several results were for Infantile Spasms. I read about it, but the descriptions of the spasms there didn’t sound exactly like what J. was doing. Also, it’s very rare. I didn’t even tell T. what I had read. I decided just to wait and see if the movements ceased.

The next morning, while at work, I received a text from T. asking what I had read about J.’s strange ticks. I told him that I’d read they could be seizures. He said she’d had another bout of them but this time she’d become really upset and cried. I lost all focus. I hardly did any work that day. I spent all day reading about IS and watching videos of children doing exactly the same thing J. had been doing. How I managed to keep it together until the end of my shift, I’ll never know. T. took her to the pediatrician and when I got home he told me we were going to the hospital. We packed up and left, completely unaware of just how drastically our lives were about to change.

In hindsight, all of J.’s abnormal behaviors--which we had attributed to different afflictions--can be traced back to her IS. J.’s vision therapist now believes that J. has cerebral visual impairment (CVI), a fairly common side effect of seizure disorders. Children with IS are often misdiagnosed with colic, and looking back, J. had other bizarre tics that very well could have been seizures (staring blankly for seconds at a time, head bobbing (which can also be attributed to her blindness), bowing the head and bring the hands up in a prayer-like position). Of course, I wish we would’ve known then that these were something to be concerned about, but there is no way we could have known. Our neuro team praised us for noticing her spasms as early as we did. They told us that she received the earliest possible diagnosis.

The most frustrating part is that I have always known there was something off about J. but I could not put my finger on the issue. It seemed so unlikely to me that J. happened to have vision problems, poor head control and colic and they weren’t related (plus she has always napped a lot, she had a chronic cough and was constantly--I mean constantly--rubbing her eyes). I knew that she wasn’t behaving like a normal baby and I hate that I was always told I was just experiencing normal new-mom anxiety. I was anxious. Very, in fact, I was constantly having terrible visions in my head of things happening to J., of her getting hurt, and I was constantly checking on her to make sure she was breathing. I was barely functional. Ever since she was diagnosed, however, that anxiety has abated quite a bit. One would think I’d be more nervous now that I have empirical evidence that there is something wrong with my child but I have always known there was, and now I know what it is so I can work with that. I still have my days, but it’s much better.

As a mother who has been there, my advice to you, if you are following our journey because you’re worried about your own child, is say something. Even if you can’t explain why your child does not seem right to you, trust your instinct. I wish I had. If nothing else, you will be able to say that you tried and maybe the doctor will put your mind at ease.