IS and us: Infantile Spasms and the Worst 8 Weeks of our Lives

Mr Boo and public holidays don’t get on. All my plans for Easter 2012, a last and long holiday with Sissyboo before her little brother was supposed to arrive 2 and a half months later, was totally upskittled by his surprise entrance on the Monday before. Easter Sunday, as he lay lifeless quietly fighting meningitis and sepsis, was one of the most gruelling days I hope we’ll ever have to get through.

So we had high hopes for Christmas. We were all together, after all, and we were going to my parents’, so I could relax. We were going to make it up to Sissyboo.

And then Mr Boo started hiccuping on Christmas Eve while I was breastfeeding him after he had woken up from a nap. It was kind of funny and cute feeling the pulsing of his pleasantly chubby tummy against mine.

In the wee small hours of Christmas morning when he woke up for a feed it wasn’t cute any more. He wasn’t hiccuping, I realised. He was flinching to one side in an upwards movement from his belly to the crown of his head, which then turned to the left slightly. It was happening in clusters. These weren’t violent movements and he smiled throughout. But it was wrong. I knew it was wrong.

I woke up The Grumposaur. He was a little worried but since the movements stopped as quickly as they started he looked on the bright side. ‘It’s probably nothing,’ he said. I said I thought it was a seizure. He said it didn’t look like one. He was right: it didn’t. It was probably Mr Boo just doing one of his weird old Mr Boo things. (He has a lot of those.) We would wait and see.

We tried to make Christmas Day as fun for everyone, especially Sissyboo, as we could, but inside I was screaming in agony. I knew this wasn’t OK. In fact, I was terrified. You see, I thought I knew what it was, infantile spasms, and told my sister and The Grumposaur. We watched videos of children fitting with the spasms on YouTube. I know that sounds weird, but we were desperate. What Mr Boo was doing didn’t look like the videos we saw, but I knew. I knew this was what it was. Don’t ask me how. I don’t exactly know. My family didn’t believe me; correction: they didn’t want to believe me. And I didn’t want to ruin anyone’s Christmas with my unwarranted anxiety. We were having a big family party on Boxing Day for family members to meet Mr Boo for the first time. I didn’t want to spoil the fun.

But I couldn’t bear it. Just before the party was supposed to start, I phoned NHS Direct hoping they would tell me to go to A and E so the decision would be taken out of my hands. They did and it was. As my relatives pulled up to my parents’ house, I drove off, to Birmingham Children’s Hospital armed with a video on my phone of the hiccups-that-weren’t-hiccups as evidence.

Mr Boo and I were taken to a tiny examination room and he was thoroughly looked over by registrar. She was kind and listened to Mr Boo’s medical history with sympathy and concern.  In the 8 months since having Mr Boo I’d got the recital of clinical facts down to a fine art. I sounded knowledgable as I rattled off acronyms. And words like periventricular leucomalacia (brain damage) positively tripped off my tongue. I sounded together and on top of things. Inside I was on my knees, sobbing incessantly and begging medical staff and any god who’d listen to me to help him, to make it all all right. Then when the SATS monitor came out I lost it. I think I may have had (corection: still have) PTSD. Cerrtain triggers do prompt intense memories and visceral reactions. Seeing the little grey box that twice occasioned me to have to administer oxygen out of the wall to my baby floored me.

The registrar attempted to calm me down. Infantile spasms are very rare so it was very unlikely Mr Boo had them, she explained. Moreover the video I showed her didn’t look like a typical presentation of the fits, which often cause a child to jolt forward from the waist, head and arms coming forward in a grotesque prayer position, or can take the appearance of an exaggerated moro or startle reflex as arms and legs stiffen and thrust backwards.

Mr Boo had never entirely lost his startle reflex (he still has it a bit), which is not uncommon in children with CP. Even now, every few months and usually when he is in acute pain (teething or ear infection) you can’t lie him on his back without him startling and going bug-eyed. It used to worry me, but he does it much less frequently now. But when he first did it, aged about 5 months, I frantically Googled symptoms and kept coming across sites about infantile spasms. I read about this condition with a combination of horror at this devastating condition and relief that Mr Boo didn’t have it. I knew his startling  was different. It was positional and you could snap him out of it. But what started on Christmas Eve was terrifyingly similar to what I’d read about a couple of months before. OK, Mr Boo’s jerks were not typical of the movements described on these websites, but, crucially, they only happened in small clusters after being asleep. And this was too much of a coincidence. Clusters of seizues in children suffering from infantile spasms most commonly occur as the child is falling asleep or waking.

The registrar thought we could go home, but wanted her senior colleague to see us first. When he came in the examination started from scratch and the requirement to recite the entire medical history reared its ugly little head again. It always does. My record is having to go through it all all 6 times in one evening trip to A and E for croup. I just couldn’t go through it all  again that day, so I tearfully handed over the wadge of paediatrician letters I keep with Mr Boo’s red book in his change bag. Once a NICU mum … After telling me how impressed he was with my preparedness, he said that he also thought Mr Boo was probably OK but then asked to watch the video I’d taken. He wasn’t sure what was happening, but he was clearly concerned. We were admitted to hospital. Sorry Sissyboo!

Being out of area served us well, just as it had done when Mr Boo was born prematurely and unexpectedly 65 miles from home. That had taken us to a level 3 NICU that could take babies as premature as he was and cope with the health needs that emerged. Now, again desperately in need of specialist help, we found ourselves in a dedicated children’s hospital with a renowned paediatric neurology team. They met with me quickly and reassured me. The video didn’t look like typical IS, we were told again, but they wanted an EEG. We had one within 12 hours. Goodness knows how long it would have taken to get one in our hospital where they don’t have these tertiary services.

I breastfed Mr Boo through the EEG so he would sleep and the results would be as clear as possible. The lovely woman who did the EEG chatted warmly and kindly to me, but she couldn’t quite hide what she was seeing on the monitor we were on the other side of. I had to wait for a neurologist officially to interpret the results a little later that day, but I knew what to expect from the expression on her face. Even so, when a consultant came in later that afternoon to tell me they had found hyppsarythmia (the chaotic brainwaves that diagnose this horrible condition) on one side of Mr Boo’s brain (the opposite side to the one to which he was turning during the fits) I sobbed like I have never sobbed before or since.

I had just got used to the idea that Mr Boo probably had cerebral palsy. Now we were facing a ‘catastrophic’ form of epilepsy that can cause cognitive and physical regression, global developmental delay and severe learning difficulties. And although IS is a transient form of epilepsy (hence the ‘infantile’ before the ‘spasms’) that usually stops by age 5 if not brought under control with medication before then, in more than half of children it leads to other seizure types later in life.

‘He doesn’t deserve this,’ I cried redundantly. ‘Neither does his sister’. The consultant hugged me, the only medical professional ever to have done this. ‘He is the same little boy’, he said. ‘We got this early and there’s no sign he’s regressed already’. Often developmental regression precedes the seizures. ‘We will beat this.’

We were run through the various treatment types. Frontline treatment varies slightly from country to country and different drugs are more effective than others depending on the underlying cause of the seziures, which in Mr Boo’s case, is likely not genetic or metabolic (although we haven’t had those tests yet), but his brain damage. A 6-week high-dose steroid course of prednisolone is the most common treatment in the UK. They wanted to start us on it straight away, but Birmingham inject these steroids, a treatment that requires regular visits from an epilepsy nurse throughout each week of the course, initially to adminster injections and then to monitor for high blood pressure and blood sugar (two of the raft of side effects this drug can cause). Sadly, our hospital couldn’t support this, so Mr Boo was put on a tranquiliser to get us back to our hospital where a course of oral steroids would be prescribed.

The treatment schedule was explained to us in detail and the neuro phoned our hospital to talk to whoever would be looking after our care when we got back home. Since there are no neuros at our hospital, Mr Boo’s treatment would be ‘overseen’ via telephone calls (‘overseen is an odd word to use, in the circumstances, don’t you think?) from St George’s. There was also, we were told, a very experienced community paediatrician who was also an epilepsy consultant who would look after us longer term, we were told, but he was on holiday for Christmas for two weeks. This did not bode well.

But I don’t want to turn this into another of the how-the-local-hospital-let-us-down-again posts, how their initial refusal to send a community nurse to us led Mr Boo to contract RSV and bronchiolitis from the hospital. How we were rehospitalised as a consequence. How I had to keep producing NHS treatment protocol guidelines and crying to consultant secretaries to get things done. Oh, it’s turning into one of those posts…

Where was I? Oh yes. The prednisolone did not work at first. 1 week at 40mg and the spasms were still there. The day we went up the maximum dose of 60mg they stopped and he has been seizure free since. (This doesn’t always happen but there are various other drugs and even diets that can help.)

So the drugs worked, but they nearly killed me. I’m not exaggerating. My depression and anxiety, about which I had never seen anyone before this time, became unbearable and I changed personality entirely (I’m still not me) as I spent all day staring at my baby, seeing the world as if through a piece of red sweet wrapper waiting for him to fit again. Knowing I couldn’t stop it, afraid he would sleep and wake to fit.

The side effects of the steroids were excruciating. Our chilled out little man screamed all day; he ballooned in weight and didn’t look like Mr Boo any more. His appetite became insatiable. He fed every hour for 30 minutes. I was still breastfeeding and he wouldn’t let me give up. In 5 days I lost 7lbs while eating normally. What’s more, his immune system became greatly suppressed and has remained so for the 3 months since we weaned off the steroid course. We were told that if he came into contact with chicken pox, measles or whooping cough he would need immediate hospitalisation as these diseases could kill him. He still hasn’t been able to have his MMR jab or an MRI as they have only just (last week) left his system.

As bad as any of this these side effects, though,  was that Mr Boo became acutely insomniac. For 8 weeks he slept for no more than 3 hours A DAY, in 50 minute chunks. And I couldn’t get him to take a bottle. I was awake all the time for the best part of two months solid. I thought I was going to lose my mind for good.

But I didn’t and Mr Boo’s reaction was extreme, so please don’t worry that what happened to him will happen to your little ones.

The long-term implications of the spasms are still unknown. Mr Boo is developmentally delayed, but then he was before the spasms began and probably these delays can be explained by the CP we’re awaiting a diagnosis for. Cognitively, he seems fine so far, but time will tell. The anti-convulsant he’s on as a maintenance medication is working for now.

We don’t know what’s coming in the future. But you know what? We did survive it and we are lucky. His seizures are under control and I am more grateful than I can say that they came at Christmas because we ended up somewhere well equipped to deal with this problem and, most crucially of all, to diagnose him.

IS: symptoms

Before I finish let me say again. Infantile spasms are rare. Chances are your child and most children you know will not experience this. But here are some red flags I urge you to familiarise yourself with:

1. Does you child exhibit strange movements that involve limb stiffening and/or jerky head movements either forwards, backwards or, as in Mr Boo’s case (more rarely) to the side?

2. Do these movements typically occur in clusters?

3. Do these clusters commonly occur before sleep or after waking?

4. Is you child regressing? Have they stopped smiling or laughing? Or are they finding it harder to sit or crawl after accomplishing these milestones?

5. Is your child under a year old? Most, but not all, children develop the spasms before reaching 12 months, typically between 4 and 7 months.

Please note that any of the symptoms listed above can have multiple causes other than IS. Note also that a child with IS may not have all of these symptoms.

But, if you are worried, please consult a doctor, armed, if possible with a video of the suspected spasms. It is clear to me and to many others I have talked to on message boards and support groups since that this is not a widely understood or recognised condition. So if your concerns are dismissed or the condition persists without diagnosis (exaggerated startle response – a genuine condition – is often diagnosed for IS, for example), please get a second opinion. Crucially, get an EEG or you’ll never know.

The good news

Prognosis of this condition is very much dependent on the underlying cause, but early treatment does seem to significantly improve the outcome.

Support

If you need further advice or support here are some resources I have found useful. If you know of others, please let me know via the comments box.

1. The Infantile Spasms Community: This online forum got me through some very dark hours. It has a moderator and you have to apply to join, but I got onto the forum quickly and greatly benefitted from the collective wisdom and generosity of this global community.

2. Infantile Spasms National Institute of Neurological DIsorders and Stroke (NINDS) Information Sheet

3. NHS guidelines on the treatment protocol for IS. I had this downloaded to my iPhone and repeatedly showed it to doctors and quoted it frequently.

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29 thoughts on “IS and us: Infantile Spasms and the Worst 8 Weeks of our Lives

  1. Jax Mully

    I’m so sorry you went through this! But thank you for such an informative post. As preemie moms, we become experts in things we never dreamed of knowing. Hope you had a great Mother’s Day!

    Reply
    1. mrboosmum Post author

      Thank you, Jax, for reading and for your lovely comment. You are so right, of course, about having to become expert, fast, in things no one should have to know about. Mother’s Day in the UK was in March, but I had a nice day all the same. Really hope you did too!

      Reply
  2. Christina E (@Beadzoid)

    Goodness, how bloody terrifying. Really great post though – not only from an informative point of view but it also shows how no one knows a baby like mum does. You knew something was wrong and pretty much what it was, even though it didn’t conform to how it often manifests. That is amazing, and I hope that you manage to catch a break at some point *hugs* x

    Reply
    1. mrboosmum Post author

      Thanks, as always, for your lovely comment. Bloody terrifying is right. I know it sounds silly to compare the 8 weeks he was being treated for the seizures to the 6 he spent in the NICU, but honestly, it was even worse. But you’re right, instincts kicked in and that 6 weeks in the NICU toughened me up to nag and argue for the treatment I knew he needed. Here’s to catching that break!

      Reply
  3. Jennifer

    So, if it’s IS it’ll show up on an EEG? My daughter was having these symptoms, but the EEG was normal. Her Dr. Chalked it up to her just having a tic.

    Reply
    1. mrboosmum Post author

      Indeed. Infantile spasms are diagnosed by chaotic brainwaves called hyppsarythmia. It is possible for seizures to stop and hypps still to be there (treatment is not considered successful unless fits stop and hypps disappear). But, as I understand it, you can’t have IS without hypps, although other seizure types can be present with a normal EEG. Please note, that I am not a medical doctor, though.

      I hope your daughter is doing well.

      Reply
      1. Jennifer

        Thank you so much for the info! It’s definitely something we’ve been keeping an eye on. It never seems to bother her, so that’s kind of a relief

    2. Mom

      We have IS but without hypps – simply because of the damage his eeg is so erratic its impossible to tell. if you have a normal eeg then the hypps should be present. i have heard of a few cases on my fb support group that have not had the hypps

      Reply
      1. mrboosmum Post author

        Thank you for correcting me on this. I guess it just underscores the importance of getting this checked out and to keep seeking help until a diagnosis is arrived at.

  4. Mom

    We started with seizures in NICU then at 6 months ended up with IS – I also thought it was cute and kinda funny especially since he would open his eyes and smile right before (at that point he never opened his eyes or smiled) – then I got the good sense to video it and it was confirmed without an eeg – its terrifying but sadly with my son expected. As far as epilepsy goes IS is completely terrifying. If I could pick – I would pick ANY of them over IS. Glad you guys are on good meds and are controlled. We haven’t been so lucky.

    There is a great support on Facebook for all the Facebookers out there – http://www.facebook.com/groups/63670816527/

    Reply
    1. mrboosmum Post author

      It’s great to hear from you and learn about your experiences. I’m so sorry that you and your soon have been through so much, though. I do hope tag the seizures do get under control soon.

      I totally get what you’re saying about different types of epilepsy. Unless you have encountered IS and its various effects on children (I’ve met a few kids with it know who are effected by in some many different ways – from the mild and/or brief – to the severe and long term) it’s hard to understand how devastating it can be, how some other seizure types (none of them good, of course) would be preferable.

      I’m so glad you passed on the link to the FB group, and hope it has helped you as I’m sure it will help others.

      Thinking about you and your little boy and wishing you lots of luck and sending a whole heap of love. Please keep in touch…

      Reply
  5. Leslie

    My son went through IS when he was 6 months old. It was absolutely horrible for him and for me. But now I look at my 3 year old little boy and I think of how greatful I am that the doctors were there to help us through it and any questions we had about the medication.

    Reply
  6. mrboosmum Post author

    Hi Leslie. Thanks so much for reading and for your comment. How’s your son doing now? Did the seizures stop or turn into another type? Really hope you and your family are doing well.

    Reply
  7. Megan

    Read your blog post while researching whether or not I can expect my daughter, Addison, to endure other forms of epilepsy later in life. We discovered in November of 2013 that she had tuberous sclerosis, a diagnosis that came after an emergency room visit for IS. I had noticed these spasm for approximately two months prior. Everyone poo poo-ed them, and other symptoms that I noted within a month of being born for that matter. The spasm that brought us in was unbearable. Having a diagnoses is educating, but freedom from the IS thanks to medication life-changing. My best to you and your little ones. One day at a time my friend.

    Reply
    1. mrboosmum Post author

      Indeed, Megan. In so sorry to hear your daughter had IS. When people find my blog through the search term IS I always feel so sad, remembering the fear (well it still comes back from time to time). Honestly, it terrified me. More than the brain damage and cerebral palsy that caused his IS. But my son’s epilepsy consultant is adamant (and he is a glass half full kind of guy) that abt seizures that may develop later on (and they may not) would not be so difficult/potentially damaging. And Boo has been seizure free for over a year, which is amazing. You are so right. One day at a time. And all of a sudden those days become months and a year and more. Great to connect with you and I wish you and Addison only good things for the future.

      Reply
  8. Pingback: Happy Mother’s Day–Dedication to My Daughter, Holly | A View From Under The Prep-Room Table

  9. mrboosmum Post author

    Reblogged this on Premmeditations and commented:

    For Throwback Thursday this week I am reblogging a post I wish I had never had to write. And equally, I wish it wasn’t sought out so often via Google by parents who sometimes use the most desperate search terms to find it. But I also want to spread the word about infantile spasms, the rare form of epilepsy Boo developed in December 2012. It is horrendous, but Boo’s story so far, is a happy one with a good outcome, thanks to early diagnosis and effective treatment. If this post helps one other person recognise the symptoms or gives a recently diagnosed family hope, then this blog will be worth every minute I manage to spend on it. Thanks for reading.

    Reply
  10. Morguie

    My daughter has had a nearly identical accounting as yours with her baby boy, my Grandson. I am praying your little baby will not get a prognosis as grim as we got for our Nate. It has gone from West Syndrome to something worse…Lennox-Gastault (sp?) which is very rare 1:50,000 babies is afflicted with this severest of epilepsies…Baby Nate also has CP. Like you, my daughter went through a terrible ordeal to get a referral for a neuro doctor and the baby had to be admitted for more tests. He was on Vigabatrin and other seizure drugs. He receives 3 or 4 types of therapy from occupational to speech. Not able to talk or walk…he did eventually learn to roll over from side to side which was huge for us. He will be 3 Monday…weighs just 16 or 17 pounds. He is so special to us, my heart just aches for him to somehow make some more progress…basically I beg God for a miracle. Its been so hard. I wrote a post honoring my amazing little girl for the fine Mom she has become and all that she has endured. It was posted on May 11, Mother’s Day. Nate was due to receive a Vagus Nerve Stimulator in April, however he contracted RSV and pneumonia which really depleted any of the bare reserves he had, knocking his weight down to 15 pounds again. I was alarmed at his skin and bones thinness when he got out of the hospital. Now the appt for the surgery is in July, God-willing… I want my daughter to know about you. However, her time is extremely stretched to limits unknown due to the myriad appts she has with Nate each week. At least now she has an in-home nurse 32 hours per week to help her with him…otherwise she’d likely be very ill herself. God Bless you and your little one, may He bless your boy with health and strength and a brighter outlook as to overcoming some of this terrible situation you are currently working through. No innocent baby should start life this way, it’s an awful cross to bear, and harder to bear when there isn’t a clear cause or reason that they had such a misfortune of suffering visit upon them in this manner….

    Reply
    1. mrboosmum Post author

      Goodness. My heart broke a little reading about the difficulties your little grandson is facing, along with your daughter. I really hope your daughter is getting as much professional support as she needs, although she is clearly blessed to have you as her parent. I hope Nate has a fabulous birthday tomorrow.

      My infantile spasms posts was written a few months after my son’s diagnosis. Mercifully, he was diagnosed very quickly and the steroids (though the cause of horrendous side effects) did stop them. He now is on anti-seizure medication daily, but mercifully he has not had a seizure we have known about for 16 months.

      He has global developmental delay, but it is not at all clear whether that is related to the IS or to his CP, which seems most likely to me.

      You are right, it is hard to see little children suffrering so much. Wishing you and your family all the very best for the near and extended future.

      Thank you so much for commenting on the blog. It is a privilege to connect with others in a similar situation.

      Reply
  11. Emily marston

    Hi this brought back so many memories, we ‘self diagnosed ‘ our son from the Internet as he was doing a funny turn as he was breast feeding, sort of breath intake and coming off, I’d had two older children and they didn’t do this. One night in his cot he was doing funny movements almost like the startle reflex, googled it and we just thought our world has collapsed. Infantile spasms! Get to hospital! Treatment! Went to A&E and they tried to fob me off, but I refused to go home til I saw someone, Unfort no one seemed to have heard of it but luckily I had filmed an episode of him seizing on Camera and luckily a consultant from Addenbrookes happened to be in our hospital and recognised it! Straight on prednisolone and everything you described happened, bloated, appetitie increased, grizzly, poor babies!! Cut a long story short apart from one relapse where he had another course of pred he responded to the steroids. He is now nearly 5, a lovely boy, he is high functioning autism, whether or not related we don’t know, but we feel extremely lucky outcome, I think it’s important to let people know about IS as early intervention is vital and how many doctors haven’t heard of it?! Good luck with your son! X

    Reply
    1. mrboosmum Post author

      Emily, thanks so much for your comment. I am so pleased your son is doing so well. You are so right. Early intervention is vital. There is no evidence (yet: I never count my chickens) that Boo has any lasting effects of his spasms. He has cerebral palsy (from a brain injury he sustained at 3 days old) and all the problems that brings may be concealing other problems caused by the spasms, of course, but we don’t think so. At two, he is a bright and lovely boy, if physically challenged by the CP. I hope your son continues to do well. And let’s spread the word. This is rare, but people need to know about it. The fact that so many healthcare professionals don’t is staggering and worrying. x

      Reply
  12. Soccer elf

    I had infantile spasms as a child and is caused a couple of fine motor skill issues and I didn’t do too well in school until I was diagnosed with a a learning disability/auditory processing impairment since early teens Since then, I’ve been doing really well in school (I am doing the IB program and getting high marks) and to be honest, having these problems have made me really self motivated to do better. I’m 16 now

    Reply
  13. Emma-Jane Garbutt

    Hi, thank you so much for your information. Just wondering, did your son have an EEG as a routine thing afternoon being born premmie? I guess I’m wondering, is the hypsarrhythmia present from birth, or only once the spasms start?

    Reply
    1. mrboosmum Post author

      No: Boo didn’t have an EEG at birth. He only had one once the seizures commenced. He had CT scans in the Neonatal Unit before discharge, which showed PVL (a loss of white matter as a result of brain bleeds) but no EEG. As I understand it, an EEG would have been pretty clear at that point. The chaotic brainwaves triggered the seizures, I think, (and therefore wouldn’t have been visible before then) and he had his first EEG the day he went into hospital following the start of the seizures. Please be assured that infantile spasms is very rare. Boo was very unlucky to get them. He didn’t get them because he was a premmie. They came as a result of the brain damage he suffered shortly after birth, we think, and he doesn’t seem to have developed any long-term problems related to the epilepsy as it was brought under control very quickly.

      Reply
  14. Peppery

    Hey there. Thanks for writing this blog. I’m so glad you were able to get your Boo in early for diagnosis and treatment.

    My son was diagnosed with IS/West Syndrome (due to early birth at 34 weeks, IVH and PVL) just a few weeks ago. My husband and I have been administering steroid shots (ACTH) at home. Your description of the side effects of prednisolone are spot on for the ones we’re experiencing. It’s bad enough to have to stick a needle in a baby’s little thigh — so much worse to do it sleep-deprived and scared. He hasn’t smiled/giggled in weeks, it feels like. But his spasms have stopped and we have an EEG tomorrow, and we’re so nervous about whether or not he’s really getting better that we could scream. Anyway, thanks again for posting this. This is some lonely and scary ground to traverse, and a lot of times I feel like it’s breaking me. I know it’s a few years old for you, but so helpful to me right now. Hope all is going well for you and your family. ❤

    Reply
    1. mrboosmum Post author

      Hi Peppery. Sorry I only just saw this. How was the EEG? Boo’s smiles disappeared for a while, too but they came back with gusto. He has cerebral palsy as a result of grade 3 IVH and PVL, so it’s hard to say how much or little the IS affected him. We think though every little at all and feel very lucky. In fact, two and a half years since his last seizure, we are slowly weaning him of Sodium Valproate, the maintenance med he’s been on since we weaned off the steroids. It is a long and scary road and nothing has frightened me as much as the spasms. I really do understand. I feel like we are a happy ending story for IS and hope your little boy’s will be exactly the same. Here to chat if you need!

      Reply
      1. Peppery

        Thanks for your kind words, and same to you about chatting! I am glad you guys are in such a good place. Still waiting on our EEG results, but my baby E is smiling and laughing again! (We’ve weaned down the ACTH to the second-to-lowest dose, only two more weeks’ worth total.) That is a nice thing to see, even if we have to go through another course of the meds. We suspect he has cerebral palsy, but his doctor doesn’t want to officially diagnose him yet. Not sure about what the extent of his delays will be. Right now, though, as long as he’s smiling and laughing, I’m feeling better.

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