Doctor has scared me. Please reassure me about baby's possible seizure while feeding

[CarmenSanDiego]

DS just turned 5 months and is bright, alert, sitting unaided and generally very healthy.

He had a bath with me this afternoon, then while I was getting dressed, he had a bit of a cry because he was hungry. DH couldn't soothe him, so dressed him and passed him over to me to feed him. While he was feeding, his arm suddenly shook and then his leg. All the time, he carried on feeding and stayed awake. I latched him off, he shook for another second or two and then calmed off. He carried on feeding and then went to sleep and seemed quite drowsy afterwards, although dh says he was tired anyway so would have slept anyway. I'm not so sure. It only lasted a few seconds, his lips were pink and he didn't have a temperature (so not febrile convulsion). He does have a stuffy nose and a bit of a cold though.

I called the paediatrician to make an appointment for Monday. They called back and told me to take him to urgent care (equivalent of a walk-in, I'm in the US). So I've taken him to the doctor which cost $170! (DS hasn't got insurance yet, argh) and he just said there wasn't much he could tell me, it sounded like a partial seizure and he'll probably need an MRI and EEG to rule out loads of nasty things, which he then listed. He said he'd probably be ok over the weekend but if I was worried to take him to A&E.

See, this seems like one of those things that I could easily have written off as a little reflex or a shudder. It was a bit like when they flail because they've got a stuffy nose and can't feed properly (he has got a stuffy nose!) but his arm seemed to move a bit faster than the usual 'can't breathe!' flail.

Now I'm just upset, worried, waiting until another appointment on Monday that's going to cost another $170 and then onto the treadmill of MRIs, EEGs which are going to cost thousands and he's going to need to be sedated which terrifies me.

Argh, please reassure me that this is just a one off. My brain is going to awful things like tumours and infantile spasms and I'm so anxious and upset

Carmen Sorry you are so worried, I can't really help, but didn't want to leave it unanswered. The fact that the doctor didn't have your ds rushed straight to hospital must be a good sign?
I reall don't know what to say.

Thank you so much lbb. He seems absolutely fine now. I think if he goes to Monday with no more incident, I'm going to push for a wait and see approach. But we'll see the doctor then and what she says.

I'm trying so hard to keep calm, I have massive health anxiety but every time I feel I'm beating it, something else comes up.

Yeah, it's tough isn't it? My ds1 get very high temps every few weeks and I always panic, he gets to 106 degrees sometimes and I always panic thinking he's going to die, but the temp comes up and down so I constantly ask myself should I go to hospital or wait until it doesn't come down and just dial 999 (takes upto 2 hours to get to hospital on public transport). It's hard to know you're doing the right thing all of the time.
Hope he stays well. x TC

Don't mean to be alarmist, but it's a really serious problem to not have health insurance in the usa. If you are low income, then your ds can qualify for very reasonably priced Healthy Families Insurance. There are also other options if you don't have much money. You will have a hard time getting him individual insurance once you have embarked on care for an issue like this. Do either of you have a job that you can insure him through? You must do that immediately if you do. Also, if you are not doing it through insurance, you can get better prices on MRI and things by not doing it through the hospital. Call around. You can also go to a county hospital which will treat you for free. Americans say awful things about County Hospitals, but frankly they are much better than anything I have experienced on the NHS. Whatever you do, please do make sure that you sort out health insurance right way.

And I hope it all goes ok.

Scary. I really hope there is nothing serious going on. Trouble is that in the States because of a)the fear of litigation and b)the profit motive you will get pushed towards lots and lots of tests, many of which may be totally unnecessary. And you will pay through the nose. Do fight the costs, as they are really inflated, and people like the insurance companies very rarely pay the rates individuals are quoted (bang out of order but there you are).

Is your dh likely to get insurance through work? If there is something wrong with your ds then you could be stuck in a really difficult situation, as many many policies exclude "pre-existing conditions", which means that getting insured now would not cover you from anything arising from this current issue.

Anyway, hopefully it's nothing to worry about, and just an example of over investigation. Probably in the NHS they would have told you to watch and wait. On the other hand if there is a problem picking it up really early can be hugely beneficial. It's a fine line I guess.

Yeah, I know, Sofia. My husband lost his job over here and is in the process of getting a new one (just waiting for security clearance on one with insurance, so hopefully it will go ahead). We've had some nightmare adventures in healthcare in the 9 months we've been here already!

Unfortunately, ds is the only one of the family without health insurance at the moment. We need to get his Social Security number in order to get it sorted and it took months to register his birth because he was homebirthed so couldn't get social security sorted but now that's underway and hopefully dh will be working very shortly.

Logically, I really think this is a storm in a teacup with the 'seizure' - I think it may have easily been a shiver from being out of the bath, a 'can't breathe' flail or just some one off baby movement - I could have easily missed it if he wasn't feeding at the time - but now I've gone and mentioned it to a doctor so it's become a big issue.

I have a feeling the NHS would have said to call up only if it happens again, but here they're terrified of being sued so everything gets investigated in depth. (I've had an endoscopy and ultrasound in the last 9 months and barely had hospital treatment in my life before we moved here!)

But he's my baby and I'm anxious

Oh total sympathies, and it is such a different mindset. When I had an accident in the US (a while before living there) I was told every single potential side effect/consequence by the consultant at the time (single consultation). In the UK they looked at me very blankly when I said should I be worried about necrosis and arthritis (I broke my arm at the shoulder quite badly) and the UK specialist said that the necrosis was incredibly rare, and the arthritis something that might happen in a few years but I couldn't do anything about and should therefore stop worrying about! I suspect both approaches weren't quite right, but they really sum up the systems for me.

Really hope that everything is OK with your little one (and that your dh gets his job - too stressful!)

Nooka! You summed it up with that first X-post. I didn't see it while I was posting.

I feel there's a real middle ground between the two systems. I've spent most of my life in the Channel Islands which was different again. On moving to England, I found the NHS were always a bit, "Yeah, go home and take two paracetamol and call us again if it gets any worse" whereas, as you say here, the doctors rake in a good profit and encourage investigating everything. It's hard to get reassurance that everything is 'probably alright' and very difficult to weigh up the risks when they won't tell you how likely it is that something is a serious or minor problem.

It takes a strong soul to stand up to a doctor telling you that you ought to get something investigated. But when you have a doctor who is going to make money from that investigation, and it's going to cost money you will really struggle to find AND mean a traumatic and risky procedure to investigate... then it becomes more difficult. Argh.

Oh well, will get a 'second opinion' on Monday which I expect will tell me the same thing... but might be more helpful. fingers crossed

Thank you for your support, ladies, it's very appreciated.

If he carried on feeding and stayed awake, I don't see how it could have been a seizure. You have to lose conciousness to have a seizure, that's part of the definition.

Doctor mentioned 'partial' seizures when just a limb or something moves.

But yeah, the fact he kept on sucking away makes it less worrying to me. And the fact that babies can do all sorts of weird spasmy reflexy things anyway.

When DD2 had a febrile convulsion, she shook and stayed conscious, but afterwards her lips turned blue which freaked me out.

DS looked fine afterwards. He's still fine touch wood and sleeping happily right now

BTW Belgo, I love your little Playmobil family in your profile!

thank you. Both of my dds have had siezures, and they have been very frightening - eyes rolling to the back of the head, ghostly white, foaming at the mouth, jerky rhymatic movements, and a lowered level of conciousness for the best part of an hour. DD1 had an EEG and ECG and was monitored for one night, but even with a total of 7 seizures (caused by reflex anoxic seizures), she has never had an MRI.

If your ds has got a stuffy nose and he was feeding, I suppose it's possible his oxygen levels dipped for a couple of seconds, but I'm not sure because as you say his lips remained pink.

My dd1 had had three seizures before she had any tests, and on the basis of one half suspected partial seizure which might even not be a seizure, I would not want my child sedated for an MRI. I would keep a very close eye on him and wait and see.

I rarely post as a professional because it's so difficult to give advice online but I really, really think that your doctor is massively overinvestigating without clear clinical indicators.

It is very difficult to say what happened to your lo although from what you've said to me it does not sound like a partial seizure though clearly I could be wrong. I do think that if you had presented your lo to the department that I work in with that story we would probably have admitted him for observation (though might have just sent him home) and would then have discharged him after 24 hours or so if he seemed fine with a review appointment and advice for you to contact the department if you were concerned that he had further episodes. We also suggest attempting to video the episodes if more happened.

It is rare for small babies to have partial seizures and although they are associated with lots of horrid underlying issues these are often apparent in themselves.

I would strongly advise you that unless your ds has more of these episodes then sedation/GA for an MRI is an unnessecary investigation and the risks outweigh the benefits. An EEG is a reasonable test as is a cranial ultrasound (done through the anterior fontanelle) although even this would be overkill after a first episode of doubtful significance imo.

I hope that this helps.

agree with paedincognito

Another vote for a total over reaction by your doctors here. Like Belgos lo., our DS2 has reflex anoxic seizures but his are on a regular basis (every couple of weeks is the norm at the mo). The only investigation he had was an EEG with mild sedation (melatonin which is a natural hormone rather than a 'drug'). Certainly no MRI was ever mentioned.

Of course only you can decide whether you follow the advice of your doctor or not but I would support your gut instinct of a watch and wait approach.

Come to think of it DS1 used to do a weird shaky shudder every so often when he was tiny, always when he was feeding and always on the 'free' side. I always put it down to being a shiver of happiness. He has never yet had any other type of seizure(...touch wood...).

Doctors can't win. Send for extra tests or send home. Never seems to be the right thing.

I hope you baby is okay.

If anything like the UK your insurance won't cover anything related to this incident as it happened before you had insurance.

What paedicognito said -- maybe I don't understand what a little shake of the leg and arm meant, but it sounds very unimportant to me.

I'm sure that in my laid back ways it I would have just thought it some trivial thing to do with immature nervous system, and completely ignored it myself.

That's the problem though Riven, it is likely that if this amounts to anything (and I'm sure/really hope it won't) then insurance is highly likely not to cover it because it could be seen as pre-existing. Our experience in the US was that our insurance tried to get out of paying for everything possible on that basis.

A second opinion is a very wise idea.

Thank you so much PI and everyone else. You've given me a lot more confidence to face doctor 2 on Monday. DS is still doing fine thankfully. I do appreciate you taking the time to post. Thank you

Riven - I stand corrected.

Carmen - hope everything goes well with the doctors.

PI, I was reminded of this thread today, answering a thread on what I learned from Mumsnet.

I never posted again on this because I was feeling a bit superstitious, but I went to my regular paediatrician who agreed with everything you said. DS did tremble a couple more times until he was about 6 months then it seemed to stop happening. touch wood he's been fine since and is coming up to his first birthday on Christmas Eve.

If you're still around. Thank you. You really made a difference to me and my baby. And thanks to everyone else who said nice things here when I was so worried