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Philly Mom
03-06-2015, 01:08 PM
Our ped wants us to take DD2 (16 months) to an endocrinologist. Here is why: since birth DD2 has shivered. Babies aren't supposed to do that. At day 2 of birth, DD2 had seizures. She shivered during the EEG they did and it did not show up on her EEG so they don't think it is neurological. I discussed it with her neurologist multiple times. He dismissed it each time. I am looking for a new neurologist to seek a second opinion at this point.

Fast forward to last week. When we got DD2 out of bed she was not responding the way she should. She could not stop shivering and kept falling asleep on the changing table. She never falls asleep in random places, even when I have woken her up in the middle of the night for a flight, or when we flew to the UK and she barely slept on the plane. My kids are light sleepers. She had an upset stomach and had a blow out. She had not had much to eat the day before at all. We got her dressed to take her to school thinking she may have just been extra tired, and gave her milk. She drank 8oz in no time but still could not stop shivering and was still not responding the way she normally would. She just wasn't herself. We gave her more milk at school because she would not eat. I then left her at school and called the peds to get an appointment. I called school 15 minutes later and she still was not acting normal, so I turned around and picked her up. By the time I got there, she had snapped out of it and was herself (albeit still with an upset stomach). She had finished the additional milk we gave her before I left (another 4oz). In total, it was about 30 mins after she first started to drink her milk before she snapped out of it. She often shivers in the morning while we get ready or around dinner time or after we get out of the bath. School said they have never seen it before. Her ped thinks that either she had a seizure before we got her (she does not think this is that likely) or that she had a blood sugar event and the shivering is actually a consequence of blood sugar issues. My ped is trying to get me into CHOP in the next two weeks. The ped did not do any blood tests because she was fine by the time we got an appointment later in the day, though from talking with CHOP I know they want us to have some tests done before we go for an appointment. Any insights? Any questions I should ask of either my ped or the endocrinologist or new neurologist would be appreciated. FWIW, she is developing normally and is a very happy kid. She smiles most of the time, is interactive, and while has only 1/2 words, fully comprehends everything and can already follow multi-part directions.

Indianamom2
03-06-2015, 01:12 PM
How scary! From my limited knowledge, I think you're on the right path by looking into seizures and blood sugar issues. Both could cause symptoms like that. I hope you are able to get some answer ASAP. Please keep us posted!

brittone2
03-06-2015, 01:23 PM
Has she had expanded testing for metabolic disorders as part of her past workups?

Philly Mom
03-06-2015, 02:00 PM
Has she had expanded testing for metabolic disorders as part of her past workups?

Not that I am aware of.


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KpbS
03-06-2015, 02:19 PM
CHOP is very well regarded. I am sorry your ped has brushed your concerns off! You definitely need to keep on pressing for answers. A second neuro opinion, endocrine work-up, genetic testing (development ped perhap) are all avenues I would pursue. I would also find a new ped. A Big :hug:.

Philly Mom
03-06-2015, 02:36 PM
CHOP is very well regarded. I am sorry your ped has brushed your concerns off! You definitely need to keep on pressing for answers. A second neuro opinion, endocrine work-up, genetic testing (development ped perhap) are all avenues I would pursue. I would also find a new ped. A Big :hug:.

My ped is not brushing me off. It was the neurologist who has. When it was just the shivering, my ped (and I have seen two different peds) wanted to know what the neurologist said but otherwise thought it was probably nothing until last Friday. Now she thinks it needs to be checked out and she is trying to get me an expedited appointment. She was also on board with me finding a new neurologist.

KpbS
03-06-2015, 03:02 PM
Good to know! I must have misunderstood your post. I hope you can be seen soon and would write down a detailed timeline for the doctors you end up seeing as appointments can be a bit hectic, esp with kids in tow. :hug:

mmsmom
03-06-2015, 06:36 PM
I'm sorry you are going through this. I just wanted to advise simultaneously trying for an appt at DuPont.

jent
03-06-2015, 07:20 PM
CHOP is very well regarded. I am sorry your ped has brushed your concerns off! You definitely need to keep on pressing for answers. A second neuro opinion, endocrine work-up, genetic testing (development ped perhap) are all avenues I would pursue. I would also find a new ped. A Big :hug:.

Agree, CHOP is well-regarded, they have an excellent Endocrinology dept., and they have particular expertise in hypoglycemia. Re blood tests before you go, if they listed the specific tests they recommend your pediatrician to draw, then get it first (especially if there is a wait to get in). Otherwise I would just wait until you see the endocrinologist. That way they will do all the right tests in one stick.

daisysmom
03-06-2015, 10:16 PM
My dd had one seizure at 7, thought to be a febrile seizure tho she was years outside the supposed window for those. We saw a great neurologist who ran more tests,including a sleep deprived 24 hr EEG. CHOP was where we probably would have gone should it have shown any seizure waves. My understanding is that a sleep deprived study is what you need if they are ruling in/out seizure disorders.

Two pieces of advice. First, keep a journal of when it happens so you can have a food/sleep/temperature record as objectively as you can. And second, that our neurologist told me "sometimes things happen, and as long as they dint happen again, it might be ok to not know why they happened once". We never got full answers to why this happened to us so far outside the she bracket but I learned the brain is very complicated and not everything can be explained.

niccig
03-06-2015, 10:43 PM
A friend's son possibly had a seizure, and they were told to video it. With the video, the neurologist could see what was happening as it wasn't replicated in front of the dr. So I would grab your phone if it happens again.

bisous
03-07-2015, 02:40 PM
You've gotten great advice. I don't have a lot to add except I have considerable experience with pediatric endocrinologists and blood sugar. DS1 was seen for several years at CHLA for his type 1 diabetes and they were amazing. If there is ever a question of blood sugar issues at my house I do not hesitate to do a finger stick on my kids but finger sticks are a way of life for my kids. Fingersticks are easy to do but kids DO NOT like them (it hurts--kids with diabetes just get used to it!) but if you have access to a glucometer that could give you some additional information. For my kid with diabetes, any blood sugar below 70 is considered worrisome. I have had blood sugars below this on occasion and it does feel awful.

ETA: Be prepared for most doctors to write off any reading taken by a home glucometer. Ironic considering I give dosages of insulin based off of those readings! This is really just to give you additional information.

Philly Mom
03-07-2015, 03:32 PM
Thank you everyone. I did also try DuPont and the wait for the endocrinologist is the same so my ped is trying for an expedited appointment at CHOP. We also have a good friend who is a doctor at chop and he will help with the neurologist. DD2's original neurologist was at DuPont and as I want a second opinion I just feel better with chop right now. Our friend is already checking in with specialists and is guiding us through some of this.

The more I am paying attention I think the shivering is blood sugar related. She was shivering earlier today after she ate a light breakfast. We went to a farmers market and I gave her a snack and she was fine after that. Her ped was leaning towards hypoglycemia over seizure and I am inclined to agree though of course I am biased and really hope the seizures aren't coming back.

Bisous I may follow up with you once I know more.


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Philly Mom
03-09-2015, 07:40 PM
Mini update:

Our ped got us into the endocrinologist for tomorrow and a friend got us into the neurologist next week. I will start a separate thread for ideas on how to keep a young toddler still for an hour during an EEG. It was hard enough when she was a baby.


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