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Infants, Toddlers, & Preschoolers
Brain Injury after Tonsil and Adenoidectomy - Need Pediatric Neurologist and Other Advice, Please
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Anonymous
I forgot to mention that I think he has particular expertise in brain injuries, but I might have gotten that impression anecdotally. |
Anonymous
NP here. We see DiFazio for our DC and I also recommend him. He has a great bedside manner with both children and their parents and he takes you seriously, does not poo poo your account of what is happening and, at least for us, has gone down many many avenues to try to figure out what was wrong. |
Anonymous
| OP, please report back. How are you? How is your son? |
Anonymous
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I think many on this post are being alarmist. It is something you need to deal with but as long as seizures do not happen for more than 5 minutes, then get the next appointment with a pediatric neurologist. My son (2) has a form of epilepsy just as you have described although just whilel falling asleep, waking up. It is not an emergency situation. If you are not so sure about your pediatrician, then do you really want to take your pediatricians advice on who to go to. We go to Children's Hospital. I'm sure Kennedy Kreiger is excellent, too. I am the poster who recommended Dr. Conry at Children's hospital because her specialty is epilepsy. But you may want to see a brain injury specialist too. We see Dr. Szuhay, but will consult with Dr. Conry as soon as we get the results from his last EEG.
If your son just withdrew from preschool because of this, (and I am guessing here) then you might want to know that my son has this and was in his class in preschool. If you would like to talk to someone dealing with epilepsy in a 2 year old, I would be happy to talk or email with you. I am Danny's mom and if your son knows a Danny in his preschool. You have my email address, and phone number I believe. I would be happy to talk with you about what we have done and experienced. Danny has had two video EEG's at Children's Hosptial, a three day last January and an one day just earlier this month. If I am guessing wrong please forgive, but I am still happy to talk with the poster about epilepsy and how we are dealing with it. |
Anonymous
| poor baby! My thoughts are with you. |
Anonymous
Totally second that point of view. My oldest's first pediatrician (practice) was Children's. It drove me nuts never feeling like we had a doctor who knew us! We ended up leaving and going elsewhere, but if we had stayed at Children's then DC's underlying issue would have been caught years earlier. |
Anonymous
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This is the OP with an update. We did end up visiting our pediatrician because they said they were going to do a neurological exam. It turned out to be a complete waste of time. The exam was a joke (looked in the eyes with a light, and checked his reflexes). I'm so regretful because in a sense we wasted this valuable pre-holiday day on them, again. If they had taken my concerns seriously from the beginning, we would not be 2 months post-surgery and one-day pre-holiday scurrying to get my son examined. I blame myself, but I've been so hopeful that what they were telling me was true (that it was normal) that I've not pushed hard enough. Now I'm in a different place. While at the pediatrician, I considered having iron bloodwork done to rule out restless leg syndrome (and the sleep equivalent, PLMD) which I've read sometimes is caused by iron-deficiency. However, with the holidays coming, and the likelyhood that we will switch pediatricians I've just decided to wait until next week.
I have calls in to a few pediatric neurologists, but the timing (with Thanksgiving) is so bad. We've opted not to take him to the emergency room as I've called Hopkins and Children's National and they've told me that the specialists would not come in over the holiday. I'm not sure if it is the right decision, but I'm trying not to subject my son to the ER experience unless it is going to get some answers or results. As far as I can tell, my son's condition is not deteriorating rapidly. However, with a 2.5 year old, it is impossible to know. I want to see someone as soon as possible and will probably force my way in a neurologists door on Monday. And, am going to try to get someone somewhere to do an EEG asap. Thanks for all of your thoughts, prayers and advice. Please do send any more if you have them. Thanks to this post, it is the first time I've not felt alone in this process. |
Anonymous
| no advice, but my thoughts and prayers are with you, OP. |
Anonymous
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OP, if not ER can you take him to the urgent care?
Many places has very good tools and they might be able to give you some answers. I was very sick last Friday and regret I didn't think about going to the urgent care that day. I was in a place where I wanted to avoid ER and no doctors was able to see me that day or on a weekend. I don't know how you can deal with this another 2-3 days w/o seeing anyone. Do hope your child is okay though. My niece has brain injury and she has to take medications daily for her seizure. |
Anonymous
| Thank you for posting an update, OP. My thoughts and prayers are with you and your son. |
Anonymous
| Good luck, OP. I'll be thinking of you and sending you and your son positive thoughts. |
Anonymous
OP - you don't describe much of the trances/"zone out" periods your son experiences, so I don't want to come across as an alarmist - but it could be a post viral encephalits. Also, "space out" episodes are also characteristic of Klein Levin Syndrome. You may also want to start keeping a journal of the space-out episodes - is there anything that is triggering them (after eating, light, etc.)? Also, note any change in behavior (which is hard considering your son is 2.5 so there is no real baseline for "normal" behavior, but things like lethargy, food cravings, inability to focus, etc. may be worth documenting). |
Anonymous
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OP, please post if you have any updates.
I hope you are able to see a neurologist this morning and that everything goes well. |
Anonymous
| bump |
Anonymous
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OP - sadly they only way to determine if you are being an alarmist or not is to have DC evaluated. I imagine this is so, so stressful and I first want to wish you and DC and happy and healthy outcome. Do whatever is in your best judgement but always advocate for yourself and your child despite what some helathcare professionals say / do. You may want to reconsider the ER visit if there are any more signs / sxs. This visit can sometimes get you into the system and because they need to act on the child's behalf to determine appropriate care and so they may order some tests to help rule out certain concerns. Going when there are not current symptoms is obviously not an urgent / emergent situation so not helpful. They will just send you home and have you wait to see specialist. It would depend on the wait time.
FWIW, my niece had the same absent epilepsy syndrome and it has thankfully resolved as she has gotten older. |