Discussions By Condition: I cannot get a diagnosis.

2 month old having seizures

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: Pookie1022
  • February 10, 2008
  • 04:09 AM

I have a 2 month old son and when he was born he was placed in NICU for pneumonia. After spending a few days in NICU the Doc said he thought it was a surfactant deficiency. They placed Caden on gentamicin and ampicillin. Within a few days everything started clearing up and we got the news he was coming home. On the evening before he was to be discharged he had a seizure. The Doctor recommended transferring Caden to a hospital with a Peds Neurology Doctor. The next morning we were transferred were all sorts of tests were done, EEG< MRI, CT SCAN AND METABOLIC LAB WORK. All the test came back negative. So the Ped Neurologist said she didn't think Caden had a seizure and sent us home. A month later we followed up with the Ped Neurologist with no major events. On Thursday morning we were supposed to have another EEG, while getting ready my son started shaking, when my wife picked him up he straightened out and went stiff. His eyes were opened and fixed. I told my wife to call 911 and as she did so he stopped breathing. I started CPR and restarted his breathing. We were rushed to the hospital were they monitored Caden for two days. While we were there they ran another EEG that came back Negative. The Pediatric neurologist doesn't believe in giving seizure meds due to slowing learning abilities. Alll we were told when we were discharged was to wait. We are going to get a second opinion this week, but are very terrified this will happen again. Some other symptoms my son has are, Hypertonia and Exaggerated Startle Reflex. Please any one with info or has had an experience like this please help.

Thanks Proud Parents

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10 Replies:

  • i feel for you both. My own child was 6 weeks old when I had to do CPR on her as she stopped breathing (her condition was different to your babe.. but my daughter too used to have seizure like eposides). Some of the big hospitals have monitors they can lend or hire out to parents where there is a risk of a babe stopping breathing. I suggest you contact the hospital and ask. If they wont help.. get in touch with the hospital's social worker to see if she can help you get one. That will help bring you some peace of mind. I know just what it's like being scared that ones baby may stop breathing again and maybe next time one wont be so lucky. ps.. with my own daughters seizures they used to last less than a couple of minutes. The tests never picked up anything and the doctors kept on saying that they would have to see a seizure themselves. So we were expected to rush her to the hospital whenever she started having one. Thing is they'd be stopped by the time we'd get there. Her eyes would roll back into her head, opened and she'd just go rigid and then limp and flop and be unaware. She seemed to grow out of these and by the time she was 13? mths old.. they'd stopped.
    taniaaust1 2,267 Replies
    • February 10, 2008
    • 05:15 AM
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  • Thanks for your post. We were sent home with an apnea monitor and it has given some relief. But not like knowing for sure what the cause of the seizures are and how to treat them.
    Pookie1022 2 Replies
    • February 10, 2008
    • 07:22 AM
    • 0
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  • I'm so sorry you guys are going through this. It must be scary.Is it possible to be followed by a pediatric neurologist on an outpatient basis?Also, it might be worthwhile getting a video camera so you can capture the seizures as they are occurring, and then show the clips to the doctor so he can see what kind of seizure they are. It might be more practical to have cameras installed throughout the house, since you may not have time to grab a handheld one in time, and you probably don't want to be fishing around for a camera when your child is actively seizing.Can you get the hospital notes from the first seizure, so that you know what the seizure looked like and can bring this information to the pediatric neuroloigst?It might also be helpful to start a log book listing all of the seizures, what time they occur, how long they last, and what the key features are. Also note any areas of increased pigmentation on your son's body. The more information your bring to the doctors, the better they will be able to determine the root cause. There are a lot of things that can cause seizures in kids, and they will be carefully ruling each thing out.Sorry again that you guys are going through this. I hope you get some answers soon. You will be in my thoughts.
    Anonymous 42,789 Replies
    • February 10, 2008
    • 08:23 AM
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  • Thanks Elke for the response. We will continue to follow up with the Peds Neurologist on an outpatient bases. And all of his chart was sent with him we they transferred him. We started keeping a log of events as of today to help. I just don't understand why one Physician would not take the word of another Physician. His first seizure was witnessed by several trained medical professionals. I have seen info on the internet the seizure meds. can be bad, but I don't know if I'm strong enough to watch him suffer through a seizure and not have any way to help him. Thats why any info is apperciated. Thanks again
    Pookie1022 2 Replies
    • February 10, 2008
    • 08:42 AM
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  • Tay-sachs lists exaggerated startle reflex, hypertonia and siezures as a symptom. But it normally starts later. Babies with Menkes disease start with siezures at about 2 months and lists hypertonia as a symptom. Effecting mainly boys. I hope its not the latter, for your sake.
    TerryG 120 Replies
    • February 10, 2008
    • 11:42 AM
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  • See a geneticist ASAP.
    aquila 1,263 Replies
    • February 11, 2008
    • 03:49 PM
    • 0
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  • Hi! Pookie My son is also 2 months and having the same symptoms as your child, -I am interested in the out come of your situation. My son has also had all sorts of tests done and they have come back negative/normal. I am very scared and worried Just like you are.Worried mom
    divinefuture 1 Replies
    • February 28, 2009
    • 08:48 AM
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  • Being that he was ill so early in life, it is possible he suffered a febrile seizure. My daughter did @ 6 weeks old and sure enough she had pneumonia. All her tests were negative too. But that should not rule out the possibility that your son may have some type of epileptic disorder. It I were you, I would get a second, third, or how ever many more opinions it takes to make you feel at ease. My thoughts are with you & your family.
    Carrlexzi 36 Replies
    • February 28, 2009
    • 08:05 PM
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  • I would also suggest seeing a geneticist.
    qwertyuiop123 453 Replies
    • February 28, 2009
    • 09:36 PM
    • 0
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  • dear,May God bless your child (God willing) What I can tell you to do is to make what is called Video EEG not the routine one, this is because the routine aids diagnosis but the Video EEG is most diagnostic..... and please send some information about what happened in the NICU and the outcome of pneumonia treatment as we may find a clue in it.... I also would like to ask about any family history of the same disease..
    kimo123_med 15 Replies
    • February 28, 2009
    • 10:38 PM
    • 0
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