Last week: My sweet AJ was rushed to ER on July 13th – nice and early in morning while her dad was in Yoga.

I went to put AJ in her crib, slightly awake in hopes that she would take a nap since it was 6am and I am not a morning person nor is my preschooler – so I was hoping for a couple of extra hours. I watched as she squirmed and groaned and then she went into an episode. Her head started to tick from the right side to center and then back , then her arms started to hit the bed, and then the legs – I was told later she had a tonic clonic, aka: grand mal – but the lack of synchronicity was due to the lack of motor skills at this age.

I had been videoing it for the neurologist since the next day we had to go in for a LP and blood work and I wanted to show him the change in presentation and length of time since the Keppra was started. Then I noticed it was reaching the “3” minute mark – I tried to rouse her out of it – no response – then she went completely limp – still no response. It was after the 5 minute mark.. I kept questioning myself if I should call 911. I was apprehensive that as soon as I would call them she would snap out of it. Forgiving myself that could happen I called. 3 minutes later the police came and he was the first to assess her – no response – but good vitals. The Paramedics came in shortly after – limited response, they thought she felt hot (this can happen in a seizure) so they undressed her and finally roused her out.

I tried calling and texting my husband, knowing full well it was for naught since he was in class – but at least he would get the message(s). My daughters and I got into the ambulance and off to the hospital we went. Her oxygen dipped a little while in there so they gave me oxygen to blow over her nose and mouth (not mask). Finally after what felt like an eternity, we reached the hospital. The hospital began to check her vitals, but since she was diagnosed with epilepsy they immediately began to get her ready for a second transport to The Children’s Floating Hospital in Boston.  My husband at this point got the message but was far from getting to the hospital so I had to allow them to take my baby while my oldest and I had to stay at the hospital. (They didn’t have a booster for the oldest so could not transport us together.)

Now to shorten the Tufts experience, essentially they doubled her dosage of Keppra and attached her to an EEG machine. They observed her for 24 hours,  saw her have physical seizures but did not capture EEG seizures, possibly due to the Keppra. So they had said they wanted to do another 24 hr observation without the Keppra. Technically, since they gave her another double dose at 9am that morning the 24 hr observation should have started at 9pm – but even more technically Keppra takes about a week to completely get out of the system. So I knew that the possibility was strong that if Keppra was hiding something, that it still would be. The drs told me that if they did not see seizures Friday, they would let us go home off the keppra at 5 pm. While the prospects of going home were obviously positive for us – I knew that we still risked a seizure and because the knot in my stomach was not feeling untied and I still felt sick over her abnormal EEG, I was not feeling comfortable with the idea of going home yet.

It wasn’t helping that the doctors were not 100% confident at what they were seeing – they knew she wasn’t having EEG seizures (at the time), but saw her have physical seizures and black outs. This meant they obviously did not have an answer for the abnormal EEG.  They want as far as to entertain the thought they were seeing a possible transition from neonatal status to full infant status. They stated that it was possible she suffered from some amount of neurological retardation due to the maternal environment she experienced – but because she was catching up so quickly that the electronic synapses were firing hard and strong to make connections. Yet they can’t prove any of their theories, but felt comfortable sending us home.  Yet due to their underwhelming confidence I basically told them that either she stay longer due to being in a safer place than home or they were going to send me home with an ambulatory EEG device to capture data over the weekend and a visiting nurse – impressed by the suggestion , they agreed.

This past Monday we went back to have the electrodes  removed. They have since downloaded the data and I am waiting for a review of the data. Hopefully by Wednesday I will receive a preliminary report of all of the EEG findings from last Wednesday through the weekend. From there we have a few paths we may go down:

  1. They find seizures, but since the double dose seems to control it, we will continue the meds
  2. She has no EEG seizures – and the abnormal EEG has to be answered for…
  3. She has something else – the abnormal EEG still needs to be answered for…
  4. She does have a seizure disorder, but we do not know for sure until she has reached the age of 24 months

Thursday we have Early Intervention coming to the house. They will observe her and hopefully allow your to be part of the program so that we can ensure her development does not get hindered by the seizures or what ever is wrong…

So for now the path is very unclear and messy with obstacles, but I continue to hold her hand down it and hope to God that we find a rake along the way to smooth out this life’s trip for her.


6 responses to “Updates

  • Marilyn

    I am praying mightely for my great granddaughter, as well as to give you and Jesse the large amount of strength you both need. It can’t be easy, but I know there is a great deal of love there and it is surprising what love can do. Great grandma Noller

  • Katie Cunningham

    Early intervention makes -such- a huge difference. I’m glad you’re getting them involved this early. I found them to actually be a lot more informative than doctors, since they often saw children much more often than their physicians.

    Hang in there. It’s messy at the beginning, but sometimes you just need time for everything to make sense.

    • dnoller

      Well AJ qualifies for the program. It’s bittersweet really … On one hand since she has some significant delays we have the right people to help us get through it … On the other hand I wish she never had to be assessed in the first place.

  • Tamara

    You can have normal EEGs and still have epilepsy. But the fact that she’s having normal EEGs is a really good thing. That means there’s no abnormal background spike and wave, a classic symptom of one of the harder childhood epilepsies.

    My son had a few normal EEGs at the very beginning but most of them have been abnormal. It took them 4 months to diagnose the Lennox-Gestaut pattern.

    Thinking of you. Praying.

    • dnoller

      Tamara, It is awful to read the length of time it took for your son to be diagnosed. I must admit the 3 weeks it has taken thus far has been driving me crazy. I understand brain disorders can take a long time to uncover, especially when they are so young… however It is very hard to “wait and see and test” – I just want answers.

      Normal EEGs are good and I can only hope this means the previous diagnosis was premature. However I fear at the moment that the Keppra screwed up the tests. We just had Early Intervention here and they found delays in cognitive, social and communication skills. While the delays are not synonymous with epilepsy – it obviously has made me worried. So I suppose time will tell.. hopefully sooner rather than later.

      Thank you by the way reading my blog, and giving me advice, your experiences and support – it has meant a lot. I was very happy to see your comments.

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