update on Lane

MistiBray2BE · January 2012

Don't know if you guys remember me..Haven't written on here in a while, guess its been close to 3 months, but I have been a "lurker". Just can't find the time to get on desktop! I am amazed to see how strong you ladies are and you encourage me to try to be the best mom that I can be to my special little boy A little background for those of you that don't know our story, Lane is 10 months old and I was induced 3.5 weeks early via vaginal delivery for toxemia (borderline). He was sent to NICU the night he was born and from there things went downhill. Lane had a collapsed lung, several bleeds in his brain, and started to have seizures. He was compromised of O2 somewhere in the delivery process, they say and he had nucchal cord x1. They were never able to pinpoint one certain thing that caused all of his problems. He was placed on Phenobarbitol at birth which stopped his seizures, then at 9 months he was put on Keppra for some breakthrough seizures he was having. He had an EEG at 9 months which did not show any seizure activity but I described to the Neurologist what hes been doing and they tell me it sounds like a seizure. They only did a 20 minute EEG. Since then, the Keppra has made them less often. But what Lane does when he has these "seizures" is kindof jumps like he is startled, then he kind of throws his arms in the air and at the same time he turns his head to the left side and his eyes kind of "jump" toward the left. This usually lasts anywhere from 10-15 seconds. Can anyone relate to having a baby with seizures and does this sound familiar to anyone? He goes back to Neuro in a month and they will talk about doing a longer EEG, and maybe cutting back some on the Phenobarb and going up on the Keppra.

Also, as far his developmental progress, he is very behind. He isn't sitting up on his own, Has rolled over from stomach to back but not back to stomach. He will occasionally throw his arms out at things to reach, but not all the time, and he doesnt hold things or grab for them. He also still has poor head control and tends to look down and close his eyes alot. He doesnt babble or make a whole lot of noise, nor does he hardly ever cry. He does laugh out loud quite a bit, but alot of times its seems as if he is "laughing out in space".

The doctors have not given him a diagnosis yet. They tell us that they do not know what the future holds, which is the hardest part. I feel like Lane shows no interest in sitting, standing, etc.

Does anyone have a similar story? Now that Lane is getting older I have some questions and concerns. I posted a while back and got a few responses, but some feedback would be nice Also if anyone knows any Neurologists (pediatric) in the TN area, any recommendations would be nice.

Thanks ladies!!

st.augbride · January 2012

While we haven't dealt with seizures, we've dealt with developmental delays and movement/sensory disorder related issues. We too have yet to get a diagnosis, though I'm not sure it matters as much now as long as we get him the therapy he needs. I just want to say that out of all the docs we have worked with, I have found two to be by far the most helpful and wanted to recommend that you consider seeing them if you haven't already: 1) a pediatric physiatrist (movement disorder doc) and 2) a developmental pediatrician. These docs have been the only ones to focus on the big picture and help us figure out what we should and should not be doing. They also help coordinate care with all the other specialists and work closely with neurologists. You probably already have heard that, but it's the best resource we've found so far, and both can have long waitlists so better to start now if you haven't already.

MistiBray2BE · January 2012

Thank you for your advice. Just curious, does the developmental pediatrician take the place of your regular pediatrician, and do you have to have a referral for the pediatric physiatrist?? I have been searching the web for a peds physiatrist and am having a hard time finding one. Lane also goes to Siskin Early learning ctr 2 days a week and has PT there. Thanks!

MaxandRuby · January 2012

I do not have time to write much at the moment but I'm in TN and DS2's neurologist is Dr. Sharpe. He is in Franklin, TN. He either is or used to be associated with Vanderbilt but started his own practice. We've had 2 appointments with him so far. I really like him. He came recommended to me and now I'm recommending him. :-)

ally81698 · January 2012

I'm not in your exact situation, but my daughter is on the same medications (pheno and keppra). She had a stroke when she was born, which led to her seizures. The phenobarb alone did not help control them so they added keppra. To my knowledge, we have not seen her have any seizures since (she is a little over 9 months now). However, I am very concerned about these meds and their effect on developmental abilities (she is delayed). There have been many studies that show how phenobarb causes development delays (esp in motor skills) and learning disabilities. If our neurologist does not start weaning her soon, we are going to see another neurologist for a 3rd opinion. I wish you lots of luck...it is very scary, I know!

MistiBray2BE · January 2012

Ally,

It is very scary!

I have heard so many bad things about Phenobarb, but what do you do? They have to have it and every time I bring up wanting my baby off of it they say the benefits outweigh the side effects. My question is...how do they know hes having seizures, the EEG didnt show any. They told me that for his condition, it is normal for him to have some spastic movements every now and then (he did have a few small "spells" during the EEG and the dr said those werent seizure activity) He has done well on the Keppra. They see him again in a few weeks and they will more than likely order another EEG (maybe a longer one) and they are talking about lessening the Phenobarb and going up a little on the Keppra (Lane is maxed out for his weight on the Phenobarb). I am getting to the point where I am wanting a second opinion also. Looking for some recommendations. Thanks for your help! Also, just curious, do the meds make your baby constipated? and, how do you give them? (with milk, by theirself?)

Thanks, Misti

ally81698 · January 2012

I hear ya?It?s like would we rather have her walking a little later in life or have seizures? If I were you, I would absolutely ask for a longer EEG. I?m very surprised they only did one for 20 minutes. We?ve had 3 of them (besides the 2 weeks she was on one in the NICU). The first was in June ? it was 1-hour and it came back a little spastic so they ordered a 48-hour one which we had in July. That one came back OK. We had another 1-hour one in September and it also came back normal. You should request a 24-hour one, if possible? that way, they can see more. Also make sure it?s video so that if he does have one, they will be able to see his movements. I know this may sound crazy, but I watched a lot of youtube videos of infant seizures and also infantile spasms (at one point I was paranoid of that). It allowed me to see what different types of seizures looked like in children so I knew what to be aware of. Also, try to video tape your son?s episodes ? it can only help.

What do you mean that he is max?d out on his weight with phenobarb? Is there a certain amount they can be taking for their weight? I?m very curious. To answer your questions, no ? she isn?t constipated any more (she was before solids were introduced). We give them to her straight (no mixing).

I would recommend a second opinion ? it surely can?t hurt!

Want a personalized experience?

update on Lane

Re: update on Lane

Choose Another Board

Search Boards