I am so stressed! Can anyone offer any insight or even just nice words?

[Ashley1021]

I love my son, just the way he is, but man he's giving us a run for our money lately. He's 9 months old. He has been having random seizure for the past month and a half. We see a neurologist next week for an eeg, and my doctor is concerned about a possible genetic disorder because apparently the location and looks of his birthmarks are something they look for accompanied with seizures.. So I'm dealing with the fact that he might have some incurable thing. I will love him just the way he is, but it's stressful.

On top of that he gets reoccurring ear infections. We have an appt with the ent next week regarding getting tubes put in his ears, but at the moment he has an ear infection, with a fever all while breaking three teeth.. (He has 5 already.) he doesn't sleep, ever. Maybe two hours at a time if I'm lucky. But that includes butt patting and shushing, which leads to no sleep for me. I'm utterly exhausted and working 35 hours a week. My house is a mess, I need to do laundry, and I just wanna plop in bed, actually go to sleep and wake up and everything be better. Thanks for reading if you got this far.

 

[SurpriseBub]

I have no advice or experience... Just a virtual I'm so sorry you are going through this worry- I can't even imagine. You obviously love your baby, and he is lucky to have you! I hope you get good news at both doctor appointments. And I hope you get some sleep. You are coping with a lot, and really deserve good news hopefully someone with greater insight will come along.

 

[smoore]

I'm so sorry and hope you get some answers with these specialists.

Do you have any family close by who would watch him for a night so you could truly rest up?

 

[gingmg]

I'm sorry you have so many worries right now. My heart goes out to you. Sending big hugs and strength your way. Lack of sleep is stressful enough, everything feels harder when you havent slept enough. I hope your son starts feeling better from the ear infections and that you can get some answers as to what is causing the seizures. Quite often seizures can be well controlled, despite what ever the under lying cause is. You will get through this. Your son is so lucky to have such a wonderful loving mother.

 

[Dreambaby69]

Awwwwww sweety . Wish I could hug u right now . U have a lot on ur plate. Hope ur boy gets better soon. Just going to echo what the other lady asked , do u have family around that can help u, even if it just for few hours so that u can rest up ?

 

[LoveCakes]

No advice I'm afraid but lots of hugs

Even if you do get a diagnosis at least then you can make arrangements and plan care. The limbo is always worse but you should get some answers soon I hope.

 

[Beanonorder]

Sorry you have to go through this! That is really tough. I don't have any advice either but sending lots of hugs. I hope you get some answers next week.

 

[sethsmummy]

sending you lots and lots of hugs. i too have a baby who seems to always be ill. hugs hugs and more hugs xxxx

 

[superfrizbee]

Big hugs hun. I know how scary it is to have the neuros involved. I hope you get some answers very soon and a positive plan in place. X

 

[Ashley1021]

Thanks so much for the kind words ladies! I do have my mom to help, but when she does take him I end up trying to get the cleaning and laundry done. I just can't shut down my brain and relax! I feel like it's been this way for 9 months. I am looking forward to getting some answers, hopefully everything will be fine, but if not at least I will know for sure. I'm getting excited for this weekend, we are going up to a resort a couple of hours away tomorrow to spend time with OH family. Which means people will be ooing and ahhing over him, so I will get a bit of a break.

 

[annanouska]

it will get better ( says sleep deprived mum to almost 3 yo).

My son has epilepsy, brain damage , loads of other bizarre things too. We are also going through genetics to see if one thing causes all his issues. Waiting and not knowing is hard, wondering what it may be is even harder! Record what seizures you can make notes of things too. Regards to sleep lots of seizure activity can make it hard to switch off

I'm about if u ever need a PM x

 

[Ashley1021]

Just thought I would fill you all in on our appointment today. And I just need to vent
My DS EEG showed abnormalities in his left side of the brain. He will need to be put on keppra twice a day for at least two years to hopefully stop them. We will be having a brain mri to rule out any further issues in the next couple of weeks. I'm relieved we have a diagnosis, (complex partial seizures) but am so scared as well.

 

[annanouska]

glad you got some answers. Keppra is tolerated very differently in different children as with most epi medicines. Just keep an eye on how he does on it. There are some great epilepsy online communities x

 

[Ashley1021]

He has been SO crabby on it. He's only has five or so doses so maybe it's just a coincidence, but he is so moody.

 

[Prinny_1]

Sending you hugs xxx