Diagnosis and heart break

[Anonymous]

Well today they did an EEG on Hunter and we found he has Infantile Spasms, which are basically seizures. Theres a lot of tests we need to run now to learn more, but basically hes probably going to always have delays.

He does definately have reflux though which was shown on the Upper GI.

I am just at a really sad place right now, but I know its my job to take care of this little one because God doesnt give us more than we can handle. Please pray for Hunter and our family….we will be needing it in the weeks and months and years to come.

Thank you.

[Anonymous]

Dawn

We will keep you and Hunter and your family in our prayers. I hope that the tests give you some answers… i hope that it is nothing and it resolves itself quickly. I do not know anything about infantile seizures but i think that Lori has said on several occasions that her oldest daughter started having seizures all of the sudden adn then they stopped…

Keep us informed as to what is going on!

[Anonymous]

Hi Dawn – I’m sorry to hear this – maybe like Thais said, Lori (S&H
Mom) can give you more information on her situation with her older
daughter? Definitely keep us posted on the tests. We’ll be thinking of
you.

[Anonymous]

I am so sorry, Dawn. Hang in there and know that everything to this point that has been found wrong or was a possibility with Dylan, we were always given worst case scenario, and things have always turned out much better than expected.

Hang in there, and keep doing what you are doing! You are doing a great job!

[Anonymous]

Hi Dawn,

I’m so sorry to hear about Hunter and I will be praying for you and your family. I hope that the remainder of the tests come back hopeful. Like Ann Marie said, they do always tell you the worst-case scenario. I remember a while back that you posted that Hunter would do this thing where he would look like he was punched in the gut. Did they say that those were acutally seizures, and not Sandifer’s?

I think that Thais mentioned that my daughter has seizures as well. They are not infantile spasms though. She has febrile seizures. We are hoping that she will outgrown them- they say most kids do outgrown them by age 5 or 6. They told us that not all seizures cause brain damage, and so we hold on to that hope, and I hope the same for your precious Hunter. Hopefully they can control his seizures with meds, as we do with my daughter. My daughter is two and a half, and is otherwise a normal child.

I think that someone else on this site has a nephew with infantile spasms but I can’t remember who. Maybe they will post as well.

If you ever need to talk, please feel free to email me: [email protected]. There is a wonderful book by the Jonh’s Hopkins hospital…let me know if you ever want more information.

My thoughts and prayers are with you.

Lori

s&h’s mum2006-2-3 8:19:5

[Anonymous]

Oh I am so sorry! I feel so bad for Hunter and your family. That is just so much to deal with. My nephew who is 9 months old has seizures about 100 times a day (they found this through testing repeatedly) and he did get pretty bad for a while. Now he is doing a lot better and is working on some developmental issues. He is just trying to catch up now. I know how much my brother in law and sister in law are going through and I wish this just didn’t happen at all. I will be praying for your family in this difficult time!

[Anonymous]

Thanks you all. Yes they said the “punching in the gut” thing was seizures and not Sandifer’s. I am so upset because I mentioned it to every doctor we came into contact with and most of them even saw an episode of it and they still kept calling it Sandifer’s because of his reflux. I will definitely keep a positive mind about a good outcome, its just so hard sometimes. Its difficult to see a little baby going through all of this and hes so sweet and innocent. I will keep you posted on any new findings. Right now we just want Hunter to get over this stupid stomach virus completely and be ok on his seziure meds so we can COME HOME! We have been in the hospital since Sunday.

[Anonymous]

My family will most certainly keep you all in our nightly prayers. May He bless and keep you all close to His heart

Donna

[Anonymous]

WE ARE HOME NOW!!!! 🙂 Happy day!

[Anonymous]

Welcome home! Babies tend to do better at home than in the stupid hospitals!

[Anonymous]

So glad to hear you’re home!

[Anonymous]

Yea – welcome home!

[Author]

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