T&P please....

jenniferroshto · February 2014

Not LO related, but the other day DS woke up feeling weird. He explained it to me as his legs and arms were weak and his head hurt (the top of his head, not forehead). He has complained with a headache like this off and on for a while now. He couldn't walk more than two steps without stumbling or falling.

He already has been diagnosed with hypotonia (low muscle tone). He has always been behind in physical development but he's a straight A student and is well ahead of his grade level at school academically. He also has one eye that he is almost blind in and doesn't use at all. He's 8 and had perfect vision until he was 5.

When the episode happened we rushed him to ER. His pulse ox was low when we arrived and would randomly spike and go down. Then after 2 hours it all stopped as suddenly as it started and it was like nothing ever happened.

He is still complaining off and on of his head hurting and when he does his words sound kind of slurred and he seems off balance . We go for an MRI to start a complete neurological eval on the 24th.

Sorry about the long post. Any thoughts and prayers would be appreciated!

Chellbell20 · February 2014

T&Ps! I hope the MRI can give you some answers and you can work out a fix or plan for him!

awc1986 · February 2014

So sorry you're going through this. Sounds like you've got a tough little cookie on your hands though! Let us know how everything goes.

Xath · February 2014

I hope you find good answers in your MRI. Glad he's ok for now.

ajsweeton · February 2014

I'm so sorry you're going through this. Send thoughts and prayers your way. I hope that the MRI has some answers for you as well.

Kris2011RN · February 2014

Oh no! I hope they figure out what's wrong!

shaunamw · February 2014

Sending prayers.

jenniferroshto · February 2014

Babybarlow2014 said:
Oh, no! I'm so sorry!
Do you think he may have had a seizure? That's what my dd feels like after one. She's also low tone/legally blind.
Hope the MRI gives answers!

That's one of the things they will be looking for. We have a nephew that has them but his are only in his sleep for the most part and cause him to just stare into space. I've noticed this about DS before also but just associated it with him ignoring me.

DS is a very deep sleeper and even at 8 we still have accidents almost every night. We tried Oxybutinin to help with that but he's allergic to it.

kat8805 · February 2014

It's possible its seizures. I had them when I was younger, I remember my first as I was mostly awake for it. It was odd, like I had lost control of my face, I was confused and dazed. After it was over, I had a headache and felt limp. My parents saw my first one while we were on vacation driving through New Mexico. Luckily we were near a medical center. They hooked my up to an IV and waited it out. I think I slept for a bit after that one, and woke up slightly aware of happenings during my seizure, but not much after. I woke up weak, and tired with a massive headache. All my others I barely remember, but the aftermath was always the same, same pounding head ache and limp body. After numerous sleep studies and scans, they were termed benign. Medication was suggested but my mom refused since at the time, all it did was potentially delay any seizures, not actually treat them and relieve me of them.
I was about your DS's age when I had my first, and they had completely stopped within a few years.

I hope you can get some answers and relief for your DS. Thinking of you.

CamrynnsMommy · February 2014

Oh man, I'm so so sorry! I'll be praying for you and DS.

We went through seizures with DD2, she had several petit mal and grand mal seizures. We spent a week at Children's Hospital doing CT scans, lumbar punctures, MRIs. They never found the cause and just put her on medication. I completely understand how overwhelming and worrisome this can be.

If you have any questions or just need to vent you can PM me.

mrstengallonhat1 · February 2014

So sorry you're going through this. Sending lots of T&Ps your way!

lavendergiraffes · February 2014

Sorry you are going through this but I pray you get answers soon!

sparklingdiamond · February 2014

I am sorry you are dealing with this :-( Sending lots of T&Ps your way!

laurblum · February 2014

So sorry to hear this! I wish they could see him sooner so you don't have to wait so much longer!!!! Good luck, sending T&P's you way.

Bootsie327 · February 2014

I'm so sorry you're going through this and I hope you soon get the answers you're looking for so that he can be on his way to treating the problem!

kramja01 · February 2014

ugh, I'm so sorry you are going through this! T and Ps to your family!

LoveIsAll25 · February 2014

Im so sorry! I hope the MRI will give you some answers.

andoll8 · February 2014

oh no! i hope the MRI provides some much needed answers for you, DH, and DS.

love and light are coming your way.

sopsongbird · February 2014

Thoughts and prayers being sent your way! I hope that they are able to figure out what is going on with him!

CiaoBabyOH · February 2014

Sending T&Ps your way!

Turn4Cindy · February 2014

I'm sorry you're going through this. I hope you get some answers! T&Ps

ns1 · February 2014

Sending T & P your way. I hope you find answers and solutions soon!

AnnieA75 · February 2014

Sending T&Ps your way! I hope your DS is ok.

momthatlifts · February 2014

Oh man prayers are with you and you're little man

krlovell · February 2014

Omgosh!! How scary for all of you! Thoughts and prayers for your family!!

LunaBug924 · February 2014

Thinking of you and your family. I hope you get some answers soon! (((Hugs))) for you and DS.

yvanehtnioj · February 2014

thinking of you!

meli1025 · February 2014

T&P's are with you, poor baby! I hope everything is ok.

lv2011 · February 2014

Sorry you're going through this! I hope you get some answers and a course for treatment soon.

sws684 · February 2014

T&Ps!!!! Gets LOTS of opinions!

Unknown · February 2014

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MinaE01 · February 2014

Aw, poor guy. I hope that the MRI gives you some answers so you can move forward with treatment (if necessary). I'll be thinking of you and hoping for the best possible outcome.

Shell+Bell · February 2014

Thinking of you and DS and hoping for the best!!

FlemDance · February 2014

It's so hard trying to find medical answers and not have any idea what's going on. Thoughts and prayers to you!

MissLadyTay · February 2014

I am so sorry you are going through this. I'll be thinking about your son.

jenniferroshto · February 2014

Thanks guys! This has been a long ongoing ordeal with him. All the different doctors find explanations for all these things as seperate issues rather than considering them together. Its terrifying to see him like that and not know what to do or how to help him. Its also very frustrating that it takes getting to this point for someone to take it seriously.I will keep everyone updated!