I just need to vent...

[Goofyluver]

I have been posting on these boards off and on for a while, about my experiences as a mother of a special needs kiddo and my experiences as an SLP.

Today...I come to you all as a mother. In need of what??? I don't really know. Support, I suppose.

My DS, Jon (11), has multiple medical diagnosis'. Apparently, this list is still growing.

First, Jon has agenesis of the corpus callosum (ACC), which is a condition in which the central portion of the brain, or the corpus callosum, never fully formed. This presents different in all people with the diagnosis, but in Jon, it affects him globally. He is delayed in speech and language, fine motor, gross motor, cognitively, emotionally, and socially. He is 11, but is developmentally approximately 7-8 years.

Jon also has static encephalopathy, meaning, neurologic dysfunction with no known cause.

In addition, Jon has been diagnosed as having sensory integration dysfunction, orthopedic issues (including plantar valgus feet), hypotonia, asthma, allergies, and depressed immune system.

He is followed by a multitude of doctors.

He has most recently been followed by an endocrinologist for delayed growth. He is no longer on the growth charts for height, and is barely on for weight.

He had a growth stimulation test about 2 1/2 weeks ago. A week and a half ago we got his diagnosis'...of hypopituitarism and adrenal insufficiency.

Adrenal insufficiency, in Jon's case, is a life threatening condition. I can't even bring myself to talk about it anymore.

It is dangerous for him to become ill, which he does so frequently because of his depressed immune system. I knew illness would come, and guess what...today, it did.

I thought I was prepared for dealing with his new situation. I thought I was strong. I thought I would be fine.

Today, we spent over 1/2 the day at the doctor after a sleepless night last night. Tonight will be another sleepless night for me.

I am terrified and scared for him. And I just needed to let someone know...if nothing else.

Right now, it feels as if this never ends. It's always something new. However, never before have I felt like his life was in danger.

As my baby sleeps behind me, I just needed to vent and cry for a while. I thought he was just a little bitty guy, and we could give him hormones and he would grow. Who knew it would end up like this?

Thank you for letting me vent. Just needed to write this down.

 

[livndisney]

I am so sorry this is happening. I will put you and your precious son in my prayers and thoughts. I know it is hard, please be strong. Vent away!


Cindee

 

[mrsksomeday]

(((Goofyluver))) , I am so sorry for what you and your little boy are going through. I am glad you came here to vent, you need to get these feelings out. We are here for you, post about this as often as you need to.

You, your little boy, and your family are in my thoughts and prayers.

 

[MousekaMaddi]

as I watch my sleeping DD5 Im sending u allllllll sorts of good vibes....... wishing u healing wishes and a hand to hold when youre afraid....... were here, drop on in

 

[eternaldisneyfan]

I'm so sorry that you have yet another thing to worry about-and a very scary one at that. You'll be in my prayers.

-Christamae

 

[alizesmom]

I'm sorry for all that you have to deal with. We're here to listen so vent as much as you need, you have every reason to. I will pray for you and your guy that things improve for both of you. Karen

 

[Goofyluver]

I went back and read my post and I was so negative! I am not usually that way.

I was overtired and overemotional. And geez...I sounded so negative.

I really rarely get that way anymore. Yesterday was just a difficult day, and I guess I needed to get that stuff out.

Thank you for all the prayers and well wishes.

 

[SandrainNC]

Your little sweetheart and you and your family are in my thoughts and prayers.



Sandra

 

[htmom]

 

[KirstenB]

I went back and read my post and I was so negative! I am not usually that way.

I was overtired and overemotional. And geez...I sounded so negative.

I really rarely get that way anymore. Yesterday was just a difficult day, and I guess I needed to get that stuff out.

Thank you for all the prayers and well wishes.

Are you kidding me!! I didn't see your post as negative at all. You have been such a tremendous help to many of us with special needs kiddos! I've heard you allude to Jon's challenges, but I had no idea he had so many, which is a testament to your grace in handling them. I'm praying for your family right now, and hope he stays healthy.

 

[alizesmom]

I went back and read my post and I was so negative! I am not usually that way.

I was overtired and overemotional. And geez...I sounded so negative.

I really rarely get that way anymore. Yesterday was just a difficult day, and I guess I needed to get that stuff out.

Thank you for all the prayers and well wishes.

Don't hold that stuff in. You aren't being negative. Occasionally we all need to vent. Karen

 

[Goofyluver]

Again, thank you so much for the prayers and well wishes.

We are having a better day...and got some good news from the doctors. Jonathon's cortisol levels are within the low average range...we were able to bump him up to a normal level with crisis treatment of large doses of his meds.

Basically, his body is healing itself with this illness!

Just a quickie explanation of what adrenal insufficiency is.

Jonathon has hypopituitarism, which means that his pituitary gland in his brain does not release the proper amount of regulatory hormones, including for him, growth hormones. This is why he is having growth issues.

The pituitary gland signals the adrenal glands (located on the kidneys) to release a chemical called cortisol. Jon's body is unable to release cortisol at this time, so we supply that chemical to his body artificially, or through meds.

Cortisol controls several key functions in our body, namely our body's response to any type of stress. Stress can be anything from illness, to injury, to a stressful situation.

Without cortisol, our body is not regulated. Our body can't heal itself, fight off infection, regulate body system including blood pressure, heart functioning, blood sugar, and on and on.

When a normal person becomes ill, their body produces extra cortisol in order to heal itself and regulate body functions.

Jon's body has no cortisol, and so when his body is stressed (he becomes ill, is injured, etc.) his body shuts down. Blood pressure, blood sugar, heart rate can be affected, in addition to all kinds of other yucky things, and if not addressed, the condition can be life threatening.

So, when Jon becomes ill, or goes into adrenal crisis as it is called, we have to immediately administer large doses of cortisol replacement to prevent his body from flipping out.

We were able to regulate his system with this illness so that he can heal and his body did not shut down.

First illness...dealt with successfully!

 

[mrsksomeday]

That is fantastic news!! Thank you so much for going through the explainations. It makes me understand things so much easier.

You and your family are still in my thoughts and prayers.

 

[pcparamedics01]

Everyone needs to vent and validate their issue in writing at times! I am sure we are all so greatful that you vented on these boards!! You are in my thoughts and prayers right now!!!!

 

[karynnix]

You are a mother and you have the RIGHT to hate what is happening to your child. Personally, I HATE ASPERGER'S SYNDROME. I hate it, I hate it, I HATE IT! You can come here to vent, cry, scream, and get it all out of your system. If anyone understands, believe me, we all do.

 

[pcparamedics01]

You are a mother and you have the RIGHT to hate what is happening to your child. Personally, I HATE ASPERGER'S SYNDROME. I hate it, I hate it, I HATE IT! You can come here to vent, cry, scream, and get it all out of your system. If anyone understands, believe me, we all do.

I hate, hate hate hate it too!!!!!!!!!! I am with ya. It take a toll on your body and mind at times!!!! I want a cure!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

[Goofyluver]

I agree karynnix! I hate what's happening right now to my baby.

He has gotten a fever again. And I'm just flat out terrified. He had been fever free for 24 hours...and all of a sudden, he is achy, feverish, and feeling crappilicious again.

He is so drugged right now that I'm terrified to give him anything else!

I just don't want HIM to see ME upset.

I was talking to my very best friend last night, and I was pretty upset after our long day. She is also the mother of a special needs kiddo.

She says it's okay for them to see us upset and hurting. But, I don't know how much to show. I'm not ready for that yet. I want Jon to know I'm strong for both of us...and that we'll get through this.

Sleepless night #3!

 

[Goofysmate]

Vent away and sending you & DS love and hugs

 

[Poppinsme]

My heart goes out to you.
I work in NICU/PICU and have taken care of many children with Adrenal Insufficiency, it sucks!
You sound like a great mom and your son is blessed to have you.

 

[Val]

Pixie dust, prayers and hugs from our house to yours...

For many years I sat on the "professional" side of the IEP meeting. I worked with many kids with disabilities and their parents. Little did I know how unprepared I was to deal with my own child and her special needs. My youngest DD10 is hard of hearing and has a multitude of diagnoses- otosclerosis, a malformation of the temporal bone, eustachian tube dysfunction and autoimmune inner ear disease. Last week she had her 4th ear surgery since December, and her 8th surgery in the last three years. No one can tell us her prognosis or offer us a treatment that has a decent outcome. They tell us her condition is "rare"...like that helps. Sometimes I feel so helpless, so alone, so frustrated, and so much a failure as a parent...I can't make her better and I can't tell her what will happen as her hearing continues to go down. She is scared, and I don't have any answers!

.....how do we deal? In spite of all my "professional" training, no one told me how to deal as a mom. It is only through listserves, friends of kids with similar conditions, and groups such as this group on the DIS that I know that I am not alone, that I can cope, and that my feelings are normal.

So, please VENT! Please share how you are doing, know that we are sending you our support (even if it is virtual). Moms are the strongest creature on earth.....not because we want to, but because the good Lord made us capable to deal with anything. It may not be fun or pretty, but we can do it!!

God Bless, more hugs, and give your little one lots of kisses from us!