Noah's night last night

[Guest guest]

Tiny update on Noah.

Fasting blood glucose came back normal. Yeah!!!

Neurology appointment found nothing abnormal. Noah was diagnosed with migraines.

Noah was referred out for a sleep study, which could

possibly lead to him having his tonsils and adenoids being removed.

Seems like an easy enough fix. We go for that pulmonary appointment on Tuesday.

This week has continued to be a rough one for Noah. Behavior is not normal Noah. He slept very hard Tuesday night only to

be a bear to wake Wednesday morning.

Wednesday he was a behavior nightmare. So we opted to put him to bed early. He is still forgetting work at school and

now lying about it…then breaking into tears. I think he is embarrassed. Wednesday, after being put to bed at 7pm he came back down saying his back

was on fire. I pulled his shirt up

because he said there were bumps and low and behold he had scabs and puffed

areas from newly scratched places on his shoulder blades. I know you all have said this has

happened to you…but this is the first time Noah has broken skin. (Also, his legs are itching like crazy.) I put some oil-based cream (ELTA) on to

stop the burn for him, and sent him to bed. Now last night, he got up for water. When he did not return, I got up to

check on him and he was on the couch saying he could not drink because his

hands were shaking too much. I had

to hold his water for him so he could.

I got him some crackers too, and wrapped him up. Slowly we made our way back upstairs.

What the heck though?

Any thoughts?

A few days ago when I called Pitt, the directive when the

behavior was the issue was to take him to the ER. But this is not behavior… I do have a call in to Pitt…

Thanks for any ideas!

[Guest guest]

Hi ,

It is terrible that Noah is having a tough time right now. Could it be that he is overwhelmed with his illness, symptoms, changes at home and the emotional stress of it all?

I am curious why on Wednesday it was necessary to get him up at all? Could he stay in bed when he is feeling that tired and low? If he is forgetting schoolwork and then lying and then crying, I would wonder if he is feeling too much pressure in that regard? Can his school workload be lightened?

Certainly Noah's physical symptoms warrant a conversation, if not a visit with his physicians. It does not seem right that Noah should be in such discomfort. It is good that you have a call in to his Pitt doctors. Noah deserves to feel better! And you deserve some peace of mind.

Chris

mother of Joe (32), UC '87, J-pouch '99, PSC, ...

[Guest guest]

,

I am so sorry that Noah is having a rough go. It just isn't fair.

I wish I could do more than send good thoughts your way. Since I

can't, all I can do to help is to promise to keep raising funds for

research so that we can spare more kids and parents this nightmare.

If I work hard enough, maybe we can even find better treatment in

time to help all the kids and parents in this group.

We have to have that hope.

I know you are a lion for your cub ! Hang in there.

Lee

[Guest guest]

,

It is very difficult to have a sick child, my heart goes out to you. I have just

a few comments, although I wish I had a few answers.

Suzanne has experienced great fatigue from her diseases. The doctors are

treating it as though it is from IBD, but I have heard from this group it could

be from PSC as well. Dr. Szigethy at Children's has put her on wellburtin for

fatigue and it has really helped. Not enough for her to go to school, but enough

for her to start leading a more normalized 17 year old life. Have you meet with

her yet? She can really help with both the fatigue and behavior problems as

well. I really trust her and strongly suggest that you meet with her. I am so

thankful she's part of Children's GI team.

If I am understanding your post correctly, Children's said to take him to the

ER. What became of that?

FOr the itching - when Suzanne starts to itch we try an Oil of Olay product that

is a moisturizing wash that you put on after you shower or bath and rinse it off

like you would conditioner. The comarison to conditioner is even made on the

bottle. It has heped her, so I suspect some of her itching is not PSC related.

Also, the GIs at Chldren's have given her Atrax on an as needed basis for the

itching. It puts her to sleep, but really helps her.

Suzanne has many episodes of hand shaking. We too went to see specialist to no

avail. I am beginning to think now that it may be early signs of dehydration.

You said that Noah got up to get a drink of water when his hands were shaking, I

wonder if that isn't the case with him as well. When Suzanne shakes I always ask

her about when she ate and drank last. Of course, since she's still battling the

frequency of bowel movements associated with IBD I am sure that plays into it as

well. Just a thought.

Good luck; I am always asking God to give us caregivers the strength know the

right thing to do and say.

LINDA

-------------- Original message ----------------------

He slept very hard Tuesday night only to be a bear to wake

> Wednesday morning.

his

> hands were shaking too much. I had to hold his water for him so he

> could.

A few days ago when I called Pitt, the directive when the behavior was

> the issue was to take him to the ER.

>

Tiny update on Noah.

Fasting blood glucose came back normal. Yeah!!!

Neurology appointment found nothing abnormal. Noah was diagnosed with migraines.

Noah was referred out for a sleep study, which could

possibly lead to him having his tonsils and adenoids being removed.

Seems like an easy enough fix. We go for that pulmonary appointment on Tuesday.

This week has continued to be a rough one for Noah. Behavior is not normal Noah. He slept very hard Tuesday night only to

be a bear to wake Wednesday morning.

Wednesday he was a behavior nightmare. So we opted to put him to bed early. He is still forgetting work at school and

now lying about it…then breaking into tears. I think he is embarrassed. Wednesday, after being put to bed at 7pm he came back down saying his back

was on fire. I pulled his shirt up

because he said there were bumps and low and behold he had scabs and puffed

areas from newly scratched places on his shoulder blades. I know you all have said this has

happened to you…but this is the first time Noah has broken skin. (Also, his legs are itching like crazy.) I put some oil-based cream (ELTA) on to

stop the burn for him, and sent him to bed. Now last night, he got up for water. When he did not return, I got up to

check on him and he was on the couch saying he could not drink because his

hands were shaking too much. I had

to hold his water for him so he could.

I got him some crackers too, and wrapped him up. Slowly we made our way back upstairs.

What the heck though?

Any thoughts?

A few days ago when I called Pitt, the directive when the

behavior was the issue was to take him to the ER. But this is not behavior… I do have a call in to Pitt…

Thanks for any ideas!

[Guest guest]

We did not end up taking Noah to the ER. Amy, his coordinator called

me back and said that he needed to be seen during an acute phase.

They don't believe it is liver related though. I think that is

hogwash. I think we just keep drawing the bloodwork too far after the

symptoms stop.

I think the suggestion to keep him home during these times might not

be a bad one. I don't know why we did wake him up to be honest. I

did keep him home on Friday...but of course he was a mess because he

had 3 tests...and felt anxious to be missing them. I think

homeschooling or something is in his future.

We have not seen the liver dept. psychiatrist, but I would have

thought they would recommend that. I may ask Amy this week if we

talk. We go out Tuesday for the Pulmonary stuff, so...I don't

know...I feel like his treatment is spinning out of control. I LOVE

CHP! I just think we are seeing them follow a book more than NOAH.

They believe that he " should " have 7-10 years from dx to tx. Well

that is all well and good...but what about the fact that he has

fibrosis and in some areas near bridging fibrosis on his bx? I don't

know...I just am totally at a loss for where we are in all of this. I

want him better! Within 3 months time his liver went from 2

fingerbreadths below coastal margin to unable to feel...and as Keljo

slipped and said he was worried it was " shriveled " ...but no one will

image it. Slivka's recommendation was for yearly imaging...even if by

ultrasound...and I can't get that. Frustrations abound!

But they did say they won't even have that conversation until we

figure out what is going on with all the brainless stuff and the shaking.

[Guest guest]

I understand that the recommendation for kidney disease patients - who

often have intractable itching - is the " soak and smear. " The idea is

that you soak in a bath twice a day - with lukewarm water, nothing too

hot. 10 mins in the morning, then smear regular skin cream on, 10 mins

in the evening, same. Supposedly most itching will go away if you can

keep up the routine for a week and then stick with it. It sounds too

simple to be true but it's actually more difficult than you would think

to do it every morning and evening, but it sounds like in Noah's case

it might be worth it. Best of luck, , I know you'll find

something to make him feel better! tx,

nina

I know you all have said this

> has happened to you.but this is the first time Noah has broken skin.

> (Also, his legs are itching like crazy.)