Re: Aden update

[Guest guest]

Hi ,The good thing is that they found something than just telling you, well some kids.... Let's hope it's any easy fix. I think it was your lucky day that the IEP meeting was rescheduled. At this point the medical issues would most likely interfere with your focus on the educational issues. Fingers crossed, keep us posted.CharlyneSubject: Aden updateTo: Date: Friday, April 6, 2012, 11:56 AM

Hi all

I suppose an update is in order. We took Aden in for blood work to determine what was going on as far as the precious puberty was concerned. The first results came back with some unusual numbers so we had to do a test where they gave him a shot of a fertility drug and then drew blood an hour later to check his bodies response. Those numbers came back yesterday showing that there is a problem with his pituitary gland. Now we're waiting for insurance approval for an MRI. It looks like there are a couple of possibilities for what is going on. One is sort of a misfire where his pituitary thinks he's older than he is. The other is that there is a growth either inside of the pituitary or pressing on it that has triggered puberty. We are of course praying that it's not a growth. Im a bit of a wreck at the moment (I don't wait very well) not knowing whats going on.

Oh and just in case I didn't have enough stress the school decided to reschedule Aden's IEP meeting. It was supposed to be yesterday, but that didn't work for the psychologist so it will have to be after spring break. They were nice enough to let me know this on Tuesday afternoon when I picked Aden up for therapy. Nothing like being yanked around to up the stress level.

Hugs

Sent from my iPod

[Guest guest]

Wow, ! I hope it's not a growth. Please keep us posted!Sent from my iPhone

Hi all

I suppose an update is in order. We took Aden in for blood work to determine what was going on as far as the precious puberty was concerned. The first results came back with some unusual numbers so we had to do a test where they gave him a shot of a fertility drug and then drew blood an hour later to check his bodies response. Those numbers came back yesterday showing that there is a problem with his pituitary gland. Now we're waiting for insurance approval for an MRI. It looks like there are a couple of possibilities for what is going on. One is sort of a misfire where his pituitary thinks he's older than he is. The other is that there is a growth either inside of the pituitary or pressing on it that has triggered puberty. We are of course praying that it's not a growth. Im a bit of a wreck at the moment (I don't wait very well) not knowing whats going on.

Oh and just in case I didn't have enough stress the school decided to reschedule Aden's IEP meeting. It was supposed to be yesterday, but that didn't work for the psychologist so it will have to be after spring break. They were nice enough to let me know this on Tuesday afternoon when I picked Aden up for therapy. Nothing like being yanked around to up the stress level.

Hugs

Sent from my iPod

=

[Guest guest]

Hope there is no need for the info BUT if so perhaps it will lower your stress level to know:  My dh has had 2 pituitary tumors.  - 10 years apart.  Rather rare to have one before adolescence but even so, 90 plus % are benign.  The surgery , while not simple, leaves little outward mark - these days the surgeon is able to go up thru the roof of the mouth and into the sphenoid cavity.  Some people get black eyes-  some NOTHING shows.  My husband looked like a racoon after the first surgery - nothing for the 2nd.  HE was in the hospital an incredibly short time - matter of a few days.  

the biggest issue for him was to balanced and receive the proper amount of hormones since the master gland - in his case- never resumed most functioning.  To recap - this is not fearsome surgery like some our kids and family have had.  But let us hope that some other reason is found.  

 

Hi all

I suppose an update is in order. We took Aden in for blood work to determine what was going on as far as the precious puberty was concerned. The first results came back with some unusual numbers so we had to do a test where they gave him a shot of a fertility drug and then drew blood an hour later to check his bodies response. Those numbers came back yesterday showing that there is a problem with his pituitary gland. Now we're waiting for insurance approval for an MRI. It looks like there are a couple of possibilities for what is going on. One is sort of a misfire where his pituitary thinks he's older than he is. The other is that there is a growth either inside of the pituitary or pressing on it that has triggered puberty. We are of course praying that it's not a growth. Im a bit of a wreck at the moment (I don't wait very well) not knowing whats going on.

Oh and just in case I didn't have enough stress the school decided to reschedule Aden's IEP meeting. It was supposed to be yesterday, but that didn't work for the psychologist so it will have to be after spring break. They were nice enough to let me know this on Tuesday afternoon when I picked Aden up for therapy. Nothing like being yanked around to up the stress level.

Hugs

Sent from my iPod

-- Sara- different pathways lead to Nirvana.

[Guest guest]

, will be thinking about you and praying that everything works out for Aden. - mum to Matteo, 21 Da: Sara Cohen A: Inviato: Venerdì 6 Aprile 2012 21:57 Oggetto: Re: Aden update

Hope there is no need for the info BUT if so perhaps it will lower your stress level to know: My dh has had 2 pituitary tumors. - 10 years apart. Rather rare to have one before adolescence but even so, 90 plus % are benign. The surgery , while not simple, leaves little outward mark - these days the surgeon is able to go up thru the roof of the mouth and into the sphenoid cavity. Some people get black eyes- some NOTHING shows. My husband looked like a racoon after the first surgery - nothing for the 2nd. HE was in the hospital an incredibly short time - matter of a few days.

the biggest issue for him was to balanced and receive the proper amount of hormones since the master gland - in his case- never resumed most functioning. To recap - this is not fearsome surgery like some our kids and family have had. But let us hope that some other reason is found.

Hi all

I suppose an update is in order. We took Aden in for blood work to determine what was going on as far as the precious puberty was concerned. The first results came back with some unusual numbers so we had to do a test where they gave him a shot of a fertility drug and then drew blood an hour later to check his bodies response. Those numbers came back yesterday showing that there is a problem with his pituitary gland. Now we're waiting for insurance approval for an MRI. It looks like there are a couple of possibilities for what is going on. One is sort of a misfire where his pituitary thinks he's older than he is. The other is that there is a growth either inside of the pituitary or pressing on it that has triggered puberty. We are of course praying that it's not a growth. Im a bit of a wreck at the moment (I don't wait very well) not knowing whats going on.

Oh and just in case I didn't have enough stress the school decided to reschedule Aden's IEP meeting. It was supposed to be yesterday, but that didn't work for the psychologist so it will have to be after spring break. They were nice enough to let me know this on Tuesday afternoon when I picked Aden up for therapy. Nothing like being yanked around to up the stress level.

Hugs

Sent from my iPod

-- Sara- different pathways lead to Nirvana.

[Guest guest]

Chalk another one up to mommy intuition. Thank goodness we have good doctors who listen and investigate. On the topic of the IEP, I really think they are trying to throw me off. I told the teacher that we needed at least 48 hours before the IEP meeting to review the proposed IEP. Tuesday afternoon would have been the 48 hours. I still have not recieved a copy of the proposed IEP. I'm starting to wonder if there is something in the IEP that they really don't want me to notice (call me paranoid). But at least now we have a week to focus on Aden's health and well being before getting back into the ring with the school.

Hugs

To: Sent: Friday, April 6, 2012 10:58 AMSubject: Re: Aden update

Hi ,The good thing is that they found something than just telling you, well some kids.... Let's hope it's any easy fix. I think it was your lucky day that the IEP meeting was rescheduled. At this point the medical issues would most likely interfere with your focus on the educational issues. Fingers crossed, keep us posted.Charlyne

Subject: Aden updateTo: Date: Friday, April 6, 2012, 11:56 AM

Hi allI suppose an update is in order. We took Aden in for blood work to determine what was going on as far as the precious puberty was concerned. The first results came back with some unusual numbers so we had to do a test where they gave him a shot of a fertility drug and then drew blood an hour later to check his bodies response. Those numbers came back yesterday showing that there is a problem with his pituitary gland. Now we're waiting for insurance approval for an MRI. It looks like there are a couple of possibilities for what is going on. One is sort of a misfire where his pituitary thinks he's older than he is. The other is that there is a growth either inside of the pituitary or pressing on it that has triggered puberty. We are of course praying that it's not a growth. Im a bit of a wreck at the moment (I don't wait very well) not knowing whats going on. Oh and just in case I didn't have enough stress the school decided to

reschedule Aden's IEP meeting. It was supposed to be yesterday, but that didn't work for the psychologist so it will have to be after spring break. They were nice enough to let me know this on Tuesday afternoon when I picked Aden up for therapy. Nothing like being yanked around to up the stress level. HugsSent from my iPod

[Guest guest]

Hi Sara,

Thank you so much for the info. Its comforting to know someone has been through this and can answer questions from this side of it. Our doctors are great but they aren't the ones who have been through it with a family member.

Thanks

To: Sent: Friday, April 6, 2012 1:57 PMSubject: Re: Aden update

Hope there is no need for the info BUT if so perhaps it will lower your stress level to know: My dh has had 2 pituitary tumors. - 10 years apart. Rather rare to have one before adolescence but even so, 90 plus % are benign. The surgery , while not simple, leaves little outward mark - these days the surgeon is able to go up thru the roof of the mouth and into the sphenoid cavity. Some people get black eyes- some NOTHING shows. My husband looked like a racoon after the first surgery - nothing for the 2nd. HE was in the hospital an incredibly short time - matter of a few days.

the biggest issue for him was to balanced and receive the proper amount of hormones since the master gland - in his case- never resumed most functioning.

To recap - this is not fearsome surgery like some our kids and family have had. But let us hope that some other reason is found.

Hi allI suppose an update is in order. We took Aden in for blood work to determine what was going on as far as the precious puberty was concerned. The first results came back with some unusual numbers so we had to do a test where they gave him a shot of a fertility drug and then drew blood an hour later to check his bodies response. Those numbers came back yesterday showing that there is a problem with his pituitary gland. Now we're waiting for insurance approval for an MRI. It looks like there are a couple of possibilities for what is going on. One is sort of a misfire where his pituitary thinks he's older than he is. The other is that there is a growth either inside of the pituitary or pressing on it that has triggered puberty. We are of course praying that it's not a growth. Im a bit of a wreck at the moment (I don't wait very well) not knowing whats going on. Oh and just in case I didn't have

enough stress the school decided to reschedule Aden's IEP meeting. It was supposed to be yesterday, but that didn't work for the psychologist so it will have to be after spring break. They were nice enough to let me know this on Tuesday afternoon when I picked Aden up for therapy. Nothing like being yanked around to up the stress level. HugsSent from my iPod

-- Sara- different pathways lead to Nirvana.

[Guest guest]

, your gut is most likely correct. Email your key school team member to remind them that you haven't received the draft goals and objs. They may be hoping that you forgot. Charlyne

Subject: Aden updateTo: Date: Friday, April 6, 2012, 11:56 AM

Hi allI suppose an update is in order. We took Aden in for blood work to determine what was going on as far as the precious puberty was concerned. The first results came back with some unusual numbers so we had to do a test where they gave him a shot of a fertility drug and then drew blood an hour later to check his bodies response. Those numbers came back yesterday showing that there is a problem with his pituitary gland. Now we're waiting for insurance approval for an MRI. It looks like there are a couple of possibilities for what is going on. One is sort of a misfire where his pituitary thinks he's older than he is. The other is that there is a growth either inside of the pituitary or pressing on it that has triggered puberty. We are of course praying that it's not a growth. Im a bit of a wreck at the moment (I don't wait very well) not knowing whats going on. Oh and just in case I didn't have enough stress the school decided to

reschedule Aden's IEP meeting. It was supposed to be yesterday, but that didn't work for the psychologist so it will have to be after spring break. They were nice enough to let me know this on Tuesday afternoon when I picked Aden up for therapy. Nothing like being yanked around to up the stress level. HugsSent from my iPod

[Guest guest]

Don't forget that you can ask for 2 weeks notice for new dates. You're entitled to that 2 week written notice. I've used the failure to do that many times with many families as a legal technicality if needed. You can waive that right, and I've done that many times. But it is your decision. 

As for asking for the goals in advance - I did this every year. As soon as the meeting was proposed, I made my request in writing. If Andy had folks on his team more than one year, they knew ahead and emails went flying back and forth to craft the goals together.

However.If you don't receive anything ahead of time, you need to have a plan. Here was mine:When we all sat down and introductions were over, I would remind everyone that I had asked for the goals and reports to be provided before the meeting because *I* needed time to mull them over. I would share that I am not capable of processing the information, think about how it all goes together into a cogent day for Andy, and tweak things as needed on the spot. I needed to be able to process the information. Therefore, I " m happy to hear your verbal reports and hear about the proposals, but I will need to take it *all* home with me and we'll need to schedule another time to go over them.

I usually only had to do this once for them to realize I meant it. Its' about my ability to understand everything! Otherwise I am signing and stating I agree to things I don't understand. And that then becomes the statement you attach to the IEP.

Using educational words works well. I " m not an auditory learner. I don't process information well. You all have had time with this information and are familiar with it. I need to be able to read it to process it adequately.

Generally speaking (and yes there are exceptions!) teams don't want to do anything subversive. They may have directives from their department that you're not pleased with, but they didn't go into this profession to hurt people and not do well by a kid. So....the more reasonable you sound, the more flexibility you receive. 

IF They don't want to do that, remind them they rescheduled the meeting at the last minute wihtout providing you with 2 weeks written notice. (if that's true). It's tough being everyone's supervisor, isn't it?

Glad the medical side is going well!Take care,Joan

Joan Guthrie Medlen, MEd, RD

DownSyndromeNutrition.com

twitter: @jmedlen

 

Chalk another one up to mommy intuition. Thank goodness we have good doctors who listen and investigate. On the topic of the IEP, I really think they are trying to throw me off. I told the teacher that we needed at least 48 hours before the IEP meeting to review the proposed IEP. Tuesday afternoon would have been the 48 hours. I still have not recieved a copy of the proposed IEP. I'm starting to wonder if there is something in the IEP that they really don't want me to notice (call me paranoid). But at least now we have a week to focus on Aden's health and well being before getting back into the ring with the school.

 

Hugs

To: Sent: Friday, April 6, 2012 10:58 AM

Subject: Re: Aden update

 

Hi ,The good thing is that they found something than just telling you, well some kids.... Let's hope it's any easy fix. I think it was your lucky day that the IEP meeting was rescheduled. At this point the medical issues would most likely interfere with your focus on the educational issues. Fingers crossed, keep us posted.

Charlyne

Subject: Aden updateTo:

Date: Friday, April 6, 2012, 11:56 AM

 

Hi allI suppose an update is in order. We took Aden in for blood work to determine what was going on as far as the precious puberty was concerned. The first results came back with some unusual numbers so we had to do a test where they gave him a shot of a fertility drug and then drew blood an hour later to check his bodies response. Those numbers came back yesterday showing that there is a problem with his pituitary gland. Now we're waiting for insurance approval for an MRI. It looks like there are a couple of possibilities for what is going on. One is sort of a misfire where his pituitary thinks he's older than he is. The other is that there is a growth either inside of the pituitary or pressing on it that has triggered puberty. We are of course praying that it's not a growth. Im a bit of a wreck at the moment (I don't wait very well) not knowing whats going on.

Oh and just in case I didn't have enough stress the school decided to

reschedule Aden's IEP meeting. It was supposed to be yesterday, but that didn't work for the psychologist so it will have to be after spring break. They were nice enough to let me know this on Tuesday afternoon when I picked Aden up for therapy. Nothing like being yanked around to up the stress level.

HugsSent from my iPod

[Guest guest]

FYI-Joan, not all states have two week written notices. Each state has different timelines according to that state's regs. Charlyne

Subject: Aden updateTo:

Date: Friday, April 6, 2012, 11:56 AM

Hi allI suppose an update is in order. We took Aden in for blood work to determine what was going on as far as the precious puberty was concerned. The first results came back with some unusual numbers so we had to do a test where they gave him a shot of a fertility drug and then drew blood an hour later to check his bodies response. Those numbers came back yesterday showing that there is a problem with his pituitary gland. Now we're waiting for insurance approval for an MRI. It looks like there are a couple of possibilities for what is going on. One is sort of a misfire where his pituitary thinks he's older than he is. The other is that there is a growth either inside of the pituitary or pressing on it that has triggered puberty. We are of course praying that it's not a growth. Im a bit of a wreck at the moment (I don't wait very well) not knowing whats going on.

Oh and just in case I didn't have enough stress the school decided to

reschedule Aden's IEP meeting. It was supposed to be yesterday, but that didn't work for the psychologist so it will have to be after spring break. They were nice enough to let me know this on Tuesday afternoon when I picked Aden up for therapy. Nothing like being yanked around to up the stress level.

HugsSent from my iPod

[Guest guest]

thanks Charlyne. I only advocate here. You're right to point that out! 

Joan

Joan Guthrie Medlen, MEd, RD

DownSyndromeNutrition.com

twitter: @jmedlen

 

FYI-Joan, not all states have two week written notices. Each state has different timelines according to that state's regs.

Charlyne

Subject: Aden update

To:

Date: Friday, April 6, 2012, 11:56 AM

 

Hi allI suppose an update is in order. We took Aden in for blood work to determine what was going on as far as the precious puberty was concerned. The first results came back with some unusual numbers so we had to do a test where they gave him a shot of a fertility drug and then drew blood an hour later to check his bodies response. Those numbers came back yesterday showing that there is a problem with his pituitary gland. Now we're waiting for insurance approval for an MRI. It looks like there are a couple of possibilities for what is going on. One is sort of a misfire where his pituitary thinks he's older than he is. The other is that there is a growth either inside of the pituitary or pressing on it that has triggered puberty. We are of course praying that it's not a growth. Im a bit of a wreck at the moment (I don't wait very well) not knowing whats going on.

Oh and just in case I didn't have enough stress the school decided to

reschedule Aden's IEP meeting. It was supposed to be yesterday, but that didn't work for the psychologist so it will have to be after spring break. They were nice enough to let me know this on Tuesday afternoon when I picked Aden up for therapy. Nothing like being yanked around to up the stress level.

HugsSent from my iPod