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Beans

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Reply with quote  #31 
How wonderful to hear!  I bet the good energy from being with other missionaries and also the service is helping keep him feeling good.  I know being around people like that helps me, anyway  [smile]
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Chelle

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Reply with quote  #32 
It has been long time since I posted on here.  My son now 13 goes in for a Upper GI and a PH Prob study this week Thursday.  We had a few good months back in the summer, than the Neuro started taking him off his medication back in Oct. and we have not been free of symptom /episodes for more than a week since that time.  They won't put him back on the all the medication he was on even thought he did GREAT on them.  Now he is having acid and vomit come back up so they put him on priolsec.    I had to pull him out of public school again even though he has a 504 plan because his anxiety was so high.  He is now anxiety medicine and in therapy to help him over come it....   After a bad night last night I have decided to go to the CVSA Conf. again this year.  
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Chelle
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ginny

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Reply with quote  #33 
I am sure you will find a lot of helpful information and support at the conference plus the doctor speed dating is wonderful.

I am sorry about the set back.  Hopefully you will get a new plan that will help.

Keep us updated?  Tough situation when you have been well for a time and then to have this monster return again.

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wynnak

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Reply with quote  #34 
Chelle, 

I'm glad you had a period of stability. I HATE when the doctors mess with what's working. We have fought ours to change our fella back. It was working before.. We don't like rocking the boat. We are motion sensitive [wink]! Luckily we usually have the charting to back up the request to change back. We try to give them the benefit of the doubt with changing or trying something else.. But, will ultimately do what is best for our guy. The doctor comes around after we discuss the pros and cons. 

Do you know WHY they wanted to change things up? Did they need to transition him to a different med? want to take him off to see if he was still having symptoms? 

Mine still shows signs of cycling even on the meds. He has nausea the first two weeks of the month on and off. As his meds wear off, it requires stronger anti- nausea. But his main med also tapers off and requires re-administration every 6 months.. so technically we know if his are working or not.

I wish there was more I could suggest for you. But besides if your not happy.. push to change and give them valid points.

Ginny does have a good point too, the doctor speed dating should be helpful. Wish I still lived closer so we could go. 

Keep us updated. We're pulling for you and your son.

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Blynda
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Chelle

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Reply with quote  #35 
Struggling with getting my son back to school after being sick. It is so hard to see him have anxiety on top of the stupid abdominal migraines. My once strong confident boy is now the opposite and it breaks my heart. He feels we are being mean to him when in reality we are trying to push him to overcome his fears . He is in 8th grade and we are running out of schooling options. So I am scrambling trying to find something for him that will be a good choice while trying to work. We have tried homeschooling, he doesn't want me to teach him, he doesn't do well just reading lessons to himself. I am looking at a couple different online schools. One is Paris Academy I am waiting to get more info from them emailed to me and a phone call . My heart is just breaking for him while trying to be strong and push him. Other people don't understand because they don't have kids with this chronic illness. Yes he is on medication and has a therapist but doesn't want to take the anxiety med or talk to the therapist, he says he doesn't need them I just need to pull him from school again this year and find an online school for him right a way.    I am waiting to hear back from his therapist today and from the school guidance counselor while listening to him cry while trying to do my job and get my work done.   This is so hard.  I tell him he needs to just do what I tell him and that we are here to support him, but he says no we aren't.

He was doing good at school until he got a virus/bacteria infection that made him sick and start a cycle, between all of if he has't been back to school in a almost two weeks. Which builds the anxiety up of what kids say to him or about him and the thought of trying to catch up on the missed work and assignments from teachers.  We have only gotten a little homework from two teachers.    It is just a struggle.    Thanks for listening to me vent.  I know each of us parents have our own struggle with our kids and that many are worse than others but I feel comfortable in sharing here, while I wait to professionals to call me and give me advice and hope I make the right choices.  

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Chelle
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wynnak

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Reply with quote  #36 
Oh Chelle,

My heart is breaking for you. I can very vividly picture what you are going through. I've been there. That was my son's sophomore year. That was when we changed to Connection Academy online. It was one of the toughest, yet smartest, yet hardest and still heart breakingest things I have done when it comes to schooling for my son. It took us a couple days to transition. But, then school was literally when we wanted it to be. The first six-months was really hard because we had to catch-up.. 

But here is what I learned.. Taking the stress of school away from the everyday was life changing. Fighting the school, the teachers, the stress.. had a huge affect on my son's well being. Don't get me wrong.. there was still stress, but it was significantly lower. We had a school that worked with us, teachers that worked with us. A 504 that worked. The holidays were time to catch up for the initial switch time.. but we could do school when it worked for us.. if he needed to sleep in. He did. If he was in the hospital.. he didn't miss school.

Taking school off the stress plate allowed us to focus on his health. That was amazing. He could focus on the grades he loved [smile]. And we focused on his health. It all worked out. We had hiccups.. but fighting the virtual school and teachers was so much less of a struggle than the traditional school, especially with a functioning 504 and coordinator that assisted.

I have since learned that there are combinations of homeschooling and virtual schooling. Charter schools that send out teachers instead of you going to the class. There are all kinds of options. It's find a fit that is good for you. We found that it helped manage his stress. He was also very isolated from his peers. So, I would recommend extracurricular activities or the school activities that they schedule or the local moms group for the school to keep the kids interacting. 

I know its a hard decision to make.. and even though ours was stable enough to return to school his senior year.. we kept him in the virtual school and sent him to college early. We all (my son included) feel we did what was best. It allowed him to alter his stress. Which allowed him and opportunity to recover and gain some control.

Do what you feel is best mom. As I tell my son, no decision is forever. You can change back. this may work for you now. And if you think it will. Give it a shot. Stay strong. 

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Chelle

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Reply with quote  #37 
Thank you for your support.   We have an appt with the Guidance Counselor from the school this morning, her plan is that he doesn't have to make up the work he has missed these past two weeks. Which will take off a lot of the pressure, but he still has missed the instruction and will be lost in class.  We have to come up with a plan he is willing to stick with, easier said when he is calm than when the anxiety monster takes over and scares him.

I looked into Connections a little bit but had heard that it was very time consuming for both the child/student and the parent, so I worry how would he stay caught up when he is having a episode.  He does have a 504 plan at the local school would I just send the online school a copy of that and they would modify it to fit the online schooling?  

We have been through so much with trying different school options, I fear we are running out of choice and he just needs to accecpt that it is not going to be easy but no matter which way we chose he as to push himself and get his education.  He talks a lot about becoming a chef and going to Culinary school.  

Still waiting to hear back from a few different  people today for some more answers and advice.  His therapist just called me back and we can get in this afternoon. Which is great.  I am never oing to get my work hours in today.  

I think what hurts the most is when he says the doesn't feel my support.  Oh that just cuts me sharp and painfully.  I have given up and changed things and fought for him over and over since dealing with this illness.  I know he is just scared and doesn't want me pushing him to do something and so that feel like I am being unsupported because I am not just taking away the Stressor like I have done in the past, thus leaving him feel alone and unsupported.  Which is not the truth at all, but that doesn't stop the sting of the pain of his words or the pain he feels either.  

I will keep posting updates as we navigate down this road. 

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Chelle
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wynnak

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Reply with quote  #38 
Some of the homeschool/charter school mix have classes that would fit the culinary options. That he is taking Home Ec type classes learning to cook from you.. considered a class. Ours even had math classes that required they go shopping with you to calculate the "best" buy per ounce as the math. Basic but real life experience. This might work for him if he likes the culinary stuff.. and for you since you have to make dinner and lunches and stuff any way.. have your own prep and sous chef. Still homeschool but can be combined with their online. Our local one was called Rio Valley Charter.

Connections was not time consuming once he was caught up. He did less school in a day then most kids do. He could go through all 7 classes in 4 hours in a regular day.. the portfolios were the pain. Our 504 was the best. Well, Connections 504 team was the best.. They suggested ways to help him.. They sent us a computer (desk top) that reads to him. Most of the text books were electronic so they could travel with us.. all of his teachers had authority to have him turn in quality not quantity of work. One of his teachers went through the whole semester of work with us and went.. oh huge reading assignment.. I'll drop that.. Or just do all the even number on your Math homework.. When times got overwhelming. 

Don't think you are running out of choices. There are a lot out there. You really can change any time. We change to Connections at the end of October.. they don't start until after Labor day. So even if you have to start over with them.. you aren't that far behind. Mid-term or semester changes are the best.. and he's 8th grade. High school goes on the record for colleges. So take a breathe and tell your self. We will figure it out. What ever happens you can bounce back. 

I always kept in my mind whatever happened I could fight for my son. I pushed for tutors if they wouldn't provide a teacher. At one point I got a tutor out side of the school to help him figure stuff out because school was not helping and it was stressing him out. There are kids out there that do that after school. Outside tutoring companies.. I know that there is ALWAYS a way. I just have to make it happen. 

I would reassure my son. If that was what he wanted. I made it happen. if it helped him relax and not stress.. I did [smile] I fought like a crazed Mamabear.  My son was pretty successful after that too. 

I never felt that Connections was time consuming for me. I liked that I could see where he was. If he was struggling, behind, his assignments.. the teachers confusing directions that I could call them out on.. you can be more in contact with the teacher than you ever have been. And I LOVED that.. I bet they didn't.. But I did. With it being a virtual school all contact is through email.. they can't ignore the contact like the traditional schools can.. [smile] I had written proof of conversations.. or lack there of.. 

Do you not have a copy of the 504? I keep copies of everything.. but then our dealings with my son's school required even recorded conversations.. I'm sure your school could send it, or you could get it from them when you sign the form to dis-enroll him when you transfer. Connections walked us through it. 

We found them on our own. We found other ones through other kids we met in the hospital. But you have time to find what works for you and your son. You have to know you aren't committed to one. Find the one that works for you. Keep asking people around you. Find local charter or homeschooling groups.. they are more and more popping up all the time. There are options, there is time, you'll get there. I'll help anyway I can. If you have questions about Connections.. We are alumni now.. so I can help you out if you'd like. Just let me know.

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wynnak

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Reply with quote  #39 

How did the meeting go, Chelle? 

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Blynda
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Chelle

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Reply with quote  #40 
Oh, I thought I wrote about it. He is back in school going full days. He went a half day the 1st day than full after that. He got sick like a week later and vomited at school a few times and I had to go get him. Worried an episode was standing but thank God nope, he went back to school the next day. He is doing good the teachers worked with him to get caught up or just skip missed assignments.
He played in the orchestra concert last night. I was very proud of him.
His therapist said he was releasing him because he pulled himself out of it. We can always call and get back in with him if we need to.

It is great to see him feeling better and acting like himself. He still has times when he is not 100%, and we try to keep him on a schedule and watch for signs. We are looking at getting him vocal cord therapy because he has a hard time breathing when running in gym class. It is always something.

Thanks for checking in with me.
Hope things are good for your family.

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Chelle
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wynnak

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Reply with quote  #41 
So glad to hear things are going better. My son has activity induced asthma.. just had a full blown asthma allergy episode that was super fun (sarcastic tone). But, we always are just happy that we didn't sit in infusion or a hospital room all day.. anything else we can deal with [smile]. Glad to hear goodthings!
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Blynda
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Chelle

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Reply with quote  #42 
Thanks, now he seems to just keep getting hurt at school.  Falling down, being tripped in the hall way, gym class getting hit with balls.  I know he has a low tolerance for pain.

 Today he fell and hurt his arm/write I am so tired of going to Dr. I hope it feels better in the morning, so I don't have to call his PCP and take him in for x-rays....  It is like the boy needs to be in a bubble to be protected.

It seems like things are always complicated and involves going to several doctors or repeat follow up visits. I know many have it worse than we do.  He has been going to the chiropractor a couple times a week, which I hope is helping him overall.  I know his neck feels better from playing Violin so that is good.

Guess I am just a tired mom tonight and wish we could all stay happy and healthy with out going to any type of a Dr. for at least a week....        

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Chelle
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Chelle

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Reply with quote  #43 
He was home sick for 2 days again this week, just not feeling well.  Head Migraine and nausea both days.  I tried to get him to go to school yesterday near the end of the day, but that didn't go well. Just ended up with him crying [bawl] [mad] and being very upset.  Which lead to me yelling telling him he needs to push himself on days he doesn't feel 100% because we know he will have days that he is to sick to go to school.  Parent teacher confs. were the night before and they all said the same thing he is a good, bright, student, ask questions, all positives, but he needs to be in school.  
So after we both calmed down, we had 2 Dr. Appts yesterday afternoon, Chiropractor for his adjustment hoping it would help ease his migraine and to see a speech therapist for his vocal cord dysfunction.  Which is not covered by Insurance.  Anyways his vocal cords don't work right so he lose his breath to fast when running etc in gym class.  So he needs to strength them and learn to breath from his diaphragm not his chest hopefully one 3 or so appt. and they will have him breathing better.  I feel like it just never ends with Appts,.

How do other parents deal with your child not feeling well and not getting them to push through the yuck to do what needs to be done?

I feel so bad for him, but how is he going to make it in life if he doesn't push himself.  He did get up and go to school today and only has an hour left to go. [smile]

I am at a loss and over react and things blow up.  Than I have a daughter with learning disability and dyslexia which makes every night a struggle with homework.  I took a PTO day today just to try and catch my breath and try to get rid of my week long headache/migraine.  I love my kids so much and I just wish life was easier for them and that I could handle things better and keep my self calm.  Sorry I needed to air out my thoughts and ask for help/suggestions as most people I know don't understand his chronic illness and all the anxiety that comes along everyday in our family.



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Chelle
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wynnak

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Reply with quote  #44 
Chelle,

Have you add PE to your son's 504/IEP? With an issue like that he should be on an alternate PE option. Walking instead of what the class is doing. Or stretching.. something that will allow the exercise without incurring the strain of breathing. Ask the specialist for options. At one point we had my son completely out of PE and on a Fitbit that tracked his movement. It was a goal based class.. and he had to only HIT his goal to "succeed"in the class. 

How do I cope? I used to run. A lot. Every day. That was my stress relief. Then.. I ruptured a tendon in my foot. Now.. I volunteer. For everything.. Which adds to my stress, but also makes me feel good and help others not have to struggle with things that we did. 
We lived though some truly awful things. We know how bad it can be. We know we are not there.. So from there, everything is good. There is nothing that we can't overcome, eventually. That is what I have to tell my self each day. Eventually. So I take each day, head on. We aren't guaranteed tomorrow's. Find your positive and hold on with both hands. Whatever it is.. you can handle it. You are the mom of warriors. You are a mamabear. Have your ups and downs.. you are human after all[smile]. But, take a breathe and get back on your horse.. it is what we do. We fight for our kids and what works for them. 

You'll find it.

Are you getting the school support for your daughter? Sometimes we get so focused on one.. it's hard to keep up on it all. Luckily my daughter was older, but it doesn't stop the guilt of letting her fend for herself during some rough times. 

I find making lists of what I need to do or handle helps me organize my processes or get them in motion. Not feeling so overwhelmed all the time with where to start.

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Blynda
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Chelle

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Reply with quote  #45 
Went to our check up with GI last Friday. He says he wishes he could help more, but all the test are normal and my son just has functional abdominal migraines. He suggested we try some supplements we tried IBGUARD didn’t seem to help. Now he says try these not all at the same time and see if any help. So I thought I would see if anyone here has tried them. FDguard, Iberogast ( I found an old post on this from many years ago, wounded if any one recently has tried it) & Hezthef's Tummy Tamers (that is the one we are thinking of trying first)
Any imputed is welcome.

My son now 14 has missed 30 days of school since Sept.we are switching him to online school next week. He has missed out on so many things because he is in pain or neasuaed, not much vomiting thank goodness. Just lots of Abdominal pain and some anxiety that comes from missing school. Wish someone could come up with more help for our kids and the adults.

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Chelle
"just wish there is a fix for our kids"
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