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So we added in a half dose of Bactrim last week to her abx regime of Omnicef and Biaxin. She made it to school Monday for half day, yesterday for 38 minutes, and completely refused to go today. This wouldn't be such a major deal except she has already missed most of the year because her EoE was flaring. We were finally getting that under control and this was supposed to be her first week of full days. Now this....

 

She says she is scared to go into the classroom but can't explain why. this all sounds so familiar.....

 

I'm really feeling like I can't do this again. I have not had a break since we had to pull her out in 1/11 for the year; I spent the next school year dealing with my cancer and subsequent infection-which i still have-and now all this. She made it to the first three days of school in August and that was it. I know I am being really selfish but I literally feel like I am drowning. The only place I have really been in the last two years is to the grocery store and church. Church is a battle every Sunday. Oh let's not forget all the Doctor's appts.

 

I am not being proactive with own health. I want to go the gym again, I want to volunteer again, I want to have lunch with friends, I want to live instead of exist.

Edited by ShaesMom
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So we added in a half dose of Bactrim last week to her abx regime of Omnicef and Biaxin. She made it to school Monday for half day, yesterday for 38 minutes, and completely refused to go today. This wouldn't be such a major deal except she has already missed most of the year because her EoE was flaring. We were finally getting that under control and this was supposed to be her first week of full days. Now this....

 

She says she is scared to go into the classroom but can't explain why. this all sounds so familiar.....

 

I'm really feeling like I can't do this again. I have not had a break since we had to pull her out in 1/11 for the year; I spent the next school year dealing with my cancer and subsequent infection-which i still have-and now all this. She made it to the first three days of school in August and that was it. I know I am being really selfish but I literally feel like I am drowning. The only place I have really been in the last two years is to the grocery store and church. Church is a battle every Sunday. Oh let's not forget all the Doctor's appts.

 

I am not being proactive with own health. I want to go the gym again, I want to volunteer again, I want to have lunch with friends, I want to live instead of exist.

 

 

What else have you tried besides antibiotics?

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So we added in a half dose of Bactrim last week to her abx regime of Omnicef and Biaxin. She made it to school Monday for half day, yesterday for 38 minutes, and completely refused to go today. This wouldn't be such a major deal except she has already missed most of the year because her EoE was flaring. We were finally getting that under control and this was supposed to be her first week of full days. Now this....

 

She says she is scared to go into the classroom but can't explain why. this all sounds so familiar.....

 

I'm really feeling like I can't do this again. I have not had a break since we had to pull her out in 1/11 for the year; I spent the next school year dealing with my cancer and subsequent infection-which i still have-and now all this. She made it to the first three days of school in August and that was it. I know I am being really selfish but I literally feel like I am drowning. The only place I have really been in the last two years is to the grocery store and church. Church is a battle every Sunday. Oh let's not forget all the Doctor's appts.

 

I am not being proactive with own health. I want to go the gym again, I want to volunteer again, I want to have lunch with friends, I want to live instead of exist.

 

What else have you tried besides antibiotics?

 

GSE, Artemesia, Magnesium, Acidophilus, monthly IVIG

Edited by ShaesMom
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So we added in a half dose of Bactrim last week to her abx regime of Omnicef and Biaxin. She made it to school Monday for half day, yesterday for 38 minutes, and completely refused to go today. This wouldn't be such a major deal except she has already missed most of the year because her EoE was flaring. We were finally getting that under control and this was supposed to be her first week of full days. Now this....

 

She says she is scared to go into the classroom but can't explain why. this all sounds so familiar.....

 

I'm really feeling like I can't do this again. I have not had a break since we had to pull her out in 1/11 for the year; I spent the next school year dealing with my cancer and subsequent infection-which i still have-and now all this. She made it to the first three days of school in August and that was it. I know I am being really selfish but I literally feel like I am drowning. The only place I have really been in the last two years is to the grocery store and church. Church is a battle every Sunday. Oh let's not forget all the Doctor's appts.

 

I am not being proactive with own health. I want to go the gym again, I want to volunteer again, I want to have lunch with friends, I want to live instead of exist.

 

 

Boy--sounds all too familiar. Evan made the first two days and then crashed and was hospitalized. He is going to school now--not full days, but has settled into working most of the time in smaller sped environment. The fear of the classroom--ugh--offering my prayers of support, 'cuz when they refuse it is next to impossible. Dawn

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Same boat here - it's awful. It's costing me a small fortune on the rewards used to persuade my daughter to attend school for the limited time expected, and she still needs to be forced most days. This is with her choosing the easiest time for her. We both have bruises from Monday's fiasco - that day she said she would rather be placed in mental institution than attend school (she wasn't kidding at the time). She has a severe phobia of vomiting and threw up Thursday evening - which made things even more difficult for her. The school called our psychologist on Monday to complain that she is not attending (increasing) enough hours, even though I've successfully gotten her to school every day (since our meeting 9/27) for atleast 90 min- 2 1/2hrs, except during IVIG and the day after she vomited.

 

So, I'm also offering prayers of support!!!!

Edited by philamom
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I'm so sorry you're in such a low spot. It's such a tough call between not pushing too hard and not pushing hard enough. The addition of the abx might be triggering a herx. But still, you're entitled to some time to take care of yourself. In fact, taking care of yourself is actually taking care of Shae too, since she needs her mother more than she needs just about anything else!

 

What would you/she do if tomorrow morning you needed to go to the hospital for a treatment and no one else could take care of her? Would you both manage to get her to school? To make it through a few hours? If the answer is yes, then you need to try to push for that. Because you DO need treatment - it's called friend/gym/life therapy - and it isn't a luxury. It's an necessity. You can't burn the candle at both ends forever. You need nourishment. You can't help your family from the middle of a nervous breakdown. Trust me on that one. Or from hospice either.

 

I think it was DCmom who taught me the best response for when my kids were over anxious and trying to weasel out of going to school. Instead of reasoning with them, listing all the reasons their fears were exaggerated, trying to put a good spin on things - I now say "You'll handle it. No matter what happens, you'll handle it." They hate hearing this but it really takes the steam out of their arguments.

 

By now, with kids in the swing of things, I'm sure its even harder for your daughter to imagine jumping in. But there's only one way to get over it and that's by going through it. I hope you both find a way through soon - you'll be in my thoughts.

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Thank you for reminding me that I am not alone. We've tried everything in the past to get her there when she is like this and we have found nothing works. No amount of bribes or reasoning or screaming and yelling. When she makes up her mind nothing is going to change it. When she was younger we could pick her up thrown her in the car and just go. Now she is just to big for me to carry and likes to try opening the car doors when we are moving. Just to dangerous.

 

I don't think she has any desire to try this morning either. It is the lack of at least trying that I find so frustrating. Last week we had no issues whatsoever like this.

 

I'm supposed to be at the Doctor's office in an hour. I already canceled the appt with my ID doc this afternoon because his office is an hour away.

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You will be in my prayers tonight. You do need time for yourself which I know is hard when you have a child that needs you. I truly believe that you need to throw them into the situation without turning back and no guilt. I know my dd was younger at the time but it started in kindergarten where all of a sudden does not want to go to school and crying screaming and all crazy. Got her back but had to drive one way with tears and was stuck driving because I gave in. Ifirst grade got upset about something on bus and did not want to take it or go to a school. Drive her all year to make her happy. She would not pick out clothes in morning, crying and all. This year we have her pick out clothes night before and she has tried the will you pick me up and I say no bc of ds schedule. I say no absolutely not bc it's impossible where truely it is. But being tough and leaving no choice has helped her greatly. Dd is definetly milder then your child but she was and Is the my way or the highway attitude but If she has no choice and I show no pity and stall rough and strong she has gotten better. I defiantly think that she knew where to push my buttons and I was always at her side but now it's I will ignore her and tell her to be strong and she must see that I am serious. In the beginning it hurt me bc I am not kntk that tough love but it has helped her tk be stronger and depend on herself.. J will give all hugs and kisses but during the morning or when needed I'm like the drill Sargon and over time this is what she needs.

Mar

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So we added in a half dose of Bactrim last week to her abx regime of Omnicef and Biaxin. She made it to school Monday for half day, yesterday for 38 minutes, and completely refused to go today. This wouldn't be such a major deal except she has already missed most of the year because her EoE was flaring. We were finally getting that under control and this was supposed to be her first week of full days. Now this....

 

She says she is scared to go into the classroom but can't explain why. this all sounds so familiar.....

 

I'm really feeling like I can't do this again. I have not had a break since we had to pull her out in 1/11 for the year; I spent the next school year dealing with my cancer and subsequent infection-which i still have-and now all this. She made it to the first three days of school in August and that was it. I know I am being really selfish but I literally feel like I am drowning. The only place I have really been in the last two years is to the grocery store and church. Church is a battle every Sunday. Oh let's not forget all the Doctor's appts.

 

I am not being proactive with own health. I want to go the gym again, I want to volunteer again, I want to have lunch with friends, I want to live instead of exist.

 

What else have you tried besides antibiotics?

 

GSE, Artemesia, Magnesium, Acidophilus, monthly IVIG

 

I don't want to cause a firestorm of debate. However, this sounds as if the current therapies are having very little impact to improve you or your daughter's life. Existing is not life. For you or her. I have not had a child so debilitated that he cannot leave the house or attend school. I can only imagine the stress that would place on a family, including the child! I would be open to trying some different medications many might consider under the "psychiatric" realm. SSRI's or other mood controlling agents. You describe an extreme situation...may need more than complementary, antibiotic or alternative treatments. Many of our children have improved and enjoy a better quality of life with low dose SSRI's, Lamictal and other psychiatric medications available.

 

A good pediatric psychiatrist or neuro-psychologist should be able to help you and her. The current plan does not seem to be working...just my observation from reading. I can't imagine this life is enjoyed any more by your daughter than it is for you.This level of social anxiety, fear, separation or... whatever it is... to cause this level of disability calls for more extreme measures, in my opinion. There are medications that can help...it is not a cop out to use these medications (if they work). It is called getting your family's life back.

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So we added in a half dose of Bactrim last week to her abx regime of Omnicef and Biaxin. She made it to school Monday for half day, yesterday for 38 minutes, and completely refused to go today. This wouldn't be such a major deal except she has already missed most of the year because her EoE was flaring. We were finally getting that under control and this was supposed to be her first week of full days. Now this....

 

She says she is scared to go into the classroom but can't explain why. this all sounds so familiar.....

 

I'm really feeling like I can't do this again. I have not had a break since we had to pull her out in 1/11 for the year; I spent the next school year dealing with my cancer and subsequent infection-which i still have-and now all this. She made it to the first three days of school in August and that was it. I know I am being really selfish but I literally feel like I am drowning. The only place I have really been in the last two years is to the grocery store and church. Church is a battle every Sunday. Oh let's not forget all the Doctor's appts.

 

I am not being proactive with own health. I want to go the gym again, I want to volunteer again, I want to have lunch with friends, I want to live instead of exist.

 

What else have you tried besides antibiotics?

 

GSE, Artemesia, Magnesium, Acidophilus, monthly IVIG

 

I don't want to cause a firestorm of debate. However, this sounds as if the current therapies are having very little impact to improve you or your daughter's life. Existing is not life. For you or her. I have not had a child so debilitated that he cannot leave the house or attend school. I can only imagine the stress that would place on a family, including the child! I would be open to trying some different medications many might consider under the "psychiatric" realm. SSRI's or other mood controlling agents. You describe an extreme situation...may need more than complementary, antibiotic or alternative treatments. Many of our children have improved and enjoy a better quality of life with low dose SSRI's, Lamictal and other psychiatric medications available.

 

A good pediatric psychiatrist or neuro-psychologist should be able to help you and her. The current plan does not seem to be working...just my observation from reading. I can't imagine this life is enjoyed any more by your daughter than it is for you.This level of social anxiety, fear, separation or... whatever it is... to cause this level of disability calls for more extreme measures, in my opinion. There are medications that can help...it is not a cop out to use these medications (if they work). It is called getting your family's life back.

 

I appreciate your advice but I think somewhere along the line you have misunderstood my post and current situation. My daughter had four days of being unable to attend school because of fear of the classroom. This behavior started about a week after adding a new abx to regime for Bartonella. She was herxing and I know that. DD also has PANDAS and this level of behavior is typical. How lucky you are to have never dealt with it on a personal level. I know first hand that SSRI's are not a solution for her.

 

DD also has an illness called Eosinophlic Eosphagitis which was flaring from food trials and seasonal allergies through the summer. EoE causes vomiting, extreme fatigue, pain, nausea and the feeling of having something stuck in your throat. She was finally coming out of this and had been going half to 3/4 days.

 

In January '11, we had to pull dd out of school because she was extremely sick with a Pseudomonas infection in her tonsils. Of course this wasn't discovered until her tonsils were removed in July '11 after months of frustration that her Docs couldn't figure out what was wrong with her. She was not out of school because of severe anxiety at that time.

 

Sept '11 I had a double mastectomy which turned into 5 surgeries over 8 weeks due to various complications including a Mycobactrium infection which had me sitting on the couch until April of this year. I am still battling the infection which won't seem to go away. Yesterday I had my first IVIG because Docs determined I am immune deficient-just like dd. So we were IV buddies yesterday.

 

I also have a son and husband who are being treated for lyme. So someone is always sick around here.

 

So i am feeling the way I am because it has been one thing after another without any breaks in between.

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I am so sorry to read of the bleak situation you are in. I haven't had cancer but have also been dealing with hospitalizations for my own health while also caring for Bart/PANDAS DD. I completely understand your fear (inability?, terror?, hopelessness?) at dealing with ANYTHING let alone this. I don't really have any advice but know that you are not alone.

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I am so sorry to read of the bleak situation you are in. I haven't had cancer but have also been dealing with hospitalizations for my own health while also caring for Bart/PANDAS DD. I completely understand your fear (inability?, terror?, hopelessness?) at dealing with ANYTHING let alone this. I don't really have any advice but know that you are not alone.

 

Thanks FallingApart. I'm sorry to hear that you are also dealing with your own health issues. You really put into words what I couldn't with your post the the other day. So "thank you" for sharing your own vunerability with us.

 

 

Mar-thank you as well all your words of encouragement. Prayer is much needed for all of us.

Edited by ShaesMom
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I'm so sorry she's having school anxiety! I'm biased, but after rages and the suicidal talk, I think its the worst. People who haven't really dealt with it think its something you can control - its not. I too am having health struggles right now - not cancer, but pain all over my body, brain fog and intermittent fatigue. And Alex is going to school about half the time - worse than last spring, so we're going backwards in that regard. So I get your frustration and hopelessness.

 

It's sounds like its definitely herx related. Have you talked to your doctor about extra detox? When Alex herxed badly with Cipro, we gave him Burbur and it helped some. There are lots of options, although I imagine you're feeling too tired to deal with figuring it out right now, and that's ok.

 

You are in my prayers and I will email you soon to talk more. Hang in there! You are not alone.

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