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I Don't know What To Do Any Dr's Rn's Therapists here?

post #1 of 15
Thread Starter 
I am really at my wits end , Ive mentioned that my 10 yr old son is ill , and some of you know he has a disorder suspected to be an autism spectrum disorder . This is going to be long sorry for the length.

When my son was 4 he stopped eating for 4 months due to a choking incident we kept him alive on Pedia Sure , when he was in the first grade he was being bullied and started vomiting all the time and loosing the ability to eat he associated food with vomiting, we happen to move during this and all the symptoms stopped.

We moved to VT 2 yrs ago , we had an eval on my son that stated he needed a one to one aid in school , the school refused to provide one they say it breeds dependence. My son this school year has been struggling to meet his educational expectations and all the social expectations that go along with being in school.

in February we asked for an evaluation of Kristopher because he for the first time appeared to be loosing skills , example he lost the ability to spell his name in total Kris opposed to Kristopher , he also couldn't remember or retain the steps to preform tasks like picking up his room or washing himself and operating our front door .

The school granted us an observation ( a step below an evaluation ) at the observation their Dr. told us that Kristopher was doing these things because its part of his executive function deficits , he said that school and home need to take as much stress off Kristopher as we can we need to act as if we are his frontal lobe , he said if the stress isn't taken off that we will loose him he openness his willing ness his good heart. None of there own doctors recommendations were put into play .

In March we had state wide no child left behind 4th grade testing , this caused alot of anxiety in Kristopher , he became fixated on pass or fail even thought we explained that it wasn't that sort of test.He started vomiting , and loosing control of his bowles when the testing started. it would happen a few times a week either he would be sent home sick, or he would be up all night sick crying that he was afraid to go to school , or he would be fine for a while and then on a Sunday night get all upset and sick.

At the start of April he got sick at school and soiled himself at school , he was sent home and he began an awful downward slide , violent bowel accidents violent vomiting , and refusing to eat. we brought him to the doctor who said it was school based anxiety , she prescribed adult diapers told us to encourage food and if he didn't eat for 3 days she would prescribe Ensure.

Three days came and went we called the Dr on a Monday and told her he hadn't eaten , she refused to give him the Ensure , she told us to wait until our next appointment the following Monday , that would have made 10 days without eating, In total Kristopher went 8 solid days without eating food or a food supplement. The Dr's theory was if he got hungry enough he would eat. It was us that put a stop to this we put him on Ensure ourselves .

He went from 130 lbs to 114 in approx 2 weeks , We brought him in for a weight check and she insisted on questioning Kristopher multiple times about why he isn't eating each time he told her what he was telling us , then she wanted to speak to him alone she questioned him again , again he said the same thing , on the 4th volley of questions he said fine Ill eat , she reply , well hes willing to eat so I'm not comfortable prescribing the Ensure.

Kristopher doesn't have the ability to make these kind of statements with the understanding behind it , he told her what she wanted to hear so she would leave him alone.

Then she wanted to send us to a behavioralist , we went to the behavioralist he told us that we should homeschool Kristopher or he will have to make the best of it and go back to school, he said that schools don't have the funds for a tutor or aid , that is not supposed to be his consideration he consideration is supposed to be my son. I explained to him that if we homeschool Kristopher in this state he is not entitled to his special services like OT PT Speech etc thats when he said Kristopher will have to make the best of it. Kristopher laid on the behavioralist couch with his hat over his face he didn't speak much to him.When we left Kristopher said so mom he wants me to just live with it?

We came home and I had , had enough ...I found a new pediatrician ( first appointment date today) who has experience in children with developmental delays , I also managed to find the therapist ( first appointment date yesterday ) that Kristopher worked with when he was 4 during that not eating incident , it was a huge thing for me because she was from NH we didn't know she was in VT now or we would have gone straight to her.

Thursday that just past , the school contacted us by letter saying that the original pediatrician and the behaviorlist say now that Kristopher does not have anxiety and hes fine to return to school , Kristopher hasn't had more than 3 bites of solid food in almost 6 weeks , he is still in a diaper , and he still is terrified about going to school not one thing changed.

Friday the principal and the school nurse came to the door demanding to see Kristopher , now we live in an apartment building there is a security door , there is also no bell so if you want in you have to call us. The security door really made them mad they thought we put it there to stop them , they called from the front porch demanding to see Kristopher , Kristopher was asleep on the couch in the livingroom , which is right next to our front door . I was not going to let my child who is afraid of school to wake up with the principal standing over him. I told the principal that if she wanted to set a time on Monday when he was awake I would be glad to have her meet with Kristopher , she refused said she didn't need to make an appointment to do her job. Well if you want to get past the security door you do. While all of this is going on We are in a meeting with one of the disability agencies , and our daughter Erin is having an OT session , Later that day we were informed that the reason the principal was there was because she felt that Kristopher wasn't really ill and that he was truant. We pointed out that Kristopher was seen by professionals that day both professionals reported to the principal that Kristopher was indeed ill , and sleeping at the time.

Monday this week , they had a meeting about Kristopher at the school , in the meeting minutes they are now backing away from truancy , and are now talking about having child services take a look to see if its a "non classic form of abuse" that has lead to Kristopher's illness.

Tuesday ( this was a good day ) We went to see the therapist that worked with Kristopher when he was 4 , she sees anxiety about school she doesn't think he should just go back she thinks there needs to be changes made to his educational plan and then ease him back.

Wednesday we went to the new pediatrician , she prescribed the Ensure and the diapers along with a letter of medical necessity. She thinks maybe a new school placement for Kristopher is needed .

Now the therapist and the Dr are going to have a confab and talk about whats best for Kristopher , meanwhile the school wants to nail us for some warped form of abuse now that they actually believe that hes ill , the original pediatrician is under investigation from the medical practice board ( not our doing one of the agencies reported her ) because she let Kristopher suffer so much. and the behavioralist was a wasted trip not only that he is quoted by the school as saying he saw no anxiety and Kristopher should go back to school.

Kristopher is now 111 lbs , he still is not eating more than a few bites once a day , he is still in a diaper , hes now having nightmares about school and food .......and I just don't know what to do anymore.

Its long its complex and its personal but someone somewhere may know something that we can do .

I just don't understand how they can even think is "a non classic form of abuse" that made Kristopher ill what in the heck does that mean?

I have a list that Kristopher and I made about his anxiety he talked I wrote it is pervasive through out his entire school day , things I wasn't even aware of.

Ill stop now I'm so tired confused.............
post #2 of 15
Dana, it sounds like you have your hands full. I really have no advice( I'm sorry I wish that I did)but you and Kristopher are in my thoughts and prayers. Please keep us informed on how he is doing and you too. Just remember this is the best place in the world to have a shoulder to cry on and a sounding board. We care
post #3 of 15
Sounds just like the principle and the nurse are trying to shift the blame on you instead of them selfs. You might need to find a good shrink that might find out whats going on. Your son should not have to suffer because of others. I wish ya'll the best.
post #4 of 15
I sorry don't have any advice for you, but I will keep you and your little guy in my prayers
post #5 of 15
Oh my god, I can't believe that they are treating you and kristopher like that - thats appalling! Do you have someone that is close to you and that knows Kristopher's problems that you feel comfortable with and trust to support you?

I really hate it when doctors and professionals don't do their job - that is wrong. Ever thought about seeking the advice of a lawyer for malpractice - becase they did not do their job properly, Kristopher's problems got worse, his anxiety got worse because the doctors did not tell the principal what the problem was and so she felt she had to do all this stuff. That is so sad.

I wish I could help you You guys are all in my thoughts.
post #6 of 15
hello i really am sorry to hear what you and your son are goin through,i cant imagine what this must be like, i dont have any advice but just wanted to let you know you are both in my thoughts.
post #7 of 15
These people need to stop covering their own a$$e$ and start helping you and Kristopher get a handle on all of this . It makes me sick to my stomach to read what Kristopher has had to go through to get some help, big kudos to you for getting a second opinion and not being intimidated by the Principal. Get letters off the new therapist and paediatrician to back you up and write to your local health board, try and persuade Kristopher to talk to the paediatrician or therapist about the list you and he made so there is an official record of his anxiety concerning school. With the attitude of the Principal it's no wonder Kristopher doesn't want to go back.

I'm sorry you and Kristopher are having to go through this, I hope he's feeling better soon.
post #8 of 15
Thread Starter 
Thank you for the support , we have contacted a lawyer Ill keep you all posted.
post #9 of 15
Under the ADA laws, you can request an ADA liason, and special care from the schools, and they cannot refuse.
You also are required to have an evaluation and conference once a quarter.
Contact your school district to request the liason. While you're at it, tell them about the treatment you have been receiving. Remind them this is a federal law that your lawyer would be VERY happy to help them enforce!

post #10 of 15
Thread Starter 
As of right now , the state child protective services is coming Monday afternoon on a report of Truancy , there is still the possiability that they will come again on abuse ....we spoke to the new pediatrition that says hes not truant or abused , that we should welcome the state that it will help us to prove that this school is not the correct placement for Kristopher.

One thing that keeps going through my mind is how are we ever going to work with this school department again in regard to our other children in light of how aweful they have been over Kristopher.

I will call the ADA I know that our town is in violation because they have no assigned ADA , but I will see what I can do.

thanks everyone
post #11 of 15
I can't believe that they are accusing you of abuse. If they do come by and Kristopher is there, it will stress him even more, and I don't like the idea of that.

But it will help if the doctor supports you all the way though.

All you guys are in my thoughts.
post #12 of 15
Dana I feel for you so much, you and Kristopher are in my prayers.
post #13 of 15
Dana, I am so sorry. Its horrible when such happens - and as if it wasn't enough there are stupid government officials on it.

Dana, if the doctors say it is not abuse, but it is the school, have them make their own written statements with THEIR signature and in their own office's paper. Very official. Keep photocopies, and if possible turn it into an affidavit.

What sweets says is true. My mother is guidance counselor and we are familiar with the federal laws on this subject. Also try to check out the state laws of VT on this. It never hurts.

Do that, and if they do nothing, make both a written and verbal statement on the idea that if you do not receive what federal and state law guarantees you, they will hear from your lawyer. Normally such a thing puts them to move their rear ends. Otherwise it can cause a scandal in the Department of Education.

And if the Principal or school officials want to enter the house, remind them that, entering a residence without consent or a warrant signed by a judge or being a law enforcement official with great suspicions is called in Spanish "Allanamiento de Morada" (Invasion of Dwelling") and it is a criminal felony. If the problem comes to high point call your lawyer and tell them that they can enter only with your lawyer present. The law guarantees one's right to prevent unreasonable/illegal searches.

And I thought that such behavior was limited to Puerto Rico.
post #14 of 15
Dana, I am so sorry for the hell your son and family are going through. You asked for a nurse's advice so I hope I can be of some help. I am not an expert in autisim, but I do have expertise in Mental Health. 1) Has your son had a full medical eval? Including MRI or CT Scan? This is done to rule out any physiological problems. 2)You don't mention if he is on any meds, or if he has he been on meds before. I really think he should see a child psycho-pharmacoligst, an MD who is a psychiatrist, who has special study in medications. He/She could evaluate him.3) Also has he been in psychotherapy? This would be helpful in teaching him how to cope with his illness. Finally, all your immediate family members need counseling, do to the enormus stress this has put on the family. All the above is expensive, but some would be covered under your insurance, if you have it. I think it's important to get an eval separate from the school as they seem to have a different agenda. Don't know how it is in VT of course, but in NY any child with a special need can not be refused help. I would also check your rights under the Americans with Disability Act, this is for people with all disabilities. mental or physical. Just put a search in and you will find the government site. Please feel free to PM for any help, even if it's just a shoulder to cry on.
post #15 of 15
Dana, I am so sorry that you, Kristopher and your family are going through this.

Something you might want to try is addressing all the issues he's having from the bottom up, that is, addressing the most basic things first. For example,

The first thing that strikes me is Kristopher's weight loss. From your description, it sounds like he is exhibiting anorectic behaviour, if not anorexia itself. You may have to ask for him to be given a naso-gastric tube. It doesn't hurt (I had one for 3 months myself) and you will be able to give him as much Ensure as he needs. He can drink what he can himself and then you can supplement. Is Ensure a complete meal replacememt? Can you get Sustagen in the USA? I don't know if it's any better or not. Can he eat anything really mashed up?

The next thing is him having to wear a diaper. As if going to school wasn't hard enough for him, he has to wear a diaper. He may need meds that will calm his stomach and bowel enough that he regains control. Remember that diahorreah can cause him to become dehydrated so get him to sip drinks thruought the day.

Have you tried antidepressants wiht him? I usually wouldn't even mention it in someone so young but it may just help. Also, is he on any anti-anxiety meds? This will also help to stop the vomiting and diahorreah.

Would it be any benefit to Kristopher to go to a special school? It's just that most of his problems seem to stem from going to school and keeping up. You might want to look into the different schools in your area and see if there's one that caters for Kristopher's needs.

About the non-classic form of abuse. What they're saying is that instead of you hitting him, sexually abusing him or emotionally abusing him (the classic forms of abuse) you are abusing him by doing things such as withdrawing food, giving him laxatives (hence the diahorreah) giving him emetics to make him vomit, stopping him from going to school, not letting him speak etc. etc. I, for one minute, do not believe any of this and am appalled they have even suggested it.

I want to wish you good luck in finding solutions for Kristopher. he sounds like a wonderful, intelligent child who only deserves the best life has to offer.

(((((((((((((((Lots of hugs for you and Khristopher)))))))))))))
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