kclynn

Mommachaos I think it ok to start without, but really, your son needs a 504. Within a couple weeks you will probably be able to note specific things that he may need other than what you have listed, if any. But the purpose of the 504 is also to put it on record - your son has a medical conditon and needs, and NO ONE better forget! And it certainly would be easier for her and the school to not have to bother with a case conference. And the changes you request CAN be made immediately through her. Lets say the 504 says no outside recess over 90 degrees but you discover that is too hot on the playground so you want it changed to 85. The committee can't meet for a couple weeks, but what in the world would stop them from making that adjustment immediately. I could be wrong, but I think she doesn't want to make the effort. Others who have had younger children with disabilities can probably offer better advise.

Hi Hope, Where did you have him tested? I totally agree with you about changing directions when one isn't working. Will he be able to attend school? My son is going to try. He is pretty up and down but his recovery time has been consistently good the last couple of months (consistent isn't a word you usually hear with pots is it?) I don't expect it will stay that way but trying to live in the moment to enjoy what we have now. He is out at an RC track with his Dad and last week went to ride on a BMX track which he has always wanted to do. Never would I have guessed we would have this level of activity from last winter but it was finding the right Dr. and medications. Keep the faith. He has to work hard on moderating how much he can do. He had physical therapy today and she worked him pretty hard. He came home and put his feet up till it was time to go tonight. When I say he put his feet up, what I mean is he did that but every once in awhile he gets up and moves his body (even had him walk around and dust). We figured out too much of ANY position is a negative for him. Hope this helps, I tend to ramble on...

Rama, thanks for that explaination. My son definately gets really bad adrenaline surges and then jerks. He also gets so hypersensitive to sound, I think even rustling papers much less all the talking, alarms, bells, smells, hot room, cold room, and so much more, it is all going to be a big challenge for him.

I have read that some set an alarm half hour before they want to get up and take their meds and drink some water.

Getting ready for my son's 504 meeting tomorrow, wish me luck! I think I am going to need it. These recent threads have been really helpful and I borrowed out a lot of suggestions here. Thanks!

How long is your 504 and how detailed. Does it include medical information such as what to do for convulsions (which may not even happen?) My son has major jerks sometimes, haven't seen many lately, but a lot last year and also convulsion like episodes (adrenaline). Haven't seen any for several months then bam last couple nights ago he has a major one that lasted 10 minutes or so. Obviously the school/teachers need to know these things but how is this communicated. He wouldn't need an ambulance but they will probably call 911 if he has one, and we don't want him transported (especially if they can reach me which they can) but how do you do this?? I am trying to write this out what should be included without getting too detailed (I can see teachers reading it and their eyes glazing over already) It is getting pretty lengthy.

My son has a pediatrition. We have been with her forever. Once she referred us to Mayo, in December and then we self refered to Dr. Abdallah in March, I didn't talk to her at all. She had been out of ideas at that point. I finally scheduled an appt with just her and me (once I had a clear understanding, comfort level and medical plan) and talked to her for an hour. She was great, has always been a little forward thinking, will never have a total understanding of pots, but that is not what she does. I just needed to make sure she has a working knowledge so that she could see my son for pots stuff or other stuff as it may relate. I did not take my son. We were all totally wiped out by the year we had had and I did not want to subject him to anything awkward, though there ended up to be none of that. My son knew I was going alone and why. When he needed to see her a month later for a virus thing, it was very comfortable and I didn't feel like I needed to start explaining all that had happened with the kids sitting there not feeling good. Just last week we saw a local electrophysiologist at the children's hospital here. It had taken me 3 months to get in to him. I sent him a letter ahead describing why we were coming, my son has been doing well, etc, but it would be in his best interest to have a local cardiologist who understands, and we wanted to keep Dr. Abdallah as our primary and add him to Jerod's team. He obviously read it and was great with us, reassuring that if he felt any changes needed made he would run it by Dr. A. So for now that is our Dr. situation but a few months ago we felt like you - What Now??

Christy, I am wondering how the 2 lockers would help. If it was ME I would probably always have what I needed in the other locker But I am wondering if I can arrange to keep the text books in each classroom then he would not even have to carry them from room to room during the day, only his binder or a workbook.

There are a couple threads going but I thought it might be a good resource if people who already have 504/IEP plans in place would list them here. There will always be new parents and teens coming on here looking for this kind of advise. It is so hard to anticipate everything that this could be really helpful. I posted Christy's list here already. 2 sets of books, one for home-one for school so he didn't have to carry them home and so they were already at home if he missed school Can have a water bottle with him at all times Can have extra restroom breaks as needed Can go to the nurse without any questions being asked Extra time on assignments when he missed school Assignment modifications if necessary (he has hand tremors so it is easier for him to type the write) No points taken off for penmanship (due to the tremors) Fire drills were not to be spent outside standing in the sun(they would provide seating if they could and under a tree in shade)

Christy, that is a good idea about not standing in the son. My son also has huge issues with temp control, even in the summer he has been freezing. What in the world are they going to do with him in the winter? Last year just going outside could send him into seizure like jerking!

Thanks Brenda, That is all really good advice. My son last year was homebound and couchbound. But with meds and exercise he is quite active now, bike riding, went to camp, and does "most" all of what he wants. As you all know, he has to work harder to achieve anything he does, though. With school because he is going in strong I feel like it will be a bit of an uphill battle and though the school has been quite good so far, I really have no experience in dealing with in the school stuff. He won't need a wheelchair now, who knows in the future. What kind of reclining chairs? You know school, they often have no imagination so if they don't have something, it helps to have specifics. The stress of all day, everyday I know is way different than bike riding in the summer. This year, though, at least we know what he has, he has meds or we can try new ones, what ever it takes. Oh, he does already have a 504, though there isn't much on it right now since they didn't want to talk about it last year because he was homebound. I understand that, we didn't even know what kind of accomodations he would need and neither did they. Now that he will be there next week we will sit down and make the list. It does seem like we will be chasing symptoms, so I think they will see a lot of me. I am trying to think of something outrageous to put on the list that they can ax and it won't bother us and they will feel the satisfaction of not letting us have everything.... joking! The two things that are on there are extended time for assignments, and modified assignments. That is it, not much. But seriously, if he takes a big crash I will even go for the IEP, I have nothing against asking and getting the services he needs. I had given them the Dynakids brochure which is a good start and has a list of suggested accommodations to start, some of which I wouldn't have thought of, like warning before fire alarm testing, so he can leave the building early, because he is sound sensitive, and it would really ruin the rest of his day.

Kaybers Mom, perhaps they have distinctions or levels and after the 8 weeks they have a different level of service, may not impact you at all. As Christy said that would be illegal to deny education so I am sure it must be something like that. Especially a larger school district. I think some of the smaller ones still try to pull stuff on people and some of them can be difficult to work with no matter if they are large or small. I know last year you were really occuppied just trying to figure out what was wrong with K and getting her treatment. That is where we were last winter. My son was actually out of school for 6 weeks before we got any homebound and we had to approach them, which I think they were supposed to come to us. We weren't really thinking of that at the time but he got really far behind and ended up not getting all his credits. Guess we just all figure it out as we go. Christy, our HB teacher complained, too. She said it would be much easier on everyone if they would at least just give her the curriculum. They COULD do that.

Really?! What happens after 8 weeks? That doesn't sound right at all. Surely they have other disabled kids who can not be in the class room? What about kids who have cancer or transplants? Kid that are immunocompromised and have to stay home. Do they just not provide any education?

Last year was awful on homebound. We live in a midwestern state and with the record snows, cold weather, trying to find out what was wrong, isolation, well, it really is as bad as they say - and we had a good teacher. Depression was bad. One thing I see is it looks like your school starts later than ours, that is a good thing! Ours starts at 7:30 I am going to do everything I can to get him to school at least a couple hours. They said our school has no option for part-time homebound and that is a crock. We live in a huge school district. I just fired off a letter to the head of special ed services (I was REEEAL nice, haha) I know the special ed coordinator at our school had never heard of pots so will just have to educate them all and tell them that if at all possible he needs to be at school, even for as little as 1 hour. Apparently the policy is 5 days absent they get put on homebound. 5 days is too long, and if he recovers after a couple, or is better, I want him in the school building. They told me this last year but I didn't really get to explore it. Unfortunately I think my son is starting the October slide already. He has been doing so great. It is 90 degrees and he is sitting in the recliner with a quilt. His classes are all over the school (1800 kids, so big school) so I am worried about his endurance as well.

My son also craves water. I think you are right about 2 much unless you can in some way replenish. He craves water. I think that is why he does good on the florinef. Gatorade has some other products now that don't have sugar, someone mentioned the packets, no flavor, add to something, and we also got another flavored G2 product that has rebiana (stevia). These were at GNC but sure you can find them elsewhere.

Do you react strongly when the pressures fall or it is raining (or snowing - don't really want to think about it!) My son had major jerks yesterday and it was raining and cooler, in the 80's, when it has been unusually hot and dry for weeks. School is coming and this isn't a good sign. Raining again today and having trouble getting up.

We just registered for school today. After being totally homebound last year my son wants to try to go back full time. His heart is in it, not so sure his body can take it. He was really tired today after registering and walking around to find classes. I was wondering what the the other parents were doing with their schools, either for in school or homebound, to try to balance getting an education and staying healthy. I am pretty sure he will have a rough time of it no matter what. Our school is pretty good but it is up to me to ask for things. They are very interested in him succeeding but also staying healthy while doing so. And I love to hear from the teens on here too! Help us parents do what we can for our kids

When do you talk to your Dr.? I think for some if your symptoms continue then you might repeat the test. I have heard of some of the professionals referring to the TTT as a dirty test because the results can vary depending on a lot of things. Did they give you any clue? Do you have a next step? Could be something else. CFS? Fibromyalgia? Candida overgrowth?

It doesn't sound right. The forum can't tell you, though. You need to have it inspected asap - today.

I use those for my son. I do mix them with the crystal light pure (with the stevia sweetener). He can't tell. I have added the whole thing but usually I just guesstimate half for the morning and half during the later part of the the day. They are pretty convenient to tuck into a purse or pocket.

Umm... You really don't know that your Dr. said anything to him. He has BiPolar and has been verbally abusive to you, how do you know that he isn't just making that up to upset you? Could he think the Dr. said that too him? My point is did he say anything to you that only your Dr. would have known. On the other hand from what you said, maybe you do need a new Dr.

Sometimes J is able to nibble on protien bars and they don't bother him too much. I clean out the protien bar shelves when I go, some of this, some of that to have a big selection at home. I don't like them much but he can tolerate them. Also the kelloggs chocolate protien shakes are actually really good, maybe you could freeze them and he could eat just a little at a time so his stomach doesn't really feel like anything is actually in it.

How long was her test? Some do only 2 hours but some do 4 or more.

Can you discuss the medication with your regular cardiologist and maybe she will either call it in for you or get on the other doctor?

tennille, My son took this med so hard for me to say exactly what he was feeling. He did about 8 weeks of this med, started out low and increased over time. After the first couple of weeks it seemed for a short time maybe was helping but really after that he got worse, and much of his problem was seizure like jerking, his comprension and loopy phases got way worse, and many other things that I have posted on here. I do NOT know for a fact it was the med, could be the med just wasn't helping. After he stopped the med he slowly improved but 5 wks later we also saw Dr. A and started the Midodrine and Florinef. Just thought I would tell you our experience. I had heard from people who take it that it is a med that really needs fine tuning to an individual, and at the time Mayo wasn't very responsive. Good Luck, hope you get some answers. What dose are you on and have you talked to your Dr.?