Ever feel like you are crazy? wish your child was NT or worse?

Katie - posted on 07/15/2012

My my oldest is ADHD, odd and mood disorder ( non specified) at 8. He's been hospitalized 3 times within the past 7 months because he gets very violent. There are days that I really don't know how I survive. I also have a 2yr old who is picking up some of the 8yr olds habits and we live 1400 miles away from my husband until we can financially catch up and be able to move to where is new job is. Ere are days that asking the simplest thing sets him off on a 45 minute rage that has been known to leave holes in walls, bruises and broken furniture. He's been medicated since he was 4 for the ADHD but the doctors thinki I'm blowing everything out of proportion even when I bring videos of his rages so the medication for the mood disorder is never completely correct.

Iridescent - posted on 06/20/2012

Dawn - sorry I overlooked your question earlier! How to we get everyone where they need to be? Well... I told the school my son will not be doing summer therapy even though they want him in it. He needs a break, and so do we. I'm transferring all the care I can to one single clinic (Mayo Clinic) for the 2 kids that are most complex, so it'll be 1 trip each every 3-4 months for 1-2 weeks at a time ideally. It sounds awful - but appointments twice per week 4 hours from home for months on end is too much, and that's what we've been doing. We can't keep up. I miss some things and have to reschedule a lot, especially stuff like yearly checkups, eye exams, and dental. Non-urgent items.

We do sports with the kids during the school year, but this summer we aren't doing swimming lessons like usual and we're not doing sports. We have to get medical under control first. It's not fair to the other kids, but we can't keep up and if we don't get something stable for care now we never will.

I keep a planner that has our schedule in it, and it goes with me everywhere. That's helped a lot but we still make mistakes.

Sharlene - posted on 06/19/2012

Great thank you ,take care

Iridescent - posted on 06/19/2012

Yea that's fine.

Sharlene - posted on 06/19/2012

Thanks for letting me know, Is it alright if I put a post up in your community if theres any Aust mums with there children please.take care

Iridescent - posted on 06/19/2012

I'm not seeing any release of a shortage of Pediasure here in the US.

Sharlene - posted on 06/19/2012

Hi Iridescent moonbean , I just found out its from the company abbott, they only know it's happening here in Aus. unware if its happening global. wheres it the make up formula which my daughters on only going off the hann programe and it going to double in price from a chemist . are your children part seeing a with a dietitian course there can write up a prescription to write up the amount of use. where its the all ready made up pedisure or the delisue Probably just give them a call or check out website of where you come from. and If its happening where you come from . can you please let me know course Im part of other communities with children with eatting issues please.take care

Iridescent - posted on 06/19/2012

I can do that. My son is on Neocate Jr with Prebiotics, 64g per feed, 4-5 feeds/day. My daughter is on Cyclinex-2 50g/day and ProPhree 25g per 5oz water as tolerated when ill or dehydrated. It is good to know that about Pediasure though - do you also happen to have a link I can share with my group on facebook for those using it?

Sharlene - posted on 06/19/2012

@ Tibiaboness boombeans, I know your two little one's are tube fed, Are your children on pediasure, Course I got word in Aust, that there taking pedisure of the shielfs in july and advising parents to stock up on them.the next brand to pedisure is sustagen for children its got the same nutrition ingredients. Im going to find out today if its international and if it alright with you I might do a post and if you could pin it please.

Dawn - posted on 06/19/2012

How do you manage to get everyone everywhere? I am having trouble scheduling my son and my husband. Son--OT, Chiro, Neuro, Pedi husband- : doc, urologist, tests and soon to be others depending on treatment. We talked about having other kids, but whith my son being so unpredictable (better now but even 6m ago (pre-meds) whew) we didnt think it would be fair tp the baby. Our son hurt us and otherkids even when trying to be nice--hug by running full out and squeeze hard. How could we trust him around a baby. Now I wish we had another and at the same time Im glad there is only 1 child to worry about if anything happens. I love my and I am proud of how far he has come----I just dont seem to understand anything about him. He is 4 what happens when he is 14 OMG.

Iridescent - posted on 06/19/2012

Maybe... :) It's a lot to deal with. How you cope is most important. I went to counseling for 9 years to learn how, and for me the biggest factor is getting some time for just me daily, usually at least 15 minutes reading before sleep. If I need a break, I find a way to get it. My husband and I try to go out weekly with each other, no kids.

My oldest sounds very similar to your son. He's 13 now with PDD-NOS, ADHD, severe depression, now he has vocal tics, hypertonia, and some unknown liver disorder, plus a mitochondrial disease on A1464G that he's the first to have. He's on medications to help him cope with the depression and hyperactivity and tics. We didn't medicate him except for depression from age 3-4, then only therapy until 11. We tried a lot of therapies first.

My second is pretty typical. He suffers from anxiety, has cysts on his kidney, and asthma. He was deaf until he was 2 and had surgery to correct his ear canals.

The third and fourth are twins. The third is underweight and hyperactive, but developmentally pretty typical (some difficulties with speech). The fourth is severely autistic, has an IQ of 72 and a low GAF score (15), has missing IgA and so has developed asthma, GI dysfunction and food allergies so has a feeding tube and is on elemental formula, hypotonia, abnormal reflexes, severe reflux that is further damaging his lungs, malabsorption with chronic diarrhea, and now he has something very wrong with his bone marrow.

The fifth is missing a liver enzyme and can't process protein. She has hypotonia and brain damage as a result. Now her GI tract is also not working right thanks to a virus she had a couple months ago, and she's no longer absorbing minerals. Treatment plan is coming in the next week or so.

Cherish - posted on 06/19/2012

Hi,
My youngest has severe autism and is NOT HF...I never wished he was normal,tho I wish he could talk,I wish he did not have type 1 diabetes (I feel awful for poking him 4x a day and doing insulin 3x a day),I wish he did not have seizures....

Honestly HF kids(I have 2 kids w/HF ASD),they are kinda odd ish,but some am I,it makes us who we are :)

It is ok to be different...different is fun..lol

Dawn - posted on 06/18/2012

Vent/curious. I feel bad about how I feel sometimes and wanted to know if what I felt was "normal". Also, I have had so much happen Since Oct. In OCt, my dad was diagnosis w/stage 4 prostrate cancer=already in his bones, In Feb we got the diagnosis for my son, In April my dad passed on, Tues of last week we found out my son may have musle weakness and I need to schedule a physical therepy eval, Thursday we found out my husband has prostrate cancer. He has tests this week and we should have the results on momday to tell us
"how bad". So at this point I dont know if I am crazy, stressed, normal or all the above! We are also in the process of moving in w/mom cause the schools are better in the county she lives in and my husband already works there. So in addition I am looking for work, trying to pack up a house and trying to decide what we can do because our house is EXTREAMLY underwater. I love my mom but her house is small and we will drivee each other nuts if my HS years are any indication. I love my son and he is how he is--it just all seems a bit much right now. Thanks for responding.

Sharlene - posted on 06/18/2012

I have 3 special needs children and yes we have our good days and then we have our bad days were I feel like screaming and shouting WHY...... But when I look at them I love them to death. So I dont know if this is a little vent or what but I think every mum would feel like this most days lol.take care.