I am falling apart (Sorry so long)

iVillage Member
Registered: 04-03-2003
I am falling apart (Sorry so long)
10
Sun, 04-06-2003 - 3:27pm
Our son just turned 6 and was diagnosed with ADHD last Nov. He was also just diagnosed 2 weeks ago with Sensory Integration Disorder.

He is on 25mg of Adderall which seems to really help with the hyperactivity part. He has lost a lot of weight but fortunately had some to lose. My only concern, is with nice weather coming on, he will be a lot more active than he has been over the winter and he is still losing about 2 lbs. per month now. he has went down 3 pant sizes and 2 shirt sizes already since Nov.

He constantly bites his nails. He never wants to go anywhere. Even if we entice him with going to get a toy, or going to McDonalds or a movie he cries because he doesn't want to go anywhere. He just wants to stay home. Every once in awhile on Sunday, we will go out for breakfast. He has to be forced to go and then he will sit there in his jacket, refuses to eat and asks over and over if it is time to go home yet.

He is having alot of problems academically with being able to remember things and homework is a nightmare. He becomes extremely irritated. I try to work with him on things at home, but he will flat out tell me he doesn't want to talk about this. He tells me I don't know about what he learns at school and I can't help him.

He is constantly telling me and my husband when we go somewhere in the van that we are going the wrong way or we are taking the long way and he wants to get home. he always thinks we are lost.

He is also very particular. His socks have to be on perfect, his pants have to be just the right length, he will not wear sweaters, button shirts or sweatshirts. He will only wear t-shirt type short and long sleeve shirts and he does not want to wear that shirt more than once, unless someone has told him it's a cool shirt, then he wants to wear it everyday. We also have to cut all the tags out of his shirts or it drives him nuts. And if his underwear are even up his butt a little, watch out cause all H--- is going to break lose.

He has to have his hair blown dry because he can't get his pillow wet, his pillow has to be cold, his shoes strings have to lay just right after being tied. He gags to the point of sometimes vomiting when he has to brush his teeth. He can't stand to have his face washed but will scream if he gets anything sticky on him.

He has always been terrible about taking medicine. If you even mention him having to take meds. he starts to gag. It is a fight every morning. We put the med. in pudding or yogurt because he won't swallow a pill. He screams and cries and vomits and hides under the table. We have tried doing a chart that he gets to put a sticker on everyday that he takes his meds. like a Big Boy and if he does well 4 days out of 7 he gets a reward. Like a toy or going to McDonalds or renting a movie. But since he never wants to go anywhere that didn't work very well. We have tried taking privileges away. He has gone a few times with no privileges. He is allowed to look at books or color and that is it, but that doesn't work either, so the daily battles goes on.

We try to use the 123 Magic which does not work very well. His last doctor wanted him to take 15 minutes for every timeout, well he can only handle 1 at a time or he gets extremely angry and starts throwing things and breaking things and screams uncontrollably. He throws things down the stairs, says he wishes we would die or that he was never born. I am usually sick to my stomach by the time I leave for work in the morning and I feel like a terrible parent.

I currently work full time and a few weeks ago Tristans family doctor and the psychologist both said they felt that Tristan needs me to be at home. I have become extremely depressed. I want to quit my job RIGHT NOW and be home for my son but I'm so afraid we wouldn't be able to handle it financially. I don't know what to do. I don't know how to handle this. Every day I go to work I feel extremely guilty. Any advice would be appreciated.

I also wondered if anyone has heard of the Pace Program.

Thanks,

Charity

iVillage Member
Registered: 03-26-2003
Wed, 04-09-2003 - 10:39am
Hi Charity,

My son is about 3'1" tall. But He was always very thin it was not the adderall causing him to lose weight.

The Ped. just did a ton of blood work on Joey also. but his all came back just fine (thank GOD) I sure hope Tristians all come back fine to. It is worrysome.

Joey does really good in school (he just got his report card A's and B's is what he got) Joey absorbs alot, he is smart also. But the social issues of school bother him. He would rather sit inside at recess instead of going outside. Joey did quite well in preschool-although he DID NOT know how to write his name going into kindergarted. And they thought about holding him back in K because of his motor skill issues but decided at the last minute to send him to 1st grade (and he did pretty good in 1st) He does get SOME 1 on 1 help. His teacher said she would compare his motor skills with that of a kindergartener. BUT they said they do not think he will qualify for special education (BUT he does have speech therapy at school) URGGGGG. His ped. is going to write a letter to the school requesting them to evaluate him. They said they don't want him to keep having trouble with his Motor skills but they don't think he needs spec. Education??????????????

We were told they funding is not there. We just built on to our school (7 million $$) but they can't help my son. URRRRRGGGGG!! there are 2 children in the school system that have personal aides if my son needs the help why can't he get it. I guess cause his academics are ok.

Believe me we all go through the questions of Why, what did I do. My husband has ADHD and he blames him self.

I have always thought it was the preseratives in food causing alot of the mental and medical problems people are having now but i guess i never thought of the chemicals we use????? i am going to research it.

What about asbestos?????? we have slate onour house and it has asbestos in it?????????:(

We have 2 other children (1 is my step son) our daughter has ADD also but the medication seems the help her ALOT her behavior turned around after starting the meds. She is not as ..different as Jeoy is. Nicole is 12 (on April 12th)

My step son has some educational problems but nothing to sever. He makes good grades. He is 13.

I had alot of problems with my 1st pregancy~ i went into labor at 7 months and i was on bedrest for the remainder of her pregancy. But she ended up being fullterm and very healthy (she was delivered by C-section)

Joey was a good pregancy except i had Inter uteran growth retardation (he was not growing at the expected rate)he was born c-section also. He was small but seemed healthy enough. But i have to admit he was ALWAYS a difficult child. He cried ALOT. He was involved in Iowas Early intervention program, he got speech therapy (he was not talking very well at age 3)

Yes it is nice to have some one to talk to about ADD (someone who understands)

Good luck,

vanessa

iVillage Member
Registered: 04-08-2003
Wed, 04-09-2003 - 8:08am
Thanks so much for writing Cheri and we are here for you. You're right I find this board to be so uplifting because as we all know it's a tough world out there!

Tony did well on his GED entrance exams and they have determined that he only needs about 3 months of prep time to get his diploma. Please keep us in your thoughts. He has such high hopes for himself for a bright future and the high school gave him nothing but rejection and peer pressure.

He starts the GED program today and I am as nervous as a cat in room full of rocking chairs! Three months seems like an eternity when you know what your child is capable of doing but wonder if he will be able to "keep it together" to accomplish the task!

Please do keep in touch!

iVillage Member
Registered: 04-03-2003
Tue, 04-08-2003 - 9:21pm
Hi Nancy,

I want to thank you so much for your support. I really need all I can get right now. I am so glad I found this board and their are so many nice people here, it has truly been a God send.

I hope your son does well with his GED classes. I don't know about where you live but I know here in Illinois, they have very small classes or one on one GED study groups and they only have to go to the college to take the actual test. That may be something to look into. Hopefully, all will go well and you won't even have to worry about it.

Take Care!

Charity

iVillage Member
Registered: 04-03-2003
Tue, 04-08-2003 - 8:44pm
Hi Wendy,

Your daughter sounds a lot like my son. The crying, being very irritable, destructive and extremely emotional.

He does pretty well in the morning, after his medicine has taken affect, but by 1-2pm he is bouncing off the wall, hateful, angry, destructive and by evening, it goes to the crying at the drop of a hat. I hate to see him suffer like this.

I have had several people in the past few days tell me Adderall can cause anxiety issues. We had therapy today and our doctor even said that. She isn't the one that prescribed the Adderall. We already have anxiety issues without the med. so I think it is time for a med. change. What problems are you having with the Concerta?

Thank you for the advice and I hope to talk with you again soon!

Charity

iVillage Member
Registered: 04-08-2003
Tue, 04-08-2003 - 2:31pm
I have been exactly where you are and I understand your frustration. My son is now 17 and it took me until he was in the 4th grade to get anyone to listen to me. He was so bad as an infant that when he was teething he chewed his knuckles and forearms bloody and black & blue. We have had lots of ups and downs and just today enrolled him in the GED program for his diploma because the high school here is seriously unequipped to deal with someone like our sons. Now I am in a panic that he will have an "outburst" at the college setting for his GED and they will kick him out of that program as well. Then what other options do I have.

Hey, I'm sorry I guess I am rambling, but what I really wanted to say is that you are certainly not alone and there is always support on this board. Come and vent, cry, feel better. We're here for you.

Nancy

iVillage Member
Registered: 03-26-2003
Tue, 04-08-2003 - 2:23pm
Hi!

I don't know if this helps, but my 6 year old daughter was diagnosed with ADHD about 2 months ago. We tried Adderral at first and had a horrible time with emotions. Kayla was very prone to crying and very irratible. She is emotional anyway, and the Adderral made it much worse. Adderral seemed to help with the wild behavior, and the "goofies" but didn't help the tears and the aggressiveness at all.

In the afternoons she would be practically horrible. She would get really angry. She treatened to run away, threw wild and descructive tantrums in her room, and was intensely fragile. The doctor said to up-the dose and it only got worse. After the first week we switched to Concerta, and although we have other problems with that, at least we don't have such scary behavior.

- Wendy

iVillage Member
Registered: 04-03-2003
Tue, 04-08-2003 - 12:40am
Thank you for your advice! I am going to look into a neurophychiatrist. I had actually never heard of that before. We have seen two different psychologists and a psychiatrist so far. A the first psychologist thought meds. and the 123 Magic program were the answer to all. When I told him of my concerns about the compulsion issues and the anxiety problems, he said, your son is fine. He can sit still in school now, can't he, isn't that what you wanted. That was his last comment to me and our last visit. We saw the psychiatrist in that same office and all he did was see us for 15 minutes each appointment, weighs my son, ask how his meds were working and charge me $100. We just started seeing a new physiologist about a month ago and I'm not sure about her either. She seems to be pulling at straws. I don't know.

I want help and I want answers. I really don't feel we are making much progress. About the only thing that has changed with his meds. is the hyperactivity. He is able to sit still in school now, but he is only in school from 8-11am. By 1-2pm he is either bouncing off the wall, extremely irritable, crying about everything or just angry. Or all of thee above. A lot of times, I don't know how to deal with it.

Right now we have the diagnoses of ADHD, Sensory Integration Dysfunction and signs of Bipolar Disorder. he is currently on 25 mg. of Adderall XR. He seems to get him through school (3hrs.) and that is about it.

We are also having a lot of academic issues. if you read my prior post to Vanessa it gives more detail. Have you ever heard of the Pace Program? I was reading about it the other day and wondered if anyone had heard of or tried it. My son is having a lot of problems remembering things at school but is very intelligent. He actually knew more academically last year before preschool than he does now.

As for staying home, right now I am just going to cut back on my work hours and see how that goes. I am working on a home based business, so in time, I will be able to stay home but it isn't going to happen overnight.

Thank you so much for your advice! Take Care!

Charity

iVillage Member
Registered: 04-03-2003
Tue, 04-08-2003 - 12:00am
Hi Vanessa,

Thank you, for saying I sound like a great mother. I really needed that! Some days are so hard, I wonder if I'll ever make it through.

I can say, I'm not near as concerned about my sons weight after hearing your son only weighs 43lbs. How tall is he? Tristan is 4'1 and is weighing 63lbs. so he's far from skin and bones. I asked our doctor if they would take him off of the Adderall if he continued to lose weight and he said they would probably just lower it.

Tristan doesn't eat much meat either. I took him to the doctor today because he seemed to have a lot of bruises and wanted to get some blood work done to make sure he hadn't become anemic. They are checking him for ITTP which is a blood disorder caused by a virus. It lowers the blood cell count and usually with treatment goes away within 12 weeks. I'm hoping it's either nothing or he's just anemic.

We had Tristan in preschool last year but had to fight with the school to get him in. He had passed the screening with flying colors and they didn't feel he needed to go. I pushed the issue because I knew he wouldn't be able to sit through kindergarten without some practice. Plus being an only child I felt he needed the social aspect as well. Before he went to preschool he could count to 10, knew all his shapes and colors and could tell you the alphabet. Now he doesn't know his shapes or colors, can't tell you the alphabet and has been working on learning how to write his name since last year and is just now getting that down. He can't tell the difference between letters and numbers and the only letter he can identify is x. The teachers say he has a hard time holding information and everything takes longer with him because he wants it to be perfect. He will even sit through free play time to get an assignment finished. We have finally got through to the school that he has issues and needs 1 on 1 help, so they are doing a bunch of testing to see if he qualifies. I'm sorry but it seems like a no brainier to me. They have already said they won't hold him back because he is so tall. I get so frustrated. Sometimes I think he would know more, if I just home schooled him and worked with him 1 on 1 like he needs.

On top of all this he has an IQ three times as high as a regular child his age.

It is so difficult for me to understand all of this. I just want to know why? What caused this? But I know their really are no answers. It is just so hard and I hate to see him suffer.

When he was first diagnosed with ADHD I started doing a lot of research. One thing we found out was that a lot of every day products we use in our homes are laden with chemicals. Not just the typical cleaning products but shampoo, body soap, toothpaste, hand soap, laundry soap and a lot of other products. A lot of the products are linked to cancer but others are linked to problems with ADHD, asthma and neurological disorders. So we now purchase all non-toxic and environmental safe products. The change has really helped with Tristans asthma, allergies and his eczema.

So how is your son doing in school? Do you have any other children? We were making plans for our second child but have put things on hold for now. I had a really rough pregnancy with Tristan (6 months of bedrest) and with all the stress I'm going through rihgt now I don't think it would be a wise decision. So we are waiting a little while.

Well, again I want to thank you for your support, I truly appreciate having someone to talk to that can relate. Take care and I hope to talk to you again soon!

Charity

iVillage Member
Registered: 03-31-2003
Mon, 04-07-2003 - 10:40am
My 9 yo. DS has some similarities with your DS. Mine is diagnosed with ADHD and dysthymia (mild depression). He also has an anxiety component we are treating.

I can well relate to the nail biting...my DS picks his. He picks them down below the quick, and they have bled more than once. The obsessiveness about clothing...we've been there.

What has helped my son is a combintation of drugs. In addition to Adderall XR 15 mg, he takes Zoloft and Buspar. The Zoloft helps with his mood and with some of the obsessivness. The Buspar aids in treating the anxiety. We still haven't cured the nail picking, but it's better. Be aware that Adderall can increase anxiety. Is his Adderall the long acting version or the short?

My DS lost weight for the first 6 months, he also had some to lose. He has remained constant, and actually grown in the past couple of months. He regained 2 lbs and an inch in the past month.

I would encourage you to find a pediatric neuropsychiatrist. I don't think your son's meds are right for him if you are still having this many issues. He needs help for his anxiety. Normal disciplinary methods aren't going to help him with this. Quitting your job and staying at home may not be enough, and having you more stressed about making ends meet isn't going to help your parenting skills.

My DS also has a hard time remembering things. At your son's age, I would suggest that his teacher write his week's worth of assignments and send them home to you. If you need homework reduced short term, ask for it. Is he in K or 1st grade? Homework should be light either of these years. Now that DS is in 3rd grade, he writes his own assignments and the teacher signs off on them daily. When he forgets, he loses privileges at home.

{{Hugs}} Things WILL get better.

iVillage Member
Registered: 03-26-2003
Sun, 04-06-2003 - 4:12pm
Hi Charity

Do not feel alone my son is......different-when you posted


"He constantly bites his nails. He never wants to go anywhere. Even if we entice him with going to get a toy, or going to McDonalds or a movie he cries because he doesn't want to go anywhere. He just wants to stay home. Every once in awhile on Sunday, we will go out for breakfast. He has to be forced to go and then he will sit there in his jacket, refuses to eat and asks over and over if it is time to go home yet."

it sounded just like my son. Joey is 8 he has A.D.D, hypotonia, global dev. delays.

I don't really have any advice just wanted to tell you your not alone.

My son HATES meat it makes him gag~ and every time it is meal time he questions me over and over to make sure their is NO meat in what he is eating. We give him pedia sure because i worry about him not getting enough protein.

Joey loves to have anything "silky" touching him. He has a blanket with the silky edge and when he is scared or upset he has to feel that blanket.

Joey takes 15 mg of Adderall. I give him his meds with grape Jelly cause he loves jelly. but it has taken us since october until after Christmas to get him used to his medication. He used to throw it up, spit it out, or hide from me when it was time to take his meds.

Joey hates to leave the house. I think he gets nervous. He is not very comfortable in ANY kind of social enviroment.

On April 30 He is seeing a Ped. Neurologist (for his hypotonia and find and gross delays)

My son was in an early intrevention program at 3(thank God for those EI programs)

So i have been a stay at home mom (well i do work 2 days a week from 8:30-11:30 of course it is when he is at school)

HUMMM don't know what to tell you about the weight loss~ my son is SKINNY~ we weigh him about every 2 weeks he is 8 and weights 43 pounds (he weighted 41 in kindergarten)What does your dr. say about the weight loss??

It sounds like your a wonderful mother!

Good luck, hope things improve for you

Vanessa