I hate ADHD...

iVillage Member
Registered: 09-13-2003
I hate ADHD...
7
Sat, 09-13-2003 - 10:56pm
I mean I really hate it. Sorry, I don't mean to burden you all with my "poor me" session. But I don't know how else to express how mad this condition makes me. We've tried every medicine. Adderall XR worked wonders, DS was an "A" - "B" student. However it caused him to loose over 20 pounds because he couldn't eat. That was last year, this summer we tried Straterra - no luck. I put him back on the Adderall Wednesday - Thursday evening we were talking and his lip was all over the place. I don't know if he's developing a tic or if it will go away. We are watching it closely.

Today was his b'day and he begged to skip the meds so he could eat. It breaks my heart (btw he gained 25 pounds over the summer and looks great). I am at my wits end, if this is indeed a tic is the Doc going to suggest meds to control the tic? How much meds until it's too much?? I've tried all kinds of alternative treatment, diet, chiropractic etc. (I had him taking supplements including cod liver oil last summer). It tears me apart watching him struggle with no meds (or meds that don't work) he gets so frustrated has a tantrum then can't calm himself down and is yelling at himself because he's angry with himself because he can't calm himself down. And the alternative is watching him get 90's and 100's on tests yet wasting away.

I'm sorry to dump, but the truth is that the only people who truly understand what it's like to parent an ADHD child are the ones that do.

I'm hanging in there and time marches on and new discoveries are made every day.

Thanks so much for listening. I haven't been to this board in about a year, but I am so glad it's here.

Renee

Mom to Kyle (9 today)

iVillage Member
Registered: 06-25-2003
In reply to: lucysnow
Sun, 09-14-2003 - 1:19am
Hi there lucysnow, I'm glad I checked this board tonight. I have a 10 yo son who is currently taking Adderall XR, who has lost quite a bit of weight. He too has tried almost every medication out there with not much luck. Like you said either they get the good grades and physically "waste" away or they suffer in school, not just grade wise but emotionally and mentally as well. He has a doctor's appointment this week, and we are thinking of the Strattera...but still not sure. I just can't stand to see him lose any more weight. We too have tried every option out there, he is just one of the kids that needs the medication. But finding one that the benefits out weigh the side effects has been very difficult. Hearing how your son gets so angry and frustrated with himself, thats exactly how my son is. He critizes himself so much it hurts me. We stay hopeful knowing things will change for the better. I have raised my 17 yo step son who was also ADHD, so I am all too familiar with this. Thankfully though he has grown out of the impulsiveness and the frustration and low self esteem. Now just to help my 10 yo son get through this...I must admit this is the hardest thing I have ever had to deal with.

Take Care,

Gina

Avatar for keke0116
iVillage Member
Registered: 03-26-2003
In reply to: lucysnow
Sun, 09-14-2003 - 7:30am
(((Renee))) I do understand your frustration. Meds for ADHD are supposed to allow a child to function better without altering who they are. SO, it's a matter of weighing the benefits against the side effects to see if it's worth it. If a med causes another problem that needs another med, IMO, it generally isn't worth it. I know that some meds make kids have a hard time sleeping, and another pill is needed to help them sleep. That's not as bad as tics and worse, but still ...

Has your DS been seen by a neurologist? I ask because I was speaking with someone recently who is a licensed psychologist, is the youth director at church, and has 2 ADHD kids (one pretty severe) and he told me that he would never allow his kids to be medicated unless they were diagnosed by and treated by a neurologist. That a psychiatrist can do some things, but when it comes to the brain and wiring and chemicals and all that, only a neurologist TRULY understands the entire combination. At this time, DS is off meds, but I know that before I put him back on, I'm going to take him to a neurologist to see what he has to say. That might be an option for you ... get another opinion and see what they have to say. There HAS to be a balance ... there HAS to be a way that a child is able to function in school AND still be the same person.

I've heard of people giving their kids Benedryl and such just to keep them calm ... and that bothered me 'cause it was like making them a zombie. I know when I take Benedryl, all I want to do is sleep. I can't imagine giving it to my kids just so I could deal with them.

But, if changing a diet didn't have any impact, then it probably is a chemical thing, but you need to find the right meds (or combination) that will work for him ... and that may mean changing docs as well.

Good luck. Know you're not alone!

(((HUGS)))

Nancy

Nancy 

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iVillage Member
Registered: 03-27-2003
In reply to: lucysnow
Sun, 09-14-2003 - 9:13am
Lucy.. Is your son unable to take Ritalin or the forms of Ritalin like Concerta or Metadate ER? Has your dr tried those? I am just asking because if Adderall causes him this much eating trouble, he could very well do better on the other forms. My son takes Ritalin ER (He is 9) and he is able to eat lunch. It's long acting and yet it's not so long acting that he can't fall asleep at night either. My feeling is to use the lowest amount of drug you can, (where you see results) with the least number of side effects. My son COULD be on a higher dose I suppose and then he'd get only 90-100s. But he sometimes gets 80s and once and a great while he even gets something in the 70s. Yes the ADHD makes it so my A student, (brainwise) is not going to be able to get As and Bs every day consistently. If meds have such negative effects on your child, tics, losing weight- that means you should look around at another dr, or go to your dr and discuss other choices, in my opinion. And it's ok if your child has some off days even on the meds, grade wise. That's better than having no appetite, right?
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Registered: 04-25-2003
In reply to: lucysnow
Mon, 09-15-2003 - 1:26pm
Aw hon, I know this is hard. Sounds like he's on the wrong dose of Adderall - but tics are apparently fairly common with that med. Fortunately my son has had no issues with it.

I like the recommendation that you go to a pediatric neurologist. Its a great suggestion, especially since it does cause such a weight issue. My son was the same but once he hit puberty, food and lack of it was not an issue. The boy kills a box of cereal a day. He eats - and eats and eats - after his meds wear off. We also don't give him his morning dose until he's had breakfast. It helps. So lunch is really all we're dealing with.

But at the moment, where else could you vent and let it out. You have to or you will explode! Please vent here when you feel the need. Because often you are surrounded by parents who don't understand or parents who say you're not disciplining enough or you just are too soft on him, etc (I've heard them all). Sigh.

Hugs.

iVillage Member
Registered: 08-31-2003
In reply to: lucysnow
Mon, 09-15-2003 - 2:13pm
Hi Renee

My dd, now 14, had a very significant issue with weight loss and then no weight gain or growth for the first 18 months of treatment. During that time she had lost about 15-20% of her body wieght. We of course tried all the standbys for increasing her nutritional intake, small frequent meals, meals before med dosing, getting rid of junk food and only offering nutrition packed snacks like meal replacement bars, adding instant breakfast mixes to her milk at meals, letting her eat when she was hungry (which often meant making a dinner for her at 9:30pm). Doing all that did help her maintain her weight after the initial loss, but as I said, she didn't gain weight or grow for 18 month. She was having great success with her meds at the time and the thought of stopping them was really tough. Her Dr, a pediatric neurologist, decided to try a med called Periactin. It's a mild antihistamine that is also used occassionally for migraines. It has a side effect of causing an increase in appetite. My dd did so well, too well, on it. We started with 1/2 of a tablet and then tried spliting that in half again. We ended up with the liquid with was a bit more accurate that trying to give a pill that was turing to powder from being cut so much. Within the first year of being on Concerta, when it became available, my dd no longer needed to take anything to stimulate her appetite. I don't know for sure if it was the Concerta, or that she is older and puberty hit (the anorexic side effect is more pronounced with younger kids), or maybe both. But I'm not complaining. It's really hard to watch your child not eat. Good luck

Alicia
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Registered: 03-28-2003
In reply to: lucysnow
Mon, 09-15-2003 - 6:02pm
sorry for your frustration. I parent 2 boys with similar problems ages 5 and 4

Also been on straterra which was a disaster and adderal which was another disaster

Clonidine has worked for the 4 year old it's an alpha blocker and helps with the tics and The 5 year old is on Corgard which is a beta blocker. These are meds for lowering bolld pressure. they do make the little one a bit sleeepy but without them he is hard to live with. Wanted to mention a resource called love and logic you might be interested in for discipline measures. You can go to www.love&login.com for more information.

Also omega 3 has been helpful for the older boy. Go to www.coromega.com

Wanted to let you know that their diagnosis was changes from ADHA to Bipolar

Something you might want to consider discussing with your doctor.

iVillage Member
Registered: 03-27-2003
In reply to: lucysnow
Wed, 09-17-2003 - 1:34pm
Have you tried Concerta? It works similarly to Adderall, and my son has always been able to physically tolerate it better than Adderall. He has not lost any weight at all - he's always been on the small side, but as long as we see some sort of increase, we are ecstatic. He will occasionally complain about not being hungry, but it isn't real frequent, and I will force him to eat something. The Concerta has really helped with my son's concentration and impulse control. Ask your doctor - to me, it's certainly worth a try in case it does help with his appetite.