Hi I am new to the site and need some advice

[ivas611]

We gave him the melatonin for the first time last night and he slept really great.
Unfortunately when I gave him the medications (mixed with the vitamins) he threw up. I am not sure it had blood or bile in it but there was something in the vomit. I gave it to on an empty stomach. I called the dr this morning. He should be getting back to me soon. My difficult child is also very good at making himself throw up so I am not sure if he just irritated his stomach.

 

[SRL]

Just a word of caution about the vitamins/supplements from the nutritionist: treat these like medications because children can have side effects from them, even if they are natural products. Some can result in fairly strong reactions.

It's best not to start with too many things at one time. If you started the dexidrine and melatonin, you may want to hold off on the vitamins or any other supplements for a few weeks.

 

[ivas611]

That is exactly what I was thinking too. Tomorrow skip the vitamins. Today was the first time I gave him any thing with out food. I leave for work at 6AM, so I woke him up to make sure he got his medication. Not that I don't trust my husband, I just know that my DS knows what buttons to push and he will not take the medications for him. So it might have been a combination of things. I

I just got back from the ER... all is ok. They said to stop the vitamins. The doctors were more concerned that he is soooo constipated that I need to give him Miralax and stool softeners.

 

[ivas611]

Things are not getting any better. His behavior is just as difficult, he is just more focused now. Only difference is DS is sleeping more. I changed his diet but, now he is eating less. According to the school AM is great but afternoon is a different story. I have a meeting with the school commitee on Friday. I am making an appointment for the psyc to find out what the next step is since the dexedrine is not really working. I am so frusturated. I need a vacation from my family!!

 

[SRL]

I don't mean to discourage you but medications are highly individual and it's a process of trial and error. Sometimes a doctor will nail it down the first time but usually that's not the case.

And yes, you DO need a vacation. Make sure that you're scheduling in time away, even for a few hours.

 

[smallworld]

Is it possible the Dexedrine is short-acting and working in the morning but wearing off by afternoon? Perhaps your difficult child needs a long-acting stimulant or a second dose at lunchtime. Most short-acting stimulants last only 4 hours.

And then again, he may need a different medication entirely.

 

[ivas611]

After breaking up the wonderful little balls into what I hope is right dose, my DS threw it up. After the third pill and the third time trying... we finally got it down. Administration is more frustrating than any of this. I am not sure if he got any, to much, not enough. I am nervous about having the school do this. I am going to call the psyc at 10 when his office opens.

Everytime I try to take time for myself, even to go food shopping or get a manicure I come home to a war zone. I got a gift certificate for a spa for Xmas. 4 hours of pampering. Full body message, spa pedi and mani got my hair cut and colored. I came home to an all out war. Yeah, kind of took the relaxation right out of me. Sometimes it's just easier to stay home and deal with it.

 

[ivas611]

I have an appointment with the psyc tomorrow night, hopefully he can help. I brought DS to a pediatrician ENT today and he is want to take out his tonsils and shave his adnoids ASAP. He said they need to come out so badly that he is clearing his schedule to do it as soon as possible. I hope it helps if not I know it can only make him healthier if they are so bad. He is so young to be going through so much. But something has to work soon right?

 

[BusynMember]

Just throwing in that all stimulants made my son aggressive and mean. It turns out he didn't have ADHD and shouldn't have been on stimulants. He was especially horrible on Adderrall. I would want more testing before I put him on any medications. If he gets on the wrong ones, they can make things even worse.
Melatonin worked for a while for my son, then it stopped working. I was told this can happen (sigh). It's never easy Take care.

 

[ivas611]

The melatonin stopped working completely. I actually has the opposite effect now. We went to the psyc tonight he Rx'd a another medication for sleep and another dose at noon of the dexedrine. I really hope the tonsilectomy/adnoidectomy help some of this. I have the appointment for the dev neuro the first week in Feb. I have to reschedule the appointement for the dev pediatrician. I have taken him to so many different docs and had so many test, I think I am running out of docs.

 

[SRL]

Has he had a sleep study done? Sometimes there are issues like Restless Leg Syndrome that can seriously impede sleep and it would take a sleep study to diagnosis.

 

[ivas611]

Yes, we had a study done a few months ago. It showed he wakes up 400X a night. 240 spontanous (they said that is related to ADHD) 70 restless leg or limb movement and 90 breathing obstruction. I went to a pediatrician ENT for a second opinion and we decided to take out the tonsils and cut back the adnoids. After I gave him the medicine to sleep (I should have done it before) I found out it was an antihystime. I specifically told the pscy that antihystimes make him wired. Yea, he went to sleep sitting up in his bed at 10:30 and he was up at 4:30AM. The only thing that helped him sleep so far was a supplement given to me by the wacky nutritianist. But I gaged when I opened the pill. It is so pungent that I couldn't hide it in anything. Ugh.

 

[Mandy]

Welcome!!! I used 1.5mg of melatonine which was half of a 3mg pill. I would stick it in jello or applesauce and give difficult child a bite. I am not sure how old your son is so this could make a difference. He would swallow the whole thing and not even recognize their was a pill in there. Also our Dr. just told us we need to try a medication for a month to see the full effects and if it would work. Unfortunatly we will have to go every month to see her until he is stabalized and to do blood testing when needed. It is a long process and big hugs to you!!

Oh, we are now off the melatonine because he is going to sleep on his own. I did research and found for children under 6 a dosage less that 5-7mg is generally used. They can get used to the medication though and then you will have to increase the dosage by .5mg to 1mg

 

[ivas611]

Thanks Mandy.

DS likes the Melatonin (orange flavor liquid), but it does not work any more. It makes him hyper. Just as all sleep aides, pain killers and antihystamines (husband has the same problem). The only thing that worked was a supplement given to me by the nutritianist. But, it is so pungent I can not hide it in anything. It really is gross. I gag just opening up the capsule and it is a horse pill. The thing is HUGH!

It's the dexedrine that I have a problem with. I have put it in everything I can think of. Now he is afraid of everything we give him, he thinks it has medicine in it. I started to give it to him in small cup of milk and constantly filing the cup up until the all the medicine is gone (those buggers are sticky). Now that the school has to give him medication, they will not give the capsules because of NYS Health Codes (can't break up a capsule). So, I have a call in to the psyc to see if I can get the pill form. They can break that up and crush it but not break open a capsule. I kind of feel better about that. I was very scared of someone else giving him medication.

 

[Mandy]

I would most definitly try a pill! I tried to give difficult child liquid herbs one time and he would not take it after the first two times no matter what I did! It looked like green grass juice though and I thought it smelled like **** too. LOL I think since the pills don't taste if they can get the art of swallowing down then they are definitly less likely to protest! I am glad difficult child is only on his medication twice a day because I also worried abt. someone else giving him his medications... or forgetting. The risperdole pills we have are tiny so he eats his little spoon of applesauce and usually asks me if his pill was in there because he cant really tell Good Luck!!

 

[Mandy]

That little starred word really wasnt a bad word?? LOL I said it tasted like cr*p. Sorry, just wanted you to know I wasnt being a potty mouth!!

 

[Marguerite]

How soon can they take out the tonsils & adenoids? I would be very wary of giving him anything to help him sleep, while he has sleep apnoea (as you describe form the sleep study).

A classmate of difficult child 3's (after school class) sounds very much like your son. This girl has bad sleep apnoea, so bad her mother can't get her to school. The kid is totally manic when awake, especially at night. She won't go to sleep until after midnight then in the morning the girl can't even be roused to go to school (the truant officer was invited in by the mother, rogether they put the girl into the previous night's bath, now cold. The girl was fully clothed and still didn't wake).

The thing is, from what we can work out with this girl - to sleep, it feels like suffocating. Her dreams are coloured by sensations of suffocation, she has nightmares because of it, and so she is afraid to go to sleep.
The girl has developed a problem with how her rib cage is forming, because of her breathing problems.

She has finally had her tonsils & adenoids out, now they're finding more success with things like melatonin. Before, she was fighting any natural tendency to sleep (and you know how kids can get manic when they're overtired). If they tried to sedate her, she still wouldn't sleep (it was like trying to tranquilise an elephant, her mother said). But when she finally did get to sleep, the girl was even more difficult to rouse. The girl now has to learn how to go to sleep, and that it's OK now, she is safe. That is taking time.

ON the subject of vomiting - difficult child 3's school accused him of making himself vomit. We finally worked out that it was severe anxiety. He also reacts to certain medications.

In my case - if I take a vitamin preparation containing iron, it comes back up with little warning, within minutes. Even if I drink water that has been in pipes contaminated with iron or copper, I throw up. It began with vitamins and each subsequent exposure the vomiting happened faster. Also, vitamin preparations are often naturally coloured. Iron salts are often yellow or orange (sometimes red) and Vitamin A is red. Sometimes there is artificial colouring in there as well.

So the vomiting could be a reaction to one of the components of what he is taking, or it could be an anxiety reaction.

Sounds like you have a problem here, but if it's just sleepl apnoea plus restless legs, it could improve a lot ofter the operation. Fingers crossed.

Marg

 

[ivas611]

Hi there... I have not checked in in awhile. Sorry about that it's been a quite a few months.

My 4 year old son was put on dexedrine for ADHD by his psychiatrist. He also had his tonsils and adnoids removed. His sleeping improved but his behavir got worse. He became more agreessive. Finally after a par mortial seizure, the psychiatrist took him off the medicine and basically told us there was nothing more he could do for us. We took our son to a developmental neurologist today. diagnosis him with Pervasive Developmental Disorder (PDD)-not otherwise specified and Rx'd a ECG to rule out a seizure disorder and wants genetic testing because he has a bilateral siman crease in is hands(typical with people with down syndrome). In addition to Rx-ing clodidine the medication I orginally refused from the psychiatrist. Tonight is the first night we tried it and I am scared as anything from everything I have read on line. I am being made to feel like a bad parent for putting on the drugs because "he is just a typical boy" and a for looking for a problem and a bad parent if I don't because I could be denying him the help he needs.
I just want whats best for him and I am scared that I am going to end up hurting him. The different diagnosis and no closer to any answers. I cried from the Dr office to the school and all day at work because I feel now I have more questions than answers. And I was offended by the Dr's insensitive comment that this is fixable, Autism is not and this is why it's called practicing medicine, because Pervasive Developmental Disorder (PDD) was not a definitive diagnosis.

Isn't Pervasive Developmental Disorder (PDD) a form of autism?

 

[SRL]

Hi there... I have not checked in in awhile. Sorry about that it's been a quite a few months.

My 4 year old son was put on dexedrine for ADHD by his psychiatrist. He also had his tonsils and adnoids removed. His sleeping improved but his behavir got worse. He became more agreessive. Finally after a par mortial seizure, the psychiatrist took him off the medicine and basically told us there was nothing more he could do for us. We took our son to a developmental neurologist today. diagnosis him with Pervasive Developmental Disorder (PDD)-not otherwise specified and Rx'd a ECG to rule out a seizure disorder and wants genetic testing because he has a bilateral siman crease in is hands(typical with people with down syndrome). In addition to Rx-ing clodidine the medication I orginally refused from the psychiatrist. Tonight is the first night we tried it and I am scared as anything from everything I have read on line. I am being made to feel like a bad parent for putting on the drugs because "he is just a typical boy" and a for looking for a problem and a bad parent if I don't because I could be denying him the help he needs.
I just want whats best for him and I am scared that I am going to end up hurting him. The different diagnosis and no closer to any answers. I cried from the Dr office to the school and all day at work because I feel now I have more questions than answers. And I was offended by the Dr's insensitive comment that this is fixable, Autism is not and this is why it's called practicing medicine, because Pervasive Developmental Disorder (PDD) was not a definitive diagnosis.

Isn't Pervasive Developmental Disorder (PDD) a form of autism?

I'm sorry that this has been so hard. It sounds like the dev neuro was covering a lot of bases with the testing and that's a really good thing. Good for him for picking up on the palm creases and ordering the genetic testing.

Yes, Pervasive Developmental Disorder (PDD)-not otherwise specified is generally considered one of the Autistic Spectrum Disorders. Looking back at the beginning of this thread I saw that's what we parents were suggesting that you look into based on your description. Honestly this diagnosis never goes down well with parents at first. Take some time with it, do some reading, find a discussion board with parents of kids with Autism Spectrum Disorders (ASD)'s and see if what they're talking about sounds familiar. Try some of the therapies and strategies and see if they help. That will help you see if the diagnosis "fits".

 

[ivas611]

Thanks for your advice and I will check out the other forums. The diagnosis was a bit hard at first but at least I have some idea of a direction to go in. It's the medication that's scares me more than anything and the uncertainty of the genetic testing. There is not a lot of information available about it since he does not have down syndrome.

I know I need to learn to take it one day at a time. Everythime something new statrs to work (i.e. the surgery or medication) I think that I see a silver lining and we have figured things out and all will be good in our world. The after a few days or a week the storm rolls in and I feel lost again. We start family counseling on Monday, I hope that will shed some light.

This morning my son is a complete zombie, I hate this. I know it's only been one day. Hopefully, it will get better.

Thanks again.