Update on difficult child

[mum2JK&TH]

Went to Neuro - he seemed at a loss :crying: What am I missing here? We are now trying the 1/4 tablet of Clonidine (Dixatrit) at 8 am and then at 4 pm and continuing the Concerta. He did not know what Tenex was so I had to call him when we got home to give him the brand name (I guess it is different here in Canada) and he will look into it. difficult child cannot walk without bending over every other step and now he has to touch his toes. husband and I tried to have a night out to ourselves and when I called to check up on difficult child, he wasn't doing well. He said that at one point everything seemed to drop and he felt dizzy and hot. My first concern was his blood pressure. We rushed home and took him to Emerg. I had to help him put his jacket on and help walk him to the car, he is almost crippled from this tic. The emerg doctor knew nothing, absolutely nothing, totally useless. What a total sense of helplessness when a doctor doesn't have a clue what medication does what and if difficult child is suffering from side effects or it's the tic causing these feelings! All vitals are normal, so we left feeling at least grateful for that.
But here we are still....husband would like to pull him off of everything and keep him home either homeschool or a special school. I don't know what to do. Our family is not coping. I am trying to keep it all together but I have run out of answers to calm everyones fears. difficult child cannot do anything at this point...he either has to lie down or sit with something like a desk or table blocking his feet so he cannot bend over.
I don't know anymore what to do.

 

[flutterbee]

I'm so sorry you are going through this. I wish the doctors had more answers for you.


{{{HUGS}}} to you and yours.

 

[kris]

it sure sounds like you little guy is having an extremely difficult time. the neuro didn't have any better suggestions or medications to try & stop this tic~ing?

are you a stay at home mom who can homeschool him? will he cooperate? how long has he been on his medications? could the concerta be the fly in the ointment? sorry so many questions & not a real suggestion to give you.

kris

 

[Wiped Out]

I'm so sorry for your little guy. Saying prayers he is better soon and the docs come up with some answers. :angel:

 

[smallworld]

My son had had bad tics while taking stimulants (particularly Adderall, but his tics actually started on Concerta). If your difficult child's tics are so debilitating that he's barely functioning, in your shoes I'd consider a trial without Concerta to see if the tics resolve (it also sounds as if the Concerta may have stirred up some Obsessive Compulsive Disorder (OCD) behavior). If the symptoms improve off the stimulant, you'll know the Concerta is responsible. To my way of thinking, I'd rather have an inattentive, hyperactive kid than one who can't function very well at all.

Sending positive thoughts and hugs your way.

 

[tiredmommy]

Christine,
I agree with smallworld. It's time to consider a medication wash and re-trial. I don't ever recall you posting that the tics were this big and frequent. My heart goes out to you and difficult child. {{{Hugs}}}

 

[mum2JK&TH]

The problem is that we know it is most likely the stimulant. However difficult child is so severly ADHD that he cannot cope in a school environment without medications. We have tried Strattera and the neuro said the next step would be risperdal (not sure I spelt that right). However he is afraid of the weight gain and to be honest so are we. He is a very active boy whose life revolves around his hockey, would the weight gain not cause problems for that. We would like to stop all medications but difficult child is afraid to have bad days (another Obsessive Compulsive Disorder (OCD) behavior). I would take my hyper, inattentive little boy any day. His Tourettes and Obsessive Compulsive Disorder (OCD) was brought on by the Ritalin last year. When we tried the Concerta this time around, everything seemed to be ok, until we tried to lower his Clonidine, that's when everything fell apart. We are trying to up the Clonidine back to where is was when everything was ok, but it's not working. I think his body is just on overload. His tics have never, never been this bad. Neuro in my opinion really didn't know what the next step was. I cannot believe he has not faced this before?

I don't know what to do for him anymore, I feel like we are back to square one :frown: Thanks for the hugs, they are really needed right now :frown:

 

[busywend]

Christine, I do not know much about it and in fact this may be the first time I recommend it (not against it at all) but have you tried any of the natural treatments? Have you visited the Natural Treatments Forum right here on this site?
It may be worth looking into. I think I would choose to take him off the stimulant and look for other methods to calm his ADHD symptoms. There are specific diets to try, natural supplements. There was one that was a fish oil that I wanted to try with difficult child, but she refused.

 

[timer lady]

SW,

The tweedles have little to no ability to focus. However, psychiatrist & I decided that trying to add a stimulant into the tweedles medications at this time was a time bomb. Simply wasn't worth it.

Instead, we had to work with school & the IEP process to address the attention issue there. The tweedles are in a day treatment program partially for that very reason.

Do the tweedles have ADHD? Most likely not - it's probably the PTSD, especially for kt.

A medication wash is a good idea though I wouldn't want to do it in the home setting. There are too many variables here. Can psychiatrist set up a hospitalization, do the medication wash & a complete evaluation?

Just something to consider.

 

[jannie]

Hi Christine-
I'm so sorry things are not improving. By any chance is there a support group in your area for Tourettes? I've forgotten your specific details, but are you seeing a nuerologist that specializes in Tourette's Syndrome because perhaps a neurologist would be able to offer more ideas.

My roommate in college had Tourette's Syndrome and she went through some pretty severe times, however the severe tics would pass and life would continue. She has used many different medications to reduce tics. Hopefully difficult child severe tics will lesson. Are there any major stressors going on in his life? Is homework causing increased anxiety? I would do all you could right now to reduce stress.

There are some good books out there for tourette. Some are written for kids as well.

I agree with the others regarding the stimulants. I know his attention is greatly impacted, however major tics can have more of an impact than decreased attention. I would stop the stimulants and see what happens.

Fingers crossed that things improve so he can be back out there playing hockey,

Sending hugs.

 

[Sheila]

If difficult child's doctor can't help you with this problem, I'd get another. You might also want to consider getting a pediatric (child and adoloscent) psychiatrist to help manage difficult child medications.

I'd also call the pharmacist immediately with a list and dosage of all difficult child's medications. A pharmacist would be aware of medication interactions and side affects -- more than some doctors. It's their "specialty."

You may want to do some research on Tardive Dyskinesia and other causes of tics besides Tourettes. From http://www.childbrain.com/ticdisorder.shtml .

Quote: Other tic suppressing medications included pimozide, fluphenazine, and haloperidol. These are highly effective, but may be associated with some serious side effects, including liver and blood clot dysfunctions, weight gain, allergic reactions, dystonic reactions, and tardive dyskinesia. Tardive dyskinesia is a potentially irreversible movement disorder that involves the mouth, tongue, and extremities.

Quote: Tics may be caused by extreme stress, some medications including Ritalin, Dexedrine, and Adderall (stimulants), or Tegretol may cause them. On rare occasions, some infections that involve the brain (encephalitis) may be associated with tics. Other genetic and metabolic disorders, mostly those that affect the basal ganglia may be associated with tics or with tic-like phenomenon. Also viral infections may rarely cause tics. Streptococcal infections have been associated with the development of tics and obsessive-compulsive behaviors. PANDAS or pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections, is a known entity in which the antibodies to the streptococcal bacteria attack the basal ganglia causing the above-mentioned symptoms.

Tics must be differentiated from chorea. Chorea is a movement disorder that unlike tics, cannot be reproduced by an observer, is more difficult to suppress, and is incorporated into voluntary movements. Rarely some seizures may be brief and rapid imitating tic disorders.

I noticed your signature says difficult child is on Clonidine. Another site I browsed said, "Overdosing on Tenex can have severe effects." Yet another said, "Like another antihypertensive drug, Catapres etc. (Clonidine), Tenex regulates levels of the neurotransmitter norepinephrine and may be effective in reducing ADHD symptoms alone or in combination with stimulants." So it ran through my mind that if difficult child is taking Clonidine and Tenex, is there a possibility of inadvertent overdosing?

Very worrisome.

 

[mum2JK&TH]

Sheila - difficult child isn't taking both, just the Clonidine. I asked the doctor if we could switch to Tenex because apparently it doesn't have as many side effects and doesn't cause as much drowsiness. He is only on a small dose of the Clonidine.

Busywend - I will take a look in the Natural Forum, thank you :smile:

difficult child is still doing it :frown: We are now keeping a diary to see when he is doing it. We are looking for the triggers, we have noticed his voice changes around the same time he bends over (he starts talking in a high voice like he was 4 or 5 yrs old).

Nothing has change in his life. We are pretty boring people, lol! If anything it has been quiter as he hasn't had as much hockey. Homework is the same pretty much every week so there aren't any suprises there.

The new medication change has until Tuesday to start working. Thank goodness this week is spring break!