New and need help

Discussion in 'General Parenting' started by Tate1, Jul 16, 2008.

  1. Tate1

    Tate1 New Member

    My difficult child is 3 years old. He has epilepsy and anxiety issues. The psychiatrist feels he has severe separation anxiety and maybe social anxiety. He is going for a formal assessment at a partial hospitalization program hopefully next week. We are just waiting for an opening. But I have been lurking here and hope we can get some advice to carry us thru in the meantime. difficult child was an easy baby as far as temperment goes. He slept thru the night at 1 week old. Transitions were a breeze. The pediatrician used to say he was so easy going he had to toughen up a little so people didn't walk all over him in life. Since he was diagnosed with epilepsy he has been thru extensive medical workups and hospitalizations. We have been thru multiple drugs that didn't work. Then he started lamictal and our world as we knew it was over. The seizures are at the best control ever but the anxiety kicked in. Our first experience was when difficult child at 2 1/2 started throwing chairs in a Dr's office waiting room between him and myself. He was in a complete melt down. Before this I never saw a violent episode. Since then everything has continued downhill. We started seeing a psychologist who feels the anxiety has been worsened by the death of our beloved dog. difficult child now hits and kicks violently at times of separation...bedtime...time for daycare. This occurs daily. He is also more angry since the dog died. Everything makes sense but we just don't know what to do about the behavior. Our psychologist is on a leave of absence, the psychiatrist referred us to the partial program and we are on a waitlist. The other day difficult child was was so violent at Home Depot I put him unrestrained in his carseat and sat in front and he climbed over the seats to continue hitting me. Tonite was a good night. After 3 hours of calmly returning him to bed and lots of praise about how good he was doing the anxiety kicked in too much and he began the rampage I was calmly walking up the steps and he ran from me so out of control he ran into a wall and actually cut his forehead. I am so at a loss as to what to do at this point for the out of control behavior. It is getting to the point of hurting himself and us. I want to help him so desperately and I feel lost in the healthcare system right now. Any suggestions would be helpful.
  2. SRL

    SRL Active Member

    Hi Tate1 and welcome.

    I'm not really savvy on epilepsy medications but some of the parents who are will no doubt check in here soon.

    I'm a mom of a child who had debilitating anxiety when he was younger and who had a bad responses to the medications we tried. I'm very concerned that the docs would opt to continue your child on this medication with such a severe side effect. Severe anxiety is not something most kids bounce back from easily: it took one full year to get my difficult child back to baseline behaviors after the anxiety/medication crash.

    Were all behaviors and developmental milestones were on target until he started this medication?

    I'm not sure what the psychiatrist is hoping to accomplish with a partial program or by what they think you will gain by seeing a psychologist to work on behavioral issues. in my opinion, there is absolutely no working on behaviors that are caused by medication reactions in a 3 year old.

    Knowing what I know now and having lived to tell about it, I'll tell you what I'd do if I were in your shoes. I'd get him scheduled at one of the bigger clinics such as Mayo Clinic or somewhere similar on the east coast where you'll find some of the best neurologists in the world and where they are set up to deal with out of town patients. There is so much going on developmentally at this age that I wouldn't mess around. If he's this sensitive to medications you want to make sure there are no other underlying issues and have the best people possible working to adjust the medications.

    A word of advice about the trips out: most young children with the issues that you are describing won't be able to handle trips out to stores, etc. I know it's incredibly difficult for the family but if you have other options than to take him out, it would probably avoid some problems for you.
  3. Andy

    Andy Active Member

    This suggestion will not solve anything medical - you still need to put that at top priority - however, it may help in a way with behaviors:

    You mentioned that things seem worse since the loss of the family dog. I would like to share our experience.

    I have an 11 yr old boy who last summer experienced a panic attack and went down hill after that. He was diagnosed with deep anxiety. One issue he had was he wanted a dog. Now, my husband and I do not EVER want a dog. We know that the ultimate responsibility of taking care of one would be ours and neither of us wanted that responisibility so no dog in our house.

    difficult child would whine about a dog and I was so close to getting one because it got to the point where I did believe he NEEDED one but although I do a lot of things without husband's permission, this is one thing I could not do. There are certain things in a marriage that both do have to agree on. He is adamant about not having a dog (even an outside one).

    Our 17 yr old easy child was looking to buy a lap dog - she also has been wanting a pet - a cat did not work out for her. One day she found a bichon friese puppy that she wanted. I allowed her to buy it with the condition that difficult child gets time with it and took her to pick it up.

    I knew husband would not be happy, but I also knew difficult child NEEDED a dog in the house (though a bit bigger dog would be a better fit). husband is dealing with it and I can make easy child accountable (It also got her home on curfew because puppy needs to go out every few hours and overnight is her duty).

    difficult child was in charge of mornings, they take turns in afternoon/evening, and easy child is in charge overnight. I ended up doing mornings since it was too early for difficult child to be up and I also have to come home at noon sometimes which I absoluetly hate. However, the pay off is HUGE. Having a dog to play with and take care of has done a WORLD of good for difficult child. He does not get as anxious as he use to. I do notice his anxiety levels are not as high.

    We found that being bored brings on difficult child's anxiety isssues. The puppy has filled in many many many hours that used to be boring.

    Are you looking at replacing the dog? From someone who absolutely hates the responsibility of a pet, I am so glad we have one. Some kids just need a pet. There is something about a living breathing pet who is a playmate that calms the soul.
  4. Sara PA

    Sara PA New Member

    What type of seizures and where are they located? Any chance you are seeing partial seizure activity? Is he taking only Lamictal?

    My son's story is long and not really relevant to your son so I'll skip the boring details, but after my son stopped his other medications he continued on the Lamictal for quite a while. We thought it was helping but I have to admit that since he stopped taking it, his anxiety -- which prevented him from leaving the house for years -- has pretty much disappeared. I was never quite sure if that was because his brain healed, because he matured, because the Lamictal was causing anxiety or all of the above.

    I have some concern that people are looking for psychological explanations for what very well may be neurological issues that your son is continuing to have.

    I have a friend who has temporal lobe epilepsy and has been seizure free for the first time on Topamax and Lacmital but he had to add Lexapro for the depression and anxiety. There is the theory out there that controlling seizures causes depression and anxiety. Or maybe the drugs do. When I was diagnosed there was the psychological theory that people with controlled seizures had increased anxiety and depression because we sat around worrying about when we were going to have another seizure. I assure that theory is hogwash.
  5. Tate1

    Tate1 New Member

    They are sending difficult child to partial program because they are the people in the area who have the experience to work with kids with medical issues and behavioral issues. The first hope is to sort through what is causing what. The second is to try behavior mod before more medications as seizure threshold will be lowered by anxiety medications. difficult child can not afford that. It has taken over 2 years to get him to partial control of seizures. He has been on most medications and failed them. What is left he is allergic to. He was set for brain surgery before the lamictal gave us seizure hope. The anxiety is worse now that environmental factors have come into play...3 major deaths in a year etc. They feel his medical treatments have been traumatizing. The psychologist also feels cognitively difficult child is about 2 years advanced and emotionally is at a 3 year old level. She says the split can actually cause the anxiety problem. I talked to the hospital today. They already talked about medications. We will see when we get there on Monday. I just know he can not continue so anxious. I understand why he freaks out but we are at a loss to help him gain control.

    As for the dog we are waiting for our puppy to be old enough to take home. We get to go meet her in 2 weeks and bring her home in 4 weeks. I agree it will be a huge help for him. He yearns for companionship in the form of a sibling but the dog will have to suffice as we can't handle a second one with things the way they are.
  6. SRL

    SRL Active Member

    Specifically what is he doing that is causing the psychologist to place him at 2 years advanced cognitively? I had a child that started reading/spelling when he was 28 months and could name most of the countries and their capitals by age 5 so I've dealt with this.

    For bedtime, you might ask his doctors about Meltatonin. Parents here have had good success with it, most of them without side effects. Do ask your doctors though as there is at least one seizure medication it can't be used with. GNC sells a child's formula.

    Also, I thought to mention Sensory Integration Dysfunction. It can really kick up around age 3 as children become more aware of their surroundings and can majorly contribute to anxiety and meltdowns. Normal sensory input to us can be all out assault to a child with Sensory Integration Disorder (SID).
  7. Tate1

    Tate1 New Member

    As for the Sensory Integration Disorder (SID) thoughts difficult child has had issues with that in the past. The Occupational Therapist (OT) says everything is good now. And for the most part it does seem that way after much therapy except for the social anxiety. I am not so sure there is not a sensory component still. However when you ask difficult child what he is afraid of he will tell you it is not safe. This is not a concept he ever got from us. As for separation difficult child will express his fears at times and tells us he is afraid we are going to die or he is going to die. He is afraid when he goes to the doctor's that "the doctor will not make me better and I will die anyway." It is always about safety and death. Always. The problem becomes when he is not able to be reassured he has told me you can't tell me we are safe because you can't always keep us safe. (emphasis on always) And then just screamed so we are not safe. Don't tell me we are safe. But again the hospital is designed to take all these components into play and discern what is contributing. As for the melatonin the neurologist needs to be consulted for any medication changes. I talked to the nurse at the hospital and she was shocked no one gave him something for sleep so I am sure (counting the hours) we will have something shortly. It has gotten much worse over the past month and we have been in a healthcare crack during that time. The psychiatrist didn't want to medicate yet, the neurologist said if we didn't get into the hospital soon he would but wanted to wait, the psychologist is on leave, the pediatrician is just trying to get someone to help us as he feels it is beyond his expertise to be playing with these medications. And here we are just watching life spiral out of control. Now that difficult child has gotten hurt an alarm has gone off. 2 days to go.
  8. Sara PA

    Sara PA New Member

    Are you aware that Lamictal can interfere with sleep? My son got around that by taking his entire dose in the morning but my friend, who needs to take his twice a day doesn't sleep for about three hours after taking his night time dose.
  9. SRL

    SRL Active Member

    Does your difficult child have any speech issues--either delays, articulation, or using language beyond his peers?
  10. Tate1

    Tate1 New Member

    difficult child's language is more advanced than peers.
  11. Tate1

    Tate1 New Member

    I didn't know lamictal could interfere with sleep. That is a very interesting point. Will have to discuss that with neuro but unfortunately his biggest dose is at nighttime as his seizures occur when rising from sleep.
  12. SRL

    SRL Active Member

    Is he starting to use words and phrases that are more adult sounding?

    How about using chunks of language he's memorized from books or tv (mine used to belt out phrases from Magic School Bus)?

    Do you hear any echoing ie you say "Do you want a cookie?" and he repeats that back instead of answering "Yes."
  13. Sara PA

    Sara PA New Member

    I've been thinking about your situation and started pulling some old anecdotal information out of the back drawers of the filing cabinet in my brain.

    Do you know that Lamictal is a mood stabilizer approved to treat bipolar in people over 18? As is common in our health system, once a drug is approved for an indication for one age group it is almost immediately prescribed for that indication for all age groups. Even before Lamictal was officially approved for use as a mood stabilizer, it was being trailed based on favorable reports presented at medical conventions. And it was occaisionally and cautiously being prescribed for children for whom nothing else seemed to work.

    Almost immediately parents reported that Lamictal was "activating" for some children. I did notice at the time that Lamictal was often the second mood stabilizer for most of those children and it was usually added to Trileptal. These drugs along with Neurontin were favored for kids because they don't require blood draws. "Activating" means that the drug induced mania, in bipolar parlance. Because the Lamictal was then prescribed for bipolar just like it was for epilepsy, the drug was administered twice a day and kids were taking it before bedtime. Inability to sleep = mania in the bipolar world. Now I'm wonder if maybe it wasn't the Trileptal/Lamictal combo, maybe it wasn't mania, maybe it was an adverse reaction. Maybe it was all of those things coming together.

    Neurontin (gabapentin) was widely prescribed for bipolar at the time even thought there wasn't one iota of clinical research to support the use. Turns out its use for bipolar and 10 (IIRC) other indications was all lies, for which the manufacturer paid a heavy price. While is was still suppose to be the biggest new wonder drug since aspirin, parents reported that it was "like giving them water" or worse -- sometimes a child's behavior deteriorated. A search through the epilepsy literature turned up the information that gabapentin causes aggressive and hostile behavior in children.

    For a long time, Lamictal wasn't prescribed much for children, then children under 12, then under 6 because of the now controversial belief that it was more likely than other anticonvulsants to cause Stevens-Johnson. So even anecdotal information was scarce, at least on the various mood disorder boards.

    Now I'm beginning to wonder if the Lamictal does cause psychiatric side effects which make its use for children problematic. It absolutely can cause sleeplessness. Maybe, like gabapentin, it can cause aggression/hostility. Maybe like I saw in my son (who was 15 years older than your child) it can cause anxiety. I think you have to consider the possibility. And, if that's the case, I doubt that any behavior modification program or the addition of any other drug will result in a satisfactory outcome.

    It breaks my heart to write this. I know Lamictal is a great anticonvulsant and is the mood stabilizer of choice for teenagers. We thought it was our son's one miracle drug. Putting all the pieces together, now I'm not so sure.

    And it saddens me to suggest this to you because of the positive results you've seen for seizure control. If Lamictal has these psychiatric side effects, it puts you between a rock and a hard place.
  14. laurensmyprincess

    laurensmyprincess New Member

    Hi Tate,
    I can relate to your situation.
    My daughter, 6, has temporal lobe epilepsy and was diagnosis at 2 1/2. She did have brain surgery last year to remove the seizure focus. She is still having seizures and being re-evaulated for reoperation.

    She is currently on Tegretol CR, Lamictal and we are weaning gabapentin. Her behaviour has always been more intense, impuslive, hyper. She has definate attention and focus issues and has for as long as we can remember.

    These issues have seemed to be heightened as of late, and we are reducing the gabapentin. No one will confirm that it is the medication causing the problem, but the behaviours were exaserbated after our 2 last increases, so it stands to reason that it might be the cause.

    She has been on lamictal for over 2 years and she has just started to show signs of anxiety. It is so hard to know with epilepsy, medications, age of the child, where one problem starts and another begins. It is a huge puzzle that you can never quite fit together. And yes, it is beyond frustrating. I completely understand.

    I agree that you should consider the lamictal as a possible irritant to your child's behavioural concerns. My experience has been that the docs are very hesitant to suggest that it might be the medications causing the behavioural concern. The only drug that my neuro has agreed can cause behavioural disturbance in children is keppra. It has a very high incidence of emotional lability.

    I am here if you want to chat.

    Are you a member of the Epilepsy Foundation of America? If not, you should check out their website ( They have a very active parents helping parents community just like this one. There are many there that can share their experiences and advice with you specifically regarding epilepsy and medications.
  15. Sara PA

    Sara PA New Member

    I went googling and discovered there are a lot of anecdotal reports out there about increased anxiety on Lamictal. There are also a lot of reports about bad dreams. I had forgotten about my son's bad dreams.

    A little guy who is having bad dreams isn't going to be eager to go to bed.