Prader Willi Syndrome

Discussion in 'General Parenting' started by lizzie09, Nov 27, 2008.

  1. lizzie09

    lizzie09 lizzie

    I have posted before about my son and PWS
    I had hoped we would not have our unusual behavioural epsiode again this year. It is a yearly event for the past 3 and a half years and was unmedicated.
    This time when the episode started just over 10days ago we tried to keep it at bay.
    it didnt happen and things started to escalate

    Our day centre has a new psychiatrist and today I had AP.
    It seems son has bi polar. I was happy that we have this new doctor and a team ready to take on these various cases in the centre as I had a difficulty getting anyone on board to help over the years, In fact difficulty is not the word..the word is failure.

    Now. doctor has prescribed 2 drugs. Epilum and Seroquel as we are in middle of episode. As PWS has weight issues doctor said Seroquel has less weight problems than say Zyprexa in fact he said weight was not an issue with Seroquel but thats not what I see here or on internet in general. Not quite what I was told. Does he really need two drugs?
    I thought they were both stabilizers.. I have no knoweldge whatsover on medications as a lot of you do here. Docs are so confusing,

    Anyone to talk to me about these medications?

    I am relieved that we might get some relief before Christmas but now I am a bit confused.
  2. klmno

    klmno Active Member

    Hi! Today is Thanksgiving here so things will probably be slow around the board. I'm not one of the more knowledgable ones about medications but didn't want to leave you "hanging" until someone else can come along with more experience.

    I can tell you that mood stabilizers are usually necessary for bipolar treatment and that it is not uncommon at all for more than one to be used. My son is on two. It usually has something to do with the specific class or type of the drug and what chemicals they help in the brain. There are the ones that are typical referred to as first-line stabilizers, such as lamictol (sp) and lithium. Then, there are anti-psychotics that are added on quite frequently. I know it's frightening when a parent first hears about all this and we see how many medications our kids need. It still bothers me some, however, the alternative scares me more.

    Here is a link that might help you to understand the medications better:

    I'd also suggest the book "The Bipolar Child"

    Both of these have invaluable information.

    In case no one has mentioned it before, the book "The Explosive Child" might help you cope with your child better and help you help him.
    Last edited: Nov 27, 2008
  3. lizzie09

    lizzie09 lizzie

    Hey KLNO

    Thanks for answering......yes the alternative is even more scary I do agree/
    Im not that shocked at diagnosis...someone here had suggested that and it had to be in my mind with the highs of the episode.
    Just need some relief and hopefully we will be in control again instead of this awful nearly 4 year wait to get ANYTHING

    Hope Thanksgiving goes great...sorry forgot all about it as am in Ireland!
  4. klmno

    klmno Active Member

    Hi! I just read your signature and I think you are referring to a 22yo. Sorry- some of the things I recommended might not help much then! LOL! But, the first link still might help.
  5. totoro

    totoro Mom? What's a GFG?

    Hi Lizzie
    Because I don't know what he can or can not take with his PWS some might be Contraindicated for him? As well as the weight gain issues.
    Smallworld is really good about knowledge about the medications.
    KLMNO is right about the book though, it helps me even as an adult!

    But the first line mood stabilizers usually are- Lithium, Depakote and Tegratol... the others that can be used would be Lamictal and Trileptal, Topamax. Trileptal is a form of Tegratol.
    Some cause weight gain some are easier to take some need blood draws... the Bipolar child website has a medication page. I have a link to some medication charts I think under the Social groups. One is
    Them you get into the Atypical-Antipsychotics
    Which would be Abilify, Risperdal, Seroquel

    I am sure there are others...

    Basically Lithium is the oldest and the most studies. Lamictal needs no blood draws but works well for not over the top mania. I take it with Topamax (this has been found to have Mood stabilizing properties) Lamictal does not have a lot of weight gain nor does Topamax.

    Seroquel as far as AP's is usually the least as far as weight gain. My daughter K has been on all 3. Seroquel had caused her to gain weight the slowest.
    It also is reported and approved recently to be used as an add on for Bipolar treatment with a MS (Mood Stabilizer).
    But some psychiatrist's just use it alone. We are...

    SOme have had luck with the weight gain on Abilify also... it just depends on the person and severity and how much they have to take etc...

    Look are some of the websites. I have some listed under the social group. See if you can find anything to help you and I am sure we can find more!!! you can add any yourself as well!!!
    I am sorry BiPolar (BP) was added but it may lead you to some answers.
  6. lizzie09

    lizzie09 lizzie

    Thanks so much for that Totoro.

    There was nothing he couldnt try but we are all thinking about weight gain as an added worry.

    I was just amazed that 2 medications would have to be used ...I thought there would be only one.

    I hope he will be taken off the Ap after the episode but I think he will be left on mood stabilizer (Valoroate or Epilim as its called too)

    I dont know if the 3 doses of Seroquel is a lot?

    I am relieved to have something as I knew some thing was wrong for a good while. I suppose the epilim will help sleep at night...many thanks
    so pleased with the information coming through as I have no experience of this at all...
  7. Marguerite

    Marguerite Active Member

    I'm not affected by Thanksgiving, it's just an ordinary day for us (besides, it's Friday here!). But I don't know about those medications specifically, plus I have no personal experience with BiPolar (BP).

    However, some thoughts here and some ideas:

    First, the information on these drugs needs to take into account WHY there is any possible connection to weight gain. This could link in to the flip side of PWS - if a drug increases appetite, say, by stimulating the appetite centre in the hypothalamus then chances are it will actually have no effect in PWS.

    You need to ask specific enquiries about these medications. The internet CAN help but you may need an expert to analyse the findings. But you should also have access to people who can give you the answers more personally.
    So first, try asking your local pharmacist, the one who is dispensing the medications. Or if the doctor organised the prescriptions away from your usual pharmacist, still feel free to go to your local chemist and ask him/her to try to give you more specific information. (We do our best to always use the same pharmacist to dispense medications for our family, but of course it's not always possible. Our state-based health system in Australia allows us to take our business anywhere, but it's easier to manage the paperwork if we keep it local; plus we believe in supporting local business, so we leave all our prescription repeats with our mate down the road, if we need a fresh supply it's just a quick phone call without me having to rummage through our papers at home because our papers are all at the shop. He then has a copy of all our medication expenses and will print it out for us at tax return time).
    So ask your pharmacist to specifically dig for HOW these medications cause increase in appetite.

    Second option (which you can try concurrently) - call the drug company and ask to speak to their advisors. Explain that you have an unusual case and want to know whether the mode of action or even the side effects at any point require the involvement of the hypothalamus.

    We know in PWS that only parts of the hypothalamus don't work properly. Other bits MUST be working or the problems would be much worse. The information you need here involves an understanding of biochemistry plus physiology. The product development experts at the drug company should have this knowledge, but may not know a great deal about PWS and this is where you need to help. They will know who to ask.

    In case you're not sure who to call, check the box of pills. It should give the company name and hopefully also contact information. Most drug companies have a toll free number you can call.

    I've had to do this a number of times when I've been concerned about possible allergy problems or drug interactions,; it's their job to make sure you have someone to advise you in such curly questions.

    As for your son - this is weird. When you told me about this before, I did wonder if this was going to happen again. It's fascinating, or would be if it weren't so worrying for you.

    I'm not so sure if BiPolar (BP) is the entire answer, but it's all you've got at the moment and it's worth a try. You need to do the "cooperative patient" bit, as I call it, in the same way I did my best to lose weight when my doctor told me that I had to lose weight so my liver would begin to recover. I've now lost the weight and my liver is still in bad shape - so it means I can go back to my specialist in a couple of months and say, "Ok, - NOW what do we try?"

    With your son, this needs to be checked out and tried, I think. But if it's not tha answer, then at least this will have been thoroughly checked out and ruled out. Fewer possibilities left.

    Have his serotonin and melatonin levels been checked out? I think we talked about this last time you posted about this. You're heading into winter, the days are getting shorter and there is a condition where reduced daylight hours triggers a drop in hormone levels which can trigger behaviour changes including depression. We know PWS people have some odd hormone things going on anyway so it may make your son more sensitive than a lot of people are, even though in some areas hormonally he's less sensitive.

    I hope it all turns out that you don't have any weight gain problems with him - at least no more than you already have anyway.

    Last edited: Nov 27, 2008
  8. lizzie09

    lizzie09 lizzie

    Thanks Marguerite.....just reading you post early Friday morning here
    Makes a lot of sense. But as you also say its a bit weird,,,the Gp who was told to write prescription bydoc in centre was amazed at how this diagnosis was reached.

    we will proceed with caution!!!

    I will do the research you suggested .. many thanks for replying as usual