Jump to content

Menu

Severe Mood Dysregulation?


Recommended Posts

The initial diagnosis for my ds9 who was recently hospitalized (and is still there) was mood disorder-NOS. The psychiatrist has recently said he thinks it is likely Severe Mood Dysregulation. I did some research and it seems to fit. He wanted to prescribe Prozac or Celexa but when I asked about Zoloft he said that would be a good choice as well. Does anybody have any experience with this? It's not bi-polar..studies have shown that the 2 disorders effect different areas of the brain. Thanks in advance for any info. you might have. Was also curious about what type of therapy would be helpful for this as well as any natural remedies. He also has shown some ADD/ADHD behavior but I don't think the drugs mentioned would help with his attention/focus. I'd hate to think we'd have to have him on 2 different drugs.

Link to comment
Share on other sites

Ugh. No, but you are not the first person to suggest this. Can't imagine having to live gluten-free. Gluten is in EVERYTHING and this kid is CARB CRAZY! Why would so many people be gluten intolerant today? I mean wheat and barley are foods that God gave us to eat! It's not like some man-made preservative or chemical dye or something yucky like that. Thank you for that insight, though. I do plan to investigate this further when he gets home. :)

Link to comment
Share on other sites

My understanding is that grains would not have been a human food until after men started farming. Man's original food was fruits and veggies, then later meat (from a biblical perspective). Being gluten free is really not that bad. If gluten was the only thing we had to avoid I'd be so happy LOL. Still good healthy carbs out there without gluten, and lots of baking options. Another thought, an insane craving for a certain food can be a sign of an intolerance/allergy. Also wheat is addictive, makes the brain light up (dopamine receptors or whatever it is)

Link to comment
Share on other sites

I don't know much about that as being different from bipolar---as in opposite type treatment. For bipolar, you would want to avoid meds like the antidepressants. I would just ask them why a mood stabilizer would not be indicated---they may well have a very good reason as my background knowledge is bipolar.

 

As to the carbs---if he is seriously a carb addict then removing gluten might be very helpful. It did not help here and we did the gluten and casein free for quite a while. It is TOUGH but doable. I have seen it work for a few kids so again, it might be worth a shot.

Link to comment
Share on other sites

:confused: That about sums it up! I wondered about the psych prescribing an anti-deprressant instead of a mood stabilizer. :confused: But as Zoloft often works to "mellow" people, perhaps Prozac or Celexa do as well? I know Zoloft mellowed me. As to the gluten intolerance...ds9 didn't have any signs as a baby (he was chubby, ate everything, had a wonderfully calm and relaxed personality, was happy, always smiling, etc.). It wasn't until about age 5 or so that we saw the signs of the moodiness, irritability, rages, certain rigidity of his thoughts, easily frustrated, etc. He is a very, very skinny child. My husband is as well and we just thought he had the same body-type. He doesn't eat well, but certainly enough to survive, kwim? I saw that gluten intolerance can result in a failure to thrive or weight loss b/c of the lack of nutrient absorbtion. :confused: I am so confused right now I just want to cry. WHAT IS WRONG WITH MY SON!?!?!?! Sorry to scream...I'm just so frustrated.

Link to comment
Share on other sites

I did a bit of reading on it last night and it does sound different than the bipolar I know. I do know kids though that fit this category so I can only imagnine how tough life can be----there is a mom of a 4 year old who has been posting of the same severe rages in her child.

 

Did the doctors do any blood work at all? If not, I would ask your regular doctor to do that. Sometimes thyroid, blood sugar issues, etc. can also play a role. It is very helpful as well to have baseline liver and kidney function tests before starting meds.

 

Don't hesitate to question the doctors about why they are thinking of this vs. regular bipolar and why they think that an antidepressant is the first med of choice over a mood stabilizer. They might well have a good reason. I am just one that wants the doctor to EXPLAIN to me the reason and thinking process.

 

As to the gluten, it might well be an issue and worth pursuing--esp. if he went from a chubby, calm person to a very thin, very moody one.

Link to comment
Share on other sites

Ugh. No, but you are not the first person to suggest this. Can't imagine having to live gluten-free. Gluten is in EVERYTHING and this kid is CARB CRAZY! Why would so many people be gluten intolerant today? I mean wheat and barley are foods that God gave us to eat! It's not like some man-made preservative or chemical dye or something yucky like that. Thank you for that insight, though. I do plan to investigate this further when he gets home. :)

 

Sue -

 

It definitely is a royal pain to do, especially since you have so much on your plate, but it may be worth a try. My son could have easily been diagnosed with ODD prior to going gluten free. He would fight me on everything from putting on his socks to going outside to play and he couldn't play because he would get so frustrated with everything. He was only 3 when he went gluten free but we saw a difference within days and by the end of the week, we knew. So you might not even have to do it that long to see a difference. One of the biggest regrets of my life is that I did not try this diet when my son was 2 because I just felt too overwhelmed to try it and didn't believe it could make a difference.

 

Lisa

Link to comment
Share on other sites

Just make sure that if you do this, you do it 100%. You have to read EACH and EVERY box, can, package, etc. for hidden gluten. Even things like french fries can have gluten in them.

 

It IS a huge pain, not going to lie to you there, BUT if it helps, the difference can be tremendous.

 

For one of my friends, it was corn that set her son off. He wasn't this bad but everyone can tell if he gets some corn.

Link to comment
Share on other sites

:confused: That about sums it up! I wondered about the psych prescribing an anti-deprressant instead of a mood stabilizer. :confused: But as Zoloft often works to "mellow" people, perhaps Prozac or Celexa do as well? I know Zoloft mellowed me. As to the gluten intolerance...ds9 didn't have any signs as a baby (he was chubby, ate everything, had a wonderfully calm and relaxed personality, was happy, always smiling, etc.). It wasn't until about age 5 or so that we saw the signs of the moodiness, irritability, rages, certain rigidity of his thoughts, easily frustrated, etc. He is a very, very skinny child. My husband is as well and we just thought he had the same body-type. He doesn't eat well, but certainly enough to survive, kwim? I saw that gluten intolerance can result in a failure to thrive or weight loss b/c of the lack of nutrient absorbtion. :confused: I am so confused right now I just want to cry. WHAT IS WRONG WITH MY SON!?!?!?! Sorry to scream...I'm just so frustrated.

 

Have they tried a stimulant? I am very serious about this. My 9yo was a moody disaster, but he was rapid cycling. He could fly into a rage 3-4 times a day, including threatening to kill himself or others.

 

He doesn't do this on Vyvanse. It's also a med that you could start tomorrow and you would know within days if it would work - you don't have to wait for blood levels to build up or anything.

 

I am so thankful that his psych doesn't diagnose bipolar in children because that is where he would probably be. He isn't, though, and stimulants have made him into the child he was meant to be. Not only are the rages gone (for the most part - he has 1-2 a month, now) but he is learning to read at almost 10 years old. He still has a very long way to go because he has so many different issues, but this was a BIG step in the right direction.

 

I did take him for an inpatient evaluation, but he had stopped raging by that point and they did not admit him. I sat down and called every psych on our insurance until I found one that would see him within 2 weeks. The first day he was on the med, when I picked him up from school he said, "Mama, this medicine really works!" It has done nothing but get better from there.

 

ETA: My ds most likely has gluten issues as well, but we have not gone gluten free as of yet (we could not have without his being medicated.) He was diagnosed FTT in infancy and it was remedied by putting him on a gluten-free diet. We also noticed that too much wheat would make him that much more volatile.

Edited by Renee in FL
Link to comment
Share on other sites

We haven't tried meds at all yet. The psych mentioned the anti-depressants but we haven't consented to anything yet. i still want to talk to the dr. I asked for a gluten intolerance test to be done. I'm already wondering if I shouldn't just eliminate all gluten anyway just to see. Hoping the hospital can start that ball rolling.

Link to comment
Share on other sites

As someone dx with bipolar, I'm curious about the difference between bipolar and severe mood dysregulation. Will have to do some reading myself!

 

We put my five year old on celexa for anxiety recently. I was VERY reluctant to do so, given the strong history of bipolar disorder, but the anxiety was getting worse by the day and seriously impacting every aspect of life. We started on a very tiny dose and are still on about 1 mL a day. It does seem to be helping a lot, though I wouldn't call it a miracle. But life is much more manageable.

 

I had asked the doctor who prescribed this about zoloft, and she said that while it was a good choice, she preferred celexa because the liquid formulations of prozac and zoloft contain alcohol. However, my husband also takes celexa for anxiety, and it works well for him too.

 

I know that is different (anxiety vs mood regulation), but the med itself has been very well tolerated by my 39 lb 5 year old.

Link to comment
Share on other sites

Just to link here:

 

A condition that used to be characterized by discrete episodes of mania, depression, and return to premorbid personality/function (i.e., manic-depressive illness, bipolar type) is now synonymous, at least in children, with "rages." Rages are anger episodes called "mood swings" when described by parents and are explosive outbursts clearly out of proportion in both intensity and duration to the precipitant. This symptom is felt to capture the extreme irritability seen in mania. However, the irritability that often characterizes rages may occur in conjunction with many childhood disorders, most notably attention deficit hyperactivity disorder (ADHD), oppositional defiant disorder, anxiety disorders, depressive disorders, and autism spectrum disorders. One of the ongoing research questions identified by Leibenluft’s laboratory in the National Institute of Mental Health’s intramural program is whether there is any legitimacy to the assumption that these rages characterize a specific type of bipolar disorder in youth.

 

http://ajp.psychiatryonline.org/cgi/content/full/164/8/1140

 

I would start with stimulants simply based on lower side effects and less "meddling" with brain chemistry.

Link to comment
Share on other sites

He started Celexa today...I didn't ask about a stimulant yet. He was ill today due to a virus (sore throat, etc.) and feeling nauseous but I can't tell if it was the meds or the virus causing that. He was so lethargic...but he also had a high fever. So...who knows. I suppose I should ask about a stimulant to help his concentration but I though also that we could try something natural for that. Just not sure. He should be discharged tomorrow if our at-home visit goes well. I'm very hopeful b/c I miss my little guy so much, esp. now that he is sick. Oh, I also asked the dr. to do a gluten intolerance blood test and lyme (he had a tick removed last summer that resembled a deer tick but we didn't have it tested.). Just wanted to cover all my bases, kwim?

Link to comment
Share on other sites

Have they tried a stimulant? I am very serious about this. My 9yo was a moody disaster, but he was rapid cycling. He could fly into a rage 3-4 times a day, including threatening to kill himself or others.

 

He doesn't do this on Vyvanse. It's also a med that you could start tomorrow and you would know within days if it would work - you don't have to wait for blood levels to build up or anything.

 

I am so thankful that his psych doesn't diagnose bipolar in children because that is where he would probably be. He isn't, though, and stimulants have made him into the child he was meant to be. Not only are the rages gone (for the most part - he has 1-2 a month, now) but he is learning to read at almost 10 years old. He still has a very long way to go because he has so many different issues, but this was a BIG step in the right direction.

 

I did take him for an inpatient evaluation, but he had stopped raging by that point and they did not admit him. I sat down and called every psych on our insurance until I found one that would see him within 2 weeks. The first day he was on the med, when I picked him up from school he said, "Mama, this medicine really works!" It has done nothing but get better from there.

 

ETA: My ds most likely has gluten issues as well, but we have not gone gluten free as of yet (we could not have without his being medicated.) He was diagnosed FTT in infancy and it was remedied by putting him on a gluten-free diet. We also noticed that too much wheat would make him that much more volatile.

 

 

interesting in two ways....one, because we know each other from the past...and two, because my oldest was dxed first with adhd and took vyvanse, but stimulants brought out the severe bipolar symptoms in him, hence the BP diagnosis...and now my 7yo is seeming even worse than him, no meds or dx yet.

Link to comment
Share on other sites

interesting in two ways....one, because we know each other from the past...and two, because my oldest was dxed first with adhd and took vyvanse, but stimulants brought out the severe bipolar symptoms in him, hence the BP diagnosis...and now my 7yo is seeming even worse than him, no meds or dx yet.

 

That's is interesting. Did the bipolar symptoms come quickly or was it after a time? There is bipolar in my family and we do watch for it, but there has never been a rapid cycler, either. Ds has been on Vyvanse since September and for the most part the rages are gone. We had two last week, but I ignored him and refused to engage and he stopped - I think they were more habit than actual uncontrollable rage.;)

 

Did mood stabilizers help your ds? Did he get any kind of cognitive behavioral counseling? You can PM me if you want - I just wondered about how it all played out as we head towards puberty.

Link to comment
Share on other sites

As to the gluten intolerance...ds9 didn't have any signs as a baby (he was chubby, ate everything, had a wonderfully calm and relaxed personality, was happy, always smiling, etc.). It wasn't until about age 5 or so that we saw the signs of the moodiness, irritability, rages, certain rigidity of his thoughts, easily frustrated, etc. He is a very, very skinny child. My husband is as well and we just thought he had the same body-type. He doesn't eat well, but certainly enough to survive, kwim? I saw that gluten intolerance can result in a failure to thrive or weight loss b/c of the lack of nutrient absorbtion.

 

This is EXACTLY my daughter with severe non-celiac gluten intolerance. She was a chubby, happy baby, never screamed unnecessarily, always smiling.. She did, however, have bad reflux as a baby, which I can now look back on and attribute to the gluten in my breastmilk. She stopped puking as soon as I switched her to a milk-based formula around 9 months of age.

 

Today, she is EXTREMELY thin. I am thin too and come to find out, I have celiac disease!

 

One important thing to know.. People with celiac disease are not born with their celiac gene turned on. It lies dormant for years and then suddenly it can be turned on without warning.. Anything can turn it on.. Stress, a traumatic event, yeast overgrowth in the gut. For me, the birth of my 1st child turned it on 13 years ago. That is when I began to loose weight, have panic attacks, and get extremely itchy skin on my hands (some sort of dermatitis or eczema). Before my daughter was born, I was considered a "non-celiac gluten intolerant".. So I have been sensitive or intolerant to gluten my entire life, but when my daughter was born, full blown celiac disease was turned on. Looking back on my childhood, I had many symptoms of being on the spectrum (Asperger's), OCD, ADHD, etc.

 

Non-celiac gluten intolerance is what is normally associated with ADHD, mood disorders, Asperger's, OCD, learning disabilities. This is the type of response that includes IgG antibodies, so when doing any testing for gluten intolerance, you will want to make sure the lab is looking for IgG antibodies.. NOT IgA or IgE.

 

If I had to guess, I would say your son is having an IgG response to gluten, which would consider him a non-celiac gluten intolerant. This means he would be negative on a celiac test, which looks for IgA antibodies. You need a test that looks for IgG antibodies. We tested with Great Plains Labs http://www.greatplainslaboratory.com , but you can also test through Alletess http://www.foodallergy.com . You cannot test for IgG antibodies to foods through a local lab because they are not experienced with this and you will end up with botched results.

 

Here is the test we did http://www.greatplainslaboratory.com/home/eng/food_allergy_igg.asp

 

It seems like overwhelming information so please just ask if you have any questions.

Link to comment
Share on other sites

Just make sure that if you do this, you do it 100%. You have to read EACH and EVERY box, can, package, etc. for hidden gluten. Even things like french fries can have gluten in them.

 

Yes, this is a good point.. You have to do it 100% or else it's pointless. It takes nearly a year to heal from gluten damage and even the slightest crumb will set him back months in the healing process. The general rule is one month of healing per one month of gluten damage. So if your child is 8 years old, he would need 8 months of 100% gluten free to heal completely from the gluten damage. My now 4yr old healed very quickly and stopped all of his autistic tendencies (ALL OF THEM... And he had many!) in that time. He is completely normal today. Not a single sign of autism or Asperger's or ADHD even though all three of his older sisters have several of these issues.

Link to comment
Share on other sites

Oh my. How much does a test like this cost from Great Plains? And how do I do it? Do I just take it in to my ped. or a lab to do the blood draw? My husband is also super-skinny and has been since middle school...also quite chubby as a baby and fairly average as a young child. I might have the test done on him as well. Misty, you can PM me if you want...I so appreciate any info. you have.

Link to comment
Share on other sites

My understanding is that grains would not have been a human food until after men started farming. Man's original food was fruits and veggies, then later meat (from a biblical perspective). Being gluten free is really not that bad. If gluten was the only thing we had to avoid I'd be so happy LOL. Still good healthy carbs out there without gluten, and lots of baking options. Another thought, an insane craving for a certain food can be a sign of an intolerance/allergy. Also wheat is addictive, makes the brain light up (dopamine receptors or whatever it is)

 

YES!! VERY VERY TRUE.. What happens is.. The gluten (and casein) peptides leak through a permeable gut lining (permeable due to gluten damage), make their way to the brain, bind to opiate receptors in the brain, and make the child addicted.. TRUE STORY.

 

My now 7yr old daughter was COMPLETELY ADDICTED to Ritz crackers and milk. It was ALL she would eat. She craved them soooooo badly. Back then, she was violent, hyperactive, stimming, aggressive, attacking people, tantrums, raging, throwing things at people, screaming, severe OCD, severe ADHD, etc. etc.. After going GFCF.... NONE OF THIS. She still has some very minor issues with ADHD and anxiety and some sensory issues with smell and taste.. But the rest is history!!:001_smile:

 

And also true about gluten being a food that man invented. And today it is "super-glutened".. It's not the same food that it was 200 years ago. And we've all heard of those "failure to thrive" child deaths from long ago.. Gluten was likely their poison. You are especially susceptible to celiac disease or gluten intolerance if your ancestors are of european descent.. Especially Irish.. I think some Native American blood lines are also sensitive to gluten (I have Irish, German, and several Native American blood lines in my family).

 

Please read the article by Dr. Mark Hyman entitled Gluten: What You Don't Know Might Kill You http://drhyman.com/gluten-what-you-dont-know-might-kill-you-11/

Link to comment
Share on other sites

It IS a huge pain, not going to lie to you there, BUT if it helps, the difference can be tremendous.

 

Yes, it is a HUGE pain in the beginning.. I singlehandedly switched four kids over to GFCF diet. Dh is military and stationed elsewhere. It was HARD, especially for my daughter who was addicted. The kids turned their noses up to just about everything. We ate a lot of french fries and GF cookies in those first few weeks. :tongue_smilie:

 

But as the weeks and months went by, we found more and more things that we liked. I baked my butt off. Today, it's our new normal and we could not imagine ever eating gluten again. My girls would not eat gluten if you paid them now. They hate the way it makes them feel. When I accidentally eat gluten, I break out with dermatitis on my hands, I get headaches, muscle pain in my shoulders and neck, joint pain in my hands, fatigue, lightheadedness, brain fog, and even swollen gums! No lie.. Gluten causes widespread inflammation in my body.. even my gums!

Link to comment
Share on other sites

Oh, I also asked the dr. to do a gluten intolerance blood test

 

This test will likely be negative. If it is a celiac test, it definitely will be. Celiac testing is EXTREMELY unreliable, even for people with full-blown celiac disease. The only way to diagnose a gluten intolerance through your doctor is to do a biopsy of the small intestine.

 

If you want a reliable blood test, you have to go through a lab that is experienced with IgG testing. Your son is likely having an IgG response to gluten. Your doctor can't help you there. Mainstream doctors and allergists just aren't caught up yet. Many have heard of these tests, but aren't experienced enough with them to use them in their own practices or even recommend them. Maybe someday.

Link to comment
Share on other sites

Oh my. How much does a test like this cost from Great Plains? And how do I do it? Do I just take it in to my ped. or a lab to do the blood draw? My husband is also super-skinny and has been since middle school...also quite chubby as a baby and fairly average as a young child. I might have the test done on him as well. Misty, you can PM me if you want...I so appreciate any info. you have.

 

The test is pricey, but our insurance paid 100%. We have military insurance (Tricare). Check the Great Plains website to see if they take your insurance.

 

You need a doctor to sign the test requisition form (hopefully your family doctor or pedi will do this) and put in a diagnosis code (on the form) that your insurance will pay on. Our doctor put the Asperger's diagnosis code and our insurance paid with no trouble.

 

You then send this form back to Great Plains. They will then send the test kit to you. You take the test kit (and your child) to a local lab at any hospital and ask them to draw the blood. This costs about $6, but our insurance paid this too. They will draw the blood, separate the serum, and then Fed-ex the blood serum back to Great Plains for you. Great Plains provides a pre-paid fed-ex envelope in with the kit. You are not allowed to take the blood serum and fed-ex it yourself. The lab has to do it. Our lab did it without question. She acted like they did this sort of thing all the time. We received our test results in the mail about a week later. Everything was right on for my girls. The foods that came up high on the tests turned out to be exactly the foods that were causing problems (as I later learned after eliminating them).

 

Great Plains will also give you a free phone consult with their doctor to help you interpret the test results and formulate a plan of action.

 

Alletess is a little cheaper, but they do not file with insurance. They are just as reputable as Great Plains though. The total cost through Alletess would be something like $140. Great Plains costs $200-something, but again, our insurance paid 100% on it for all three girls using the Asperger's diagnosis code on two of them and the OCD/Tourette's diagnosis code on one of them. (BTW, the daughter with Tourette's is completely tic free today!):001_smile:

 

ETA: Correction.. If I remember right.. You order the test kit first and the test requisition form comes WITH the test kit. You don't have to send the test requisition form back to get the test kit. Sorry for the confusion.

Edited by Misty
Just correcting myself.. :-)
Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...