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New to SNP, looking for help and support, please :)

post #1 of 12
Thread Starter 

Hi mamas and dads =) My name is Kristi and I am new to this section of MDC. My daughter was diagnosed with a "mood disorder" just yesterday, although I had already knew this was probably coming, it was still hard to digest. I admit I cried, got angry, cried some more, and now I am feeling overwhelmed, sad, stressed but ready to dive in to find her and my husband and I the help we need. Mood disorder wise, they are talking about possible bi polar, definitely an anxiety issue, possible ODD, definite sensory issues and I don't know what else. I really like our psychologist, she doesn't want to rush to a label or to meds. She said the big thing right now is helping me and my husband learn how to work with her, how to find our best parenting strategies specially for her and management. And play therapy for her to help her learn to "self regulate." She did say that usually, with children like her, it usually leads to medication in the future. but were not going there, yet. First and foremost I want to try everything natural I can possibly try or rule out first. I am interested in getting food allergy testing, maybe some kind of evaluation to make sure its not something medical, vitamin and mineral difficiencies or heavy metal toxicities. If anyone has any good info or resources for me please feel free to post. I am open to ANYTHING at this point.

 

If interested here is a summary of her "symptoms"

*argumentative over EVERYTHING
*calculated decisions to annoy you or make you mad. Ex: after a struggle to try and convince her to get un dressed to change her clothes, she takes her shoes off that are full of sand, looks at me and turns them upside down on my carpet, with a smirk.
*outburts/tantrums many many times a day that result it breaking things or hurting me.
*easily upset, frustrated with herself and others(which causes an outburst)
*hard for her to relate to other kids as she gets older. She ONLY wants to play what she wants, which is animals.
*screaming when shes upset, doesn't get her way, to make you mad etc.
*threatening to scream if you don't do what she wants "then I'm going to scream really loud!"
*if say I put her on a time out, usually for an aggressive behavior like hitting or kicking (i have to physically restrain her for the start or she will hit/kick/bite/headbutt/pinch etc me.) if she can't get to hurting me sometimes she results to biting herself pretty hard.
*so negative. Everything is SUCH a big deal. upsets her so easily. its actually very sad to watch.its like she lacks the ability to let some things just roll of her back
*sometimes I think she says no to things just or the power struggle. because if I just get tired and give up. suddenly shell do it. like she won, now shell do it on her terms.
*she started with only being aggressive to me, and now its branching out to other people she is more comfortable with like my parents and my husband.
*she is NOT aggressive with other kids at all. Just more shy.
*good at school, but shy and anxious about things. Like every morning she stressed about not wanting to eat lunch there? she has some friends sometimes, but not a lot. I think because she has such a limited amount of interests (animals) its hard for other kids to want to play with her sometimes. (side note: she goes to a great Montessori school, and actually loves her teachers very much. and is starting to be very interested in learning some things, where before she wanted nothing to do with learning the alphabet, numbers, writing etc. She still can't write her name, recognize all the letters, say the alphabet correctly, just learned to count to 20 since school started etc. shes behind compared to the other kids her age that have been in montessori for a while, but definitely getting there. I'm so proud of her.
*shy at school and social situations
*so angry about everything. I am constantly saying to my husband, "I don't understand what she is so angry about all the time? like what can be so wrong in her life?"
*sensory issues with sound, smell, clothes, over stimulation
*hard for her to get to sleep/settle down

*afraid of a lot of things lately. dark/noises/being alone
*very anxious about separation from me (unless its with one of her people she loves.) I can't even leave one room to go to the other without her calling "mama!!!" out in a panic. she has to be right near me.
*starting reckless behavior, like running ahead of me running out to the street etc. when she never was like that when she was younger

 

Oh and did I mention I am 6 months pregnant due the first week of June? I am so nervous about whats to come for her and our family with this new change. Please tell me that it gets better? I am just so so sad, for all of us. and exhausted. oh so exhausted. and I feel selfish feeling so sad because I know many people have it much harder.

 

If you made it through all of this, you are simply amazing ;) Thank you so much in advance. I knew MDC would be the right place to turn for help!

 

ETA: I never said her age. she will be 5 in 3 weeks. this has been going on since she was very young and gets worse every year. She was always a high needs baby and I practiced mostly AP stuff. Co sleeping/Breastfeeding until 18 months, no hitting, no yelling, etc...

post #2 of 12

The autism community does a lot biomedical and dietary interventions.  Some of the issues your daughter has are similar to those issues shared by some individuals with autism.  These alternative interventions have made a tremendous difference in the lives of my 3 children.

 

www.autism.com is  good resource.  They have difference conferences through out the year and many of the presentations are viewable.

post #3 of 12
Thread Starter 

Thank you for that link!

 

Could I contact a DAN Dr. even if she probably isn't "Autistic?" I really like the approach they take, from what I have heard. I have pondered possible Aspergers, but she is totally fine with language, talking at a normal time, walking/crawling etc early. She doesn't have any stimming behaviors etc... I feel like people are going to look at me as if I am insane if I try to talk to someone about Aspergers when she appears so "normal" to strangers. A lot of these behaviors only come out around people she is comfortable with.

post #4 of 12

Yes, taking her to a DAN doctor would be fine - the exact diagnosis doesn't matter because they are coming from a different perspective, checking for food allergies, metal toxicity, etc. I waited a long time to go to a DAN doctor because I wasn't sure if dd had autism, wish I had done it earlier.  Hope this helps!

post #5 of 12
Thread Starter 

Thank you very much! I found two highly recommended that are somewhat close by. =) 

post #6 of 12

hug2.gif I hope you get a diagnosis soon. I'm not an expert, but one of the things that struck me about your post was how many behaviors she has that seem to be related to issues in self-regulation:

 

*outburts/tantrums many many times a day that result it breaking things or hurting me.
*easily upset, frustrated with herself and others(which causes an outburst)

*screaming when shes upset, doesn't get her way, to make you mad etc.
*threatening to scream if you don't do what she wants "then I'm going to scream really loud!"
*if say I put her on a time out, usually for an aggressive behavior like hitting or kicking (i have to physically restrain her for the start or she will hit/kick/bite/headbutt/pinch etc me.) if she can't get to hurting me sometimes she results to biting herself pretty hard.

*good at school, but shy and anxious about things

*shy at school and social situations

*sensory issues with sound, smell, clothes, over stimulation
*hard for her to get to sleep/settle down
*afraid of a lot of things lately. dark/noises/being alone
*very anxious about separation from me (unless its with one of her people she loves.) I can't even leave one room to go to the other without her calling "mama!!!" out in a panic. she has to be right near me.

 

Now, clearly the need to argue, aggression, negativity, self-injury, and social quirks need to be explained too, but I'm wondering if some sort of therapy/therapies designed to improve self-regulation would help. Our son was in occupational therapy for sensory issues and motor planning issues from age 5-7. The work they did there for his sensory issues and motor planning issues paid off in unexpected ways (at least unexpected for me) in terms of reducing his anxiety and need to control his environment. It also helped with his social skills because once the sensory stuff became less of an issue, he started to be able to pay attention to what other kids around him were doing. Luckily for ds, several other boys at his daycare shared his intense fascination with fire trucks and emergency vehicles, so he never had to play anything else!

 

Even if your daughter isn't on the autism spectrum, if you can get an evaluation by a good occupational therapist, I'd highly recommend it.

post #7 of 12

I agree with Rainbringer re seeing a DAN doc.  One of the biggest misconceptions is that the DAN docs are super expensive and simply in it for the money.  WHile there may be some doctors or practioners who do not share the same drive and passion as the majority in the field, the autism.com website provides a list of questions you can ask the practioner to determine if he or she is a good fit for your family values and perceptions.  THe great majority of the expense is usually for the medical tests done at various labs that identify any health issues, such as mineral deficiencies, inflammation, allergies or intolerances, or any underlying health conditions.  Then there is the time and financial commitment in the lifestyle changes to improve your child's health.

 

My daughter has various sensory and behavioral outbursts that went away because we corrected her dysbiosis and removed dairy from her diet.  She also had a various physical health issues that disappeared such as high pain tolerance, severe eczema, gastrointestinal problems, respiratory issues.  Instead of seeing her regular pediatrician 10 times a year because of her chronic health issues, we now see him once or even twice a year at the wellness checkup.

 

Lynn 56 made a good suggestion relating to the need of an OT.  the DAN methodology is generally meant to compliment the therapy that help our kids function in daily life.  As a parent, our goal is to get our children to be as health as possible so they are receptive to the other therapies or interventions we obtain to help them become functional and independent.  Going the DAN route was my plan that paid off for my children.

 

Good Luck. 

post #8 of 12
Thread Starter 

LynnS- yes that is exactly what her therapist said. She wants to work on self regulation with her. I am also waiting on getting an appointment with an OT for her. I just worry that because she is so shy and reserved around new people, she won't show her true colors. That happened several times with an old therapist, I finally had to bring in video. I swear she thought I was lying or something for the first few sessions. 

 

I am really glad to hear about the positive DAN experiences. The cost scared me, I feel like I don't want to make the wrong decision, spend a bunch of money we don't have only for it to be a scam or something. I am going to look at that website for questions to ask to make sure its a good fit for us. 

 

Thank you all for your responses!!

post #9 of 12
"First and foremost I want to try everything natural I can possibly try or rule out first. I am interested in getting food allergy testing, maybe some kind of evaluation to make sure its not something medical, vitamin and mineral difficiencies or heavy metal toxicities. If anyone has any good info or resources for me please feel free to post. I am open to ANYTHING at this point."


I have found that my DS's food sensitivities really trigger his lack of emotional control. We are avoiding about 13 different foods that, by trial and error with food logging, have shown to cause problems with him.

Also maintaining his blood sugar on an even keel, rather than way up and way down, helps too. This requires feeding him every 2-3 hours, and keeping watch over him getting

We are also working on starting frequent (low) dose chelation with DS, per the Andrew Cutler plan (look for his book online if you are interested in going this route). No doctor is necessarily needed to do it, but thoroughly reading his books on the subject and joining the yahoo support groups can help you get through it. We did a hair test (via directlabs.com) on everyone in the family, including DS. Turns out DS's got toxicity issues, as well as the rest of us. The Cutler books explain how to interpret hair tests. I have done five chelation rounds on myself, and plan to do more rounds. Follow-up hair testing shows I've already dumped a lot of toxic garbage out of myself. I personally wouldn't do chelation any way other than the frequent low-dose method, as it seems from my reading that this is the only safe and effective way to do it. Unfortunately, I believe most DAN doctors aren't familiar with the frequent low-dose protocol. (Other people may have different opinions about chelation, and I'm not putting this out for debate, just as a "this is what we're doing and why" kind of thing.)
post #10 of 12

First, hug2.gif

 

Second, different things work better for different kids, and it is a bit of trial and error at the beginning to figure out what are the real keys for a specific child. Food really doesn't make a difference for my DD (who is on the spectrum) but figuring out her sensory issues and ensuring she gets the right sensory input each day with a limit on the wrong sensory input is the very most important thing for her. For us, the book "The Out of Sync Child" was The Helpful Book. Working with an occupational therapist is very helpful for kids with these issues.

 

I don't think that sensory stuff is ever a meds issue. It's more a matter of figuring out what sorts of sensory input is therapeutic and then providing it. For example, being in water is really great for my DD, so she's spent huge chunks of swimming (and she's a heck of swimmer!).

 

My DD also has intense anxiety issues. There are a variety of therapeutic approaches for anxiety, such as cognitive behavioral therapy. I also think that getting the sensory stuff in order has helped my DD's anxiety tremendously.  None the less, anxiety is an area where meds are an option. We haven't done anxiety meds yet, but at this point, I've totally made my peace with them. There's no reason for a child to suffer when we have the knowledge we do about how to lessen their suffering.

 

As far as lunch being stressful, can you try and pinpoint what is stressful about lunch. Are the containers difficult to open? Is the open ended social situation stressful? Is the food she takes different from the other kids, and therefore an issue? Narrow down the stressful bits as much as possible and then troubleshoot. Lunch is an issue for a lot of special needs kids for a host of different reasons.

 

Also -- on the sleep thing -- not getting enough sleep makes every thing else worse.  Have you tried melatonin? Some moms swear by it. For us, there was a chicken/egg thing with anxiety and sleep. When my DD doesn't get enough sleep, her anxiety is worse. When her anxiety is worse, she can't sleep.

 

 

 

post #11 of 12
Thread Starter 

Linda-

Thanks for the info! Finding out what exactly about lunch is stressful is a good idea. I tried talking to her about it yesterday but she wouldn't talk. She put her hand to my face and said shes not a talking dog. lol she gets uncomfortable talking about feelings. Yes we do melatonin, if we didn't it would take her hours to get to sleep. And she also recently had surgery to remove her tonsils and adnoids. Her sleep is great right now, she goes to sleep in my room about 20 min after her melatonin (usually 7-8 pm) and doesn't wake up until 7am ish. I think the surgery helped A LOT. she used to wake up many many times a night.

 

Kimpm-

Thank you for the info on the chelation. I will look into that book. As soon as we have some spare money we are going to start with food testing and possibly testing for yeast issues/gut problems. I would like to do a hair analysis on her also. I wish they all weren't so expensive!

post #12 of 12
Quote:
Originally Posted by PuppyLove22 View Post

Linda-

Thanks for the info! Finding out what exactly about lunch is stressful is a good idea. I tried talking to her about it yesterday but she wouldn't talk.

 

Is there any way you could observe her lunch period without it totally throwing her off her routine? You seeing what is happening might help you figure it based on the other things you've noticed about her in other context.

 

I'm glad to hear that tonsils out helped sleeping! 

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