Don't want to medicate, but feeling at the end of my rope - Page 2

[melissa17s]

Op,  we had a hard time deciding to give my ds medication when he was dx with epilepsy.  Although I know this is a different neurological disorder, we went went through much of the same fears about side effects.  When the neuro introduced the drugs, he handed us a number of sheet of side effects and asked us which we felt comfortable living with.  It took 3 different meds to find that worked for ds, and his current one has minimal to no side effects.  We also do regular blood tests for a couple of reasons- to monitor his health and to make sure it is still theraputic.   Some considerations we thought about were how is his condition effecting him with/ without the med?  What are the consequences of not treating is condition?  We also had a hard time with first two meds to the point that the bad outweighed the good, and that meant they were not for him.

Having sent ds to both a neurologist and a psychologist, I can tell you that they look at very different things when evaluating a patient- you would think since study the brain that there would be more overlap... but in our situation the 2 were never on the same page.  If your doctor thinks you need to see a neurologist, then they may want further testing like, mri or eeg, which could identify medical concerns.  A psychologist might focus more on therapies to help with behavior and stratagies for coping with situations.  For us, resolving medical issues with ds lead to resolving social/behavior stuff.  Ask your insurance what their criteria is for a neuro referral and share that with the dr..  Sometimes, it is simply that the Dr. did not use the right codes for the insurance... or so our neurologist has told me multiple times.   

I really hope your family and ds get the help you need to feel better whether it is medication or change of lifestyle.  

[APToddlerMama]

OP-- here is a link to a thread I started. http://www.mothering.com/community/t/1358506/food-intolerances-and-behavior-issues-help. My son sounds a lot like yours and no doubt, two months ago would have easily been given an ODD diagnosis. Lots and lots of suggestions were offered to me. Maybe some of them might resonate with you.

Trust your mama instinct. I had a very strong feeling food was triggering my sons issues and have seen a lot of improvement in his mood and behavior addressing that even though he'd been gfcf for years. That said, I've used medication myself for anxiety and it was life changing and very positive for me, so I'm not opposed to meds either. I would have considered them for my son if I couldn't have gotten some relief for him and for me from his behavior and mood, but I had such a strong sense it was related to diet that I pursued that first. Good luck. You sound like a thoughtful mama.

[livinglife]

I just want to say one more thing about costs and how expensive it is to care for a child on the spectrum....I feel very strongly, so strongly sometimes about these issues, partly because they are an economic one.  Children whose parents can afford it get the best possible care.  Parents who can't really afford it, cut out as much of their other expenses to get their child what they think that they need.  Some times it is preyed upon...parents fears that their child won't develop without x treatment.  I have spent more unnecessary money, money I can't get back, trying many many different things, and we are by no means wealthy.  We essentially have no retirement fund, a low rainy day fund....just money spent on health and our old house!  It is an enormous cost that we were burdened with and now have to try to deal with in this tight recession.

My light, and what I hold onto, is that I am charged to help my child reach their highest and greatest pontential.  I am so grateful that I found our answers but the sad thing is that the solutions that ultimately worked for my child actually cost me very little out of my pocket.  My homeopath sees my child once every month initially and then every few months and charges 75 dollars for a session.  Her work is worth millions to me.  The costs were the out of pocket speech therapist, the OT who wouldn't work with insurance, the social skills group he "HAD" to have that made me petition my insurance for reembursement, and the company refusing to reemburse for costs despite appealing to the highest level, since his IEP already provided social skills work.  And the irony was that he didn't require any of these services any more when homeopathy and diet began to work.  I am happy to put the autism industry out of business.  And wish I had found Isopathy (most homeopaths don't use it and don't believe it necessary) 10 years ago when I first began using homeopathy.  I always wondered why the cure only went so far with us and stopped working.  I asked my homeopath if we could detox heavy metals from vaccines with isopathy and she said it wasn't necessary.  I wished I knew better.  I wish I had all the money I spent back and all the energy and time etc etc!

Where am I going with this...only to say I understand the burden of it all.  It is a huge responsibility both emotionally and the toll it takes on your relationship with your husband and finances.  I have been there.  Think about your costs and if you do consider investigating a more direct homeopathic approach it has always been the most inexpensive thing in my "tool box". 

[SpottedFoxx]

OP - One thing I just thought of - many kids who fall on the spectrum have sensory issues (that's where the OT would come in handy).  While I get that it's expensive and that if it's not covered by insurance, it's a no go.  However, the nice thing about sensory issues is that you can sometimes manage them yourself.  Get yourself a copy of "The Out Of Sync Child".  Once you are done that get "Out of Sync Child Has Fun" (if you are not a big reader - the the fun book as it gives a high level overview of sensory processing issues in the beginning). The Fun book has tons of sensory activities you can do with your son to help regulate his neurological system so that his behaviors will calm down a bit.  Keep in mind, if he does have SPD, then the behaviors (called stimming) won't go completely away but your goal is to make them less extreme.  The activities are fun like spraying shaving cream on a table and drawing, making a "insert your son's name here" sandwich - he's the meat and you lay him on the sofa or a bed and put pillows on his body (not face) and squish him.  Things like that.  I also have a wonderful sensory diet I'd be happy to share with you.  It's 3 pages of sensory activities to help calm kids with SPD.  Just PM me your email address and I'll send it over (and I'll send it over to anyone who would like it).

[KCMichigan]

Originally Posted by SpottedFoxx 

OP - One thing I just thought of - many kids who fall on the spectrum have sensory issues (that's where the OT would come in handy).  While I get that it's expensive and that if it's not covered by insurance, it's a no go.  However, the nice thing about sensory issues is that you can sometimes manage them yourself.  Get yourself a copy of "The Out Of Sync Child".  Once you are done that get "Out of Sync Child Has Fun" (if you are not a big reader - the the fun book as it gives a high level overview of sensory processing issues in the beginning). The Fun book has tons of sensory activities you can do with your son to help regulate his neurological system so that his behaviors will calm down a bit.  Keep in mind, if he does have SPD, then the behaviors (called stimming) won't go completely away but your goal is to make them less extreme. 

GREAT BOOK!

I second it and have a copy both at home and at work. A sensory diet really helped my DD, as well as therapudic brushing (which is dependent on the child- she was tactilely defensive). We also use a weighted blanket and an indoor swing (IKEA) at home-- both have been easy to implement and inexpensive. For my DD and her particular needs- these were good solutions that I would not have thought of. Did they make some of the issues we were dealing with go away- no, but they did get better and her ability to self-regulate also improved. 

As for OT. Check with Easter Seals, nearby Childrens Hospitals, etc. Often they will do a sliding scale- esp. if insurance does not cover services. Most insurances dont cover under SPD, but will under the ASD spectrum. Have you contacted your local ASD parent group? Often they have a wealth of information on OTs, home programs, services, meds, school programs, social skill classes, etc that they can share with you. It can make a big difference too to just *talk* to someone that is facing issues that are similar to your own.

Even local universities often have ASD programs (if they have a teaching program) and/or afterschool groups for kiddos on the spectrum. Our area had a fabulous free play group that was run by OT doing a Masters program on ASD. It was not publicized, but when I called the local childrens rehabilitation clinic- they referred me. Call around and explain that you do not get school services for OT but are on a limited budget. See what they can dig up for you- you may be surprised! Some areas have more to offer than others, but I hope you are in an area that has more than you think. =]

Per the sensory stuff: also our area has 'Special Needs' nights at places like Jump N Play, bowling, movies , etc. This is a nice place to go and be able to do 'sensory' stuff (we have not done the movies, but the Jump N Play is fabulous for SPD!!) with other kiddos and families.

Sometimes it can be so isolating to face some of the challenges SN families do-- to be with other families can be therapudic all on its own!

I , too, agree with Melissa. If the Dr is suggesting medical testing. I would pursue what you are comfortable with. We have found that some testing has lead us to treat symptoms differently than we would have given different information. Both my DDs have had MRIs and EEGs (as well as other testing). They were informative and non-invasive while providing a wealth of information. She is also correct that any Dr you see will look at the same information and possibly give you a completely different treatment plan! You want to make sure you have all the information.

Yes, often the schools will not offer it if there is not an educational impact. Does your DS have an IEP or 504? I would look into that if you have a Dx. That will get you access to some supports in school and/or allow for some modifications that may relieve some stress that is spilling over at home. Even a social skills group through the school social worker could help.

Although diet did not make a difference in my DD. Have you looked at outside allergies? Like pollen? I know everyone in our family is suffering from seasonal allergies this time of year. Both DD take allergy meds to help control their reactions. Without the allergy meds, they dont sleep and *everything* escalates a lot faster. One DD simply can not handle the 'itchy ear/eye' that comes with allergies. Her quality of life is so much happier when she is not completely distracted by physical sensations. FWIW : we tried homeopathic remedies for seasonal allergies and again did not have positive results., though I do know they work for some people/families.

[livinglife]

Just so you totally understand where I'm coming from about homeopathy, it didn't initially work for us either.  We have used homeopathy for 10 years in our family, with 3 different homeopaths, all offering us powerful remedies at the time that were useful to a point and then would "stop" working.  Apparently this is a common issue with homeopathy today in much the same way that phamaceuticals either have the potential not to work for some people, only work partially or work and then stop working. 

I have witnessed the evolution of homeopathy as the spectrum epidemic exploded and digging and getting to the bottom of why homeopathy wasn't working for us I found a homeopath who was asking the same question and was using remedies in new and novel way.  A visionary I believe.  It is my orientation and how I look at life that keeps me digging and looking for answers through more alternative means because it is most resonant with my world view and view on healthy minds and bodies. 

I am a child and family therapist, social worker, in my professional background and I "dig" for answers as part of my nature ;)

Just want you to know where I'm coming from.  Maybe I had a high degree of tolerance for the family reactions that would ensue from my searching around.  I have a very respectful husband who admires my tenacity because I can be like a bulldog digging for a good bone.  I too worried about my child suffering but I also was staying at home with him, and able to implement very clear and specific behavioral plans that worked, as well as having developed good relationship at his school to ensure his care.  I also tried to take the long view, that if I could help him sort this out, and how he would need to care for his body now, I could teach him how to be healthy throughout his whole life.  That's the way that I talk about it with him, that we know how to help him be healthy, that the food he eats, the supplements he takes, the remedies too, help him be strong and clear headed and he will likely need to do this his whole life. 

I do believe that this is an incredibly toxic world we live in, unprecedented really, in that our children are now the 2nd or 3rd generation raised with chemicals on and in their food, their clothes, their furnishings, polluted air, have vaccine altered immune functioning and eating a diet very different from their ancestors high in processed grains and sugar and low on vegetables and well raised meats and raw dairy. 

My orientation sees not "different brains" or differently wired brains but bodies and minds struggling in this world we live in and my questions are about how can I help my child or anyone's child live more comfortably in this world the way that it is (since I can't always control these larger issues at play). 
 

[Lookingup]

I am really moved at all the help and support you all are providing.  Thank you so much for caring and trying to help us through this.

We are on vacation with family at the moment, and it's so stressful that at the moment I've given in and let Thomas play computer games, because it's a break I need.

I am wading through all the info in your posts... feeling a bit overwhelmed.  APToddlerMama, your personal thread is enlightening but also a lot to absorb.  I need some time to read through it without interruption, but if there was one thing that really made the difference, what was it?

For the poster who asked about classification, the school would not give him a 504 yet,saying he didn't need it til next year when testing begins. (He has a graphic organizer and other 504 accomodations without the official plan.)  Thomas does NOT want to stay in school.  I think we'll probably be home schooling by next year, but I pray that we're at a calmer place by then.

Yes, costs are scary.  I called my husband crying this morning about it, and my fear of not going in the correct direction.  livinglife, I want to be a bulldog... I am learning.  I will not give up.  I just want a little glimmer of hope... not this child who screams at me and hates everyone and is so dreadfully unhappy.  Sometimes I see the sweet kid within and I think, "but how do I keep him??  I don't want just a glimpse, I want him back for good!"

I will read this all again tonight when the kids are asleep.  I will be taking notes.  I will be learning from you all.

Suz

[Mary Aspinwall]

very best of luck - happy to talk to you about homeopathy if that is of help. Mary Aspinwall.

[KCMichigan]

Originally Posted by bygones75 

For the poster who asked about classification, the school would not give him a 504 yet,saying he didn't need it til next year when testing begins. (He has a graphic organizer and other 504 accomodations without the official plan.)  

WHAT?!?!? That is illegal. Any child with a medical condition (PDD_NOS counts, as would anxiety and ODD) can get a 504. Starting as early as preschool, but absolutely in K and beyond.

A 504 gives you and your son more legal legroom when it comes to modifications and accommodations. You have a right to an official 504 plan. 

504 does not have to be anything to do with testing!!! (one of myDDs has a 504 and it will not change for testing in 3rd grade since her medical needs have no impact on testing).

Look at www.wrightslaw.com for info on IEPs (which you said your DS did not qualify for) and 504 (which your DS should qualify for). A 504 could get you access to a social skills class, social worker, and even OT if needed. A 504 cover medical needs that do not impact academic learning (no goals for a  504). It is a legal document that allows children with disabilities get equal access to education. It allows for modifications such as extra time, personal care needs, access to organizational tools, alternative assessment environment, personal aide, etc.

Our school tried to give my DD a medical management plan. Which is fine for asthma or an allergy--- but no way does that have the legal heft that a 504 does. A 504 covers both my child to make sure she gets the care she needs and also makes it very clear on who is responsible for what and exactly  what the schools responsibilites are. 

[livinglife]

When I've felt my most afraid is when my best answers come.  Usually, they were from digging, like you are now, on the internet.  Sometimes, I think, only half in jest, that I have a little angel on my shoulder, saying....go to that website, look up that topic.  By the way, if your Dan doctor is really expensive and out of pocket it is o.k. to fire him.  Do a cost benefit analysis and see if he is worth it.  For what it's worth to you, I didn't use a Dan doctor.  I did my own research and implemented a plan based on what made sense for us.  Yes the supplements cost money, the homeopathic consults cost money, and so does the specialized diet, but the Dan doctors in my area charge an obscene amount.  Does yours?  I suspect that you have hunches about who your child is, the glimmer of the real boy, when you see him and why.  I noticed over the years certain things about my child that fed my intuition about the right direction to take.  Search your heart and I bet the answers are there.  Sometimes it is helpful to have expert guidance.  Use it when necessary but it is o.k. to decide when that is, not, necessarily for every step in this process.

Good luck...
 

[livinglife]

You know, your child should also qualify for an IEP on his spectrum diagnosis alone so that he receive speech therapy from the school to support his social and pragmatic language development.  Over time, it is also important for him to receive reading comprehension support through specialized small group learning which in my district is done through a learning center model of specialized instruction, but if your area does not have an learning center model, an IEP can be drawn up to support his language learning needs in the classroom, as the very definition of spectrum disorders is that expressive and receptive language skills are concrete and functional making it difficult to participate in social language or draw inferences and understanding through language other then in the most concrete sense.  

While this is another thing to tackle, you may also want to put your energies here, and fast, because I wonder what in the heck is going on in his classroom.  What does his school day look like without any IEP or 504 accomodations.  If they are telling you that they can't make accomodations until he is tested, then, stay on them until the testing is complete and read up on proper accomodations for children who have your son's issues.  He will feel so much better when he is supported at school.  He must be a ball of stress poor guy.

My son was in the 1st grade when his issues came to head for us too although Kindergarten wasn't a picnic either.  However, when learning expectations in 1st grade jumped, and there was less time for play and recess, he became destabilized.   He was tested then and placed on an IEP.

I hope that your school system can support his needs but work with them and see what they come up with.  And, come back here to ask questions about the IEP process and your rights.  I know this process all too well and i'm sure that many others do too.  You will become the bulldog.  Even though you're scared I'm sure you have it in you. 

[livinglife]

O.K...I just reread your post about having 504 accommodations without the 504 in place.  Forget about the 504.  He needs a much more comprehensive IEP to cover social, emotional, language, pragmatic and learning accommodation support.  Your son must be so confused so much of the day.  My guy, with PDD-NOS needed constant support to understand the social dimensions of classroom life.  His school needs to step it up!  Put in writing (in my school, it is to our guidance counselor) a request for a school evaluation to determine whether he qualifies for an IEP.  He should qualify for the spectrum diagnosis alone.  Please don't struggle with this at home without having the school do their job.  You could be struggling so much at home partially because he is feeling so very very anxious at school.

[Lookingup]

Thank you for the info on 504 plans.  No wonder the school psychologist wouldn't meet my eye when she said he didn't need one yet.

As for evaluations (to livinglife), he was eval'd last year and didn't qualify for special ed services.  Thomas' IQ is high and in testing (one on one with an evaluator) he did mostly fine.  His anxiety and social difficulties aren't going to come into play there... except for the executive functioning portion, which of course he did dreadfully on.  Doesn't matter.  They have bigger fish to fry.  Thomas' therapist wants him re-tested by the school, but I'm hoping we can get the neuropsych done elsewhere, because then finances don't come into play.  Our school district is very, very in debt.

I totally understand what you mean about the little angel guiding you in research for your son.  I am taking deep breaths and letting my instincts guide me.  Already have a lot of wonderful ideas due to you fine ladies.  Thank you, thank you.

[livinglife]

He should qualify for an IEP regardless of his high IQ purely on the basis of his spectrum diagnosis in order to receive social and pragmatic language support .  I don't know your son, or what state you live in....but a spectrum diagnosis usually by definition will bring social language and pragmatic language problems, that lead to anxiety in and of themselves, due to an awareness that they are not doing well socially or due to punishments they receive when they were unaware of the expected behavior, or poor reactions they get from other children but  are unable to access the language and understanding required to change the outcome.  I would be anxious too if I were on the spectrum and not getting any support!

If social and pragmatic problems are not dealt with it will lead to confusion and subsequent behavior problems that if are not seen in school will spill over at home.  It is very telling that he hates it and doesn't want to go back.  He seems to be taking all his frustration out on the family.

When my son was diagnosed with PDD and also showed features of anxiety his neuropsychologist who evaluated him said that his anxiety would likely clear when his school began to teach him pragmatic language skills, no longer discipline him for problems arising from his confusion, and give him clear and precise language consistent across all areas to explain his school expectations and use some incentives to encourage behavior that they want to see.  Even if the evaluator at school does not see these issues as clearly as you do at home, they should be taking behavioral and emotion inventories to determine the level and extent of the issues at play in other areas, both school AND home.  A problem at home can become a problem at school very easily for a child on the spectrum, as a high functioning child can no longer meet the higher demands placed on them for work and social interactions. 

Instead of getting the school to "retest" I would get an outside evaluator who will tell the school the "official diagnosis" and what they recommend your child's services to be to provide an equal access to their education.  In the interim, look for an advocate to help you wade through what you are entitled to ask for for your child based on the testing already received.  You CAN and SHOULD receive an IEP with diagnosis specific recommendations for social and pragmatic language support.  Often, parent advocates volunteer through your area Special Education Parent Collaborative to help parents through the process. 

[Lookingup]

Our doctor agreed with you -- he needs an outside evaluator.  My husband is not thrilled about the $1000 cost, but we'll find a way.  Our doc also strongly felt Thomas has a processing delay... something the school doesn't agree with, but the doc said they rarely pick it up in their evals.  He referred us to a neuropsychologist down county and I will call tomorrow.
 

Thank you again for all your kind help.  Doc has him on new herbal supplementation, we will do heavy metal testing next month, and proceed with the neuropsych testing, and then take it from there.  He is not opposed to medicating, but after speaking with Thomas and myself for quite a while today, feels that there are some more avenues to explore.  I feel like we have a direction now and that's what I wanted.

Thanks to everyone again -- I've saved everyone's comments and suggestions.  Mothering is so wonderful for expanding my horizons and my thought processes!

Suz

[QueenOfTheMeadow]

I'm so glad to hear that you have a doctor that's backing your up!  Let us know how it goes!

[livinglife]

Me too.  I remember how scared and overwhelmed I used to feel when my son was seven.  It really does get easier and it does sort itself out with time and your good efforts!  I truly wish you all the best.
 

[Jaimep]

Gosh, I have nothing helpful to add, just wanted to say that I am right there with you all.

My son sounds just like Thomas. Your comment about how you glimpse the sweet boy sometimes and just want to get him back to that. UGH! It makes my heart hurt because I am right there with you. That is my son too. He can be so sweet to his little brother and the next moment raging at me about something. :(

We tried ADHD meds, just one round so far and it was a disaster. I know it takes a couple tries in most cases to get the right med, so I am researching them more before I decide which one we can try next. I feel certain we will try again I just want to be more informed. I am talking to lots of other parents in this boat and asking for lots of information.

We are also dairy free ( he is actually allergic we found out through blood test), mostly wheat free (got to get better at this), watch sugar, diet and all that jazz. Doing therapy, yada yada... The list goes on, right? LOL!

Anyway, I got on here today because I was looking for more specific reading material and threads that might be helpful to us.

Just today he begged for the park but once we got there he rode off on his bike where I couldn't see him and had to hunt him down (impulse control issue) and then threw a massive fit when i asked him to put on his shoes, finally we left. :( Then threw a fit all the way home.  We home school and he also threw a couple tantrums about school. Oh and I was stupid enough to take him in the grocery store, so yeah. Its 4pm and I am done already. Where is the wine?
 

[Lookingup]

Hi Jaime,

Your post made me laugh -- thank you for the support.  :)  Sorry for your bad day though... man oh man, I know those (and the need for a glass of wine at the end of the day.  Or the desire for it in the middle of the day if it's really bad. ;)

I am the queen of reading.  Some books haven't helped at all; some have helped a bit.  The best is The Explosive Child by Ross Greene.  I'm reading Parenting Without Power Struggles now, and while some of it would make Thomas roll his eyes, I like how it's put his behavior in perspective for me.  I'm more hopeful.

The herbal med Thomas is on (he's actually on several, but the predominant one) is especially for ADHD, and can be taken in conjunction with prescription meds.  It's called Nurture and Clarity.  I DO think it helps... not enough, but we're starting it in conjunction with other things, so we'll see.  It's from Israel and puts a dent in the wallet, but maybe something for you to try.  My friend's son has ADHD and she has noticed HUGE differences in his violent behavior since she put him on it.  Like this whole thread says though... something different works for every kid.

Thomas recently had his hearing checked by an audiologist, and has significant conductive loss in both ears.  This was a huge shock for us, and could definitely be contributing to his issues.  (The audiologist said he was an excellent lip reader, and probably had been doing so for quite some time.)  The ENT said he has a lot of fluid.  We're waiting the requisite 6 weeks, but then he will be a likely candidate for tubes.  I know diet can contribute to the fluid issue, but I still can't figure out what could be causing it.  At this point, I would let them do the tubes.  He needs to hear.  All other testing has been put on hold since then.

He sees his ped tomorrow for a follow up and we're going to discuss some of the other suggestions in this thread.

HUGS to you and luck and good wishes.  And maybe a nice bottle of wine too...