Conflicted and Looking for Some "Mom Advice" (Long Post)

You're doing a great job. This is a tough situation, and no easy fixes. Good for you for sticking to GF/CF diet. It's so hard, but if you're seeing such good results, it's so worth the effort. My ADHD husband is most reactive to artificial colors, flavors and preservatives, so that is where we focus our dietary restrictions.

One warning: a pediatric psychiatrist is the only medical professional you should trust to medicate your son if you need to go that route. That withdrawal reaction he had to the meds before could indicate that he is at risk for the increased tendency toward suicide found in some kids and teens who take meds for ADHD.

Others have covered the legal aspect, so I'll stick to offering some more suggestions for additional therapies you might consider.

Social skills: Center for Social Success (Dr. Susan Istre) does group play therapy with great results.

QEEG-guided neurotherapy or biofeedback. My ADHD son (age 6) did Interactive Metronome Therapy last year, with some positive results. This year he did 3 months of neurotherapy with more positive results. My daughter (whose primary issues are dyslexia and anxiety) did biofeedback and cranio-sacral massage therapy which together improved her sleep and social skills dramatically. The QEEG, also called a brain map, will show you exactly where your son's learning issues are, and will indicate what kind of treatment will be most effective. Neurotherapy and biofeedback are similar techniques, but target different aspects of the nervous system, so they're used to treat different issues. Even if you decide to medicate, the QEEG will help the doctor determine which medication is likely to help most based on which part of the brain it affects. Insurance should cover the QEEG and some of the neurotherapy. These are non-invasive, painless therapies.

School: A school psychologist once said to me, "you can either change the child or change the environment." We have found the best results involve both strategies. My 8 year old has been at Shelton school for 3 years. My 6 year old will start at Shelton in the fall. The right school environment can make such a huge difference. A building full of teachers and support staff who understand exactly how hard it is to learn to control an ADHD body and brain can be so much more empathetic to these kids, and they are all highly trained so they can explain the same thing in so many different ways until the child gets it. Small classes mean that kids get the individual attention they need to be successful. There are more schools exclusively serving LD kids in the Dallas area than almost anywhere else in the world. I don't know why that is, but I'm so thankful to have those options.

My kids and I all see the same chiropractor, and we have all felt better since we started getting adjusted. Most insurance plans cover it; it's very gentle; it seems to help. That makes it worth checking out in my book.

We use:
www.online-biofeedback.com Rusty Lozano
www.neurotherapydallas.com Dr. Jonathan Walker
www.kenpiercy.com cranio-sacral massage
www.drmelissashelton.com chiropractor

You are the expert on your child. Don't let the doctors or teachers intimidate you. There is no magic bullet, and the perfect solution for someone else is probably not going to be the perfect solution for you and your son, but other people's experiences can help you figure out what 10 things are going to work together to help your son be successful.

Hang in there.

S.
SAHM of 3

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You have done a fantastic job in helping your son and figuring out that gluten and dairy were big issues for him. Your son sounds just like my youngest son and the GF/CF diet has done wonders. But, as you've found it needs to be 99.999% GF/CF for it to work. Even the smallest amount of gluten can damage the brain, which is why your son has those behaviors. Your ex needs to understand that. Did you ever have your son tested? Enterolab has the most accurate test: www.enterolab.com Perhaps if your ex can see in black and white that your son is having reactions to gluten, then he might help him stick to the diet. IF not, then I would find a lawyer as IMHO what your husband is doing is abusive. You will need a doctor that will justify that your son needs to be on the diet, but don't give up - this is your son's future (both health and education) that is at risk here.

Also, what nutritional supplements do you use for your son? Many of these kid need supplemental B vitamins (very important for the brain), as well as Essential Fatty acids like fish oil, etc, which is essential for the brain. Also, DMAE is extremely helpful for ADHD. There's lots of good info here:
http://www.blockcenter.com/ADD_ADHD/Nutrition.html

Based on my experiences what is "off" about your son is likely damage to his immune system due to environmental toxins, including those in vaccinations. Your son is likely like my sons and myself and we're the percentage of the population that are damaged by the vaccinations (and other toxins) - you can look at all the published info on vaccinations and they know that at least 3% of the population as reported have negative immune reactions to vaccinations. This has to do with genes.

One thing you might consider is to have your son tested for heavy metal toxicity. This lab is considered the best - they're testing for the peptides of the heavy metals: www.labbio.net You want the "Porphyrins (toxicity biological marker)" test. I was recently tested and have some of the highest levels of mercury my doctor has ever seen and she treats kids like yours and mine, as well as the extreme of autism - your son sounds like he was on the Asperger's spectrum of autism - my oldest was before the GF/CF diet. And, I also had very, very similar issues into I started the diet. Indeed, when I was trying to figure out what was going on with my younger son, I read the DSM-IV to figure out what was wrong with him and realized that whatever he had, I had too. The treatment for heavy metals depends upon how much your child is impacted. I am doing a very mild protocol as I am highly reactive to alot of things - likely because my poor immune system was damaged by gluten for 42 years. This is why I am so emphatic that these kids need to be helped now - the long term impact is tremendous and I am very, very lucky to have found doctors to help me.

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Oh my goodness, I can't imagine the pickle you are in. I don't have any kids with special needs so I can't offer too much advice. But I wanted to tell you, PLEASE don't judge yourself too harshly and you have NOT been a failure to your son. He is blessed to have a mommy who is so willing to look at alternative options to make him feel better. I hope this doesn't sound condescending, but I am so proud of you for not just getting frustrated and tuning it all out. Being a working mom you are doubly busy, so I am sure it breaks your heart to see your son like this. Just keep trying and I hope you get some good advice here. Many prayers to you!

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T.,

What a great mom you are! To have identified the gluten/casein problem in our ill informed society is positively herculean!

My daughter is 6. She is also on a gluten/casein free diet. She is old enough to know what is ok for her to eat and what isn't. If you emphasize to your son that he is healthier and happier when he follows the diet, and pack him with some food to go to his dad's, do you think he might be able to stand up to dad and say "I can't eat that?" just a thought. Good luck.

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No one's judging. :) Don't beat yourself up so much. :)
It seems to me that you're doing a fabulous job because you are trying to help your son. Most men don't want to admit there is a problem, so they tend to avoid it...making things worse.

Do you have a custody agreement? Get your lawyer involved. There are things that your son needs that his father is not providing him with.

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hang in there you are doing a great job under difficult circumstances. I must agree that you must "lawyer up" food is like a drug for your child, if you Ex doesn't want to follow the dietary restrictions it is the same harm as him giving him bad drugs, which is abusive and child endangerment. Your Son isn't capable of defending him at this time, nor should he have to. but you must follow the diet, this is a life long issue and it must be followed for him to stay healthy. I can understand that you want him to have contact with his father but if the father can't follow the rules then it is a danger to your child, get and outside person (the courts) involved, even taking the father to discuss it with the DR maybe the Dr can encourage him to follow the program, but definitely stick with the diet and make sure the father does or he should have contact with the child.... if the father were giving the child "pot" you would interfere without hesitation, this is the same thing

best of luck

Sorry to hear about your son's problem. God bless you and your son! Congrats on choosing to stay home with your kids!! You can do something about your ex following the diet... If the Doctor said it is your son's medical need, you can enforce it through the judicial system. Your son's well being should be his concern. You would need a lawyer that will talk to your ex first and see if he can get him to see how his "disbelief" is hurting your son, and if things don't work out, then to go to court. My husband, John Haugen, is a great negotiator/counselor. Call his office at ###-###-#### and set up an appointment for a consult, The Haugen Law PC. The website is www.haugenlawfirm.com.

I don't have any experience with ADHD, but I do know an small bit of the time and trouble allergies take to alleviate. I haven't read any other comments you might have gotten yet, but I thought I'd put in two cents:).

Do not beat yourself up or criticize yourself too harshly, please! You are trying to so what is best for your son and that is all you can do. You have gone on what the doctor's have told you, but also followed your instincts when something didn't seem right. You said yourself that your son is doing better when he is on the new diet.

Since you stay at home now do you think you could try homeschooling him? There are many groups where he can get the socialization he needs:). You could monitor his behavior more effectively and make sure he can work on his studies at his own pace.

I know there are all sorts of different opinions about homeschooling and I don't mean to open a can of worms. It might be worth looking into your options concerning his education, however. In effect, the first three days of the week wouldn't ruin his grades if he were in a more loving environment. If you decide to look into it please contact me and I will give you some ideas of books to read up on if you'd like:). I have a 4 year old and a two year old (both girls) so I am just beginning their education, but I have learned about their education options since my oldest was en utero:).

God bless and I will keep you in my prayers,
Loni

Before re-medicating your child I would talk to an attorney about the visitaion issues... if your ex wont stick to the diet then he is puting yours sons health at risk and mabey armed with a letter from the crt threatening to strip him of visitaion the ex will straighen up and stick to the diet

First of all I wanted to hug you and say you are not alone. There is help out there for your son. I have a boy of 7 and he has some challenges too so I feel your pain. We have tried sensory integration therapy and cranio sacral therapy with some success. For focus we have also done Interactive Metronome with more success. We are now beginning neurotherapy with Dr Walker...we have heard wonderful things from many families with challenging children and decided to try it. Many of these protocols are attractive bc they are not medication dependent. There are social skills classes your son could go to. Insurance however will nto pay for a lot...unless you are lucky and have excellent insurance! My son is improved but continues to have behavior issues in the house not at school. You probably need to get a proper diagnosis after extensive testing. Find a developmental pediatrician and get a full scale eval. I was told by my pedi. that medication only works a little but it needs to be combined with behavior therapy for it to work the best. A great place that does Occupational therpay for sensory kids is Integrative Pediatric Therapy on Hillcrest and LBJ.

Good luck!

If as you say your son needs a special diet and your EX is not willing to follow it this could be considered neglect. If he was seriously allergic to these food and went into anaphylatic shock and ended up in the hosiptal while in your EX's care you would seek to immediately protect your child from your EX...would you not? Same thing if you found out your EX allowed your child to do illegal drugs or anything that would harm him. Your EX should want the best for your child and if you found a way to help your child that is supported be a doctor then your EX should want to follow that. I would seek legal council and find out what you need to do to ensure that your EX helps out in this matter. This is not controlling what happens at your EX house this is protecting your child. You are not stopping him from watching too much TV you are trying to help him physically and emotionally. Get legal advice now before it's too late.

It sounds like you have found an effective solution to his health problem. I think you need to get legal counsel about your husband not taking initiative to take care of your son's health. In the mean time, have you tried sending all the food he needs with him to his dad's house, so your son won't suffer due to your ex's neglect? You probably need to get doctor notes and notes from an observation etc...for the legal aspect.

I love you and I know that you are doing the best that you can.Its not your fault that you have a ex that cares only for himself.

I have to agree with the lawyer advice. Talk to your divorce attorney and ask what documentation is needed from your doctor to indicate that this diet is medically necessary (or whatever term is required) and that the father not following this diet is damaging to the health of your son.
Congratulations on not giving up and finding what works for your son!

Peace,
M.

Hi T., I generally don't have time to read these long posts, but yours caught my attention #1 child's behavior problems, #2 your mention of having been a single mom trying to deal with all of this, #3 food sensitivities,#4 dietary challenges that your ex won't follow in your sons best interest ... all of which I am also dealing with.

You've received a lot of great advice that I second when it comes to adhering to a GF/CF (+ other reactive food) diet, avoiding meds, trying alternative therapies, enforcing a medical order w/an attorney, etc.

A couple more things I'd like to suggest with behavior. My daughter age 5 has progressively had behavior problems and as a single mom it's been terribly trying for me. I had her in play therapy and that's when the therapist said she had some severe "attachment disorder" symptoms. Rather than go into it completely I suggest you go to www.Postinstitute.com and www.Attachment.org to read about it. The more I learned the more I realized this was accurate. It's most often associated with adopted children that fail to bond in their first 2 years of life. But it's also caused by divorce, separation from a parent, multiple daycare/care takers (single mom working full time, exhausted when she gets home), hospitalization at an early age, etc. I've since learn a ton about this and it's changed the way I respond to my daughter. One thing I learned is that "traditional parenting" doesn't work for these kids. It's all working and her behavior is changing. But it's not a quick fix. I'm also going to a weekendlong intensive camp in the near future to learn a WHOLE lot more (Post Institute).

I feel like I'm rambling. If you care to talk, e-mail me directly and I will send you my number or personal e-mail.

I would also like to suggest a wonderful doctor that practices alternative therapies that both my daughter and I are receiving. He deals not only with food sensitivities (desensitizing) but emotional/biomechanical healing. Here is a description:

. Standing at the forefront of the evolution in healthcare that looks beyond conventional medicine alone, Dr. Russell's primary care focuses on optimizing health, preventing illness, treating acute and chronic conditions using an integrative perspective that emphasizes all aspect of an individual's life. Dr. Russell addresses the mind, body and spirit working from the inside-out using a dynamic patient-based approach to identify and heal core clinical imbalances that lead to poor health. His specialties and treatment's include, but are not limited to, metabolic & hormone systems, Applied Kinesiology, Body Integration and Bio Energetic Synchronization Technique (B.E.S.T.).

Dr. Rodney Russell
325 Miron Drive #100
Southlake, TX 76092
###-###-####

Congratulations on your marriage (I hope to be living that dream here soon too!) And good for you to keep pressing forward looking for answers to help your son. He's still young and from what I'm told, it's much easier to affect change now at at an early age when imprinting is easier rather than later.

Blessings,

S.

Hi T.. Don't beat yourself up; there is so much conflicting information out there it is hard to know where to start in any given situation. I applaud you for persevering and wanting to find the absolute best solution for your son. This is not easy stuff!

I don't know how you feel about this, but have you considered petitioning for no visitation rights for your ex until he can agree to maintain the diet you have set out for your son? If it is that obvious that a GF/CF (altho I don't know what CF is :-)) diet is what he needs, then you might be able to convince a judge that your ex is essentially denying him proper care. If you don't want to go that route you may have to send food with him every time he goes to his dad's, and offer a reward if he sticks to his diet and doesn't get in trouble at school. Maybe if he insists on eating GF/CF food, your ex will go along with it. Start by having your ex accompany you to a Parent/Teacher conference at school and the next pedi appt; maybe if he hears firsthand about the behavioral problems he will be inclined to help you find a solution instead of ignoring your concerns.

I would turn to medication only as a last resort; I hear too many moms say they don't like how meds affect their child's disposition. I'm sorry I don't have a professional resource to offer you but I hope this helps. Hang in there!

Hi T.,
Call Dr. Block in Hurst, she deals with this exact problem in children. She has been around for many years and even written some books about this. You can google her online and find out more about her. But she is the answer to alot of prayers for children.

The Block Center
1750 Norwood
Hurst, Texas 76054
###-###-#### -- Metro ###-###-####

Take care,

T.

Hi T.,

No advice, unfortuntately, because I do not know what you can do to make your ex adhere to the diet you KNOW is helping your son. I just wanted to give you a word of encouragement. You sound like a very good mom to me and I'm glad things are working out for you now...thank God for second chances, right?

Hopefully some of the other mamas will have some good advice for you. Mine is just, "hang in there...you're on the right track!"

Good luck,

M.
"Our pediatrician misses us. So does the pharmacist."
Visit my Mamasource profile to find out why!

T., if at all possible you and your ex need to sit down and discuss what is best for your son. Is there some way to film your son at home and your ex do the same at his home, then compare the difference. Your ex probably hasn't seen your son at his best. It would be a good idea to find a dietitian that could talk to you both individually. Your ex doesn't want you telling him what to do, so you will have to find another way to convince him that changing his diet is what is best for your son. Call it male ego or what ever you want. It will be more work on the fathers part to change his sons diet. Is there a male figure in your exs life that he will listen too, perhaps his own dad. I seriously feel that your ex needs to be brought into the situation in some way, maybe he is the one that needs to take him to the doctor instead of you next time. Could you send food for the boy to eat when he is at his dads home? Surly your ex sees the extent of the problem. You said that your son was a new boy after changing his diet, does that mean that all issues disappeared or does he need,in addition, counseling from a behavioral coach or does he need to be on a med.? I'm with you on not wanting to do medicine and feel that a natural approach is the best. "Someone" needs to get the doctor to insist upon your exs presence at the next appointment. I'm sure you are a smart girl and can figure that out. What is important here is to do what needs to be done for the sake of your son. Check out out all avenues and don't give up. Hang in there.
J. W.

You definitely need to consult your lawyer and get a motion before the court to be sure your ex is ordered to comply with the medical professionals' findings to help your son. It is definitely in the child's best interest to do so. If your husband doesn't comply, he could be in comtempt of court or possibly have his visitation modified or terminated. You have to do what is best for your son's health.

Please don't beat yourself up. It sounds like you are aware there is an issue (you said you always knew something was "off" with your son), so you are doing the best you can by seeking advice from pedi after pedi and getting him tested for food allergies. It annoys me that your ex doesn't work to make sure he's on the GF/CF diet when he's with him. So, here are my suggestions. 1. If you truly see a difference when he's on the diet and you think things would improve if he stayed on the diet, could you talk to your ex and explain you think it's really important and take the time to make his food before his trips to his fathers so that he stays on the diet. Maybe present it to your ex as saying "I know you don't think it makes a difference, but I do. Would you be willing to only give him the food I send for 2 months and lets see if his school issues subside. If so, we know the diet works. If not, you can do what you want at your house and we'll continue to seek advice on what else we can do. My second thing would be to try medication - I'm not a fan of medicating children, but here are my thoughts...if he does better when medicated, then he will be more likely to keep and make friends. This will boost his self esteem and help in socially. Is he in any type of sport? Karate is a great thing for kids with ADHD because there is so much dicipline involved. If the medication doesn't seem to help, keep looking for help. You know better than ANY DOCTOR if something is not right and you are his advocate. My niece has ADHD and I know it has hurt her socially and self esteem b/c she feels like she's always in trouble. I also think they (the kids) don't WANT to act up and don't want to be in trouble, but they truly don't know what to do to make it better.

Hang in there, pray for guidance, and keep advocating for your son.

Don't beat yourself up, it sounds like you are doing a wonderful job with your son. If the diet is working, I would try and stick with that over medicating your son. If your ex is just to lazy to prepare food on your son's diet, maybe you can prepare the food and send it with him when he goes to his father's. If his father is still refusing to feed him stuff on his diet, I would consult a lawyer and see what your options are.

I have a son with the same problems..tried meds did the same just so sad. Found a wonderful place that is helping my son. You didn't say where you live but if you e-mail me back I can give you some numbers that will help.
____@____.com

Wow it sounds like you've really been through some difficulties!!! I know it is SO frustrating when you KNOW something is wrong, and just can't find the right doctor to really listen. It sounds like you've really worked hard to not let this go and to help your son.

I'm so sorry to hear that your ex doesn't 'get it' and realize how important these dietary changes are for him. Is there a way that you can LEGALLY enforce that the ex continues the diet? Such as, get a judge to rule that if the dad doesn't keep up with the diet that his visitation rights are suspended until he complies or something? You'd think that the dad would WANT to keep going with the GF/CF diet, after you explaining what a great change it has made in his behavior...but, since he doesn't sound too willing, the only thing I could think is to get a court ruling involved somehow...would the teachers be willing to submit written statements showing that they've seen the positive changes in your son's behavior as a direct result of this diet change? Maybe your first step could be to ask the teachers to send letters directly to your ex and, if that doesn't work, then go to a judge or something?

Hang in there!!

have you read any or jenny mccarthy's book a/b her son evan? some of your story just sounds a little like hers...except your son is older and has not been dx w/autism.
would dad accept food/snacks given to him so he doesn't have to do any "extra" for his son? heaven forbid! i know that would be extra work for you.
kjc