Need Advice From Parents

[akflboyd]

Just had Fiona's check up today and the doctor agreed with me that she exhibits some OCD tendencies and ordered a full psych evaluation. I am going to bullet point the last 3 weeks to make it short. Please give me any and all advice you may have. Fiona was doing soooooo well for one entire week and now I can't pull her back out again. She is mean to my husband (her father!) again and only I can do things for her like putting her to bed, getting her out of the car. I am at my witts end and I don't enjoy being around her! How sad is that!?!?

The diet worked so well in the beginning!

- Fiona on quasi Gluten-free Casein-free diet starting Oct 2. No milk but had yogurt & butter

- 3 days later she vomitted liquids all morning and was different child for an entire week (was this Candida leaving her body!?!?)

- Developed voracious appetite. Only eating healthy whole foods. Protien, fruits & veggies.

- She told me she "likes to cuddle now"!!!!!!!!!

- Began being somewhat affectionate.......HUGE HUGE HUGE

- Started getting canker sores

- My husband & I left for long weekend 1 week into Fiona's diet.

- She ate chicken nuggets! while we were gone and was given 1/2 cocktail cranberry juice 1/2 water. I ONLY had been giving her water.

- She started back to her old quirky ways again while we were gone. I talked to her on the phone while out of town & she wanted to know if my hair was up or down. On SEVERAL occasions she has thrown an absolute fit if my hair is up (OCD!)

- I realized I was giving her a lot of dairy, just not letting her drink milk.

- She has been on a probiotic and chewable colostrum (no longer once I remembered it was MILK! I am an idiot) for about 2.5 weeks now.

- Started her on grapefruit seed extract (nutribiotic/antifungal) 2 days ago

- 2 days ago started STRICT Gluten-free Casein-free diet.

- Appetite is still huge, in fact, I can't keep up with it.

- She is eating Soy Gluten-free Casein-free yogurt like it is going out of style. Tons of fresh fruit, hummus etc.

[gfgypsyqueen]

Strict avoidance of all forms of dairy makes a big difference in my kid too. She is gluten-free/CF since August. I don't know much about OCD, but the eval might be worth it. Just to rule things out? Any chance additives and chemicals are causing problems for her? As in, try 100% pure organic no chemical no additive foods that are gluten-free/CF.

You will probably be dealing with recovering from the nuggets and cranberry juice for a few more weeks.

Wish I had more ideas for you.

[Ridgewalker]

We're doing a gluten-free diet for my 4-year old because of some GI issues, and primarily for Bipolar tendencies. He's been strictly gluten-free for a week and a half, and we're already seeing noticeable improvements in his mood and temperament. But for the first week, he had horrible poop problems, diarrhea and pooping in his pants 12 or more times a day, plus vomitting a few times. So you're not alone in that initial reaction. He's not been having those problems for several days now.

I think you're on the right track with taking her STRICTLY Gluten-free Casein-free. I'd stay right on top of that, no matter what the circumstances are- school, daycare, babysitter, whatever. Seeing some improvement before is a good sign. Seeing a setback from the chicken nuggets (and other possible CC issues while you were away) is a bummer but is another sign that the food is giving her trouble!

When is the psych eval. appt? If it's a ways off, you may have time to see if/how much she improves on the strict diet.

[Guest andie]

Hi

My son has been gluten free for 6 months. His appetite too is unstoppable. I thought he was just feeling better. However, I decided to make the household mostly gluten free and we are all experiencing increased nutritional needs. My husband (who is also celiac) complains that he is 'starving to death'. My son constantly wants potatoes!

After a couple of months on the diet my son and husband seemed to go into a 'holding' pattern and in fact my son started having stomach upset again. I assumed I had glutened him, but strict control of that revealed nothing. I read that they may need to go lactose free and nightshade free for awhile until the bowel healed, so we did that and everything seemed to resolve.

A psych evaluation is a very serious thing and I would want more than one opinion. This could mean taking meds for the rest of their lives and and it would be a diagnosis that would affect other aspects of their lives.

Something emotionally traumatic will sometimes present as OCD. Has your child always been like this or is it something new or acquired?

Let us know how it goes.

Good luck!

Andie

[Fiddle-Faddle]

psych evals make me very nervous--they almost always want to slap a diagnosis on your child, and prescribe meds.

I have heard that if you have a diagnosis that "requires" meds, and you choose not to follow it, they can threaten to take your child away. HOWEVER--it is possible that those are just rumors.

Still, I would be very careful.

Since you see such progress with the diet, why not give it more time before the eval? Might you be able to reschedule the eval?

Since I have not been through this, hopefully someone who has can give clearer advice than I can.

[confused]

my ss is having an psych evaluation this weekend. We are seeing an psychatrist that is open about parents not wanting to give pills until its the last thing we can do. I have never heard of them taking your kids away if you dont give them the meds, but to be honest that wouldnt surprise me in some cases.

We are doing the evaluation cause we are not sure what is causing some of his behavioral prblems, not sure if its cause he he is till eating gluten, or cause he is an teenager, or if he is depressed with anger problems. There is bi-polar on him moms side and we want to find out what is going on.

This was our choice tho not the doctors, even tho we had an dr a few months ago think he might need meds.

[taweavmo3]

Just my advice, but I would cut out all dairy, as well as the soy yogurt. My little girl has been on the diet for two years, but soy still gives her tummy issues very similar to gluten. My husband bought silk soy milk a couple of weeks ago, and I could have sworn the child had been glutened. I'm gluten free as well, and just drinking a glass of soy milk kills my stomach.

I would definately continue with the probiotics, and if you are worried about yeast issues, you could also add some coconut oil into her diet. I would also limit the amount of fruit.....I know it's good for them, but too much will make my kids act crazy. I've really reduced foods high in phenol content, we do alot of pears now. They'll eat cut up pears, and I also buy the baby food pear puree in small plastic containers. Those don't really look like babyfood, and fit nicely in a lunchbox.

I would also give her body some more time to get the gluten out.....we see major mood swings and aggression for 2-3 weeks after a glutening.

Good luck with everything!!!! I would be nervous about the phych eval too, especially if they want to medicate. I would wait it out a bit, keep investigating her food intake/behavior changes. There is such a HUGE gut-brain connection, I would be willing to bet something in her diet is causing this behavior. I know my daughter could definately be labeled with some sort of psych disorder after a bad glutening!

[Michi8]

How old is your daughter? Are you being evaluated by a psychiatrist or psychologist? I can pretty much guarantee you that a psychiatrist will want to medicate for OCD.

We've just had OCD confirmed for our 5 yo daughter. We've essentially "known" it was OCD for the last 2.5 years, but now it's official. The psychiatrist is offering meds as the only option (because of our daughter's age), so we've chosen to stick with seeing the psychologist who is supporting us in managing the OCD in other ways. We're finding that a reward chart/system is a good motivator for our daughter, and we make small concessions here and there to help her make it through rituals. I will be trying dietary changes too.

I would give the diet a good try for a while yet, but make sure you are completely eliminating the suspected foods. Good luck!

Michelle

[gfpaperdoll]

I would not get the psych eval... I would also not give her ANY soy, certainly not soy yogurt, no one needs soy or dairy. Introduce kale & sweet potatoes..

add a sublingual B12 - very important..

& I applaud you for doing this for your child. She will get better. I think all OCD comes from problems in the gut, remember Jenny on the Oprah show, who said the gut controls the brain!!! Which most of us gluten intolerant people already knew!!

you could also test your child thru Enterolab.com to see if she has the gluten intolerant genes - which is almost a given. My family are double DQ1 - we are all a little different. My dil who has at least one DQ1 (grandson & granddaughter have 2 each) has dyslexia & takes meds for depression.

[Aligray]

My son is 9. He has had severe irritabilaty/anger/defiance/anxiety issues since he was 3 yrs old. I have taken 5 month parenting classes and even ordered the Total Transformation program by James Lehman. Both have helped but we still have some residual issues still hanging around.

I have always suspected that diet was involved. I had never heard of Celiac diseas until I was diagnosed. In the last couple of weeks i have been strongly considering trying a gluten-free diet for my son. I think it could only help him. And ur child too. I am going to order the Enterolab tests and test him. I'm in the process of deciding if i should go gluten-free for him now or wait for the test results.

All this to say...I highly encourage you to try the diet. I think it could only help our children. I know when i get glutened the anxiety and irritablity are over the top for me.

Good luck!

-Ali

[GFBetsy]

How old is your daughter? Are you being evaluated by a psychiatrist or psychologist? I can pretty much guarantee you that a psychiatrist will want to medicate for OCD.

We've just had OCD confirmed for our 5 yo daughter. We've essentially "known" it was OCD for the last 2.5 years, but now it's official. The psychiatrist is offering meds as the only option (because of our daughter's age), so we've chosen to stick with seeing the psychologist who is supporting us in managing the OCD in other ways. We're finding that a reward chart/system is a good motivator for our daughter, and we make small concessions here and there to help her make it through rituals. I will be trying dietary changes too.

I would give the diet a good try for a while yet, but make sure you are completely eliminating the suspected foods. Good luck!

Michelle

I can't believe that anyone would say that medication is the only option for a young child. OCD meds are almost always SSRIs like prozac and paxil, and almost all of the recent research says that giving these meds to children (under 18) dangerously increases the risk of suicide.

Now, I haven't heard of many 5 year olds who have committed suicide, but I would have to be absolutely POSITIVE that they were necessary before I would risk giving a young child of mine those medications. Especially as there are so many behavioral modification prodedures for helping OCD (and those are actually considered to be more permanantly helpful than the meds).

One of the best books about OCD that I've found is "Tormented Thoughts and Secret Rituals" - written by a Dr. who has OCD himself. (Just in case you want more information.)

And considering how celiac elevates anxiety for so many people, and that OCD is an anxiety disorder, I am certain that gluten makes obsessive compulsive symptoms worse for those who already have the tendency.

[mommida]

I have heard of a five year old attempting suicide. It is a very hard decision for the psych evauation.

Keep a written food journal for your child. Including all ingredients, times, and mood / behaviour and portion amount.

I have heard soy is a problem for many people, not just Celiacs. The truth is any ingredient can be the root cause, if there is an intolerance or allergy.

L.

[Michi8]

I can't believe that anyone would say that medication is the only option for a young child. OCD meds are almost always SSRIs like prozac and paxil, and almost all of the recent research says that giving these meds to children (under 18) dangerously increases the risk of suicide.

Now, I haven't heard of many 5 year olds who have committed suicide, but I would have to be absolutely POSITIVE that they were necessary before I would risk giving a young child of mine those medications. Especially as there are so many behavioral modification prodedures for helping OCD (and those are actually considered to be more permanantly helpful than the meds).

One of the best books about OCD that I've found is "Tormented Thoughts and Secret Rituals" - written by a Dr. who has OCD himself. (Just in case you want more information.)

And considering how celiac elevates anxiety for so many people, and that OCD is an anxiety disorder, I am certain that gluten makes obsessive compulsive symptoms worse for those who already have the tendency.

Given her age, the therapy available to us is either for preschool age (dd would be too old for it once she got to the top of the wait list) or much older. Early onset OCD is apparently unusual, especially for girls...I think that lack of understanding is part of it. She is still young for understanding what is going on in her head that leads to her rituals. Also, psychiatrists do treat with meds, so meds will often be their first or only suggestion. We're working with a psychologist for support. Luckily our dd doesn't have symptoms at school, and we doing okay dealing with it at home. To go on meds is a long process of trial and error that can lead to significant (although possibly temporary) side effects. I'm not willing to play around with my dd's temperament and personality.

Finally, I suspect this is also tied into EDS for us, I have read some research that ties anxiety disorders to the same gene that is (partly) responsible for some variations of EDS.

Michelle