New and with ?

[mjsmard]

Hello everyone,

 

I ended up in this forum by exident, wile googling supplements to help to treat my son's Crohn's

disease.

 

My son is 10 y.o. and was diagnosed with ADD in 2nd grade. He started experiencing tics in second

or third grade (he moves his head from side to side). They lasted for about 9 mos or so and stopped.

Three or four month later I asked my son about them and he said "Thanks for reminding me"

and his tics reappeared for couple of month again and then stopped

 

In second grade we tried some medicine for a month for ADD that didn't help and sins then I decided

not to treat my son with medications because he is a good student with a good memory and didn't have big

problems in school because of his ADD.

 

Then he developed these tics.

 

Then, not long ago, he was Dx with Crohn's disease. He didn't have tics for awhile, maybe for 10 mos or so,

but today his head was spinning again and he said that he started having tics couple of days ago.

 

After reading some of your posts regarding eliminating artificial colorings from the foods, gluten-free diet

and stuff like that I got to the dead end in my son's situation. Thing is - he is not eating at all for fourteen

weeks already - he receives all calories from special formula for IBDers (like ones for babies) and there

is no artificial stuff in there just broken down proteins, vitamins and minerals. So what is going on now?

What do you think is triggering my son's tics?

 

I apologize for my terrible English but I hope you'll be able to understand what I'm trying to say and ask in my post.

 

And thank you in advance for all your replies.

 

P.S. What is PANDAs and OCD?

[mjsmard]

Sorry, I forgot to mention that my son has been taking Pentasa (1000 mg/day), mild steroid

Entocort (started at 9 mg/day now tapering down to 3 mg/day) and Nexium for four month

for his Crohn's. Also he's been taking SeaCure for helping his gut to heal (it's a white fish protein),

started Rhizinate (2 tablets/day, started two days ago) and UNDA homeopathic drops (also started

two days ago, as Naturopath prescribed).

 

I'm taking my son to the Naturopath again this Friday and will ask for his help but will appreciate

all your thoughts and advise.

[Chemar]

Hello mjsmard and welcome to Latitudes

 

I have a son who also has been diagnosed with Crohn's Disease and we have had phenomenal success with supplement healing....so much so that his last blood test results amazed the gastroenterologist, who had somewhat sceptically agreed to us using the non prescription med route as long as he could keep monitoring things.

 

The major help (apart from our prayers ) is from Boswellin/Curcumin and Slippery Elm Bark and Marshmallow Root capsules( all by NOW herbs) which control the inflammation, and then Cramp Bark capsules (from Mountain Rose herbs) which control the painful spasms

 

Flaxseed Oil is also helpful for the inflammation and Vitamin B12 and L Glutamine are essential to the healing process. My son had also developed anaemia associated with the Crohn's and so he is on slow release Gentle Iron by SolGar

 

At the outset, we did allow him to have a full month on an antibiotic, Flagyl, to control the bacterial overgrowth, and have balanced that by using Candida Clear(by NOW) and a potent probiotic regimin, along with MonoLaurin (by Ecological Formulas) which naturally keeps bacteria,viruses and other microbes controlled)

L-Carnosine formulated for healing the intestinal mucosa is also very beneficial as it has the added benefit of reducing tics (note that is carnoSine

We also do have Prevacid on hand in case of acid buildup, but he has been symptom free for some time now and doesnt need it (Tagamet and Zanax do the same as prevacid, but Prevacid has additional benefits)

BOOST nutritional drink was also very helpful when my son was struggling with food and needed a soothing liquid food

 

Of course, my son also has other helpful nutritional supplements aiding all this which he takes for his Tourettes

 

My son has acupuncture as part of his regular health treatment for Tourettes, and our therapist has added FSM (frequency specific microcurrent) treatment to the protocol, which is excellent for all forms of IBD like crohn's ( http://www.frequencyspecific.com )

 

 

Do be aware of the fact that all cortisol substances can increase tics, and so your child may well be ticcing more because of the Entocort. We rejected use of Prednisone for mainly for this reason (although the other side effects of cortisol medications are enough to make me stay away from them!)

Mesalamine (as found in the Pentasa) was also something we refused as it can aggravate tics, never mind all the liver/kidney etc toxicity!!

 

As you can tell, I am VERY cautious about these prescription meds..........as soon as my son was confirmed Crohn's with a colonoscopy/endoscopy, I began researching the standard treatments with medications and was quite horrified by the loooooooooooooong lists of potential side effects, which is why I immediately formulated an alternative plan to present to the GI specialist.

 

We have no family history of Crohn's and it is strongly believed that the mechanisms that led to the Crohn's condition were triggered by the horrid side effects that my son had when on the prescription meds for one year for his Tourette's and OCD!! That was 6 years ago, but his system has never fully recovered from what those drugs did to him! We are just so thankful for the healing properties available to us via the natural substances! as without them I know my son would be in seriously bad health.

 

Now we can add Crohn's to the list of TS, ADD and OCD that have been controlled by natural treatments for my son!

 

OCD stands for Obsessive Compulsive Disorder and PANDAS is Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.

 

I hope that what i have shared about my son will give you some info to take to your naturopath

 

Please dont hesitate to contact me if you need more information

[mjsmard]

Chemar, thank you so much for the long and very informative reply! I just printed it out and will

make a summary of the information I received so far from you and other parent from the forum

for Crohn's.

 

Thank you SO much for investing your time and sharing very valuable information with desperate

parents like me.

 

I have other questions for you. Would you mind if I'll e-mail you privately later on sins Crohn's is my

biggest concern at this point?

 

God bless you and your kid!

[Guest]

Hi mjsmard,

 

I don't know anything about Crohn's disease, but I did want to mention something regarding the formula your son takes in. Is the formula hyperallergenic? I have a niece that still receives formula as she has a feeding tube. She ended up being allergic to the first couple formula's they tried, and they now use Neocate formula for her. Anyways I just wanted to mention that it's always possible that even though he doesn't eat solids, he may be reacting to the formula.

 

Carolyn

[Chemar]

mjsmard

 

yes, please feel free to email me anytime. Be sure to include your email address in the first one sent through the forum so that I can contact you directly therafter

Glad to be able to help.........I feel this is what is known as "pay forward" as we all help each other

[mjsmard]

Carolyn,

 

Thanks for your concern! Before I ended up on this forum I never thought that something from food may cause tics. I was impressed that detoxification make a huge difference in overall health.

 

Here are the ingredients of the formula that my son is on. I have no clue what possibly could be the trigger of my son's tics.

Ingredients

Corn syrup, acid casein1, sugar (sucrose), milk fat, medium chain triglycerides (coconut oil), corn oil, soy lecithin, potassium citrate, calcium phosphate, sodium citrate, calcium carbonate, magnesium chloride, potassium hydroxide, potassium chloride, sodium ascorbate, choline bitartrate, ferrous sulfate, zinc sulphate, magnesium oxide, DL-alpha-tocopheryl acetate, niacinamide, calcium pantothenate, manganese sulfate, pyridoxine hydrochloride, thiamine hydrochloride, copper sulfate, retinyl palmitate, riboflavin, cholecalciferol, folic acid, sodium molybdate, potassium iodine, chromium chloride, phylloquinone, biotin, sodium selenate, cyanocobalamin.

 

1Contains Transforming Growth Factor-ß2 (TGF-ß2) naturally found in cow's milk

 

Today my son had his regular acupuncture session for his Crohn's plus extra needles for tics and some

stretches. Does anybody know how long it usually take to see some improvements?