Advice Please

[bmom]

I have posted a few times before, but I will give you the quickest run down. My very sweet 8 1/2 year old son began doing a chin to neck tic on February 19. Within days this had progressed to very frequently with also open mouth during. Often this involved an arm up and pull at the neck of his shirt as well. I started him on magnesium only later reading about the differences and it was not very absorbable. -No improvement. I added flax No improvement and also rash when in the sun. At this point he also began throat clearing very frequently. We made an app. with UCLA tics and tourettes and went to Cal hoping to go to one of the best and get help.-no help- watch and see. During the trip I noticed he also began fist clenching and toe curling. All tics going on very frequently. Came home- met with neurologist, psycologist, physciatrist. no help- meds if needed. All this time I was working on diet which did not seem to make a difference.-Completely cleaned it up and eliminated dairy and wheat. Phone consult with Sheila. Met with alternative Dr.-accupunture, muscle test, homeopathic allergy med. No food allergies-dust and flowers. Hair analysis. Began kids calm. VEry bad for 4 days then slowly improving over the month until nothing but maybe a fist clench here and there. Decided to add B multi from Kirkman-no bad reaction. At this point he was doing well but hair analysis showed needed multi as well- added Kirkman hypoallergenic-seemed fine. After reading about benefits of EFA decided to try Pulmetters DHA which Sheila had recommended- started 5 days ago with 1 a day- seemed fine. Some stress going on in our lives in Feb. Thought maybe though-nothing major. Dad does have minor tics- hard blink occasionally and neck stretch. Looking back and he had fever and sore throat 2 weeks before all began and reading about PANDAS I asked for blood testing. This was 3 months into with hardly any tics, but wanted it anyway. Came back normal. Yesterday-high fever very sick trouble urinating. Took in today- strep and a bladder infection which Dr. said very uncommon for 8 yr. old. Prescribed Amoxixillon. sp? Could vitamins cause bladder infection- He has never had one before. Scared about the strep. Ordered blood test to check kidneys. Do I stop it all? Very nervous- Just want to do best for my little guy. Please help.

[faith]

bmom,

forgive me, I'm not really clear on what you are asking advice for. Are you concerned about the bladder infection being caused by supplements you are using? Or are you indicating that nothing is seeming to help with tics? Although I am getting impression that after starting the kids calm, he slowly improved after short period of bad? Could you please clarify his current status, and what you attribute that to? I mean, if he is currently doing well, perhaps all you have done concerning diet, etc. IS having an effect. What are you currently doing in regards to diet--still eliminating wheat/diary? You say no food allergies--what type of testing did you have?

 

Also why are you worried about strep--is he having a flair in tics? You did say testing was negative for PANDAS? And he is starting amoxy, right?

 

sorry for all the questions, the post is just a little confusing to me.

 

Thanks

Faith

[bmom]

Im sorry I felt like I had to write my whole story. Yes, could supplements cause a bladder infection? I just dont want to harm him. I am nervous about the strep because I still wonder if the episode was caused by PANDAS. I just kept thinking why so much so fast? and the test was 3 - 31/2 mo later. He had 6 tics going at his worst and I have never seen him tick before.Could this still be the cause or highly unlikely? He is prone to strep, but to my knowledge he had not had it in 3 years, until now, but maybe I missed it it Feb during illness which I thought was flu. He was and still is doing fine in tic department for last month-month 1/2. I can not pin point why as I went drastic with everything because it scared me so bad, but kids calm seemed to really help. I asked doctor to do a kidney blood test to make sure his kidneys were functioning properly, but wont get it back for awhile. Thank you to anyone with any opinion or reply.

[faith]

okay, good, you are doing the right thing by requesting a blood test for kidney function.

(BTW, did you ask doc what/why he thinks infections could be from?

 

As far as the strep goes, yea, I would always be concerned if you know it is there, because it is my personal intuition that it could cause a flair up. BUT, if you had the test done for titers, and it was not an issue, then I wouldn't harp on that unless something else specific happens in the future.

 

If he is doing better now, than that is great. I would not stop doing what you are doing. Supplements should not do any harm unless used in excess. I would go through whatever you are giving him and just look up each supplement and what the adverse effects of each could be, just to ease your mind. I don't think a bladder infection is too uncommon, (I recall a girl in my son's class recently had that).

 

As for the tics, when you say he had six things going on, and now he is much better, I am really inclined to believe that the dietary clean up and boosting of immune system with supplements is partially responsible. Do you keep a diary or journal documenting what you do and how things work out? I'd be very interested to know how long after starting down the path that things started to improve. Remember, "healing" takes time, sometimes more than just a week, although gradual improvement could start as early as a few days.

 

I wouldn't worry too much, I'm sure this infection will clear up pretty quickly. Keep up the good work-just look at where you are right now--not six tics going on, right?

 

Faith

[bmom]

ok thanks, I guess I am just a worrier on this issue which I am trying to work on as well. I am like Cum Passes- couldn't eat-lost 15 pounds in 3 months. I call it the stress diet. Also when Lenny writes about his reaction I feel like it could be coming from my head. I would just like to list supplements to see if anyone thinks its too much:

from Kirkman- Calcium 250 mg, hyperallergenic B complex, hypoallergenic childrens muiti, 1 1/2 teaspoon Kids Calm, Pulmetters DHA 1 daily-thought I might add more. I saw the big improvement with Kids calm and just thought maybe he might need more so I added others. Should I just do Kids Calm? What about DHA algae vs. Max Fish oil or nothing at all? thanks all.

[patty]

bmom,

 

I know it must be frightening & stressful to see your child having multiple tics at one time. As a parent, your instinct is to stop it ASAP. However, when everything is done at once, it can be overwhelming for both you and your child. Sometimes it is best to do things in phases, so you know what works & not to eliminate some of the unnecessary treatments or supplements.

 

You mentioned that you had your son allergy tested and the result came back negative, so it may be safe to not take the allergy route of treamtment plan. Since he is having strep, perhaps look into PANDA again. Once you are more clear as to what you are dealing with, it is easier to come up with the treatment plan.

 

I highly recommend Epsom salt bath. It really help calm the motor tics. In the meantime, i would also avoid all neurotoxins, such as MSG, perservatives, artifical flavors, food coloring.... These things are not good for anyone with or without tics. I would also start to eat mostly organic to reduce pesticides or any toxic matters entering into the body.

 

Patty

[Chemar]

bmom

sorry i cant post much because am busy working

 

just wanted to assure you that the supplements cannot cause a bladder infection, but something is obviously allowing bacterial growth there??

 

tics are likely up BECAUSE of strep and infection and the two infections may even be related

 

the supplements you mention sound good.

 

just remembers some people tic more on fishoil....not all....just some

 

hope all stabilizes again soon

 

[kim]

bmom,

 

If you search "alternative treatments and bladder infections," you will see where magnesium citrate (the form found in kids calm, I believe?) is sometimes recommended. Also zinc, fish oil, probiotics and other supplements that many here find helpful.

 

Speaking of zinc, was that level tested during any of your appointments?

 

Now the part I found really confusing. Many articles say that a bladder infection causes the urine to become alkaline. Citrate will also cause this, although, I have no idea how much you would have to have that effect.

 

http://www.earthyfamily.com/A-bladder.htm

 

Urine is ideally neutral to slightly acidic (pH 5.8–pH 7). Very acidic urine (below pH 5.5) encourages infections. An established infection gives rise to alkaline urine (pH 7.5 or higher), which causes stinging and burning. Test your urine with pH paper at any time except first thing in the morning. Cranberry juice lowers pH; vitamin C raises it. my comment..both of these are recommended in different articles

 

 

http://www.allnaturalcures.net/bladder.htm

 

Cranberry juice produces hippuric acid in the urine, which acidifies the urine, and inhibits bacterial growth. Other components within cranberry juice prevent the bacteria from adhering to the lining of the bladder. Cranberry juice may be taken in a concentrated supplement form.

 

If you are using a citrate form of magnesium, ask the Dr. ( an alternative dr...I wouldn't waste my time asking a conventional Dr, this question) if you may want to replace that with a different form, until the infection is gone, or you may want to buy the test strips to test urine PH. It appears to me, that any form of supplement containing citrate, could be helpful or not during a bladder infection

 

A few other articles that may contain something helpful

 

 

http://www.urologychannel.com/kidneystones/index.shtml

 

http://www.mayoclinic.com/health/drug-information/DR602271

 

http://en.allexperts.com/q/Family-Internal...infection-1.htm

 

I'm wondering what form of calcium you're using?

 

from Faith's post

 

Keep up the good work-just look at where you are right now

 

Agreed!!! AND, I think it's great that you are questioning everything. I believe often there can be a clue to the big picture in many things that happen with our kids.

[Chemar]

good stuff there Kim

 

i know citrate is used for cystitis too

 

yes, the ph levels are important in controlling bacterial growth and yes, cranberry juice is wonderful for all things bladder and kidney related (and a whole lot more) Knudson make a pure cranberry juice. A lot of what is on the market is"cocktail" with very little cranberry.

[lmcgill]

I only give our son 1 teaspoon a day of the Calm, he is 8 and about 52lbs. I tried him on the fish oil and he had a big increase in tics so I stopped. Our son had the prick test and showed nothing at all. On the IgG, (results posted earlier) he was off the chart on eggs and soy. We have stopped that for the last two weeks and now he doesn't even blink.

I noticed he would blink when we brushed his teeth, I wanted to change his Colgate to a natural no flouride one but my wife was adamant she was not doing that. She is a dental hygienist and has her own ideas on that subject!

I am doing better to, unfortunately I think it is dependent on how he is, so I still have to work out some things. Not sure how I will be if the tics return, but I know I need to prepare myself because I am sure they will be back.

The journed continues, we are just coming up to a year since he had the first big explosion where I took him to emergency, so we have come a long long way.

Lenny

[Cum Passus]

bmom,

 

I think you have a great start. I can relate to the " I have never seen him tic before" That is how it hit my son. around 8 or 9 yo. But they would go away for months, and I never knew what TS was. My husband has no noticable tics, and he was not dx as a child so it when over his head too. It wasn't until the explosion that we were, " This is not right." I hope you have a great jump start on his health now, and that will help when he is 10-13 yo.

 

I think it was Claire who said her son has done so well during those pre-teen years. That is such good news for all of you parents who are cleaning up your children's diet now at a young age.

 

Good luck, and mayby now that summer is here, you will have the chance to try new vit. and don't have to worry about school.

 

C.P.

[Florida]

Just wanted to mention that putting stuff in your kids bath can cause urinary tract irritations and infections. Bubble bath, perfumed and colored soaps can be very irritating to some. Even Epsom salts. Eating and drinking sugary stuff and caffiene is bad too.

 

You can get cranberry in pill form without the sugar but you need to drink a lot of water with them. Grapefruit seed extract works wonders for bladder and urinary tract infections.

[bmom]

Yes I had been giving him a ton of epsom salt baths and was wondering if that could be related. I have him on Kids Calm but also have natural calm without vit c and was wondering if that might be better after reading about vit c. I just bought grape seed vit the other day so maybe I can start that. Just concerned about too much and his tics are so good- afraid to change-afraid not to. Just wondering about the tics-Is there a determination between tourettes and transient? How long between? I know, is it just a name? I guess I am just trying to read the future. Im glad you are doing better Lenny. I too feel like that is my focus completely and am trying for it not to be. Easier said than done. Oh the calcium is calcium carbonate. Is there a better choice?

[kim]

bmom,

 

Here is a page with some good info on calcium. It looks like it has been updated since I last looked at it.

 

http://www.enzymestuff.com/calcium.htm

 

She mentions Pub Med studies which conflict about the absorbability of calcium carbonate. I found that too, when reading studies. It is stated many places that cabonate in not absorbable, but I don't know that that is necessairy true? The thing that concerns me the most is if it were made from oyster shells, because of possible lead content.

 

I use calcium citrate and mag taurate, but there are other reasons for that, too. My youngest son does eat a diet high in oxalates, and the citrate will help bind oxalate. He also had chrystals in his urine. I don't want to get too technical, and confuse you, but I have tried to look at every supplement very closely, since we are not doing regular testing. He also eats no meat, so I think the taurine is beneficial for him. I have recently added L Carnitine to aid with fat digestion...I give before he takes his 3 6 9 combo EFA. My older son takes Omega 3 only, since he eats a variety of foods and probably has a much higher level of Omega 6 from his diet.

 

As far as vit C goes, how much is in the natural calm? What I gathered from the articles I scanned, was urine that was too acidic would irritate the bladder and set the tissue up for easier infection. However, acidic environment, makes for less favorable conditions for bacterial growth, so it's a balancing act? You might want to search Pub Med and other sites, and see how much (dosage) vit C, one would have to take to even change the PH of urine. I suspect it will be a larger amount than what your son is getting in the natural calm.

[bmom]

Thank you. You are very informative. His hair analysis showed he was very low in calcium so I feel like I should continue with that. I will think about changing to citrate. Which test do you get your boys tested on to determine their vitamin needs? We have done the hair analysis, but was thinking that did not cover everything such as efa's. Also, he is not taking a probiotic and I was concerned about yeast while he is on the amox. Should I be supplementing or is amox one that is ok without a probiotic? One last question, when he is finished with the amox. what tests should I request to make sure strep and bladder infection are both clear. His doctor will probably just do swab and urine and I was wondering if I should request ASO titer tests again to make sure they are in the normal range and if they are not does that mean I should request more antibiotics? Thanks to anyone that could reply to any of these questions-it can be confusing.