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When you tihink all is fine....


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Just wanted to add my experience with PITANDS - my son was on full dose antibiotics from end of August to January - minus a few days here and there where tics would explode again - even on antibiotics he would have many ups and downs and the times he was at his worst were when others in the household were fighting viral illness - he at no time showed any signs of illness other than an increase in tics. Since being on the supplements the only downturn we had was when he had him drink milk for a week - since being on supplements and off milk his immune system seems to be doing very well - have not seen a tic today!!!!! I think we are into our 4th good week. The first time off the antibiotics when tics increased again within a few days his throat swab did come back negative but the doctor did give me antibiotics (I begged) his tics decreased by day 3 on antibiotics.

Hang in there -

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I'm trying but its so hard. I called his doctor today and asked about his last bout of strep. It was in April of 04 and I returned to the office in July and September because he complained about his throat. Half of his throat was sooo red and swollen but the strep test kept coming back neg. Luke told me that he stopped complaining about it because no one did anything. I just thought it disappeared until last week when he started to complain about it again. This time it was not red but he did still complain for a night and never heard about it again. From July through and into September it was an issue. Early October came and so did the croup where his was rushed to the ER and given a course treatment for croup and asthma- since they did not know what to treat. That is when he was given steroids. I would imagine that this surpressed the throat issue, but caused something else because in October is when I noticed the blinking and by December he was ticing and twitching. I spoke to a mom of a child in his class who told me that since Sept. strep has not stopped within the class. Last month his friend had his tonsils removed because of on going strep, 2 girls and 1 boy right know are on meds for strep. These are all of the kids that he eats, naps, plays and learns with daily. The only thing I did notice is that when these tics started his lips were really chapped, and his face was pale, blue around the eyes and his cheeks were red and extremely dry and his hands were red like sunburn from the cold. Soon after the supps/vits the color came back to his face, blueness around the eyes gone, chapped lips were healed, cheeks and hands were soft and great a reduction (not gone) in tics. Now chapped lips are back, blueness around the eyes is present, cheeks are red and very dry and as for the tics they are ever present. If I read correctly strep can affect the skin not only the throat right?

Any thoughts?

 

Marie

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Marie,

 

I didn't know all this background before! This is ridiculous, if strep is going around his class and he has a sore throat and/or a new onset of tics, he needs antibiotics.

 

If your doctor doesn't know about PANDAS, then I personally would: 1) print out the NIH press release I posted on eaccae's thread and fax it to them or 2) find an ear nose throat doctor who will treat sore throats other than those with a positive strep culture. This is what we did--I thank God that I found such a doctor. ENT's (ear nose throat) are more knowledgeable than GP's about other throat infections. Just tell them it is going around the classroom.

 

Marie, this is important. IF it is strep or some related PANDAS/PITANDS things, I read that the longer it goes untreated, the greater the chance of more chronic immune issues. Time to be a mother bear--you can always find another doctor--this is your child, not theirs.

 

 

Claire

 

ps you know I don't like antibiotics if not needed, but PANDAS is another deal.

 

Also, both steroid and antibiotics contribute to/create yeast issues.

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Hi all,

 

Last week was sooooo good for Luke. Very minor stuff, mostly mouth stretching. No eye rollong, head nodding etc. By Saturday I let him watch 1 hour of LCR TV and he did nothing. Great I thought, but by Sunday he was mouth stretching a lot. By Sunday night he started this thing with screaming. Is it play or is it tics? I questioned him and he said he liked to do it. He is fully aware of it and he told me that he can control it. I told him that it scared me so to let me know so that I would not jump out of my skin. So today when he played dinosaurs he asked me if it would be ok and I said "sure" and he scream a few times and that was it. I am so afraid of the vocal stuff and more tics that I am seeing everything as a tic and I afraid that reality is mixing with worry.

As for my next move, I have ordered Travac which is a supp that made with 5 http and high in the b-6, folic acid and Vitamin C. The Nutritionist claims that this will raise the seratonin level of which he is low on and that should help some of his issues. Any thought?

 

Marie

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Hi Marie,

 

I think you know that TV can have a delayed tic reaction,--I sound like a broken record, but it can last for days and up to a week. So I would keep an eye on this.

 

I think they need to be able to feel free to scream or whatever in the safety of their own home. As long as they can go somewhere where you don't get a headache from it.

 

Some like 5HTP a lot, e.g. Chemar's son. But as I keep posting, for undermethylated kids, Pfeiffer says it is bad. So you can either try it and see for yourself, or get your doctor to do the labcorp.com test.

 

Claire

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Hi Claire;

 

I really do not understand under meth kids, can you explain? Also, who is Pfeizer (? spelling). I see this name in some posts. I did have neuroscience do a urine test and the seratonin levels were low and the dop levels high. I understand that you cannot raise/lower these levels throught proper nutrition, so how do you balance this out?

 

Marie

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Marie,

 

We have a thread on methylation with more detail.

http://www.latitudes.org/forums/index.php?...inter&f=1&t=837

 

Pfeiffer is a well respected clinic that does a lot with immune issues for add, ocd and autism kids. I tend to review their research a lot. We have threads on Pfeiffer--Jennifer, Nancy and I all did their outreach clinic. You can check it out on their topic methylation--and a number of other things.

 

http://www.alternativementalhealth.com/art...icles/walsh.htm

 

I don't know the rest of what you were asking--out of my area of expertise.

 

Methylation issues can supposedly be treated.

 

Claire

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Thanks for the information. I will try to digest it and see. What I noticed so far is that I changed multivitamins 2 weeks ago that include choline and inostal (?spelling) and added zinc because I saw some things on the forum about pyluria. Luke has not had any dreams or dream recall, he was sensitive to light and sound, and did not have an appetite until 2 weeks after we started him on the B complex, so I guess you can say that he did not have any sense of taste. As of today he has told me about three dreams he had over the past week, his tics have slowed, his appetite increase (gained 1 pound and grew about an inch or so in three weeks) and we are now able to have all of the lights on in the morning hours (prior to natrual light). The b complex and multi are low dosages. I would assume a more aggressive approach would yield maybe something better. The Travacor that I ordered is very high in B-6 , B-12, Magnesium, Taurine, 5HTP, N-Acetycysteine, Zinc picolinate and Selenomethionine. I have read so much on this site about this supps and the more I read the more confused I become. If it were me deciding for me I would just take it. But I will discuss this further with my Nutritionist and see. If anyone has anymore comments, I would appreciate it.

 

 

Thanks,

 

Marie

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Marie,

 

You know from my posts how much of an impact I think pyroluria can have, especially for those with light sensitivity and poor dream recall. Given what you described, it sounds like your son did/does have it. (though I prefer testing first before treating).

 

My view on vitamins is almost always this: add one new one at a time. Easier to say than to do! Good luck, and let us know how it works out.

 

It sounds like the tics from the cold went away?

 

I will let others chime in...

 

Claire

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For Claire and Chemar,

 

Earlier on this thread you mentioned an iherb website. Would you mind posting the address of this site again as I haven't been able to find it. Thanks for all.

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Hi All,

 

I just got back from the neurologist and she stated that he has tics and nothing more. She did not order any tests and stated the same retoric that it may go away on its own or might not. Although open to new ideas and she has an 8 year old daughter who tics, she told me that the progress I have made would have occured even if I did not supplement. I do not believe that for one moment. So I now know that his symptoms and motor skills do not lead to any terminal ugly stuff and that I can think clearly on the matter at hand....tics. Interesting enough a casual friend told me of her daughter who has had tics for 4 years and 2 weeks ago her son started. Another person I know told me of her nephew who has/had tics for a couple years and they are no big deal. So I guess when you start speaking about what lies behind your door, many other people start to confide in whats happening behind their doors.

 

Marie

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