ad_ccl Posted March 26, 2005 Author Report Share Posted March 26, 2005 Just a quick update. Light continues to be a problem - today it was by way of bright natural sunlight near the waterfront. YIKES - I can keep him away from the brightly lit stores, I can prevent him from watching a regular tv, I can take the LCD into school when the class is watching tv - but I really cannot prevent him from being exposed to sunshine! We also spend the better part of the summer at the cottage which is on a lake. It was quite clear to me today - his tics had decreased from the lights last week - and were pretty minimal and consisted of only a few eye tics sporadically through the day- nothing constant and nothing too obvious - he has not watched any tv since last Sunday as even the LCD was bothering his eyes. Today we were out for about 2 hours and it was very bright, his eye tics just got worse and worse. Then he started to complain of a upset stomach - I rolled me eyes up a few times like he was doing and it made me feel queasy too. By evening he was saying his eyes were really sore, and stinging - he was not himself, just wanted to go to bed. I am trying to figure this all out. Obviously viral illness as well as Strep were the obvious triggers before, and I think we are slowly getting a handle on that by building his immune system - now it seems bright light is his biggest trigger. I am trying to decide what tests I should do - and have another appt with the naturopath this week so I want to make a decision soon. I am going to go and get him a good pair of sunglasses tomorrow so I hope that will help. His behavior has been fine - and he has no vocal throat clearing stuff going on. He wanted all the lights in his room off and his eyes did seem a bit better once he was settled into bed. He hates what his eyes are doing and wishes it would stop...I hate this..... Ronna - your comments about allergies are interesting - I am trying to remember last year when my son's eyes started to act up - it was probably in April - antihistimine drops would settle them down. This was before the PANDAS and we did not see his eye stuff as tics but just as an allergic reaction due to them getting better on drops. Link to comment Share on other sites More sharing options...
ad_ccl Posted March 30, 2005 Author Report Share Posted March 30, 2005 Just wanted to update - I took my son to the doctor yesterday just to check his eyes as he was complaining about them being sore and stinging - I started some eye drops I had in the house - looking back it was around this time last year he had some blinking that we were worried was a tic and when we took him to the doctor he looked at his eyes and they were very red and irritated underneath, he gave him anti-allergy eye drops and the blinking stopped within a few days. Yesterday the doctor looked at his eyes and they were extremely red and bumpy under his eye - fire red. He suggested we continue on the drops and perhaps add allergy medication (over the counter) if the eye drops alone did not help. His eyes today are still red but not at all as bad - and his eye tic is almost gone - whereas on the weekend there were times it was constant. My current thoughts on this is that probably there is something in the air bothering his eyes but initally he was able to manage it without presenting with eye tics, the bright lights at the store and at the lake made things worse and then we got the eye tics - the bucket theory at play again. So...now that he has the drops to decrease the pain of his eyes he is better able to manage the lights - he has been wearing sunglasses outside and over the last few days, especially on the weekend he was wanting to wear the glasses inside as well - his eyes were so sore. Today he has not worn them inside nor complained of sore eyes. His teacher said he had a great day. I think it is important for us to not always assume everything that our kids have is a tic, there are sometimes underlying problems easily resolved. We saw this twice this winter with chapped lips, whenever his lips were chapped he would get a wierd mouth stretching tic, not what most kids would do when they have chapped lips. This 'tic' lasted a few days each time and went away once the lips were healed. Just wanted to mention this in light of several recent posts on eye tics and possible seasonal allergies. We are hoping to do some more testing over the next few days - our naturopath is looking into shipping etc. We did do the ELISA testing yesterday for the baby, myself and my husband - (cha ching, cha ching)- the baby has been sick a lot. One thing after another - presenting much like my older son did at his age - so my fear of PANDAS continues. With hope by learning what foods he may have problems with ( we already know milk was a problem) we will save his immune system from added stress. I would hate to see one of my other boys go through this. I still do belive in the end the silver lining has been well worth the dark cloud. On another note, I went to the naturopath for myself as well - just because I feel quite spent - emotionally, physically, mentally, etc - I know you will all understand those emotions. I think adrenalin kept me going somehow - really looking back I am amazed I managed to function somewhat normally. Now that the real crisis in many ways has passed - although this is all still a worry, I do feel that PANDAS will eventually be in our past - my body is probably almost just processing what I have been going through - anyway - the naturopath gave me a tonic of ginsing among a few other things, and recommended a good mulitvitamin and fish oils. I am amazed how much better I have been feeling - I have truly been converted to naturopathy. I had been to my regular doctor due to the chronic tension migraine I had been living with for 4 months - and was given some medication that did get rid of the headache after about a week- but the plan was for me to stay on this medication for several months - I was not feeling great about that. But every time I missed a pill to try to get off it my headache would come back. Since starting on the tonic last Thursday I have only taken 1 pill - instead of 15 - big difference. I have more energy during the day and sleep better at night. I know earlier on this thread Ronna and Claire both told me to look after myself - which I was trying to do, but I do wish I had gone to see the naturopath earlier to look at my "whole self". We as parents all know how much better the household functions when we are functioning well. Just want to remind everyone to look after yourself - the entire family will benefit. Link to comment Share on other sites More sharing options...
Guest Guest Posted March 30, 2005 Report Share Posted March 30, 2005 ad ccl, Your post about your son's lip problems and the stretching tic; my son would throw his head back while doing the stretching, so I am more inclined to say "tic", are something I am very fimiliar with. I have battled this with both of my boys every fall, right on through the winter, and even put an assortment of lip balms in my youngests' Easter basket. My older son finally got sick of the embarrassing red ring around his mouth and gets on it right away, I don't remember him doing the stretching thing, but my youngest did it constantly until the burning lips were under control. Doesn't it just remind you, along with your son's eye irritation, that things that are irritating their bodies, DO flaire tics. The lip problem and the eye problem are able to be seen externally, but food allergies and other interior problems, I believe flaire the other tics (shoulder shrugs, head shaking etc.) Now, I think of how absurd it is that the "wax and wane", just happening spontaneously; really is, but I never knew any different theory until this web site. My Dr.s certainly never mentioned it. I took both boys to the lab this morning for urine yeast testing. I don't know if I hope it's an issue, or not. Don't want to have to treat, but I desperately want to get to the bottom of my youngest son's eating problem (extremley limited, sugar and dairy) and it may give my ped. a little confidence, that I'm not totally crazy. I gave my Ped the codes that I got From Immunio labs, he knows nothing about yeast or the test. The lab said they were'nt fimiliar with it either-what a shame. Glad you are feeling better, I think I will have to reach that "bottom" before I take the advice so many of you have talked about, although I am no longer staying up until 2:00 AM. Take care and thanks for sharing. Kim Link to comment Share on other sites More sharing options...
ad_ccl Posted March 31, 2005 Author Report Share Posted March 31, 2005 Hi Kim, I think you summed up my thought on the tics and the flare ups much better than I did! I remember months ago reading a post here or on Braintalk from someone saying they could see specific tics result from particular food intake - ie - humm vocal tic with milk, head shaking tic with corn etc. You do mention your son has a limited diet - sugar and dairy. I am not sure if you have already done the ELISA testing, we did that with our son with tics whose entire diet consisted of dairy - I really did not put much stock in the food allergy/tic correlation at first - I assumed if he was allergic to foods it would be obvious in terms of gastro discomfort of some kind. In the end dairy was a big problem for him, once he stopped diary and then gluten and eggs and soy as well - his appetite has changed dramatically - as well as the tics all going away. He eats or at least tries everything that I make for dinner - meat, vegetables, all different fruits. My middle son also has a very limited diet, we did the Elisa test for him as well - no tics with him- and he was highly allergic to all the same foods as my oldest, and had a reaction to pretty much every food on the list at some level. I went to the naturopath for him and when we reviewed his history it became clear his system has been very taxed by antibiotics which have caused problems with his peyer's patch ( sp?) and his reactions to foods. He was put on prophylactic antibiotics within hours of being born due to concerns about his kidneys - at one week he had an invasive procedure done, a few days later he was in hospital grey, lifeless and diagnosed with a blood infection. He was put on several antibiotics immediately and remained on them for 5 days in hospital then several weeks at home, all the time he continued on the prophylactic antibiotic to prevent the kidney problems. Ultimately his kidneys were fine - the problem was that they were enlarged, but by 6-7 months they were fine and he was off the antibiotics. The invasive procedure was in relation to the kidneys - so all in all he did not have the greatest start. I could go on and on about him and his health - hospitalized a few times for severe respiratory distress - as well as many regular colds etc. So clearly his immune system is not up to par. I had hoped that once we went off the food that he would start eating so much better but this has not been the case, he has started to try a few more things but still eats no vegetables (except corn) and no meat. I think he has had nachos for breakfast, lunch and dinner today. We are seeing a nutritionalist tomorrow so I have to get some guidance from her. The naturopath has given him some powder to take everyday for his intestinal tract and he is starting on probiotics as well. Not sure why I went babbling on about him....I just pray that what we are learning now will help prevent he and his little brother from ever being diagnosed with PANDAS. Just thought of something in terms of changes since being off the milk for my middle son - 1. I feel his language has developed significantly, 2. he used to always almost have chapping under his mouth in the winter, it was like he was drooling and then the moisture when outside would chap - this has gone, and when we first went off the milk it was still quite cold - so I do not think it is from the change in weather. 3. his pull ups seems to be dry every morning, he has been toilet trained since 3 but always woke up with a very wet pull up until he went off milk - he does still drink goats milk or juice before bed so there has not been a reduction of intake of fluids. All 3 could be dismissed as resulting directly from the elimination of milk, but I believe there is a connection. Link to comment Share on other sites More sharing options...
kim Posted March 31, 2005 Report Share Posted March 31, 2005 ad ccl, Another similarity, the dreaded pull ups. Maybe I should get him off of milk, so hard -as I'm afraid he'll starve. Another wonderful poster said she just had to get to the place where she decided, no food was better than bad foods, and it worked-along with some other changes. Both of my boys have been on a considerable amount of antibiotics also. Lot's of streph when they were younger. The thing I find really curious is the way my youngest son just started eliminating foods at about 15 months. Before that, he ate everything offered really well. I remember 20/20 or one of those shows, did a show on what they called baby anorexics. Some of these toddlers had even started refusing water. They were really puzzeled as to what has started this disorder. I am too. I thought I finally had enough info. to get started with some testing. I got my boys up nice and early to get to the lab, to have a first morning urine collected for the same yeast test that Immuno labs does. Late this afternoon, I get a call from the Peds office, telling me Mayo, or another Lab they are authorized to send away for labs that can't be done locally, DO NOT DO ANY YEAST TESTING. They said if I wanted to pick up the specimens and pack on ice and mail to immuno, I could do that. So I call Immuno to get the packing instructions, and they tell me they only do yeast testing with blood. I was put on hold, and cut off no less than 4 times. When I did speak with a person, they were really helpful, but all in all, it was a very dissapointing day. Kim Link to comment Share on other sites More sharing options...
ad_ccl Posted April 2, 2005 Author Report Share Posted April 2, 2005 Kim - I had the same fears about my kids starving without milk - but have found that goats milk is fine with them, as is almond milk - only one of them liked rice milk - I hated it. I have also been buying goat cheese for pizza - there are so many kinds of goat cheese, I always thought there was only the soft cheese. It is amazing what you discover. Keep in mind if you use soya that something like 30-40% of kids with milk allergies are also allergic to soy - the case with both my kids. Marina - I am so thrilled to hear about how Matt is doing - 95% tic free - you are a superstar! Claire - I so enjoy reading the wonderful advise you give to so many - but do know the time it must take from your work day. Update from here, not sure what is keeping me from having a meltdown - seems when things are going well, a new problem arises. Last post my son's eye tic was almost gone with the eye drops, it did end up going away 100% - so he had NO tics, then yesterday he came home from school saying he did not feel great, he had a high fever and I found out strep was going through his class. He went to the doctor and we have decided not to increase his antibiotics at this time as his throat seems fine - we did swab it, he has a bad cough and high fever. Initially when his fever was high he started to have a few tics - one's we had not seen since January which made my heart drop as I thought we were heading back to the terrible tic explosion, once his fever was managed all the tics went away. He has continued to spike a fever every 8 hours and we give him motrin, and the tics have been very minimal - often non existent. He is a little more emotional than usual, but that makes sense since he is sick. This is the first illness he has had where there has not been a significant increase in tics, last time he was sick with strep about 6 weeks ago, tics remained for about 4 weeks but were minimal but regular - a throat clearing/ cough. This time they are very irregular and even more minimal. Knock on wood this means that his body is finally starting to react more normally to viral infections. Currently all three of my kids have fevers so something is going around. This has been a winter I hope never repeats itself. Link to comment Share on other sites More sharing options...
Claire Posted April 2, 2005 Report Share Posted April 2, 2005 Alison, I am glad you are holding off on antibiotics in case it isn't strep. I just said a prayer that it isn't. I went through this strep horror/scare last year as it cycled through my son's class 5 times!! Even better that your son is faring better this round--certainly a good sign. I am really glad you are factoring in allergies more and more. You and I are much in agreement there...some of these tics could be just allergic reactions, e.g. the eye irritation and the drops. My ENT doctor said that coughs can be a form of asthma or allergic reaction--I think of kids whose parents took them to a neurologist for a cough and had it labeled a vocal tic erroneously (I realize it can be a vocal tic, but to assume that?). Especially now that we are all seeing more and more the depressed immune systems and high allergies these kids have anyway. I didn't know that about your child's kidneys...wow, what a rough start! I just picked up some new business so I am trying hard to disappear again...it'ts end of Spring Break here so I took a little time off. Claire Link to comment Share on other sites More sharing options...
kim Posted April 2, 2005 Report Share Posted April 2, 2005 Claire & Alison, Claire, thank you so much for the info. on the zinc. I will ask about it, but I suspect the Ped is just assuming what we did and that it is on the lower end of normal. I don't see where copper was even tested. Calcium was 9.3 Ref Range 8.6to10.6, Magnenesium 2.1 ref. range 1.3-2.1, and P5p vitB6 48 Ref range 5-50. I thought all of these were in the high normal range, but now I wonder. Maybe low zinc is the problem, or he is unable to absorb the B6 cal/mag, due to a deficiency in something else? I guess I am really getting nowhere. This blood work was only done due to the fact that I wanted to make sure there was nothing medically wrong, before I started vit/supp. as Bonnie says to check with Dr. first. We may just end up running into Dara at Pfieffer! I agree, allergies, low antioxidant levels, and deficiencies in something, seem to be a common link here. Alison, it sure seems your oldest and my youngest have some common issues. Can you tell me how old he is? I took youngest roller blading last night and was noticing all ot the head nods and neck movements. Subtle but there. This place is full of flashing lights, disco ball laser beams etc. I wondere if he'll be worse today. He has also been playing gameboy over Spring break. I'm waiting for blood work to come back on oldest. He has been on Bonnies vit. in varying amounts for quite a while now. Will be interesting to compare. Kim Link to comment Share on other sites More sharing options...
ad_ccl Posted April 2, 2005 Author Report Share Posted April 2, 2005 Hi Kim, My oldest son who is the one with PANDAS is 6 - going on 7. I really think that food has been a big problem for him - and the lights seem to more of a newer thing, although I never thought to pay attention to lights - until we had the huge increase in tics at a toy store at Christmas, I assumed he was just excited - Claire drew my attention to the lights, I kept it in the back of my head - and the next time we went to a brightly lit store the same thing happened. We do not take him anywhere where there are bright lights, and he moved seats at school to be close to the window and the teacher keeps the lights off when she can, and when they are on only half are on. She has been such an incredible support though all of this. I will have to read through some of your old posts to remember more about your kids - I have trouble keeping everyone straight sometimes! My son is not allowed to play with his friends gameboys and he knows why, he tell them his eyes are allergic to the video game - I am hoping that we get to the bottom of the photosensitivity - Claire has pointed us in the right direction, as she has for so many others. I will keep you posted with anything I learn and any test results. My son still has a fever every 8 hours, but no noticeable increase in tics so we are thrilled, he has even been allowed to watch a little more tv than usual ( had been watching none while eye tics were bad last week) and he has been on the computer a few times, which is not LCD, and he has been fine. Claire, I have really come a long way to not be demanding more antibiotics for my son, I actually have several months supply so could have upped it if I wanted, which I probably would have done a few months ago, I am getting more and more confident as time is going on. We are so thrilled to see him doing so well, this is the first illness with no emotional stuff, and no obvious tics - eye tic is also completely gone after a week on drops. Here is hoping Spring is much better than winter was. Link to comment Share on other sites More sharing options...
Guest Guest_efgh Posted April 2, 2005 Report Share Posted April 2, 2005 Alison You mentioned you give a chewable multivitamin to your son on a daily basis. Can you please tell me the brand of that ? Does it NOT contain any artificial flavours? Does it contain IRON?? THanks Link to comment Share on other sites More sharing options...
ad_ccl Posted April 3, 2005 Author Report Share Posted April 3, 2005 We give our son Quest multivitamins - 2 chewables a day which is the recommended amount. It does have 2 mg of iron. We tried to give him vitamins called NuBears which were recommended to us, they have 5mg of iron in them - but he did not like the taste ( they were pretty bad). The Quest have no artificial colour, flavour etc. Based on blood work for him we have supplemented with iron at different times. We are currently planning on supplementing with iron (based on slightly low levels on the last blood test done) but the liquid I bought he did not like, I am going to try another brand. I am not so concerned about iron now as he now eats a variety of meats - what a change from the only meat he would eat would be in a happy meal burger - so we used to get him at least one to two a week - we have a ton of happy meal toys floating around this house. There was recently a thread about iron which I did not get around to replying to - I was just going to add that we were advised iron is best taken with orange juice - I think Claire already may have replied to that effect. Link to comment Share on other sites More sharing options...
Guest Guest_efgh Posted April 3, 2005 Report Share Posted April 3, 2005 Alison So, you give 4 mg of iron per day (from the multi ) to your son daily - am i right? I have read a lot of posts (and some articles on the internet) also saying that supplementing iron is generally not recommended - that is why most of the forum members here give Multi WITHOUT Iron. That is why, I wanted your inputs on this. So, did you choose this multi WITH Iron because your doctor recommended the same or did you choose that because your son has an iron deficiency? I have not checked my son for any iron deficiency but his multi which is pure contains 5 mg of iron. my naturopath said that "its perfectly fine" to give this multi. Hence was curious to double check with the rest of the forum members.. Link to comment Share on other sites More sharing options...
ad_ccl Posted April 4, 2005 Author Report Share Posted April 4, 2005 Yes, I give 4 mg a day. I have always had a concern about my son not having enough iron so always looked for a multi with iron - he used to eat no meat, then graduated to the happy meals and then some hot dogs. Whenever his iron was tested it was on the low side so there have been times I have supplemented with liquid iron - I am not really too concerned about him now as he is eating meat almost daily - pork, turkey, chicken, beef, - this is only since going off the dairy. I still cannot believe what he is eating. If only my middle one would start eating more than cheerios and rice krispies all day long - he has not had any meat in years - and we are meat eaters. The only time any friends of mine have mentioned giving iron free multivitamins is when their kids have constipation problems. Vitamins are becoming a little bit of an issue here - my son is just starting to rebel against them - now that I have started to taking vitamins and fish oils, I am taking 6 pills 2X a day and it does get monotonous. He is taking much more so I can empathize with his feelings of hating the vitamin routine. I am trying to get as many liquid vitamins as I can - we had started off trying liquids but he hated the taste, now he is willing to try again with liquids - so I plan on mixing it with a strong tasting drink to mask any taste. I tried a little today and he seemed ok with it. Does anyone know if zinc comes in a liquid form. Also, it is ok to just crush vitamins and dump out capsules into juice, I am assuming there is not a problem with this. RONNA - I seem to remember you saying your son had gone to just a regular multi and some fish oils before Christmas, but then I think I saw a post from you saying he was on bonnies vitamins still - did you try to go off them and found you needed to go back. I am just hoping to someday soon decrease the amount of vitamins we are giving, especially since he is now eating so much better. The illness he currently has - still feverish today - has caused minimal tics. Really only a slight nose twitch which I actually find endearing ( never thought I would say that). His nose is stuffed up so I think it is his reaction to the stuffy nose - much like his eye tic was the result of eye irritation. He continued to have no eye tics - and today I looked at them underneath and they are nice and pink - only a little red, last week they were fire red and bumpy. He has had a limited appetite so I have not been getting all the vitamins into him - I will keep him home tomorrow just to be sure he fully recovers. I did some juicing today, I borrowed a juicer to see how it goes - have not tried giving the kids any of it yet, but am freezing ice cubes of the juice so I can add it to their regular drinks - hoping to hide it from the middle kid - although nothing seems to get by him. Link to comment Share on other sites More sharing options...
kim Posted April 4, 2005 Report Share Posted April 4, 2005 Hi Everyone, Well, we ran out of Carnation instant breakfast, so I decided not to buy anymore, since this is when my son drinks the most milk. His tics got worse. I mentioned earlier that he had been playing game boy, and the roller blading rink had all of the flashy lights, so I didn't know what was going on, but yesterday he slept in the afternoon(unusual) and said his throat felt a little sore. Tonight we went grocery shopping and he was miserable. Aching legs, back, head and after we got home, he asked for the waste basket by his bed because once again he felt sick to his stomach, and he said his throat was really sore. I don't know if he is starting a virus, streph or what. Oldest son does not have a tic in sight, but man the MOOD. He is 12 and I'm wondering how much puberty may be playing in all of this. He has a shadow on his upper lip and his voice is cracking and getting deeper. My guys are both really big. Oldest is 5'7" and about 150lbs. Youngest (8) weighs about 82lbs. and is the tallest in his class, he is a fall birthday so he is almost a year behind some of the kids. If zinc contributes to growth, we may have to be careful! Alison, we were having dry nights, when the milk intake was reduced, although he was still eating his string cheese sticks, I also kept him away from his sugary, artificially colored drinkable yougarts. Oldest still itchy at night, I think I'll make an appt. tom with the local allergy Dr. for food testing. It may not be the answer, but could give us clues. Can anyone tell me if they would order the yeast test through Immuno(blood) or Great Smokey's (Urine?) I guess at this point I'm a little confused. Kim Link to comment Share on other sites More sharing options...
Claire Posted April 4, 2005 Report Share Posted April 4, 2005 Hi Kim, If you have a choice, I would do the urine test. Great Plains is the best known for the yeast tests, but I am sure that Great Smokies is fine I like Great Plains because they will show glutathione levels too. Being low here is VERY common, and would hint at metal issues---or not. I have read time and again that being wet at night often relates to foods. You have so many factors going on, it is impossible to pin things down, but with a sore throat and no cold symptoms, I would definitely get a swab. For your eldest son, the allergy testing for normal IgE immediate response is a good idea. Dermal issues are associated with the IgE test. It is foods that cause neurological issues which seem to show only in IgG (delayed reaction) test. As for the moods, I know what you mean, tough to separate puberty from other issues. Does he eat things with artificial ingredients? I think that can be a mood trigger for sure (molds too). efgh re iron efgh--some kids have too much iron, some not enough. I don't think you can generalize that it is bad or good. For example, I read that adhd kids are often low in iron, and yet some autism kids (I think a third?) have too much iron. The point is, you need to determine what is right for your own child. I prefer testing myself, but not everyone can afford it I know. Alison, Somewhere I started a thread on liquid and chewable vitamins and listed the ones that came in liquids. I wish I could find it. Jennifer pointed me to a zinc sulfate cream from Kirkman Labs. I know how hard it is. The best thing I did was moving my son to a chewable cal/mag tablet--that saves a lot of pills. I also to a chewable iron. He didn't seem to absorb the chewable C well enough so I switched. Kirkman has a liquid multi. Yes absolutely you can dump capsules into something. You will want to taste test the ones best for this. Some taste horrible and will overpower anything. Jennifer also gave me a great tip recently: Pfeiffer's pharmacy sells a liquid now that you can dump your capsule content into. I think that unlike the ones at normal pharmacies, there are no artificial ingredients. Definitely worth checking out. I thought the Kirkman Lab liquids tasted not very good, except the TMG one. Claire Link to comment Share on other sites More sharing options...
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