Pediatric Neurologist's appointment

[kim]

Sarah,

 

Your list sounded great to me. Have you started any kind of testing or treatment for intestinal yeast/bacteria? (Sarah had indicated that both her son and daughter had had repeated thrush, and she had suspected the yeast problem elsewhere also). Switched formula, scheduled a second opinion?

 

Daniel forwarded a couple of articles to me. This is an excerpt from one.

 

According to a report in the Lancet in 1989, many infant formulas contain aluminum. In this report it was revealed that human breast milk contained 5-20 micrograms per liter of aluminum, cow’s milk-based formulas contained 20 times as much aluminum, and soy-based formulas contained 100 times as much. So human breast milk had the lowest concentrations, proving to be the safest.

 

100 times the amount found in human breast milk?

 

http://www.drlaurathompson.com/scicnhealthart.htm

http://www.drlaurathompson.com/communityaction.htm#Kids

 

 

I think of you and your son often. Please let us know how you're doing when you can!

 

Kim

[sis]

I am so fustrated with my reg. ped right now. I have called twice concerning the yeast that my son has in his groin and around his anus. I cant get him in till Fri.

 

The ped. neuro finally returned my call SIX DAYS LATER. She wants to see him next week instead of six months from now. Problem is I think my son is not jerking his head as much, since I switched from fluride water and then from soy-formula to milk-based-lactose-free. So I hope I can get him on tape when he does make the head jerking in question.

 

I'm very thankful for your support. You all have been so wonderful to me.

[kim]

Sarah,

 

Just a couple of thoughts. When I asked you the question about the symptom from Dr. Rapps book, I"m not sure if that suggested yeast in that particular area, or just a sign that candida overgrowth was present in the GI tract. It was just a surprising bit of info. and something I remembered from youngest son, as I indicated to you, I was always so careful to keep the diaper area clean, and wondered why that kept happening. I have returned the book to the library or I would look at that more carefully for you.

 

I have not treated either of my son's for yeast overgrowth/bad bacteria, and really have limited knowledge.

 

I'm afraid when you try to discuss this with your current Dr.s you are going to have continued frustration. It appears many mainstream Dr.s do not really recognise intestinal yeast overgrowth as a problem, and if the signs of the oral thrush have cleared up, they may just dismiss your concern. Again, if you can get your son to a DAN! Dr. or an Integrative Physician, you will probably have much greater success, unless you have more open minded, or experienced Dr.s in this area than I have encountered.

 

I'm thrilled to hear it appears your son has improved!!! Just keep a close eye on him with the new formula. I know you mention that the new formula is lactose free, but from my understanding, that is a sugar in the milk which some people do have a problem with, but you also have to remember caesin, a milk protein, can be a cause of problems for some. (other posters with more knowledge, feel free to help me out here!) Keep at it Sarah! The quicker you can identify any of these sensitivities/problems with your son, if present, the better success you may have in making sure they don't become long term problems.

 

Thoughts and prayers!

 

Kim

[sis]

Well i thought I'd give you an update on my dear son who is now 8months. I have quit the fluoride water and a couple weeks later switched from Soy formula to milk-based. His head shaking like"no" and head butting forward has vanished. We went to Easter Seals because of his delayed developement (not sitting up on own, low muscle tone- and not saying consenents -only vowels) he is starting to crawl though.-Who ever heard of a baby crawling before they sit up? Not me.

So I'm pretty sure it was the maganese in the soy formula.

I have suspician of something with him however. the Easter seals wants to keep seeing him, and wants him evaluated by a speech theripist. He aspirated the day after birth, does spit up often, chokes/gags on chalky peas or cereal, but more importantly HATES to be coddled. He doesnt like to be held face to face much. Even when feeding from a bottle, he often bucks and rolls away from being held. Looking back now, maybe I had a little PPD after his birth that prevented me from REALLY trying everything to insure the bond with him. It was more difficult by the fact that he was a really easy baby. He never demanded much. If he was fed and dry, he was sleeping. --The bond though, I mean, he loves me, gets excited when I walk into the room and he and I obviously have a connection. But I breastfed his sister for nine months and had a reeeeeally close bond with her. But his head shaking since birth and now his bucking to "get down" while feeding --well it is sooo difficult to share mother/child moments with him. I really am upset by this "difficentcy" It leaves a hole in my heart.

Does anyone think this relationship might be "flawed" or just different? What about some sensory issues? I want to do what I can to give him all the love I can. I dont know, maybe I'm grieving the "loss" that he is'nt the "lover" his sister was/is. Maybe I need to realize he just doesnt like to be loved on like that.

Thanks for listening.

Sarah

[Andy]

Sis, I have three kids and they are all different with everything from milestones to personality. However, to be on the safe side and so you have peace of mind I would recommend as a parent that you take your son to a DAN doctor for a check up.

[kim]

Sis,

 

My 12 year old son and I have always been so close. He is sensitive and a deep thinker, and I love his insight where people are concerned. But let me tell you, if he's sick and I try to rub his back, or if I put my hand on his knee, or kind of rub his leg-It drives him crazy. I believe it's a sensory issue. It has nothing to do with how much he loves me, and he IS a big hugger. Please do not waste time on guilt of what you may have felt, or done wrong early on. When that little guy acts uncomfortable, I honestly feel like the best thing you can do is give him his space, and communicate to him that it is "just fine" with you, however he needs you to love him, is just fine. I know it's hard as a Mom, the natural thing to want to do, is cuddle and comfort, especially an infant, just don't take it personally.

 

When either of my boys are having a bad day, or as I said in an earlier post, my 8 yr old has had the virus from ****. He can be really wicked in the personality dept. You have to overlook these things the best way you can, while communicating that it's "unacceptable" at the same time. I also agree with Andy, don't expect the same things from both children, especially a boy and a girl.

 

I see Mom's with daughters, and sometimes I'm a little envious, but these boys have their own way of being wonderful, and I think it's really different from girls. I wouldn't have wanted to miss out on having a son for anything.

 

If the improvements you have seen are a result of removing the soy formula due to high maganese, just keep in mind your son could have a problem excreting. A lot of kids drink soy formula without neuro symptoms (although, if this info on soy is accurate, I think it's criminal that parent's aren't informed-everything carries a warning now days, why not soy?). I think Andy's advice is the best, if at all possible, have him evaluated by the best you can find.

 

I remember both of my guys walking, talking meeting all the milestone early or on track, but they didn't roll over! for a really long time. I thought that was weird at the time but didn't dwell on it much.

 

Anyway, I was so glad to hear from you again. Please keep us updated!

 

Kim

[mmazz]

Hi Sarah;

 

You touched upon an area that I have somewhat experienced. My little one hated to be kissed. Every kiss I gave him was immediately wiped away. Hugging him was much like trying to catch a bear. That I believe was the onset of the sensory issue. As things progress clothes, socks, shoes, and finally lights and Tv's became an issue. All of these things flew under the radar until the tics appeared. So I can assure you that it is not a personality trait or the results of something between you and him.

This is my gut feeling. The soy formula once eliminated shown great improvement in out ward tics. So you know the cause or at least one of them. If you are allergic to something and you are sustaining life on it, it compromises your immune system. Once taken away just doesn't do the trick. You now have to fix the twitchy immune system one piece at a time and get the body back to a balance. Once on the right path you may find each little quirk fixed. Now to add insult to injury would be the vaccines. Especially with the milestone issue. Detoxing the body at any age is important. I would recommend a carrot and spinach juice daily for him to build the digestive enzymes and add immediately vit/minerals while detoxing. I know I have recommended this book to all who were interested in juicing "fresh fruits and vegetables" by Norman Walker. Pick up this book, read it to get a better understanding of how the body works and why juicing is so important. My son reactions to juice were huge. Things I did not know that his lifestyle/diet were surpressing came to surfurce. He grew, gained weight, his hair filled in and became shiny. His grades improved, sleep improved, etc. So ther is a lot to be said for juicing. But it is a life style change, it is work and it does take a long, long, long time to treat things nutritionally. With that I wish you luck and my prayers are for you and your little. But remember you are an excellent parent and take pride in yourself. Look at all of these great parents here on this forum then review some of the early posts, all of us here first blamed ourselves for what was happening with our children. I think that it is just human nature to feel that way. But the truth is that we huddled together brought pieces of knowledge here that we could not find traditionally and just look at the results. You are now seeing some of it. Be happy for the small triumphs for you will look back one day and see many small triumphs which will be amazingly large strides.

 

Be Well,

 

Marie

 

Be Well,

 

Marie

[ad_ccl]

Marie,

 

The last few sentences of your post brought tears to my eyes. What you said is so true - we really are all helping each other in such an amazing way. I don't know where our journey would be right now without the internet....actually I have a pretty good idea and it would be a scary place.

 

Thanks as always for all the support, advise and encouragement.

 

Kim- so glad your son is feeling better - your juicing comment about the chocolate bars cracked me up. I often get a laugh from your great sense of humour that comes out in your posts.

 

Evie -that is amazing news about the nodding going away - as Marie said slowly all the small gains become one big gain. My son had major sensory stuff related to clothes - tags mostly, but shirts had to be tucked in so they would not 'slip', socks could not slip down, shirts could not be too long or too short. I am happy to advise this is all part of the past - he still prefers tags coming off but he wears his shirts untucked and clothes can be a little big or small and not bother him. He always liked hugs and kisses - but now that he just turned 7 - he is starting to wipe them away if we are in public! I have taken his cue and no more public displays of affection now that he is such a big boy!

[Guest denise lyon]

Hi. I may have no business to be on this conversation but I just wanted to add that all the regular doctors and specialists that I saw painted a bleak picture for my son over the early years and only offered powerful drugs for my little boy to take. Well 4 years later of using  natural organic foods, probiotics, special elimination diet, supplements of amino acids, vitamins, and minerals, epsom salt baths, air filters, as well as going thru chelating, my son went from being seen by those doctors as a special education classroom student/home instruction to actually being tested into the gifted program a few weeks ago. So hang in there. It is a long road. A road that we are still traveling ourselves but a road worth the effort for great results are possible. Be proactive, get educated and stay up to date for every 1/2 year or so amazing things in treatments are coming out.

8798[/snapback]

[KJS]

To those of you who have commented on your kids being sensitive to sensory stimulation of various sorts, I have to tell you about the HANDLE approach I am trying with my daughter. She will be 12 years old this week and when she was much younger she couldn't tolerate lines on socks, turtleneck shirts, buttons, zippers, tight things around her waist, tags. Although most of those things have gone away, the OT who evaluated her still found tactile hypersensitivity. We're being guided by an Occupational Therapist and some of the activities we do are to reduce this tactile hypersensitivity. I believe it is working! There is an activity that involves slowly rolling a ball up and down the arms and back and legs, pausing when it tickles or just doesn't feel good, and stopping altogether after 3 pauses in one session. My daughter went from being able to tolerate arms, hands and back but NOT the back of her legs, to being able to tolerate the full session without even a pause. Information can be found at www.handle.org.

 

Good luck!

Karen

[kim]

Bumping for newcomers

[sis]

Hi guys. I'm glad you're reading and I hope all is well with all of you.

My dear son is now ten months old and has been off Soy formula, off of flouride water, and hasnt had immunizations since he was 4-5 months.

We have been to a chiropractor/herbalist who recomended Zymex and Thymex and Flax Oil. Although the Flax oil has been hard to get down him.

He has never showed so much improvement.

He is so normal now. he is still a little behind on the talking, only making a few consonent sounds. (b n d and some m)

He is pulling up to a stand and sitting up great. He crawls faster than I can walk.

His head shaking really STOPPED for a month or so. Although lately it seems that he wants to do some other head movement back and forth. So again this ugly problem rears its ugly head.

I really hope you girls are doing well. and i want you all to know I thank you for all your support so far on this journey.

I found a great website for immunizations. thinktwice.com

Love to you , Sarah

[Chemar]

Hi Sarah

 

what wonderfully encouraging news!

 

whenever I read another in the growing number of reports like yours, it again reinforces that, although some may negate all this as "purely anecdotal" and without scientific evidence....yet the proof that these things do work is in our improved children

 

thanks so much for your update Sarah as I know it will also be an inspiration to many others here.

 

stay in touch

[kim]

Sarah,

 

Chemar said exactly what I was thinking as I was reading your post.

So very very happy to read of your son's improvement.

Please do keep us posted.

 

For anyone else interested in reading, http://thinktwice.com/multiple.htm

 

 

Kim

[Andy]

I'm more of a believer of using the DAN doctors but if your guy is doing the job that is just as good. Glad to hear that all is going for the better. Our kids are being poisoned from so many directions that one answer can not fit all of our kids. Glad once again that it seems that you have found your child's answer. Note of caution. Keep your eyes open to everything new that your child injests for your baby may be prone to react to other poisons out there as well. Just caution, please do not fret about it.