Friday, January 29, 2016

E: Health Update

There are just some things you never forget. I'll never forget the time E flipped over a swing at the park and gave himself a concussion. Or the time he had surgery to remove his tonsils and adenoids. And I won't forget the day I got an offhand comment that basically changed our lives. It sounds dramatic, but I'm forever indebted to someone who has no idea what a difference she made with one word. Magnesium. She isn't a doctor. She just threw something out at me, I took her word and ran with it because I was at my wits end, and it actually worked.

What's funny is that with all of E's health issues in the past, everyone had a comment, idea or advice. Some of it sounded plausible, and some of it was just flat out stupid or wrong. I always listened, I sometimes followed it, and sometimes ended up with yet another specialist because of it. None really made a difference, except to give me anxiety over the possibility of another unfortunate syndrome or disease.

It was the third weekend of June 2015 and one of the nights of the Glen Rock Fun Fair. I'm there every night it's here, so I'm not sure which night it was. I ran into my friend Elissa. Our boys are the same age and both very energetic. We weren't really going to be able to have a long conversation. They'd both be off and running in different directions as soon as they both came out of the Fun House. I'd mentioned E's tics and other health issues to her in the past. The school year had been tough for us with the tics. He had this finger to finger rubbing tic going on that made these gross blisters between his fingers. I think he may have had one between two toes also. They were of his own doing though because of all the friction of the constant rubbing.

I was literally taking small nail scissors and cutting the skin between his fingers almost every night. Then I had a cocktail of cortisone creams, Neosporin and whatever else I could add to it that I thought would help. I'd cream his fingers, then his face. He had also been rubbing his face raw in some spots. It was taking up so much time, doing this morning and night. Elissa asked how E was doing with all his stuff and I gave her a brief overview.

She said someone she knows has a kid who had a lot of tics and such. The mother had found that the child had a magnesium deficiency. They started giving him magnesium and his symptoms stopped. It sounded too good to be true. But magnesium? Hell, I could do that. That's something I'd probably be able to find wherever I buy vitamins. I don't need to ask any doctor, I can just do it. I was over doctors by then. I'd been told by a neurologist I like very much that E has tic disorder. Then, by a rheumatologist that he needs an x-ray because nevermind the elevated ANA that he had on his bloodwork, he said "ouch" when she bent him backwards. I think she thought maybe he could have scoliosis. The only thing I learned there was that whoever told me that specialists diagnose in their specialty, was correct.

I read some blogs and articles online and found one by a mom with a son who developed tics. She gave her son magnesium and the tics went away. What I also read there was that magnesium is supposed to be in children's vitamins. It's often eliminated because the pill would be too big. For most kids, it's okay that it isn't in there. Other kids are deficient in magnesium and the need it or they'll have all kinds of symptoms. Now my curiosity was really piqued. I went to the Vitamin Shoppe. It wasn't as easy as I thought to just pick up some magnesium. I asked for some help. I was shown Kids Natural Calm liquid. I thought that would be easier than trying to find a dosage of just magnesium and I didn't think crushing it up to put in food would be a good answer for us. He already had a low appetite. Trying to get him to eat something with a crushed magnesium topper seemed laughable.

I put the liquid into Trop50. I didn't want to give him regular orange juice daily because of the high amount of sugar. He'd never really had juice and I didn't want to bring in that level of sugar for his morning start. I didn't realize the reason why it's only "50" percent of the sugar is because it's sweetened with Stevia. I don't know how healthy or not that is, but I decided to pick my battles. I know it's not Sweet N Low, so for the time being, I'm sticking with it. E loves it. It doesn't seem to bother him that the liquid vitamin smells disgusting. In the Trop50, he can't get enough. I use the recommended dose in about six or seven ounces of juice.

It's now been exactly seven months. The tics are gone. Just gone. He sleeps through the night. He hasn't been sick in the entire time. Where he used to have some kind of respiratory problem almost every other month where he was prescribed antibiotics and/or steroids, we have had None. NONE. :::knocking on wood::: No more blisters on either fingers or toes. No scratching through the hair, no weird eye twitching. We used to just sit and watch him watch tv, waiting for the weird eye thing. It's been months and nothing.

I'm not a doctor. I'm not a nurse. I'm not in the medical profession at all. I'm just a mom. But I'm a mom who had been frustrated as hell, having gone to EIGHTEEN doctors, over SIX YEARS, in numerous specialties- Pediatrics, Pulmonology, Rheumatology, Immunology, Allergy & Asthma, ENT, Neurology, Infections Disease. Blood test and specific disease tests like Cystic Fibrosis and autoimmune disease. ALL TO COME UP WITH NOTHING. NADA. The allergist said it's probably allergies but the tests showed nothing. The pulmonolgist diagnosed asthma and gave me steroid inhalers. The neurologist said tic disorder, the pediatrician swore he heard wheezing and corroborated possible asthma. Or "Cough Variant Asthma". More inhalers and steroids. The ENT said tonsils & adenoids need to come out, so we did that. It eliminated the smoker's cough, but did nothing about the tics. The immunologist had a strong and scary reaction to the elevated ANA, sent me to the rheumatologist, where that doctor didn't seem concerned at all except for his spine.

It just has gotten to the point where I have to take everything said to me by a doctor with a grain of salt. I don't think I'm smarter than the doctors. I just think that doctors don't have a lot of time and they diagnose what they're used to seeing. They're hyper aware in their own specialty and they see things that when isolated, seem to be the problem in the realm of what they specialize in.

Eighteen doctors. Good ones, bad ones, strange ones, rushed ones, great ones, funny ones, respected ones. But not one, not ONE, ever so much as whispered the word magnesium

We're not totally in the clear. He still has days where he feels "itchy" and I can see him swiping at his face like he used to do. However- it's MUCH less and it could be for other reasons. He's on a swim team, swims twice a week for over an hour, so he's in chlorine a lot. Chlorine is no friend to the skin. He might be more of what a doctor might call an "allergy kid". He doesn't have eczema or anything, but the pediatrician showed me yesterday that when he scratches himself, the scratches get a little puffy. Almost like hives would. So it just means that he is just more prone to a bit of allergic reaction. I can buy into that. Eczema runs in B's family and mom had psoriasis.

He's in regular public school and he has twenty three other kids in his class. We also live in a state with four seasons. I'm not surprised he gets congested here and there. We figured out that if we give him some kind of antihistamine/decongestant cough & cold medicine, at the first sign of a cough and/or a runny nose, to dry him up, that stops it from turning into something which he used to need antibiotics and steroids. It's sort of unconventional because people I read comments from on local mom message boards are afraid to give their kids cold medications. For us, it's saved us more antibiotics and steroids. I'd much rather give him over the counter cold medicine and never get to the kinds of sinus infections and coughs he's had in the past. So in conjunction with the magnesium, cold medicine seems to be another piece of the puzzle.

I just can't even properly explain the difference between "Before Magnesium" and "After Magnesium". If you haven't been in fear for what could be wrong with your kid, it's a hard place for people to understand. It wasn't even that the tics he had were embarrassing or stopping him from doing things, but they were physically hurting him. The blisters hurt and were gross. The sides of his mouth and the sides of nose were red and raw. His eyes were red. He looked crazy.

Including the scratching and rubbing, he had all kind of behaviors were somewhat OCD and they took a lot of time. He's still a little OCD about things, but more in a normal kid way and not in a way that seemed like it could be the symptom of a larger problem. He also doesn't get nauseated in the car as often. And the biggest thing- he seems fine so far to go on rides. He had such an adverse reaction to going on rides. It was like his equilibrium was off. He'd get hysterical and crying on rides that he used to love and go on for hours. We went to Hershey Park in September instead of the weekend in June when I saw Elissa. We were supposed to go on Father's Day and because of the threat of an impending storm, we postponed. He'd been on the magnesium vitamin since June, so by September, at Hershey, he went on rides he'd previously not been able to go on. Nothing could've made us happier. His biggest joy in life is carnivals and the rides. The thought he'd just have to stop doing that for some unknown reason, totally sucked.

That's where we are. I don't have any idea if magnesium is magic. I don't know what else it "cures". I don't know if it would work for everyone's kid. Tic disorder, Tourette's Syndrome, autoimmune diseases, Cystic Fibrosis, Asthma, and everything else doctors came up with are all real medical issues. What I can say is that magnesium worked for us. I told a friend about E, she started using it on her son in roll-on form down his spine, and it eliminated an issue they'd been having with him. So I guess what I'm saying, is that, if your kid has any or all symptoms that E's dealt with, that I've written about, it's worth a shot. I've spent thousands of dollars on medications, co-pays, and treatments. I've been scared to death over possible diagnoses.

Had I known I could just go to a vitamin store, I could've saved myself a lot of time, energy and money. That's not to say I believe in the whole holistic thing either. As my readers know, I left "THE" holistic pediatrics office in my area, because I DON'T think everything can be cured with garlic oil in the ear. I need a really good balance between holistic and regular western medicine. I need to go with my gut and I need a prescription if necessary. My advice is to go with your gut, don't take the word of just one doctor, see who you think is going to help your kid, be open to things you didn't think could work, but just because it seems too easy of an answer, doesn't mean it's wrong.

For now, I'm just going to keep doing what we're doing, watch him, and hope for the best. So far, so good.

Natural Vitality Kids Natural Calm

E's health history entries:

E's Story
E's Story Part Deux
The Day We Got Our Kid Back
She's Alive

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