*Warning-Long Post!!!* Read the bottom for current events in this process.
It all started in Feb. 06. My oldest son was 9 mths, when he had his first Breath Holding Spell – ‘BHS’. And yes, it was quite scary, as it came on so suddenly. We were in PA at the time, so we just did the best we could, allowing him his space. It was strange though in the things that triggered them. It wasn’t the normal way of a child mad about ‘not-getting-his-own-way-so-I’ll-hold-my-breath’ type of thing. We tried to punish for it, but it seemed to make it worse, so we quite that route. I know we tried a number of things, but my brain is failing me with what we did.
It scared each and every person that would see him have a BHS. He would get all stiff, arch his back, his head was thrown back, his hands and feet would curl and get real stiff and his eyes would roll too. He would kick his feet in a very erratic way. All the while he was turning blue and not breathing. He would force all his air out-causing him to turn blue. (Most Breath Holders, take a deep breath and hold all the oxygen in their lungs.) Then just when he got to the point of him passing out, he would take a shallow breath and then a deeper one. Then instantly he would curl into a ball and begin grinding his teeth.
As his color returned he would slowly uncurl and begin opening his eyes. It would take a few minute for him to focus on us and recognize his surroundings. Then he would cry, and most of his color would return to normal. Though he did have tinges of blue around lips and hands.
We could not hold him while he was in one of his spells. So we would lay him on the floor where ever he was at. If he was standing, he would fall over, hitting whatever was in his way. Most times we caught him before he would fall, but he did get bumps and bruises from hitting things. At his peak he would have one a day, or every other day. And they would last anywhere from 2-5 minutes.
The first months of BHS were not bad. He didn’t have the full blown reactions like I just described above. So we learned to just move with it. Until that day in June… When he had his first full BHS, as I described above. And it scared us really, really bad!!!! I was so thankful it happened over lunch time, so that my Hubby was home. He had been playing on our enclosed porch, so we don’t know what triggered it.
We decided to head to the ER, but half way to town he came to. So we just went to the clinic. There they did a EKG on his heart. And found nothing to be wrong. So they sent us home to watch him.
I don’t remember the exact time frames here anymore… 😦 (That’s what happens when you don’t write things down.) I do know a friend of ours, who was also a nurse and working in a Children’s Hospital observed him and said it’s a minor seizure. I think we had an appointment scheduled before we knew that, to have an EEG done. So we had an interesting 24hrs. of keeping him awake most of a night, to stress his brain out and then doing the test on him.
Only to be told that every thing is normal, he is just holding his breath as a method of control. We did not believe that!! He was NOT doing it as a form of control. We were also told he would out grow it by the age of 2. So we were greatly looking forward to that spot in life.
We learned how to handle life, how to make things easier for Collin. And we watched for things that would trigger the spells. The main thing to trigger it was fast changes in plans, or sudden decisions to do something, fast moves-running somewhere, and he didn’t understand what was happening. Looking back we know he was not able to process too many things at once. So we tried to cushion things, break it to him gently and take him with us EVERYWHERE!!! If we were away from home, we dared not walk out of his site. He stayed next to us at ALL times. People and crowds were an overload to his brain and he would invariably have a BHS when we were in a crowd somewhere. (Not a good thing, as all those around us would freak out. And we’d have a lot of explaining to do.)
I posted the following on a former blog of mine, on Oct. 15, 2008–
I first noticed Collin’s “Belly aches”, about 6-8 mths ago. He would complain after some meals, “My belly hurts.” And that’s about all it would be… lasting maybe 5 minutes. It started out to be once a week, moving up, to about once a day. Often being after breakfast.
In May, Collin had turned 3. And remember we had been told by Doctors, that his BHS-breath holding spells- would be gone by the ago of 2?!? Well, here he was 3, and no sign of let up. So I decided it was time to dig into it all over again. And spend much time in prayer over it!! I really had no clue where to start, as I had thought I uncovered every stone there was to uncover 2 years before.
I happened to share one Sunday after church with 2 ladies about Collin’s stomach aches, and how it only happens after he eats… and they both thought it sounded like milk allergies/intolerance. We discussed it quite extensively, and I left feeling like I had a new road to look into. And I figured, “What would it hurt to try“?? We had tried so many things, what’s one more, who knows it just maybe the answer. I decided to wait ‘til the end of July, after a camp out to start him on it. But right away, was limiting his milk intake, to get him used to the idea.
Some time in June, I think, a cousin went to a home school convention, and brought home a wealth of information for me!! I really hit a gold mine with that one. Or rather it was GOD that just opened the doors up for me, showing us avenues never before thought of.
Bev had gotten the CD’s from her Mom, and I finally got them listened to in Aug. And WOW, was she describing Collin to a ‘T’!!! I’ll try to relay that info on here, but it is so much… The speaker was Dianne Craft, from CO. And she works with kids all over.
Collin, as you know is the type, that freaks out easily, can’t handle change, Doing anything out of the ordinary, sudden moves, noises, big, scary things, yes, it got to be very old!!! And listening to Dianne and all she had to say, I had to laugh, realizing some of the things I thought were just “Normal” for Collin, are actually another symptom of it all, such as only liking to wear certain clothes, basically soft things, like sweats and t-shirts. That he wasn’t able to fall asleep easily, he never liked to sit and listen to me read stories, got frustrated easily when trying a new thing and he couldn’t figure it out…
The following is an excerpt from her Website…
These are all symptoms of lacking the neurotransmitter, serotonin. Serotonin is the brain chemical that keeps us focused, instills a sense of well being, and helps us fall asleep easily. How had he gotten this deficiency in serotonin? That is a very interesting story. Dr. Michael Gershon, a neurobiologist and medical researcher from Columbia University in New York discovered that ninety-five percent of this brain neurotransmitter, serotonin, is produced in our “gut.” In fact he has a book called The Second Brain, in which he describes this intricate relationship between gut and brain functioning. How was Joseph’s gut health compromised so that he could no longer make enough serotonin to keep him feeling good? In our intestines, we have both yeast and healthy bacteria. When the mother takes an antibiotic while she is pregnant, or the child takes an antibiotic, the yeast in the intestines begins to overgrow because the good bacteria in the gut is eliminated right along with the bad bacteria that was causing the ear or other infection. When a child has too much yeast, or mold in his body, it often will often “come out” of the body in the form of diaper rash, hives, thrush in the mouth, canker sores or athlete’s foot. When the yeast in the gut overgrows it causes tiny perforations in the mucosa lining of the gut, creating some damage to the lining. It is in this area that the body makes the calming, focusing, feel good neurotransmitter, serotonin. This slightly damaged gut lining, sometimes referred to as the “leaky gut syndrome,” also allows some undigested food to pass through into the blood stream, and food allergies are created. The longer this unbalanced environment is allowed to continue, the more allergies that will be created. With this knowledge, what could this mother do to help her child feel better, act better, and learn better? She knew he was a smart, good-hearted boy, who wasn’t happy with the way he was acting and learning.
So that brings us up to now… And I had tons of things to do. I was very much on the right track with the no milk thing. She never did say how long he would have to be off of it, or if it is something he will outgrow. Guess every child will be different, in how they respond. We had him off milk for 6 weeks, and then let him have it again. Then, if they react, you know if that is what it is… well, in 2 days, of eating milk products, we could see the difference, and as much as he wanted CHEESE, we had to tell him NO. Now we are able to pick it up in just a few hours time, when he’s had some milk, of any form, in anything. He becomes fussy, whiny, easily upset. Complains of a bellyache… ect. Ect. So we really watch what he gets, which is kind of a pain, but is worth it in the long run. We tell him, “when your belly feels better, then you can have cheese and milk again“. So now often he’ll say, “Tomorrow, my belly feel better I have your cheese”. Son, I wish it could be tomorrow that you could eat what you want.
We were very amazed at the change in Collin, in just a weeks time!! He was much calmer. Doing things like walking in the barn, with out freaking out over the BIG cows. Just asking me, “You wait on me?” When we are heading out the door, rather then panicking that I am leaving without him. Going outside to play, ALONE!!! That was a major step, he would never do that before. Someone, anyone, had to always be with him! Now he’ll go play in the sand box, play on his pedal tractor, go to the basement alone… I thought it was just my kid and his own quirks… WOW, is it nice to have a more “normal” kid.
As for how he got to have so much yeast in his body, is anybody’s guess. I don’t really recall him being on an antibiotic, but he possibly was when he had whooping cough at 1 1/2yrs. Old. Both Jevan and Collin got VERY BAD diaper rashes when they were tiny babies. I would fight it for a week or more, just to get it back again. Dianne had also made mention that some children are just prone to have yeast. So I am guessing that, that is my kids. I give them acidophilus 3x a day, in the powder form. Mixing it in a drink, or food. It doesn’t have a flavor, so they don’t even mind.
All, in all, God has been with us, and I am so thankful for all He has shown us these past months…
Today–As I read back over all this and remember what we went through… I am just amazed!!! We have come along way!! And God is so GOOD!!! He has been faithful every time we needed some fresh idea, or encouragement to go on. And Collin was able to be off milk and milk products for a year. Yes, there were times he greatly missed his milk foods, but now days you can buy alot of things- soy ice cream (though I wouldn’t buy that anymore.), and Almond Milk were then main things we bought just for him. Other wise we just changed our diet. So last summer-Aug. ’09, we slowly let him start having milk things again. And we didn’t see much change in behaviour. I was so happy, but he was DELIGHTED!!!
But now, the past month or so, I’ve been seeing a change in him again… so I was on the ‘War Path’ again. And wondering which avenue to take this time, praying about it. It’s amazing the way God leads to hear, see, read things that you need at just the right moment. Just this morning I got a blog update via email and in it she had a link… following it was just a ‘God thing’!! My hubby had reminded me that I was not giving the boys their Acidopholus like I should have been. And that maybe causing the problem. My baby has been suffering a yeast infection and I’m not getting on top of it very well. Even though I am using Miracle Salve. So I know the problem lies much deeper.
I was wondering if I should be thinking of Celiac Disease. So was doing some research on it. But was really dreading the whole idea of that type of diet change. I was praying God would direct my steps. And I know that He has, and still is. While I don’t feel I have ALL the answers at this point, I know I’m taking the right steps. Albeit ‘baby steps’. And steps of faith, that it will work.
I have been following Kitchen Stewardship for the past 4-5 months, and have been greatly blessed and challenged. I will say I don’t agree with everything on her blog, though I do apreciate her encouragement to be aware of what we eat, where it comes from and what it’s made of. The other day her post had a link to this blog post, and it was just the encouragment that I needed. I don’t have to go down the road of Celiac Disease, I can just ‘clean up’ the foods we eat!! It reminded me so much of what we had went through with Collin, and I’m so thankful we found answers that year. (God is so good!!!)
So now the steps I have been taking, of making my own foods, ALL from scratch, has just been stamped that much deeper in my heart to do. I am giving my boys liquid Acidopholus 3 times a day, to try and get rid of the yeast. I want to limit sugar and wheat, but I know I need to take babysteps in all of this as I learn.
I know too, there are those who think me strange, and wonder why I have to do such drastic measures. When I first started on this journey, I too, wondered why I needed to be the one to step out of the main flow of life, why I had to be different. But as I’ve learned and studied, it amazes me what all we eat that is NOT food and what the stuff is doing to our bodies. I’ll gladly keep learning and changing things slowly. It’s not something that can be done overnight!!
Above all I am so Thankful for a Father who lovely guides my feet each step of the way.