Catchin' Up

I had a phone appointment with Lib's doctor last week and went over all that has been happening with the antifungal, Diflucan. Dr. Bock wants Lib to stay on it as we have seen gains. He told me to cut back the dose if his reactions increase. He also told me to try giving it to him at different times during the day to see if we can get him to sleep. Last week, he only slept ONE NIGHT through the night, and then this weekend, he was up each night from 1:00 to 4:30 AM. Thankfully, last night he slept through the night and I had given him the Diflucan around 9 AM yesterday. So, I hope that the sleeping issue is now solved because I look and feel like road kill.

It's funny what the world looks like when you finally get a decent night's sleep. Liberty did not sleep for most of his life, so going backwards is hard. I don't know how I ever made it through all of those years of getting so little and constantly interrupted sleep.

Dr. Bock said he wants to make sure we get the yeast issue solved so we can get to the Valtrex which is to take down inflammation in his body. This is the whole point of doing the antifungal. Valtrex will make yeast go crazy. It's a funny thing, I never would have pegged Liberty as having a yeast problem, but, I am a believer now.

There is an excellent article I received this morning through one of my Yahoo groups I belong to, written by Dr. Amy Yasko on the viral connection to autism. Turns out that Streptococcus can also be a culprit in creating leaky gut syndrome. I never knew that. You can read her paper here: http://f1.grp.yahoofs.com/v1/UAynRybbJZrQ9qxn5GSFjrrN9i9R1GbyK2VCaLzMrkwmY2EzJkPk9BFWomLw49DRxXksRt6VqHL5jMMpJIahs3r_pGOlUmm5ylUfeQ/Twisted%20Tale%20of%20Thimerosal%20and%20Virus%20Paper.pdf

Speaking of Strep, I told Dr. Bock that Liberty had suddenly developed a perseverative behavior with seams in his shirts and seams in the clothing of others. I also asked him if the Diflucan increases urine output, because there were a few days that the teachers told me they went through a huge amount of diapers. He said there is a syndrome that can develop from the Streptococcal virus and he sent me a prescription for something called an ASO titer. You might have heard of something called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) http://intramural.nimh.nih.gov/pdn/web.htm . Not only did Lib develop the obsession with the shirt seams, he also had increased daytime urination, a lot of blinking, and then the problem sleeping - all listed as symptoms of PANDAS. So, we have to get this test to see if he had a strep infection that went untreated in the past few months. If not, I guess we can attribute the symptoms to the Diflucan.

If anyone knows anything about this whole PANDAS syndrome, please let me know. I do remember sometime in November, having a feeling that swept across my consciousness ever so briefly, that I should have had a Strep test done at the doctor's office. I think Lib might have had a cough or a cold or something. I was so proud that he has not needed a doctor since July, that it never crossed my mind to get his throat checked out, and no one at the school had Strep, to my knowledge. Last year, his teacher would tell me whenever another child in the class came down with it, so I would be sure and ask for a Strep test at the doctor's office. This PANDAS thing has me a little nervous. We don't need any NEW symptoms, for God's sake.

In the midst of all of this chaos with the Diflucan, Liberty is doing some really great things such as picking up new signs at lightning speed and signing spontaneously, giving the best eye contact ever, increasingly differentiated sounds and vocalizations, riding a bike on his own for the first time, stacking Leggos for the first time, using the potty and flushign the toilet, feeding himself with a spoon, and eating new foods. This is absolutely huge progress in a very short amount of time.

So, because of this, I did not put up a fight to stop the Diflucan, and I trust Dr. Bock to know what he is doing. I think we had the trouble we had at first because we started him off at 1 teaspoon a day right out of the gate instead of starting with 1/4 teaspoon and gradually building up. The other error I made was giving him the charcoal which really constipated him. My advice to anyone who is starting the antifungal treatment is to start out slowly and to ONLY give the charcoal if the symptoms are really bad, and then just a little bit mixed in with some unsweetened applesauce. It only takes a little bit for a small child and not two to three capsules like I had given him. Poor kid! And, to also keep the child's bowels moving every single day without fail because the dying yeast give off toxins and they need to get out of the body as soon as possible.

ANYHOO, here is some advice I could entitle, "Don't Let This Happen To You." When you go on this antifungal thing, it is important to not give your child YEAST! ha ha. Now, anyone could figure this out, but I was SO intent on finding new foods and textures for Lib to eat, that I continued to try to give him some gf/cf pretzels. Pretzels - think, "baked goods." On the label, "yeast" was listed last in very teen tiny writing. Well, what do you think happened? My son LOVED THE PRETZELS. The teachers were so proud. My husband even invented a sign for them which my son readily picked up. The thing is, he became rather obsessed with the pretzels which should have been my first clue. What can I say, when you are sleep deprived, you miss things.

So, when it finally dawned on me what was happening (and his symptoms were really pronounced on the Diflucan as you might imagine), I got a call from Lib's teacher at almost that very instant when the lightbulb in my head went off, who had called to tell me that they just discovered that the sign my husband came up with meant "vagina" in American Sign Language and they wanted to know if they should continue...so that was the end of the pretzels and thankfully the end of that sign. It's a diamond shape if you're wondering, let's don't go there.

So, Liberty looks in the garbage can every day now, the last place where he saw the pretzel bag.

Poor love. We replaced the pretzels with something called "Pirates Booty" which is puffed rice and corn rolled in spinach and broccoli powder, which I thought were totally nasty but Liberty actually ate them.

The other thing I have done is to go almost completely sugar free. I have begun using Xylitol in all of our recipes and I really like it a lot. I became enamoured with the stuff when I found out all its benefits. Turns out it is an antibacterial and can prevent tooth and gum decay. It also purportedly balances hormones and blood sugar. I'm trying it myself, taking a teaspoon a day.

Meanwhile, Lib's eating his graham crackers as a snack, and of course they are not as good without the brown sugar, but the xylitol still makes them sweet and the main thing is that Lib eats them!

So, all in all, I guess you could say I've been successful finally with the antifungal and with a diet that will support the destruction of yeast: Gluten free, casein free, yeast free, and sugar free. Not an easy task by any means, but we're doing it and surviving.

Are there any awards given out for this? I think we should have badges we can collect and display, like when I was a Girl Scout and got a badge for "Hospitality" or "Fire Safety" or whatever. Can we have some for Antifungals? Metals? Gluten/casein-free diet?

Don't cha think we deserve some kind of recognition for this hard work??!!