Neurological Impacts/LBS (Melissa & Fred)

[Tammy]

Kristen,
Very very well explained.
Your point on the liver not cleaning all the toxins out of the blood is what the old Dr's told me caused Regina's other handicaps. Basically that it was so severe that it caused brain damage, which is what Cerebral Palsy is. But of course now they are backpedaling on that and saying well maybe.......maybe not as there is one symptom that she was born with. (It really doesn't matter to me at this point as we live with what we have regardless of how it was caused.) She did gain and improve as she got older, just at a very very slow rate. And she never went backward, just forward so very very slowly. The same way with her weight. Never lost, just gained slowly. Looking back, I'm sure the diet did speed up her progresses, but it wasn't something that was considered back then. And my memory sometimes tells me what I want it to tell me, so I usually don't make that comparision as I can't be sure. Also there were other changes in our lives around that time that could also have been the reasons.

As for the corn issues. I can't tell you how or why it works this way. I have no logic behind my answers. I only have what works for Regina and what doesn't, and why I do it this way. Again......(As if you've haven't heard this statement enough) way back in the beginning.......I didn't have any other resourses to find this info out on my own. I had to rely on a very nice, helpful dietician who did all the research for me. It's her answers that I go by. And they were.....Corn is no. But ALL corn products are ok. corn meal, corn starch, corn sugar, corn oil, corn flour, all ok. Now this doesn't actually make sense to me, either, but it's the way it works for us. Her explanation was that is was only the bran of the corn. I don't know what, exactly, she was referring to, and I don't know why it isn't present in any of the by products of corn. I didn't think to ask then, and I can't now. When this site was first started by the Grace's, I told her this statement about the corn products, but told her to check with her own dietician. She came back later and said that yes, she agreed with my old one. She would be the only one that I would know of that could maybe shed a little more light on this? Kelly? Do you know?

As for popcorn, I didn't ask about this until she was older. And my very helpful person had retired. The one taking her place was never able to give me a good yes or no, so we never tried it.

I don't know what Ultram is either.
Tammy

[Chelsea]

fred said:

In addition, I'd like to say just one thing here. If you have a child with HFI, the very best investment you can make for their well being is to purchase a bread machine. For spending less than ten minutes per day, (or maybe every other day) measuring and putting seven ingredients into the machine and pressing the "Start" button, you will produce a loaf of safe homemade bread that can eliminate the threat of a constant small daily but harmful source of sucrose and provide him or her with a quick starchy source of safe energy.

The timer just went off on her Sunday loaf. I make it twice a week and am going to increase that and start making bread for the whole family. It was one of the first things I read from you Fred and I bought ours approx 9 days after diagnosis. I love it!

[Nancy Randall]

Ok, with all the talk about diagnosis I have a question. Did any of you who were diagnosed HFI with a liver biopsy or DNA test also test positive for a breath test? We were told that my son does not have HFI but, the only test he has had is the breath (tested positive). He does best on the HFI diet.

I have not tested his BS but, I think I will start.

So, something I have not mentioned before is that we know my husband also has fructose issues. He has not been tested but, after looking at the diet last year when we started we relized that foods he does not like or limited in his diet naturaly were ones that were issues on the HFI diet. Now following the same diet he feels much better. When he does not follow the diet (like yesterday at the fair) he will not feel good and makes a few extra trips to the bathroom. He also said that he feels fuzzy headed, tired, ect...He is planning to see his doctor (same as my sons) and discuss testing for him.

thank
Nancy

[Tammy]

Kristen
As for your "big tangent", no I was not aware of that. I really know very little about preemie issues as Regina was full term. (Born on her actual due date, and described by her Dr as being about 1 week late.) She has never been DX as CP. Only ever called CP type symptoms, possibly due to HFI. But as CP is really only any form of brain damage, they now call her CP. Her cerebellum is actually phyically smaller than normal. Was it when she was born? unknown. Was it caused by HFI and all the toxins not allowing it to develop? again, unknown. All that is known is that she seemed like a perfectly normal baby, except she was a "floppy" baby. She didn't stay all rolled up in a ball, she was just "limp" and relaxed from the time she was born. Breast fed for 4 months. Then put on a formula that was, just by luck, fructose free. But I also started feeding her other things, such as fruit. By 7 mos she was in the hosp with the severe cirrohsis of liver. She didn't roll over until 11 mos of age, and didn't sit by herself until 2 yrs of age. She always stayed in the weight charts, but always on the small size. Actually in clothes, she always followed her age. At 6 mo, she wore 6 mos. At 12 mos, she wore 12 mos. At 4 she wore size 4, etc. Made it very easy for Grammy to keep track.

We started the diet at about 2 1/2. I really want to say her developmental "speed" did improve after that, but I just can't be certain. If it did, it was probably a year later. But then again, she still had to heal from being so polluted. And that would also be in the same time frame when we dumped her biological father (who thought she was an embarrasment) and later found the Dad who is still with us now. (and lives and breathes for this kid). So was it the diet? Or was it a lot to do with lifestyle changes? Or both?

With part of her brain being smaller, she also has something else. I forget the name, will have to look it up, but it is "the insulation" on the nerves not carrying the messages correctly to the muscles.

Her IQ was tested professionly at age 18 (I am her legal guardian, through the courts and it was needed for this) at 45.

She also has very pale, flat, disks in her eyes. Somewhere between 8 - 10 yrs they told me she had retinitis pigmentosis and would be blind by the time she was 12. Well, thankfully they were wrong. Her eyes have actually gotten a little better. She used to wear contacts that were -8.50 in both eyes, and now wears -6.00 in both eyes. She has improved to the point that I can just walk into Sam's club and pick them up, I don't have to order them anymore.

She doesn't have any bone, muscles weaknesses. We can walk with her, but we have to do the balancing. She can crawl, go up/down stairs, pull herself up and stand at a counter.

She does have osteoporosis.
She also has a small tumor on her pituitary gland.(again I forget the name of this, I'll have to look it up again).
Her overies are "gonads". They are just small round things. Not active and never will be.
She had a blood clotting problem last spring.
so......again.......are these unrelated problems? Or HFI related by all the toxins not allowing her to develop? I have accepted that we will never know for sure.

So.....I don't think this was really of any help, but you can add all her other stuff into your book of comparing all the kids. (Now read this with a smile as it is written with a smile. I am NOT a very serious person, and most things I write are intended that way, and I'm sorry when they don't read that way)
Tammy

[Tammy]

Nancy,
I'm not any help here as Regina was DX through a liver biopsy (she actually had 2, a needle first, and then through surgery since the first one wasn't big enough). But she never had a breath test. And her blood test was negative (this was done years after the DX, just to see)
Tammy

[Tammy]

Kristen
As for the adults being foggy, I never thought about it, but that could indeed be what the kids are doing. That is kind of the way Regina sometimes does. And sometimes worse than other times. Actually not much at all since she got out of school. hmmmm.
As for the rest of the problems, and are they just earlier from the tired body. I don't know. I'll have to let it roll around in this empty head tonight at work.
Tammy