Vasileva JUlja on February, 25th 2001 12 : 11 : 32 My daughter, 4, is sick fenilketo...

[Vasileva JUlja]

Vasileva JUlja on February, 25th 2001 12 : 11 : 32
My daughter, 4, is sick fenilketonuriej. Received special power supply, but 3 his months do not give. A diet it is made, but it is required the help of the expert. Where it is possible to find structure of products on amino acids, and tochnee-the maintenance or contents fenilalanina in products? If somebody knows eto-send the answer on mail-lara_kesher@comint. net

[Talanova E.J.]

Dear JUlja! On the given question it is possible to consult at dietarians in Institute of pediatrics and children's surgery MZ the Russian Federation in L.Z.Kazantsevoj's unit (unfortunately, there are no near at hand phones - if I shall find, I shall add later).

[Natasha]

If you have an opportunity to arrive to Moscow, address in MNII Pediatrics and children's surgery on Taldomskoj, 2, in unit of genetics. Manager. Unit Shilov Adolf Valentinovich. There it is observed and treated much detok with FKU. And a delivery there give out free of charge while lay in a hospital. There is special doktor-the dietarian - Kopylov Natalia Vladimirovna, she is engaged immediately in development of a diet with FKU. And still I can give phones of representations in Moscow firm-manufacturers of a delivery (MeadJohnson - fenil-free, lofenalak). There it is possible to get a product (for condanguinity, it it is natural). And that you want, on ggsudarstvo it is possible to rely not always. My child too needs a delivery, we get it or him for money, and considerable (the bank 90 $, suffices for 2 weeks) and what to do or make? Our disease, it appears, only 2 cases in Russia it is registered. Too it is impossible any fiber + a hydrolysate without Leucinum. Still it is possible to address in 6 ju a children's insane hospital in Moscow (Don per, 5) in unit of genetics. There too distribute a delivery for FKU, and not only (cookies everyones, macaroni and so forth) It is necessary to ask a hydrolysate, but also special protein-free products the senior nurse, she in it or this is engaged. More shortly if the information interests, write on natem_igor@mail. ru
Natasha.

[Natasha]

Small addition. If it is interesting, you (can, I shall look for coordinates of friends which live in your edges or territories and at which detki with FKU) write, whence, at me is familiar with FKU from different places. Vyby have communicated, can, they have any materials. And in general, me our dietarian promised to send one of these days on a mail of the tablet of products low biological value, still promised to allow to esteem for a while the book " a delivery of children with FKU ". It or her anywhere nelhja to buy or purchase, but for a while she promised vse-taki to leave. I could to you koe-what send, write more in detail, that you interests. And still, for example, in Germany (in Frankfurt) in drugstores is on sale mini-computer PKU-diet computer. There, probably, a database, also it is possible to count the menu. It is very convenient. If there is an opportunity to go to Germany or to ask somebody, your life would noticeably be facilitated. That you will not tell or say about our disease. Do not lose courage, and it is obligatory!! Get a hydrolysate as in your tender age it is a unique source of high-grade fiber, and he is irreplaceable for body height. If will be only on one diet at your disease it is possible only 0, 5 g/kg/days of fiber, and it a little. Excess of the specified norm or rate is fraught with an aggravation of symptoms. Therefore use the best efforts, and girolizat it extract or obtain. (without a delivery but only on a diet) it it is possible to do or make such experiments with already greater or big detkami (11 12 years). And more: yet do not eat a hydrolysate, on a regular basis hand over a blood on FAL, it is very important.

[Talanova E.J.]

To Natasha: Many thanks, Natasha! You are informed much better, than many doctors! Health, success and successes to you, Igorku and all your family!

[Talanova E.J.]

JUle: Dialogue with Natasha and other mums detok, sick of hereditary diseases of an exchange, - an output or exit and the huge blessing for you. Ph. MNII of pediatrics and children's surgery (record on consultation) - 483 41 83. Shilova A. 's Ph. - 483 20 92.

[mail-lara_kesher@comint. net]

My son is sick fku, now to him 3, 5 years. How you consider or count, what level FA in a blood, should be at patient FKU? Natasha

[mail-lara_kesher@comint. net]

My son is sick fku, now to him 3, 5 years. How you consider or count, what level FA in a blood, should be at patient FKU? Natasha

[mail-lara_kesher@comint. net]

My son is sick fku, now to him 3, 5 years. How you consider or count, what level FA in a blood, should be at patient FKU? Natasha

[mail-lara_kesher@comint. net]

My son is sick fku, now to him 3, 5 years. How you consider or count, what level FA in a blood, should be at patient FKU? Natasha

[mail-lara_kesher@comint. net]

My son is sick fku, now to him 3, 5 years. How you consider or count, what level FA in a blood, should be at patient FKU? Natasha