In January the Doctor suspects a cow milk allergy so a new kind of food & additional 'Graphite cream' for his skin... At the end of this month he seems to be doing a little better and his skin looks almost perfect.
Early February (2000) his skin is bad again a new cream seems to work and results in very soft & rosy cheeks for a few days but after this initial success his skin gets worse again. Jaimz is still hungry all the time and we feed him much more than should be necessary for a baby of his length & weight.
Medio February Jaimz now also starts coughing a lot and he breaths real heavy. Our family Doctor is sure this is the result of Jaimz' (supposed) cow milk allergy and immediately makes a hospital appointment for us with Jaimz' pediatrician for the next day.
February 17th: the Ped is also sure that Jaimz' problems are caused by a food allergy and subscribes antibiotics, different creams for his skin and yet another kind of milk powder: Nutramigen (hypo allergenic, cow milk protein divided into such small parts that the body doesn't recognize it as cow milk).
Jaimz hates this new milk and only starts drinking it after we add syrup to make it taste a little better (tastes & smells like cardboard). He keeps vomiting (has been doing that for days). His Ped advices (Feb. 22nd) to stop giving the antibiotics & start feeding Jaimz lots of small quantities. This seems to work and he doesn't vomit anymore. His skin (after stopping with the antibiotics) looks worse than ever though.
February 28th The Ped describes another cream. She's worried because he's lost so much weight, but he is finally drinking again.
March 3rd: Jaimz is fed 7 times a day and his skin looks perfect again. Finally our baby is happy!
March 16th: So is his Ped, cos he also has gained some weight (4,525 kilo - 56 cm). She advices us to continue as we are doing. Because Jaimz needs extra calories, she advices us to add extra syrup to his milk and also to slowly start introducing him to fruit & vegetables. One new sort of fruit or vegetable a time, then continue giving him this same food for 3 days and when no allergic reaction shows, we can give him a new kind of fruit/vegetable.
March 29th: Jaimz' physiotherapist is happy too, Jaimz is doing his exercises very well.
The next few months pass without any problems until early June, when the Doctor at the consultation bureau isn't too happy about Jaimz' weight. He's not gaining enough. So we are advised to add grain products to his milk.
In August Jaimz's a little heavier (6,030 kilo - 64,5 cm) and he's also learning to crawl, so the Doctors are convinced we're on the right track.
September: Jaimz is doing very well (4 teeth & learning how to stand & walk hand in hand with me) but he has foul smelling, very watery stool and his diapers overflow 4-5 times a day. The skin of his face looks perfect, but he still has some dry spots on his arms, legs & back.
We continue giving him Nutramigen & very fine structured (to avoid vomiting) other food.
December: at another weighting appointment at the consultation bureau the Doctor tells us she thinks Jaimz doesn't gain enough weight (7,1 kilo - 69 cm) and advises us to add even more calories to his food (extra glucose: Fantomal). His diapers continue to 'overflow'...

January: the speech therapist doesn't think (after some tests and because Jaimz is talking more & more) that Jaimz has dyspraxia. Jaimz has learned to pee on his potty!
March 20th: appointment with Dr. Hoekstra who's very happy to see Jaimz is doing so well (87 cm - 11,5 kilo & blushing apple cheeks)! He will look for more information on biopsies - Leukemia - bone marrow transplants - etc.
March 27th: blood test results are in: nothing has changed. Jaimz's liver's not performing for 100% but nothing to worry about. Faeces test shows normal fat % (with enzyme taking). So Dr. Hoekstra's very satisfied with everything (as are we!).
April 15th: Dr. Hoekstra & we agree on a yearly biopsy for Jaimz. Vitamin % in his blood is a little low, so we have to give him more additional vitamin A, D, E & K.
May 1st: we're moving to a new home in a new town.
May 6st: Jaimz goes for the first time to a pre kindergarten and he loves it!

June & July: Jaimz' speech is developing so well! Since he's started going to school we stopped with speech therapy, but at school he's learning so much more. He's talking our ears off! (Finally!).
After a lot of problems (fear of the unknown - unknown SDS - for the school board) we finally get Jaimz admitted for kindergarten & elementary school.
He'll start going there January 2004.

We've been through a lot with our little guy. A lot of worries until we finally found out why Jaimz wasn't (isn't) growing very well. Of course our worries didn't stop once we found out Jaimz has SDS, but at least now we know what is 'wrong' with him so we can deal with a known fact.
We also found out that Jaimz is one of 'the lucky ones' who doesn't seem to have a lot of SDS features and we hope this won't change.
Jaimz himself is a very cute, smart, happy little guy (& much loved) who's finally learned (and is still learning) to talk well. He seems to start realizing that he's smaller than other kids his age, so when he'll start asking questions about this, we'll give him the answers...

There's also a PART 2 of Jaimz's story, for reading PART 2 please click here!

Christel