Updates... sry a little long

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Jules1984's picture
Joined: 09/19/07
Posts: 15
Updates... sry a little long

Hey Ladies... I know it's been forever since I wrote here. I hope everyone's little one had a fantastic 3rd birthday! I have a few updates... and i would need you ladies to tell me if you know anyone who has experienced these things that I'm about to mention.

Firstly, Alexa was diagnosed with alopecia areata. She had a bad case of the gastrointestinal virus in the middle of April and shortly after started losing her hair in patches. She lost about 40% of her scalp hair so far. It looks like it stopped for the most part and we do see some regrowth, but the dr's say that it could take about 6-12 months to see any new results. We are applying a corticosteroid cream to her scalp in hopes that it would speed up the hair growth. Do any of you ladies know anything about this disorder? All I know is that it is an autoimmune disorder in which your immune system attacks the hair follicles causing them to fall out. Nobody in my family or my husbands have ever had this type of thing. We are worried that she may actually lose all her scalp hair... it worries me sick actually... I just want her to lead a happy normal life and having this disorder may make it harder for her to do that. I'm hoping the hair will grow back and that this will never occur again. The good thing about this disorder is that it doesn't affect her in any way... she still plays, laughs and is very healthy and it's in no way life threatening.... it's just hair. So if anyone knows anything about this... please share... I don't know anyone who has had this.

Secondly... As you may know I'm pregnant with my third and it's a boy this time! At our 19 week ultrasound we were told that his kidneys were mildly swollen... so they told me i needed to be monitored every month to see how they progress. I am now 26 weeks and they have gotten bigger... now they are considering me to be high risk. The good news is that everything else with the baby is perfect. We did the Integrated Prenatal SCreening at 12 weeks and were told that the chanced of Down's is 1 in 33000 and 1 in 22000 for trisomy18. They did a level II ultrasound to rule out anything else and thank God found nothing other than the kidneys. The bladder is good... and the amniotic fluid is also good, I guess those are the things they look for to ensure that the baby is peeing. Anyways at our last ultrasound the right kidney measured 15mm and the left 11mm. These are really high numbers and the doctors think that the baby may have an obstruction in the ureter and baby may need surgery shortly after birth. Has anyone ever dealt with or heard of this kind of thing? I just want this baby to be born healthy... I've been dealing with so many things these past few months and I'm trying not to stress out about htings (And I think I'm doing a pretty good job about it) but it is hard. If you read this far... thank you... Hope all you guys are doing well...!

So, I can't remember if I mentioned we went to see a Naturopathic doctor concering Alexa's condition. We ended up doing an allergy/mineral absorption test about 3 weeks ago and just got the results yesterday. Apparantly she has a severe dairy and egg allergy. The Doc thinks that this is what could have triggered her alopecia areata and that once it's fixed her immune system should get back to normal. Her body is taking "healthy" cells from her hair follicles and using them in the GI tract. She does have a bit of a distended tummy... but I always thought was just toddler belly. Our family doctor never seemed concerned about it so we didn't take it any further. She did have that epigastric hernia which was repaired last September... so all this ties in to her allergy. I have to eliminate these foods from her diet which is going to be very hard as she LOVES cheese and yogurt and eggs. Anyone elses little one have milk allergies that have good recipes they could share? I think I may need to go to a book store and get a specialty cookbook of some sort. It's hard because milk and egg are in everything. Anyways thanks for reading and thanks for all the hugs. We really appreciate it!

baby_schultz's picture
Joined: 04/12/07
Posts: 122

I am sorry that you are going through all of this... it is never fun when things go wrong with our kids...

all I can say about your DD is i know it will grow back but it might take a long time... my best friends mother and brother had it happen a few years ago and since then only her brother has had it come back...

I am sorry about your little man... I hope when he makes his way out all will be ok... and nothing with be major....

sorry I was no real help...

Jules1984's picture
Joined: 09/19/07
Posts: 15

Thanks for replying... it was very comforting to read your post. How old was your friend's brother when he got it? Did they lose alot of hair? I really hope her hair grows back and it never happens again to her. If she was a boy I don't think I would care so much cause it's easy to just shave it all off... but she is a girl and hair is pretty important to girls especially as they get older. I'm just praying and hoping it doesn't progress to Alopecia Totalis (all scalp hair) or Alopecia Universalis (all body hair)... I know these two are extremely rare... but we really never know what happens.

Thanks again for your reply... you really did make me feel a little better!

wlillie's picture
Joined: 09/17/07
Posts: 1796

We were told the same thing about Jason and his kidneys but it straightened out after birth. He had ultrasounds done a few times and the problem had gone away.

Sorry about her hair. Hopefully it goes away completely.

baby_schultz's picture
Joined: 04/12/07
Posts: 122

"Jules1984" wrote:

Thanks for replying... it was very comforting to read your post. How old was your friend's brother when he got it? Did they lose alot of hair?

He was a teen... but it was like it happened and it was gone...
he didnt lose much hair... but like you said he is a boy and boy hairs is ok short or none at all...

Have you tried hats or even bandanna things for her... that is if she will keep them on her head...

I would love to try and make her some of these if you would like... i could even ask and see if my sister has some summer crochet hats....

http://www.etsy.com/listing/75422323/fresh-poppies-on-ivory-bebe-full?ref=v1_other_1

http://www.etsy.com/listing/74334296/little-owls-bebe-child-headscarf?ref=sr_gallery_31&ga_search_submit=&ga_search_query=hair+covers&ga_page=10&ga_search_type=handmade&ga_facet=handmade

Jules1984's picture
Joined: 09/19/07
Posts: 15

wlillie - yeah apparantly it's a common problem especially for boys. The problem is, is that my doctor is now saying that it is severely swollen and that when it gets to that point, it's more unlikely that it will fix itself. I'm still praying that it does though...

baby_schultz - she does wear hats only outside though. The hairloss doesn't bother her... and I don't want it to bother her... so I don't want to bring attention to it. If I keep trying to cover her head she will know that something is going on... and will catch on eventually. She is already asking questions as to why I'm putting cream on her head and not Tiana's. Thanks though... it was very thoughtful of you to offer to make those for her.

SunDevil28's picture
Joined: 04/30/07
Posts: 496

I don't know much about Alexa's condition but I just want to send you big hugs, it sounds like you are dealing with a lot lately. Sending you prayers and good thoughts for your little guy as well.

Jules1984's picture
Joined: 09/19/07
Posts: 15

Thanks Andi Smile

mjones6102's picture
Joined: 11/06/07
Posts: 535

I'm sorry you have so much going on. I couldn't imagine having to deal with one of these things, let alone all of them together. We are always here for you.

I will be thinking about you and sending positive thoughts and prayers.

scarecrow's picture
Joined: 08/21/04
Posts: 67

I'm so sorry you're going through all this. Just wanted to send big hugs.

:bigarmhug:

Jules1984's picture
Joined: 09/19/07
Posts: 15

Thanks ladies... Alexa's hair is continuing to fall out slowly... I do see some improvements but I don't like to get my hopes up. The "regrowth" that I thought was regrowth is actually not. It's what they call "explamation point hairs", however I did see some true regrowth just before putting her to bed... so I'm hoping that spreads to all the affected areas. I just keep praying everyday that we stop seeing more hair falling out and start seeing more regrowth.

As for the baby... we just had another ultrasound about 3 days ago and the high risk doctors seems to think that it's nothing serious and that it most likely is just reflux which can be fixed with antibiotics or a minor surgery. We did get some good news this week so my mind is less stressed. Thanks alot for your thoughts and prayers, they really mean alot to me.

SunDevil28's picture
Joined: 04/30/07
Posts: 496

Well it seems like all you can do in both situations is just take things day by day. Hugs to you and your family! KUP

mjones6102's picture
Joined: 11/06/07
Posts: 535

I'm glad the doctor thinks it is only a minor issue if anything. Hopefully the regrowth will continue. Still sending lots of positive thoughts and prayers. KUP

lablover1's picture
Joined: 12/13/08
Posts: 44

hugs

Joined: 03/16/15
Posts: 53852

Ryan was born with UPJ or obstructed ureters. They followed me through my pregnancy with ultrasounds and kept saying that his kidneys were an 'impressive case.' They were so swollen at the end that they asked to use his films as teaching materials at one of the hospitals.

He had his first surgery at 4 weeks, lasted about 4 hours and he was in the hospital for 3 days. He came home with a small drain that was removed a week later. He had his second kidney operated on at 6 months. He only stayed overnight that time. He came home and I laid him on the floor and he started crawling around. Never seemed to bother him at all.

We go every 6 months now for ultrasounds and he has never had an issue. The kidneys are perfectly normal and they expect them to stay that way. After our next appointment he will move to one year checks and then 5 year checks.

I wish you luck with the baby. Sorry if this is more information than you wanted but I wish someone has told us what to expect. If you want more specifics on everything that happened PM me.

Jules1984's picture
Joined: 09/19/07
Posts: 15

patrical - thanks for the info and your experience with this. I like to hear what people go through. When our baby boy is born he will be taken to the NICU to be assessed and to make sure he is peeing. They will do ultrasounds and other various tests, to make sure that all the pee is draining from the kidneys to the bladder and out through the urethra. They're not worried about it... they said that it could be either a reflux or a tiny valve at the end of the urethra (that shouldn't be there). If it's the reflux depending on how serious it is, they would give him antibiotics or do a small surgery to fix the faulty valve. If it's the tiny valve at the end of the urethra then they would have to do surgery right away and remove it which is a very simple surgery which is almost like putting a catheter in. I'm not too worried about this... I just hate the fact that he's not going to be staying next to me in my room when he's born, the good thing is, is that he is just accross the hall.

As for Alexa... we shaved her head yesterday. The hairloss got too extensive that it just looked bad to keep the remaining hair there. The good news is, is that she has a beautifully shaped head and that she has about 65% regrowth all over her head. She is not complaining about her new hair... she actually loves it. I just hope she stays that way. Her hair is starting to grow back so we are just hoping that it stays and that too doesn't fall out. This condition is so unpredictable... I hate it and it's driving me insane. I cried like a baby while she was getting her head shaved yesterday (thankfully she didn't see me). It was hard to see it all go away... but she was happy and having fun with the clippers. Her sister doesn't seem to notice that there is anything different with her which is a good thing. Thanks everyone for your support and hugs... that's my update Smile

Jules1984's picture
Joined: 09/19/07
Posts: 15

patrical - do you remember how big his kidney's were? At our last ultrasound, which was on Monday, the right one measured at 20mm and the left measured at 10mm. I'm just curious what an "impressive case" would be. Thanks!

Joined: 03/16/15
Posts: 53852

Jules, :hugs: to you and Alexa.

Unfortunately I can't remember what his numbers were. I just remember that the kidneys looked like huge black balls on the ultrasound.

Ryan went into the NICU also. He had bloodwork to check his kidney function and ultrasounds to watch the fluid levels. We had to save his diapers so that they could weigh them to see how much he was peeing once he got onto the regular floor. He was in the NICU for 4 days, the hospital for 5.

mjones6102's picture
Joined: 11/06/07
Posts: 535

That's good news about the regrowth. I hope it continues and gets better. Thinking about you guys a lot.

Jules1984's picture
Joined: 09/19/07
Posts: 15

So, I can't remember if I mentioned we went to see a Naturopathic doctor concering Alexa's condition. We ended up doing an allergy/mineral absorption test about 3 weeks ago and just got the results yesterday. Apparantly she has a severe dairy and egg allergy. The Doc thinks that this is what could have triggered her alopecia areata and that once it's fixed her immune system should get back to normal. Her body is taking "healthy" cells from her hair follicles and using them in the GI tract. She does have a bit of a distended tummy... but I always thought was just toddler belly. Our family doctor never seemed concerned about it so we didn't take it any further. She did have that epigastric hernia which was repaired last September... so all this ties in to her allergy. I have to eliminate these foods from her diet which is going to be very hard as she LOVES cheese and yogurt and eggs. Anyone elses little one have milk allergies that have good recipes they could share? I think I may need to go to a book store and get a specialty cookbook of some sort. It's hard because milk and egg are in everything. Anyways thanks for reading and thanks for all the hugs. We really appreciate it!

wlillie's picture
Joined: 09/17/07
Posts: 1796

I'm so glad they figured it out and no advice, just hugs on the allergies.

mjones6102's picture
Joined: 11/06/07
Posts: 535

I'm sorry about the allergies, but hopefully it is something that can be fixed (even if it will be difficult). I hope her hair continues to regrow and you find some great recipes.

angelover02740's picture
Joined: 07/10/07
Posts: 1342

Im sorry to hear what your going through.. i have no advice but i have to give to u and your family. KUP

SunDevil28's picture
Joined: 04/30/07
Posts: 496

How are things going now?

Jules1984's picture
Joined: 09/19/07
Posts: 15

Thanks everyone for all the prayers...

Well... as I said in my last post Alexa did have alot of regrowth. As of a few days ago though it has all started to fall out again. I think we just have to accept the fact that this is the way she is meant to be and just try to build up her confidence for the future. Right now she doesn't know any better, but when she starts school it's going to be difficult for her. She only has about 45-50% of her hair now. She lost all the hair on her back (peachfuzz) and her eyebrows and eyelashes are starting to thin aswell. Just talking about it makes me really emotional and I really don't know if I'm going to be able to handle it all. I just want her to grow up happy and love herself for who she is, but I feel like I'm going to fail. I tell her how beautiful she is... I tell her how smart she is... but I don't know if that's enough. I just wish I knew someone who was going thorugh the same thing... I wish I could talk to someone who went through it as a child so they can give me some pointers. It's heartbreaking to see the little hairs that she has fall out more and more... I'm at a loss of what to do and I feel like I'm failing her. I'm sorry... I know I just vented a bit there... but it helps me to talk about it this way because I spend so much energy during the day holding it all in.

As for my pregnancy... I'm due any day now. Tiana was born 2 weeks early so I'm hoping this guy comes early aswell. I'm getting really tired and I need a break. At least when he is born I can stop thinking about his kidney issue as I would know what exactly the problem is. I hope it's soon... so if anyone know of any good ways to induce labour... please share! Thanks again everyone!