My children are losing their hair. Please help!

Daughters blood tests have come back, just waiting for the trichologist to look at them. GP says there fine, but there are some notes mentioned on there of concern to me.
Have been annoyed with the school. Sent a note to notify that my daughter would like to wear a hat as she has lost all the hair from one side. Teacher rufused.... Grrrr... had to speak to the principle to get permission. Only in the case of a medical condition she says.... ummmmmmm sorry didn't you see her hair? What comes under medical condition? 'Is she pulling it out' she asks? Well if she is, does that then make it a medical condition? Or do I need a note from the doctor stating the obvious? She ended up granting permission but after all that, my daughter ended up not wearing her hat because she had to wear her broad brimmed hat instead of the beanie she bought with her and she started getting questioned as to why she was wearing one inside. Can't win!
My son on the other hand was told right from the word go that he had permission to wear his, even though they go to the same school.
Ok, sorry, was just so annoyed and needed to vent. Powder is so far not helping. Sons hair is growing at the back at this stage (about the fourth time it has grown back) but he has a huge bald spot at the top... and trying to get my daughter to take hair skin and nails tablets is like extracting teeth. I bought a tablet crusher but still no avail. Took her 20 minutes this morning to drink it. Think I might end up bald from pulling my own hair out in frustration. To top it off, the both of them can't say anything nice to each other in the last couple of weeks. Even getting detentions at school with their fighting. Taking them to see paediatrician today... we'll see what he says!

Oh :hug:
While I can't speak for your son. I know exactly what you are going through with your daughter.

I have a friend with a 6.5 year old daughter who does the same. She sucked her thumb from birth & from a very early age the fascination with the feel of hair came into it all.
She would find a hair on the floor while crawling & wrap it around her thumb & suck. Apparently the 2 of them can go hand in hand. Not sure if your DD sucks her thumb or not?
She started pulling her own hair out at about 3.5 to 4, during a stressful time in her life, & hasn't been able to stop.

While they are trying to use the nail polish that stops nail biting for the thumb sucking, they are actually trying to use vanity for the hair pulling. She has next to no hair on top, but its shoulder length at the back. So every day they will plait her hair & put bows & things in it, with a head band to make it pretty. That way she doesn't want to mess it up by pulling it.
They stopped talking about it. If they see her twisting her hair they just distract her. Talking about it brings attention to it & makes her think to do it again.

Just before she started school they shaved her head. They hoped that if she couldn't get hold of her hair to twist/pull it, hopefully she'd be out of the habit before it grew back. Sadly didn't work. Maybe if they'd kept it that short they might've got lucky, but they felt horrible enough doing it, they didn't want her going to school with no hair at all for so long. They are trying to decide now though if they should shave it again. Just so its all one length, since the very bottom/back is quite long, but the rest is so short.

I don't know if any of this will be any use to you, but maybe you could try some of these things?
Its a hard battle to fight. Their's has been going on for over 2 years now. I'm not sure if their lack of progress is coz she's not too worried what the other kids think yet, since they haven't made a big deal out of it, or not, but I'm hoping they have some long term progress soon.

I hope this has helped in some way. Even if its just to know you aren't alone.
Goodluck.

Hi Clover,
Thanks for your reply. In a way it helps to know that we're not the only ones going through this. On the other hand I don't like hearing that others are going through it aswell, it's not easy trying to deal with it and making decisions as to what to do next. There is not a lot of support from doctors, they just send you off again and again with different types of creams, I must have tried about 10 different types. I think I have an inkling to the underlying causes and I am hoping that the paediatrician might shed some light on this subject. I think it might be to do with Connective Tissue. I have spent many hours researching on the net.
I know your friend is going through a tough time. We shaved my sons head, but being a boy, not unusual. Although even with his head shaved baby bum smooth, you could still tell where the hair was and was not growing. It is a hard decision to make, especially for a girl. We though that if we shaved the head, it would come back stronger. But that was not the case. With his hair now starting to grow back a little, it looks like someone has taken the clippers to him and had some fun shaving just little sections. One of the doctors I went to thought that I had done this.
I like the idea you posted about the head band, I will look into getting the thickest one I can find to cover my daughters - making sure it fits in with school colours so I don't upset the school :rolleyes:
Anyway, thanks for your post, it's good to read through fresh ideas. Thank you!
I noticed in your signature that you have a bub on the way, congratulations and I hope it all goes well for you and yours. Take Care.

Hi Gemini girl

My heart goes out to you for what must be a ver frustrating journey. I don't pretend to know much about anything, but I wondered if you've heard of Trichotillomania? The wikipedia article gives a good outline. It's just that if it is this (I think you said your daughter is pulling her own hair out?), you're probably better off with a psychologist than other kinds of doc?

Good luck with it all... keep us posted

xo

Thanks hun & good luck. My friend is actually about to have her second child in about 2 weeks, so they are kind of waiting for all that they've worked on so far to be undone.
Glad my post was of some use for you though :)

Surprised, thank you for your words. I have my daughter booked in to see a psychologist next week. I went to see the paediatrician today and he is even more confused than I am.

I got some silica tablets today, the lady in the chemist was really understanding, but I forgot about the head band DOH I knew I was forgetting something. I mixed the silica tablet + hair, skin, nails tablet with soft drink, probably not the best thing to be mixing it with but I had no cordial and it went down in about 2 minutes, much quicker than the 20 minutes that it took this morning and without the whining too... The hair, skin, nails tablets have silica in them but I wanted to boost the dose a little as it helps with connective tissue.

Still waiting to hear back from the trichologist with his opinion about the blood test results.

Clover I wish your friend goodluck with the new baby and hope she can get through this balding with her daughter.

Hi Gemini Girl,

Just wondering how you're doing and if you've had any breakthroughs with all this?

Surprised

Hi Surprised,

Thanks for asking after us!

I have had them back to the dermatologist a couple of times, the earlier one a few weeks ago, they ordered another skin scraping, and sent a request to the psychologist to investigate 'hair pulling' and report back. There was nothing from the skin scraping to indicate any fungal infection in either of my children and the psychologist has recommended further testing as their is no proof that they are pulling their hair out.

The hair loss is really quite bad at the moment. DD is meant to have hair slightly longer than her shoulders. But it is only thick and long on one side of her head. The other side is patchy and very short. The top of her head is quite short also, about 4 cm long which just sticks straight up. At the back, in the middle of the hair that I try to tie back, their is another chunk of short hair. So its not looking very good at the moment.

I am taking them back in to the dermatology clinic towards the end of August so they can do a biopsy. So still playing the waiting game at the moment, but it seems that the Tyrisone powder doesn't work, the silica, hair skin, nails tablets have not worked.

DS hair is not much better, patches all over one side but he has his head shaved every couple of weeks so it doesn't seem as bad as DD.

Danni

... i was just thinking about you a couple of weeks ago so i'm glad to hear there has been more follow up but saddened to hear you still really don't have any answers.

I feel your frustration through your post, geez i truly hope there is an answer soon so it can be treatable to be able to go forward with things.

As a Mum your doing an amazing job to do all you can to get some help and clearer answers ... All i can offer you for now are some warm big hugs to you from me :hug:

Hi Smiles,

Thanks for your support. I wish there was more I could do, but the fact of the matter is I am getting tired of it all. I was talking to DH tonight about it and we have decided to look for a wig for my daughter and have her hair cut off... So I will start looking into this, as I have no idea even where to start looking for wigs, and one that will fit a child...

Danni

Hi Gemini_girl
Just read your posts and I'm sorry to hear about what you are going through with your kids. :hug: I hope the specialists are able to give you some hope soon. When you look for a wig you could look at the cancer sites as they would have a lot of the wigs for children who are going though chemo... just a thought

Hi Ryatha,

Thank you for your suggestion, I will give that a try...

Danni

I had alopecia as a 10 year old and I was put in hospital so they could sort it out. I was given meds and that helped (mine was to the point of blistering on the bald patch that had the docs talking about skin grafting).

I know it is scarry for kids to go through and hope you get answers soon.

Just wanted to say, my daughter was not impressed when I sent her to the hairdresser yesterday to have her hair cut, to try to even it all out... but she was over the moon to receive a wig today. It looks beautiful and I have to say, its a very good investment. To see her smile the way she did. That smile has been hiding for a while. I haven't seen her hair look like that since she was about 4 years old... even though the hair loss only started just over a year ago, she wanted her hair cut before that so she hasn't had long hair for so long.

I took her to visit her nan and pop, she wanted to show it off to everyone.. nan barely recognised her lol but like me, was so happy and excited for her.

Now I just got to get the hang of putting it on for her...

... aww GG that bought such happy tears to my eyes to hear she is smiling from the inside out again, just beautiful and it was so worth you having a go at trying a wig and now you've got a happy smiley little girl :D

i don't know if you remember me telling you i worked with wigs in the past so yeh remember to wash it as you were directed to from the seller, and place it on say an upside down 2L empty Coke bottle to still keep it in a round/dome shape for it to dry naturally .. and always place it on the head from front to back when dry.

Smiles,

Thank you for that, she wanted to take it off when she was at nans house, and when I put it back on I was struggling a little, I got there in the end, but I was questioning if I was doing it correctly, I didn't even give that much thought in the shop, I watched the lady put it on and it looked so easy to do, she explained to me how to make sure it was on straight and so on. She told me to come back in a few weeks to get the special shampoo, she gave us a brush and a stand, and said if we have any problems, just give her a call, she was lovely, she said after about 6 months it might need some tidying up, she said just bring her in and they will fix it up, no extra charge.. they even gave me 10% off the cost of the wig :D

But the ultimate, is definately seeing the smile on her face

That's great news! So glad you've had something go right for a change.

Hoping you can get to the bottom of the problem in time as well. You're such a caring mum! Hugs :)

I would highly recommend that any parent who has a child with a hair loss condition should be seeing a pediatric dermatologist not a trichologist. Trichology can be a useful tool however it is not a medical degree and a hair loss condition can be caused by many different things. A dermatologist should be referring these conditions through to a pediatric dermatologist as well.